HCV Positive

FIBROSCAN RESULTS

2007-10-29T17:08:00.000Z

I had the Fibroscan in June 07, (oops, sorry I haven't updated my blog for so long), the measurement they use is Kpa, I don't know what Kpa stands for but my stiffness score was 7.9 indicating some fibrosis and scarring. The registrar who was operating the fibroscan machine said that score was roughly the same as metavir F1 that I think is classed as mild fibrosis.

The registrar chap also said that a score of 25+ would indicate cirrhosis and in those circumstances they would recommend a biopsy to clarify the situation. I have included a measurement scale below if anyone is interested, but on the scale below it does indicate that cirrhosis may be evident with a reading of 17.6. The registrar was right in what he said, but perhaps didn't realise that I may be sharing information with others who may have a different reading than mine.

After the scan, when I later saw the consultant, (not the consultant I was booked in to see I must say, he had forgotten me and taken the day off!), he said that most of their patients would use the Fibroscan to check the liver annually as it was easy to see any differences from one year to the next with the scoring system. He felt that my result would indicate that there hadn't been much progress since my last biopsy roughly 7 years ago and therefore it would be acceptable in his mind that I would consider waiting for better treatments that may mean shorter treatment duration and better chance of svr.

I got a bonus as I was leaving this brief consultation as the consultant gave me a request card to book an appointment for another Fibroscan in 12 months. Yipee!

I did try to book the appointment immediately but the receptionist said their system didn't go that far ahead, but she promised she wouldn't forget and would put it on the system in 6 months time when she would be able to do this. I will be ringing her well in advance to ensure that it all goes ahead smoothly. I never expected I would get onto their annual fibroscanning list so I am delighted with this outcome, it will mean, as the man said, that I can easily keep track of any damage progression if I continue to defer treatment.

I have got to pay tribute to Jae the Mighty C here, (my friend from the hep c forum and a fellow blogger), because he was nothing short of a blessing for me during my trip to London and to the hospital. He met me yesterday at Richmond station and took care of navigating all the underground journey and the walk from station to hospital.

After my appointment we went to St Paul's cathedral which was wonderful, we prayed for good health for each other and for everyone suffering with hep c, Jae sent out special prayers for Rosi too who has haemophilia and hep c like he has. We lit candles and wrote out prayer requests for all with HIV and HCV then we popped them in a little box where I understand they are then prayed for again later by the ministry there at the catherdral.

The cathedral itself was spectacular and we had a little surreal moment when we sat in a small courtyard later at the back of the cathedral and this guy in a tuxedo, came gliding around the corner on a mobile grand piano, playing for everyone and anyone! LOL

Jae then kindly accompanied me to Euston for my journey home, a friend and companion above and beyond the call of duty. Thank you so much Jason you were so charitable to me, all I can say is that you really shine Jae and it was an honour to meet you and I hope we meet again in the future.

I got some further information regarding the fibroscan, the link was given to me by a fellow hep c warrior, Robert who has established a hep c knowledge base on two forums, on both the old hep c forum and the new Hep C Friends forum. Thank you Robert :-)

http://www.natap.org/2006/HCV/012006_02.htm

I also got the fibroscan table below from another marvellous lady called Nikki who moderates on the new Hep C Friends Forum. Thankyou Nikki :-)

As you can see from this table, my score of 7.9 puts me just above the cut off point of 7.2 for mild fibrosis, however I am still on the low side of moderate, so that's something to be thankful for.

Moderate(F>2) Severe(F>3) Cirrhosis(F = 4) ..........Moderate(F>2)........Severe(F>3)........Cirrhosis(F = 4) Cut off........7.2........ ................12.5................ 17.6 PPV ...........90 ..........................90.................. 91 NPV ...........52 ..........................80 ..................92 Sensitivity ..64 ..........................65.................. 77 Specificity ...85........ .................95 ...................97 PLR........... 4.2 ........................13.7 ................28.4

I don't have a link to the new Hep C Friends Forum in my side bar, I will have to update it sometime, but for now I will add a link here for anyone who is looking for advice and support or simply a friendly chat with others who understand what is it like to deal with hepaitis c as a sufferer or as a carer. I am sure you will receive a very warm welcome.

http://hepcfriends.activeboard.com/forum.spark?forumID=114015&p=1

The photo at the top was taken in Calabria, southern Italy in September 07.

Apologies for the lack of spaces indicating new paragraphs, but for some reason blogger is not allowing me to put in double line space?!

Good wishes to all who struggle with Hep C in one way or another, whether you have the virus or you care for someone who has the virus. Don't struggle alone, join one or both of the forums and get yourself a Hep C buddy. You know what they say, a problem shared is a problem halved.

FIBROSCAN

2007-06-21T22:24:00.001Z

Well since I last blogged I did attend the National Hepititis C Network conference in Derby with my partner Dean, we were only able to attend for the Saturday afternoon due to a landmark birthday for me on the Sunday, but it was fantastic to meet up with other bloggers and people that I had been speaking with via the HepCforum for a couple of years now, including forum patrons old and new, Ron Metcalfe and Martin and Carol Bolton. Nick Green and Vicky Gumbley had done a fantastic job putting on a large scale event for the NHCN and I am sure that the conference was a catalyst for lots of folk to think about setting up support groups and ways of raising awareness.

I hold all these people in such high esteem, simply because of the support they generously poured out when I most needed it. It was fabulous to finally put faces to the names of the many warm and wonderful folk who I have come to know through forum discussion and blogging about this miserable virus. (Whilst it may be our miserable misfortune to bear the HCV virus, one thing is sure, you are in the most excellent of company if you do have it). I am not going to mention all the people I met at the conference individually as there were so many I wouldn't like to offend anyone by omission and that is a possibility with the brain fog.

Moving on, in my last post I mentioned some odd and vague symptoms but forgot to mention one that I find very puzzling, it happens when I am drifting into sleep, I sort of have an internal jolt that I feel around the chest and diaphram, like a sudden contraction in the spleen and surrounding areas, a bit like when you have a shock but not quite the same, or a sudden release of hormones into the thorax, but whatever it is, it brings me back to awareness and may happen a number of times before I finally fall to sleep. It tends to happen when I am not feeling my best and started happened for the first time during my short spell on interferon and ribavirin combination therapy. Can anyone else reading relate to this?

I went back to see my consultant and saw the registrar instead, he asked me if I wanted to start treatment, I was suprised he asked me that as I understood my consultant was of a mind not to proceed with treatment at this time. I decided I would not let this confusion bother me as I have already had much experience by now of the misunderstandings that occur between patient and practitioner when third parties become involved and so I remained passive. What did suprise me further is that he said there would be an 18 month wait for anyone wishing to have treatment. In the end, without any prompting from me, he decided he would like to do a pcr to see what my current viral load is and I am interested to know what this is too, we also agreed to re-run the Cryoglobulinemia test as the last sample had spoiled as often happens when the blood sample is allowed to get cold before it reaches the lab, it is crucial the sample is kept warm..

When I went to have the bloods taken, this time I alerted the nurse that my bloods need to be kept warm until they reach the labs. I said, in a jovial but half meaning it manner, that I believed that some nurses would keep the sample warm by keeping vial in their brassieres, she said, 'they don't pay me enough for that love!' LOL. She told me that she would put the blood sample in a jar of warm tap water and ring the porter to come and collect, but that she couldn't be held responsible if the porter was delayed as often happened. I didn't know what to say to that, but if the test gets messed up again, I'll stick the vial down my own bra and wait for the porter!!! I mean its just not good enough that is it really? If I had been quicker on the day I would have kept the sample warm myself and stayed until I saw the sample go to the lab with my own eyes.

Ok so next on the agenda is the Fibroscan test at the Chelsea and Westminster hospital, London.

http://www.echosens.com/index_a.html

I feel very fortunate to be getting one of these on the NHS and finally have an appointment on Tuesday 26 June. As far as I understand the Fibroscan, like the Fibrosure blood test, is better at predicting the state of the liver at each end of the scale, ie, mild liver damage or severe liver damage, apparently it is not that accurate for middle of the scale predictions. As it stands now, liver biopsy is still the gold standard for identifying how much liver damage one may or may not have.

It will certainly be interesting to find out the results of the Fibroscan. I have been speaking to a lady on the forum who had a Fibroscan test carried our privately recently, the results revealed scarring and possible cirrhosis. However a later ultrasound scan showed no evidence of cirrhosis and the professor she sees informed her it was highly unlikely that she would have cirrhosis. So why are the two results so different? The lady tells me she has had her gall bladder removed and there would likely be scarring in that area after that procedure, the people who carried out the Fibroscan test did not appear to take that fact into account.

I found this story disappointing because even though I knew the Fibroscan was not 100% accurate, I had hoped it would be more reliable than that. Then on reflection I figured that it showed that the scan did indeed pick up scarring and that there are perhaps lessons to be learnt from this lady's experience by the Fibroscan machine operative and analyst. So on balance I still think it is worthwhile to have the Fibroscan test.

Dean and I decided we would travel down to London for the weekend prior to my appointment at the Chelsea and Westminster and spend a few days in the smoke. We will be staying with Dean's brother and wife in Richmond, so I am looking forward to that. We will be just a few days post summer solstice so long, light nights to enjoy. It might be nice to picnic in Richmond Park and I would also like to do a short thames boat ride around London Bridge area, we shall see. Dean will return to Manchester on Monday and I will stay another day to attend my appointment, perhaps even meet up with some people from the forum.

I will share the Fibroscan result in my next post. I pray it will be favourable and unambiguous.

Peace to all in Hep C Land.

IT'S BEEN A WHILE....

2007-03-29T14:59:00.000Z

Sometimes when you have had a run of feeling good, you kind of forget you have the virus, then.................

I have just had a wonderful, warm, month long holiday in beautiful Thailand. I ate well, exercised daily walking laps of the beach, had lots of rest and lots of sunshine for the duration. I could have sworn I didn't have the virus. I know the photo is of Luxor where we were in February, but I've yet to download my Thailand photos. I always seem to be behind with the photos, but hey, at least I'm managing to post them at all.

I have been home only a week and it starts again, but now when I get, what I suspect is a viral flare up, it has a few extra symptoms that only joined the circus after my brief affair with tx.

It's all vague and non specific and I am not prepared to go to my gp while she looks at me like I've got two heads and wonders, 'what the hell does this woman expect me to do?'

Basically I get a kind of internal numbing feeling that appears to follow nerve, or perhaps meridien, pathways, always on the left side, its not a static feeling, it is sort of like a moving wave, that always hits the same places in patches, the back of my arm, my neck, throat, chest, hip and thigh. What is even more odd is that for instance with my thigh, only the top outer quadrant is affected, same with my arm, it doesn't affect the whole of my arm. The sensation is uncomfortable and irritating, though I wouldn't describe it as pain I do wish it would stop and it hampers my performance. I feel it internally too, my left lung the roof of my mouth

The next thing that happens is that my breathing goes slightly out of synch and I feel as though, if I was a car for example, I would say my engine is misfiring. It is very difficult to control the breath at these times, I get very agitated and it is almost impossible to implement slow, deep breathing and I am aware of the numbing sensation in my left lung. I become sort of hypersensitive, to light, noises and movement too, I can usually still continue to work, but it makes life difficult and it is also anxiety making and my nerves feel shot.

Whilst I have had these symptoms this week I visited my local tesco store, they had rearranged the store, cramming a whole load of new refridgerators in there and typically making the aisles even more congested and harder to negotiate. What I noticed in my sensitive state was that as I walked in and began to walk alongside the bank of fridges, that I felt weak and confused. As I stayed with the feeling I realised it was the fridges and the humming that was coming from them, when I moved to other parts of the store the sensations were subdued.

So how about that? I am sort of pleased that I have been able to give some sort of description of symptoms, I am able now from familiarity to pick out specifics of some of what happens. As the mind is usually foggy and sluggish too at these times, a description of symptoms usually ends up as vague as, I feel odd, strange.

Other news is that I saw my consultant again in November, she reported my scan was fine but wanted to test me for Cryoglobulinemia as she said my rheumatoid factor was raised. We discussed whether it was useful to have a biopsy considering that the treatment option was not something we wished to rush into right now due to the reaction last time around. We agreed that I would give it some thought and let her know at my next appointment which was scheduled for March 07 but was cancelled by the hospital and rearranged for May 07.

In the meantime I contacted Sam from the Hep C Trust and got some info on where I could find Fibroscan testing equipment in England. I contacted on hospital and was told they could test me as a NHS patient if my GP referred me. Great! My GP agreed to refer, but I chased that up this week, only to be told that the referral has to go via the PCT to be approved for funding and that the PCT only meet monthly so that decision would be made whenever they next meet, which could be next week or 4 weeks away.

If I get the go ahead for the Fibroscan test, I may then, dependent on the results, back that up with a Fibrosure blood test which I would have to pay for. If these tests conclude that there is only mild inflammation then I may delay having a biopsy for a while.

When I called in to see my GP about this referral, the first thing she said as I walked in the door is, 'your cholesterol is very high, we need to do a test asap'. Well I wasn't expecting that, I wondered when she would have told me if I hadn't gone to see her that day, the last time I had been to the surgery was 7 weeks ago regarding a shoulder injury. I also forgot to ask how high was my cholesterol. Anyway I have that blood test tomorrow and I will start my 14 hour fast this evening.

The other thing about blood testing is when I was tested for Cryoglobulinemia, I am sure they are supposed to keep the blood warm after they have extracted it. I saw no evidence of this when I had my bloods taken in November, so I hope they have done it right. I have heard that it is quite a common occurance that with this testing people often get a false negative result because bloods were not handled properly.

Ok I wrote all that then got a call from my surgery to say they were finding it very confusing to refer me for the Fibroscan, it is all too complicated even for them! I do hope they sort it out. Whilst they were on the phone I asked about the Cryoglobulinemia test result, and surprise, surprise, they say they will have to run the test again as the hosptial suspect it is a false negative as my rheumatoid factor is raised. Well, well, more fun and games to look forward to in May when I return to the hospital.

Finally Nick Green is organising the National Hepatitis C Network annual conference 14/15 April in Derby. I would dearly like to attend if only to meet up with other forum members, the problem is that it is my birthday that weekend and so there is a major clash of interests. I have still not come to a final decision, but a lot of thought is being given on how to make it happen, I would so like to meet other forum members. Here's the link with the info for anyone else who may be interested to attend.

http://nhcn.info/nhcn_index

OK its been a long time since I have blogged, I just needed to step back for a while and then it became a chore whenever I thought about it. However today I got a comment from my last entry from Joeboy and I thought it is time to update, so thanks Joeboy for getting my butt into gear.

NEW CONSULTANT NEW START

2006-10-22T19:14:00.000Z

I went to see my new liver specialist, Dr Rachael Harry, 18 October 2006, immediately she dismissed my consultant, Dr Blahblah's claims about transplant and said she didn't think I needed to be assessed for liver transplant at this point from what she could see and from what little information she did have. I explained very briefly that I felt there were problems with my last consultant and she told me I would never have to see him again.

Dr Harry and I agreed we should start afresh from this point in time and she gave me a physical examination, palpating my abdomen and checking out the spider nevi, and arranged for a large array of blood tests and a ultrasound scan. The bloods were taken that day, the scan booked for 30 November and I will go back to see her, hopefully around December for the results, her secretary will write to me with the next appointment.

Dr Harry explained that although the ultrasound scan will not give a clear indication of inflammation, or damage progression, it would pick up cirrhosis if there was any. She suggested we wait for these results and then consider whether a biopsy would be the route to follow.

I mentioned the blood clotting problems alleged by Dr Blahblah, she said she had received no notification about that but would check my bloods for that too.

We discussed future combination therapy, she felt that as I had reacted so badly to the interferon the last time I tried treatment, she felt it was highly likely that I would have the same reaction if I tried again, even if we switched to another type of interferon. Again we agreed to look at the afore mentioned test results and consider what those reveal before we look at treatment, and although Dr Harry felt it was perhaps not the best thing for me to undertake treatment again, she did say that we would discuss it at that time and that she would take my wishes into account.

Wow! I have not been used to such reasonable and straight forward dialogue before. I immediately feel that I trust this woman and feel happy to be under her care. So that is a real load off my mind to say the very least.

I am going to try and move on from all the negative and damaging stuff that occurred with Dr Blahblah. I did draft a couple of letters to him regarding his claims, his care, asking for clarification on blood clotting issues etc., etc., but for now I have decided to just move forward for my own sake, so I deleted them without sending. If anyone reading this blog is interested, or concerned to avoid being under this man's care and attending a Manchester hospital, you may email me for his name.

There was lots of stuff I didn't ask Dr Harry because in sod's law style I felt quite unwell on the day of our appointment, fighting off one of those viral infections that are flying around everywhere at this time of the year. Next time I see her I would like to discuss where I would stand in regards to being considered for future new treatments should the Vertex VX-950 trials continue to meet their targets. I would like to clarify whether she would be able to administer VX-950 as a mono therapy in the face of my apparent interferon intolerance.

As far as I understand with these trials, there are 3 trials to consider. The first trials showed that 14 days VX-950 as a mono therapy significantly reduced the virus for nearly, if not all, the participants. Since then it is not clear whether further trials are in place to assess if the virus came back when treatment was stopped and/or to determine what dosage and for how long would ensure total clearance and SVR.

The second trial is to determine the efficiency of VX-950 in combination with Interferon and the third trial for VX-950 with both Interferon and Ribaviron. It appears that future treatments are looking to use VX-950 in combination with at least Interferon and that would not really help me, so I would like to hear much more about VX-950 as a mono therapy rather than a combination therapy.

Here's the link to the Vertex website for those who wish to read more about this current research with Telaprevir (VX-950), to give it its full title.

http://www.vpharm.com/hcvinfocenter.html

Apart from HCV I enjoyed a welcome sunny break with my friend Tina in Marbella, followed by a fabulous short break in Prague with my partner Dean. Apart from the sun, Marbella is same old, same old, but Prague was an architectural feast and I would recommend this destination for a short break to almost anyone.

I recently bought myself a new, digital camera and had ideas of sharing some of my photos on my blog, but my laptop has other ideas and will not recognise that my camera is plugged into it! I have tried rebooting the computer but it still doesn't recognise the camera, so what to do next? I'm not sure, I bumble my way through all this technical stuff, but maybe next time if I've sussed it out, I can show off my shot of a praying mantis sat on the gate by the swimming pool in Marbella or the medieval vistas taken from the Vltava river in Prague.

In the meantime and instead of the above, I have posted a picture of a part of the Rochdale Canal where Dean and I did a little cycling this summer. Lovely isn't it?

Before I sign off I would like to thank everyone who took the time to give reassurances when my consultant had filled my heart with fear with regards to liver transplant, your comments did help me to keep a balance, reduce my panic and put that madman's comments into some kind of realistic perspective, thank you so much.

BLOOD CLOTS AND CONSULTANTS

2006-09-14T20:51:00.000Z

I will tell you a little story regarding the mystery of the blood clotting issue mentioned in my last post.

I had my biopsy 5/6 years ago and was told all was well with just a little inflammation to my liver. However a couple of years after the biopsy, I found I kept getting splinter-like marks under my finger nails, they began to occur regularly every few months and eventually I began to investigate what they could be. I read that these splinters were in actual fact dried blood in the nail bed and could indicate endocarditis, (a serious heart condition), or blood clotting problems.

The next time I saw my consultant I mentioned the splinters to him. He, explained them as trauma to my nails caused by me knocking them. I didn't agree, I thought that if it had happened only once or twice perhaps this would have been a valid reason, but I was sure I wasn't knocking my nails any more than I had been doing the previous 40 odd years of my life. I said to my consultant that I thought it odd that this should happen so frequently now and asked did he not think they could be indicative of the blood clotting problems that I had read about.

He gave an exasperated sigh as he told me that no, they did not indicate clotting problems, and in his usual fashion dismissed me as a bit of a neurotic. I didn't argue, I just hoped he knew what he was talking about and I was of course glad that I didn't have blood clotting problems.

It surprises me now though, that out of the blue and in the midst of telling me he thought I might be showing signs of liver failure and it was perhaps time I went on the transplant list, that he also made the point of telling me that I had blood clotting problems and that they had discovered these problems at my last biopsy 5/6 years earlier and he further stated, that he had discussed this with me at the time!!! What utter nonsense, we have never had any such discussion!

He has never alerted me to the fact I had blood clotting problems and when I said this to him, he insisted he had told me. I left it there as I have been there before with this man on a classic, 'oh no it isn't'/'oh yes it is'. I wasn't feeling well and I was too shocked by the other stuff he was saying to challenge this almost throw away remark he had slipped in about blood clotting. It is only on reflection that I have had time to process all this stuff and consider the implications.

He advised me at that time that if I had any more migraines I was not to take paracetamol but aspirin instead. I presume he means I should use aspirin over paracetamol for any pain whether migraine or not. Presently I am too nervous to take any painkillers until all this has been clarified.

By now I just do not know what to think. If I had blood clotting problems since my biopsy, then why did he pooh pooh my suggestion about the cause of the splinters and not even allude to clotting problems when we had that conversation? Why has he never advised me before about taking aspirin instead of paracetamol. I wonder if any other medical personnel should have noticed this clotting problem, and if they did, should they have told me about it?

About 18 months ago I was admitted into hospital as a day patient to have a polyp removed from my womb. Would this blood clotting problem have been brought to my attention then, or indeed at any other surgical procedure I have had over the years?
I wonder is my consultant correct to advise me to use aspirin, I heard you shouldn't use aspirin if your blood doesn't clot well? And what exactly is the nature of the blood clotting problem I have, does my blood clot too much or too little? My mum has had 2 DVT's, so I suppose I could be quite a high risk in that respect, I wonder if I should be actively doing anything or avoiding anything?

So I am left with more questions than answers and a sinking feeling about discussing anything that he has said directly with the man himself. I don't think he knows his head from his a**e and that is quite comforting in some way considering what he is trying to sell me now, liver failure and a transplant!

I am still awaiting my appointment with the liver specialist which I am advised, after calling them today, that I should recieve quite soon, possibly October. In the meantime I am feeling not so bad at all, which is very nice indeed. I just hope this liver specialist is not going to see me and then send me back to my consultant.

I feel that I am finally coming out of the depression caused by the combination therapy, which is about right because I have now got an appointment to be assessed by the mental health team at my local hospital. Because I am feeling so much stronger mentally, I feel have got a much clearer picture about what has been happening to me the last 12 months, and I have certainly been in a bleak depression, exacerbated by the lack of coordinated care by the medics, from my consultant who told me I wasn't depressed despite the fact I would break down crying at the drop of a hat, to the specialist nurse who said she could offer me no support as my medication had been stopped, to my gp who said she had not met anyone who had such a reaction to the meds and admitted she didn't know what to do, to the counsellor who I waited 3 months to see, who after 2 sessions went off sick long term and I never got a replacement to this day, still waiting......

In real terms I got zilch in respect of support to manage the after effects of treatment, not even an acknowledgement that that was in actual fact what was wrong with me. I am not alone in this lack of support, that's the situation for many in Hep C land. The good news is, I am finally beginning to get over it.

After my last appointment with my consultant when he said he thought I should see a psychiatrist, I then went to see my semi locum gp Dr Z suffering shock from being told I have possible liver failure and it might be time to put me on the transplant list. Dr Z said I should go to see the mental health team as I was sinking further into depression with the news, and if I did have to undergo liver transplant I would need support, and further, that these people could prescribe a wider range of antidepressants than a gp and as I had had a bad reaction to these in the past they may be the best people to prescribe. So in the spirit of compliance I agreed to go.

Another train of thought that was developing as my mental health was returning was that, if I have a liver biopsy through this new shiney liver specialist, and if the biopsy shows increased liver damage, and if the specialist doesn't think treatment may kill me, then it might be prudent to be on board with the guys who can monitor and advise me with the correct/best anti anxiety anti depressants to use at that time, and if I take up treatment again Iam certain I would need these pills in my system well before I start. I really do not intend to start on any antidepressants just now, not as my mood is definately lifting recently.

I do have just one more little niggle going on in my mind, and its the letter my consultant wrote to the liver specialist, at one point he says, '..... Under the circumstances, I would be grateful if you could review her query biopsy, query referral to Leeds for possible transplantation, depending on your thoughts. ....... ' Now I don't know about you, but to me that reads as if it is me who is querying biopsy and transplant. Probably just medical speak, but he is such a slippery git, imho, that I wonder what he is up to.

The only time I queried a biopsy was last year when he told me he wouldn't give me treatment because it would kill me, I asked if he wouldn't do a biopsy to ensure the damage to my liver hadn't progressed. He said, 'What is the point of knowing you have liver damage when you can't have the treatment?' I rightly or wrongly reminded him at that point that I had genotype 1b and he should be aware that that strain of HVC can cause liver cancer without the intermediate cirrhosis. His reply was, 'even if you had cancer I would not give you treatment'! Of course I was very ill from the combination therapy and I was alone when he said all this.

So I wait until October for my appointment with the liver specialist. The appointments coordinator said there was a note attached to my file from the specialist to say I was to be seen in 2 months, I pointed out it had already been over 3 months, she said there was nothing she could do but wait for the extra clinics being put on in October. In my favour, she said on a list of 50 people I was about 5th, therefore I should hear something soon.

In the meantime I am going to Marbella 25 September with girlfriends for a week. I return UK 3 Oct catch my breath then fly to Prague with my other half for 4 days. We are meeting up with an old housemate Stanislava who uded to live with us a few years back and her Partner Marek, who have kindly offered to show us the sights, so I am looking forward to that.

We return UK on 10 October and I see the mental health team 11 October. I must say it makes me giggle everytime I say mental health team or that I am having a mental health assessment. Perhaps this means that I have finally gone mad.

Hope all is well as can be for all those battling with HCV and for all those supporting them.

SHELL SHOCKED

2006-06-12T17:28:00.000Z

I am in shock. I have not been feeling so well, but my consultant has always maintained my symptoms were not hep c related. I have recently come to the conclusion I may have Myalgic Encephalitis, Chronic Fatigue Syndrome or something like that, its diffcult to get a diagnosis.

The last time I saw my consultant was in February before my thailand holiday when he had told me that my viral load had escalated to 4-5million and he wanted me to have a quantiative pcr test in May to ascertain whether the high VL had dropped or at least levelled off. He said if it was rising he would be considering putting me back on treatment which was a total about turn from his previous claims that treatment would kill me.

I decided I would just go along with whatever he suggested and get the results and then change my consultant whenever I felt up to it. Today I went back to the hospital for the blood test results. I rang my consultants secretary first to ensure the results were back as I felt very poorly and didn't want to go to the hospital if they had not come back. The secretary assured me they were back but I would have to speak with my consultant for the results.

Recently my symptoms have flared up, and today I got up feeling like I had a hangover, this happened last week too and after 2 days of it I got a classic migraine on the 3rd day. I have been very tired and lacking in concentration and generally unwell.

When I got to my appointment I explained my symptoms, I'd brought a list as I always struggle to get him to listen.

Very fatigued.
Waking up with hangovers, which were very severe last week making me feel like my brain was swollen.
Having strange turns if I do normal amounts of activities.
Classic migraine last week.
Exercise intolerance, if I use a part it hurts.
Muscles feel like lead, don't feel I recharge properly after rest.
Joints playing up, neck, wrists, hip, shoulder, ankle, knee.
disturbed nerve pathway sensations.
Poor memory.
Lack of concentration.
Difficulty word finding.

I managed to tell him most of the symptoms, apart from the last one or two. He asked me what I took for migraine, I explained I only got them once every few years so I just had paracetamol to hand. He suggested I didn't take paracetamol anymore, that I'd be better with aspirin because of my liver. I was puzzled as I thought we were supposed to stick with paracetamol.

Anyway all those thoughts went out the window when he told me that the blood test hadn't been carried out as the blood was no good as it had clotted. He says it sometimes happens especially if they have had difficulty getting the blood, and the blood nurse had struggled taking my blood that day.

Then he sent me into mega shock when he said I have decided to refer you to a liver specialist at another hospital as it may be time we put you on the TRANSPLANT LIST!!!!!! WHAT????!!!!!

'It can't be true, it can't be true,' I cried. I admit I reacted badly, I saw this death sentance being passed, I turned to my friend and took hold of her hands, I couldn't look at my consultant. 'Tell me what this man is saying isn't true' I cried. 'How can you say that' I then said to my consultant, 'you have insisted there is nothing wrong with me, I have even been to see a neurologist because you have maintained my symptoms were not related to hep c!'.
'I'm telling you from what you are describing today and the increased spider nevi on your hands and palms.' He said.
'But I've always had those, I've shown them to you before and you weren't interested, and you've dismissed my other symptoms before.' I said.

Oh you know what I can't be bothered to go thru the whole nasty exchange, but then he decided to inform me, whilst I was visibly shaken and crying, that because last time they did a biopsy they had problems with my blood clotting, this new specialist would probably use a new procedure where they cut my neck and go in from there! I was horrified, 'You have never mentioned problems with my blood clotting before' I said, even before I was put on tx when he was suggesting another biopsy he had never made mention of any special problems, neither had any comment been made after my last biopsy.

Mostly I couldn't believe this man wanted to describe a horrid procedure that he was not going to be involved with, and would be the responsibility of another consultant, when he had already given me shocking news. I thought he was cruel, that news could surely have waited?

He argued the toss, I couldn't believe this man felt that he would give me a graphic account of how they would take a liver biopsy from my neck when I was so distressed and trying to understand how an appointment for bloodtest results could end up as a place on the transplant list and a possible death sentance.

He argued about everything I said, I tried to make sense of how he could have been dismissing me for so long then right out of the blue come up with this. I kept repeating, 'How can you say this?' I saw him roll his eyes at his assistant and she sort of shrugged. I wondered how others took this sort of news after years of being told there was nothing wrong, only minimal liver damage, go away and forget everything, you think too much.

I am glad I am going to be seen by another consultant, I was going to request this anyway he just got there first, but I believe he is trying desperately to do a character assasination on me. I even wonder if he has purposely tried to freak me out so he can discredit me as mentally unstable. We had a lot of words about the letters he had written to my gp etc, when I tried to speak he tied me in knots, I insisted that as I was not well and with brainfog and the symptoms I had described it was not the best time for him to be verbally sparring with me.

He made a remark about all the other consultants I have seen, I reminded him that I had seen a gyneacologist for endometriosis and and endocrinologist for my low thyroid that is all apart from the consultants I saw in his absence when tx went pear shaped, and the nuerologist who I went to see because he himself had dismissed my symptoms as unrelated to HCV. In the course of that exchange I mentioned that the nuerologist had asked me if I would like him to refer me to a psychiatrist as he could find no hard evidence of nuerological problems, and I had refused. My consultant was a quick as anything in saying that he too thought I needed a psychiatrist. He then went on to say that in fact it would be crucial as to whether I would get a transplant because they would have to assess whether I was mentally stable to recieve a liver transplant.........

So he is stitching me up. I am not mentally unbalanced. I will not see him again, but I feel he will have a field day with what happened to day. I believe he was inciting a dramatic reaction. Who, with any sensitivity would proceed to unnecessarily, graphically describe the biopsy from the neck procedure to someone reeling in shock? I cannot see him again, if I do need a liver transplant he will undermine me.

I wonder, because he surely knows by now that I have received copies of all my medical records, whether he suspected I may be making a complaint about him. Making complaints has not been on the agenda, I haven't got the energy or clarity of mind, I just wanted to understand what has been going on and I suspected my consultant was undermining me, I was correct in that respect. I am wondering whether he just wanted to get rid of me and wanted to discredit me so he could build up a defence should I have complained.

I reacted so badly because he has been insisting for so long that there was nothing wrong with me, I have felt like a nuisance. When I got my medical records from the hospital, (I wrote about getting my records in another post), I was upset to read what he had said in one letter to my GP, 'This lady is looking for an illness, sorry I cannot oblige.' He not only dismissed my symptoms, his remarks encouraged others to do so too. This man told me when I was poorly from the treatment experience that he would never give me a biopsy, he claimed that because he would never give me treatment again there was no point in knowing if I had liver damage. How come now, he thinks it might be time I went on the transplant list? I have the same stuff going on, just a bit more frequent.

It's a bit like my gp saying I had a sore throat when I was dying with malaria. There must be something about me that makes medics think I am exagerating my symptoms or making them up.

He called the bloods nurse in to take fresh blood, I will get the results on Thursday. I called my consultant's secretary later and asked for copies of any letters he may write to my gp or the liver specialist.

When I see the new liver specialist I will not be carrying the baggage from this consultant, I want to ensure we have a mutually trusting and respectful relationship which is how it should have always been.

PARADISE

2006-03-13T15:00:00.000Z

The sweet smell of incense meanders along on the balmy, early evening air, the exotic fragrance tugging on the senses, the tangled, grey beards of smoke spiralling upwards making the approach of the huge, and surprisingly dozy mosquitos a little more difficult. The mosquitos are so big you can sometimes feel them land sneakily on the back of your arm or leg, these guys don't carry malaria but even so we spray any exposed bit of flesh with an aggressive sounding preparation called 'Off!', 15% DEET, I'm not even reading the label, if I do I may not want to use it any longer, and when these beggers bite, you know about it.

It is mosquito time as I write. I like this time of day not just because cool and offers relief from the intense tropical heat of the day, but because the flowers seem to increase their vibrations in this light and make a final enchanting display before they are hidden for a spell under the cloak of the star spangled nightfall.

I am sat on the verandah of our bungalow which is set back off the beach in a verdant jungle garden. To my left are the vibrant reds and yellows of flowers that I think are called birds of paradise, a fitting name. Coconuts are hanging in rich abundance from the palm trees that surround us in many showy forms of fronds, fans and ferns, alongside fruit trees of mango, papaya and banana, all in jurassic proportions. Soon we'll have twilight when the place begins to buzz and hum as all the night insects come to life. It is lush, the hammock beckons.

I step out each morning and praise God, everywhere I turn I see beauty and I am aware that I am in the presence of the Master Artist Creator, then a couple of gaily coloured butterflies come dancing lightly by just to add the finishing touch, His signature. Glorious, let everything that has breath praise the Lord.

For a while back there I thought I may never feel this way again, alive. I recall sometime in September/October 2005 shortly after the treatment I went to the local park with my mum and my partner , I had no sooner walked away from the car park than I had to sit down weak, shaking and afraid of what was going on, not really getting answers or much in the way of support from the NHS. I was so depressed I began to think I would never recover, I cannot adequately express my joy now to realise that in those dark times, this wonderful experience was waiting for me just a little way in the future.

We flew directly from Bangkok to Samui and hung out for week there to acclimatise with aircon, cable tv and a swimming pool. The journey left me completely frazzled and I needed the week to recover. We spent some time visiting with my partner's younger brother, his wife and 7 year old son who are living there. We stayed in the Big Buddha area of the island, we like to avoid the over-crowded Chaweng with its thumping, techno-mashing clubs and girly bars.

This year though, to our dismay, we found a girly bar had sprung up in our neck of the woods, the aptly named Beaver Bar! Each time we drove past this bar on our motorbike my partner would shout Booh! which made me laugh and didn't effect the slow trade there at all.

When we had thawed sufficiently and were able to survive cold showers and without aircon we made our way to a much quieter spot on the more remote island of Koh Phangan which is where we are now. To get here you must take a ferry and then transfer to your chosen resort by small fishing boat, or, a 45 minute white knuckle jeep ride through virgin jungle along a road that is little more than a crator packed dirt track in parts. To reach this particular spot there is a third way where you can get an old fishing boat that pulls up directly on the beach here leaving you to wade in the final few feet onto the beach with your luggage held above your head, and this is how we arrived.

My partner's other brother and wife are here on this island, the wife teaches yoga, they are living at the opposite side of the small bay to us about a 20 minute walk from our bungalow. They had promised to meet us on the beach when we arrived as I was unsure I would be able to navigate wading and fagging luggage and true to their word they were there waiting. This made our arrival easier and was much appreciated as it was a rough old crossing, I was sick on the boat and it was very, very hot.

We sometimes visit the brother and wife, their bungalow is basic but in a beautiful situation over looking the river with jungle beyond. There is a monkey at the back of their bungalow on the river bank called Kai, he is a young, working monkey, trained to climb the tall coconut trees and collect the coconut. He stays here on a length of chain between to closely spaced trees and his owner Mr Sin has erected a plank between 2 rough, timber supports with a large plastic bucket fixed to one end, giving Kai a variety of platforms for spring from and the bucket offers a place to sleep,

It has been a privilege to pass time and share space with Kai and I am sure he enjoys our company too. Every afternoon Mr Sin's 2 pet dogs come bungling down to the water's edge excitedly wagging their tails and barking as Kai swoops down to tap one of the dogs on the jaw or to twist an ear before swiftly swinging back to the safety of a higher branch. The dogs bark and yelp jumping up to catch our crafty friend, but he is too smart and too fast for them as he takes cheeky swipes at them again and again. They all appear to be having riotous fun, and we the spectators are fabulously entertained.

There is so much more about our time here and island life that I would like to share, the thai people we know like Picum whose husband was shot dead by rival thai mafia, or Charm who we have know since he was a shy 15 year old teenager who is now a 33 year old lady boy running an internet cafe, but this is my hep c blog and I'm paying by the minute for this post!!

I do want to say though that I have been following my herbalists advice and avoiding wheat, yeast, soya, milk and coffee and taking ther herbal medicine she prescribed. It has been quite easy to do here as I've just stuck with the asian diet which doesn't usually include those foods anyway, apart from soya, and luckily I am not a coffee drinker. I have walked up and down the beach a few times daily and amazed myself recently by breaking out into a sprint occasionally! I have lost a few pounds in weight that I possibly gained when I stopped smoking, so its all good news, at long last!

I recieved another bit of good news while I have been here that my project has gotten funding for a further year and there were no redundancies in the end, so that was a relief I still have a job and will be back to work by end of March.

So its good bye for now from the land of sunshine and coconuts.

ABOUT TURN

2006-02-10T17:28:00.000Z

On Monday I went back to the hospital to get my blood test results. My consultant tells me he is concerned as my viral load has increased from 612,000 to over 4 million and my ALT's increased from 55 to 162 since September 05. He drew a little graph to illustrate the upward trend, which was quite unnecessary, and explained that if this trend continued then he would have to consider putting me back on treatment!!

Once again the impact of what he said sent my mind spinning. It is getting difficult to keep up with him, I was just beginning to resign myself to waiting for the new treatments to become available a few years further down the line. He said he would like to check my bloods again in May and if there was no improvement he would consider treating me with Pegasys interferon manufactured by Roche, rather than the Viraferon Peg manufactured by Schering-Plough, which I was on before, as there is a slight difference between the two and there is a possibility I could tolerate the Pegasys better.

He said he still didn't think I would be able to tolerate treatment but said he had a couple of tricks he could try. He didn't elaborate much about this except to say he could give me something to take for 2 weeks preceding treatment and I suspect he was talking about anti anxiety drugs. I found it difficult to follow all he was saying as I was in shock that he was actually talking about treatment again after all he has said before. This is a major about turn and I was not prepared for it, I am so puzzled I wonder if he has read my blog or if he got wind I was to view my records the next day. Whatever, I feel I have not fully recovered from the problems triggered the last time I had treatment, so I don't even want to think about this until I am stronger.

I attended the hospital again the next day to read through my records, they made difficult reading. In the notes about my first day on treatment my nurse had written that I had been aggressive. I found this very upsetting because when I read the term aggressive, to me, it conjures up an act of a violent nature and this was not a true description of how I was on that day at all. I was nervous, anxious and afraid and I would describe my state after my dealing with my nurse as distressed, agitated and affronted. I have recorded the events of that day in an earlier post 1st Injection which I had written in August 05. How I wish now that I had been well enough to write a letter of complaint about her attitude that day, I am appalled that she could record such an unbalanced account of that day's events.

Apart from the letter my consultant wrote which I have detailed in my last post entitled 'My consultants letter', I found a more recent letter, the one he had written after my visit in January 06 when I was accompanied by Overcomer and his wife Sarah. It was scathing, again he labours on and on about nothing in particular, but makes a large statement about how my appointment took up a full 30 minutes, that I brought along 2 friends, one of whom had hepatitis C and that he had no doubt that on my next appointment I would take up just as much time!

His whole manner in the letter was, in my opinion, a subtle attack on me and I felt he was building a damaging picture, I was a time waster, I turned up to see him with a couple of junkies sort of thing. No offence to Overcomer in his Armani sweater and Sarah who are beautiful, well presented and upstanding people, but of course those reading his letter will be left to conjure up their own images from his inferences. I wonder what he will say about this last appointment when in order not to be alone with him, as I no longer trust him, I took my friend Janet. My friend Janet knew who my consultant was as she is friends with the judge who lives 2 houses away from Dr Blahblah and she let him know this as we left.

I am hurt at how these damaging remarks can so easily be added to a file that is going to follow you around fro the rest of your life. When I worked in children's homes we were trained to be sensitive as to what and how we recorded incidents on the young person's file as the young person would have that file for life and would read it as an adult. So we were sensitive that we didn't fill it with negative comments that may haunt the person in later life, which we so easily could have done considering the behaviour of some of the damaged young people we worked with. I cannot understand why those with access and power to influence the opinions of other professionals can so casually write in such a way as to denigrate the patient. Do they answer to no-one?

I have given a lot of thought to all of this, I have asked for copies of all items in my medical records and paid £50 for the privilege. I can see I have got a lot of work ahead of me if I wish to challenge these damaging remarks. I know now that my intuition regarding these people has been correct, but for the sake of my mental health I am going to have to let go of this for a while. I will have the copy file posted out to me in the next 40 days or so and there is no immediate urgency to deal with these issues. I now know that my intuition regarding these people has been correct all along and I am finally clear that Blahblah is no longer making a positive contribution to my wellness and I am well rid of my nurse.

I spoke to my semi locum GP Dr Z about how I felt that what I have been through in the last 6 months has actually been a nervous breakdown. I feel I have been so traumatised by what happened to me early on in my treatment and the subsequent appalling care I have received since treatment was withdrawn, has triggered and exacerbated underlying anxiety disorders. She didn't disagree. I still feel there was no real support for me and that I have had to struggle with this alone and work it all out for myself. Apparently this lone, unassisted struggle is not unusual for those unfortunate to suffer with mental health issues.

I have been faced with work issues too recently when I received notice that along with the rest of the team on my project, we are on risk of redundancy in March due to a cut in funding which means 2 out of 8 of us will get the chop. To cut a long story short we will all have to undergo an interview to determine who goes, my interview is Tuesday. I am still off work sick and when I was faced with this challenge I had a marked flare up of left side symptoms and depression, this has helped me accept and realise that at least some of what I have been experiencing must be due to nervous exhaustion.

In my search for some answers as to what has been going on for me I searched out an old friend who is a herbalist, I used to work for her many years ago dispensing the herbal medicines she prescribed to clients. I sent her a sample of my hair to run some tests on and these are the results she sent me. I thought some readers might find what she has to say of interest. The test is highly individualised but some of you with the virus may recognise similarities where many of us share common ground. This is what she had to say.

'....Here is an overview of your Test Results.
I have given you the list of your food allergies from the main test:. These are:
Milk - high
wheat - moderate
yeast -high
coffee - moderate
soya - moderate
Basically it is best to avoid these where possible.

Your basic vitality is a little below par, and you have a good deal of nervous stress and tension, and your sympathetic nervous system is both tense and exhausted, so it is difficult for you to relax, and you are feeling almost constantly anxious and depleted. This is both emotional and physiological since you do not have reserves of nervous energy to call upon.

There was a slight reading on Malaria and Malaria toxins, both of which I broadcast to clear, as this seemed the most sensible way to proceed with these to clear them from your body tissues.
The hepatitis was only at a mild level, but had affected your liver and liver function quite extensively. The medicine supports your liver cells to overcome this and to regenerate themselves.Obviously this will take some time to achieve and some of the ingredients in the current 12 drop prescription will carry on in future medicines.
Your gall bladder is congested and your fat metabolism disordered, in turn affecting your production of various steroid hormones. The medicine works to normalise this process whilst not exhausting your liver's present capacity.

As a result of your liver's deficient functioning you are low on naturally produced anti-inflammatory hormones and have developed something akin almost to an auto-immune inflammation of connective tissue, muscles and joints. It is part of a disordered immune response, with its origination in your spleen, and is a process whereby you cannot always fight off infections yet at the same time are generating inflammatory responses to your own connective tissues.Your body will start to overcome this, but I do not think it will be a consistent process and I think you will still have times when you feel quite arthritic, and times when you are virtually free of it. In other words it will an very up-and-down process with occasional flare-ups until your body is reliably producing the anti-inflammatory hormones it requires.Taking anti-inflammatory medications or herbs may bring some symptomatic relief, but would only be masking and not healing the condition.This sporadic inflammation of connective tissue is also from time to time affecting the schwann cells of your nervous system and I think this is where some of your peculiar sensory symptoms are coming from, and why they seem to affect you for a time, and then disappear for seemingly no reason whatsoever. There is no evidence on this test that it is the beginning of MS. It is just not the right clinical picture. This is a disordered immune response and transitory inflammatory process, not a demyelinating degeneration.
You have a very slight anaemia, sub-clinically lowered thyroid and parathyroid function, and both your oestrogen and progesterone are slightly lowered. The effect of these lowered readings is a decrease in bone density which in the longer term would go on to cause some osteoporosis.
Your blood sugar is easily dropping low, and this again would give you odd sensory sensations and brain fag.
The net effect of these metabolic dysfunctions is an overload on your kidneys which in turn will also make you feel spaced out and unwell. Again you will be experiencing times when your head is quite clear only to be followed by times of muzzy headedness.
All this makes your bloodstream, your portal circulation and your lymph sluggish and congested, so you will feel tired and lethargic.
All in all, these problems will mimic so many disorders that you will wonder if you have anything from rheumatoid arthritis to any number of CNS disorders with circulatory deficiency.
It will take some time to normalise and restore your immune reserves and response and clean and normalise your body tissues. The 12 drop medicine starts to address this and to normalise these metabolic processes.
Could you also get a 200 i.u. Vit E and take it twice a day with food.
In my opinion, all you can do is slowly turn this around by keeping on supporting and normalising your liver and your metabolism. The test results show that this can be done but it will take time.
I hope this is helpful....'

This is my plan of action for the next few weeks, Tuesday interview, (my last hurdle) and Thursday Thailand. Yes I am going to KohPhangan and I am going to stay in a bungalow on the beach and just totally relax for 4 weeks. My partner's brothers and their wives are already there, I may have mentioned them before, one is teaching diving on Koh Samui and we will stay close to them the first week and the other brother and his wife are teaching yoga and diving on Koh Phangnan and we will stay by them in a more remote location the remainder of our time.

Sending all of you in Hep C land my good wishes for rapid recovery.

Sawadee ka.

Letter from my Consultant

2006-01-31T17:53:00.000Z

This is the copy of the letter from my consultant. I have numbered the paragraphs for ease of reference. As a result of reading this letter I have written to my hospital and requested to see my health records. I am awaiting an appointment to view.

I have an appointment with my consultant on 6 Feb, it may well be my last one.

Here goes......

21 September 2005

Dear Dr Z

1/ Further to the long and detailed letter from my Registrar Dr Racheal when Poppy was seen on 5 September, Ms Poppy came to my clinic and asked to see the Registrar. Unfortunately the Registrar was on holiday so she did see me.

2/ Mrs Poppy has been to see a lot of people in this hospital, not necessarily in my clinic as she has been referred to the Cardiologist and the Endocrinologist and to the best of my knowledge she has seen 3 other consultants in the last 12 months, all of whom have written to the practise.

3/ Mrs Poppy comes to see me because when she was in with severe malaria and, I remember her very well as I did the exchange transfusion which took all night on 24 November 2000, during her recovery phase we discovered she had hepatitis C.

4/ She has had a biopsy which is not particularly bad with an Ishak score of 3/18 and 1/6. Unfortunately she has had a very unpleasant reaction to the Interferon and Ribavirin which has been explained to her on several occasions. I have no doubt whatsoever that her main problem is that she can't understand that her hepatitis C is not serious and that there is no significant alternative treatment available at the moment.

5/ I had an extremely long talk with her and hopefully she now understands. She has not had conflicting consultations, she has consultations with a number of Consultants as well as Registrars and the opinion has been the same on all occasions.

6/ For the sake of completeness, the x-ray of her cervical spine showed minimal wear and tear only. I gave her a prescription for a soft collar which I suggested she should try wearing at night which might help. Her last set of liver function tests were completely normal with an ALT of 34 and a gamma GT of 28 so I will be reviewing her in the New Year with blood tests at that time.

Yours sincerely
EM Blahblah FRCP
Consultant Physician

This is my response to that letter.

1/ After reading this I asked at my surgery to see the long and detailed letter from Doc Racheal that Blahblah refers to, the receptionist told me they had never received this letter, she thinks my consultant must be referring to a letter he has received from the Registrar himself that has not been forwarded to the surgery. You clever readers may have realised this already, but it was a bit confusing for moi.

My Consultant is not quite correct when he says I asked to see the Registrar, Doc Racheal on 5 September. I am presuming he makes this comment as my locum GP, Dr. Z, was writing to request that he see me personally.

What actually happened was that on 5 September I attended his clinic for an appointment that had already been made for me to see Doc Racheal. If you have been following my blog you may remember that 2 weeks earlier Doc Racheal had shipped me off with a pocket full of Cipramil for a seratonin nerve bath, that had sent me under and increased my symptoms. She had also requested that I had my neck x-rayed before my next appointment so we could look at it together when I next saw her.

When we discussed this plan she left me in doubt whatsoever that it would be herself personally I saw next time I attended clinic. If on the day I attended for that appointment I had been seen by doc Racheal as had been arranged, it would have been the first time I had seen the same doctor twice in succession and I was anxious to establish some continuity of care.

When I was told by the nurse who weighs me each time I attend clinic that I was going to see my Consultant, I asked her why I wasn't seeing Doc Rachael, she said she didn't know, she just knew the man himself had asked for me. The nurse then said something like, 'Why, don't you want to see your Consultant?' I answered that I had just expected that I was going to see the person I had made the appointment to see and I was disappointed this had been changed. This was just light chit chat whilst I was being weighed, but I know she passed this remark on to my consultant because of a comment he made about my remark when I finally went in to see him.

He told me at that time Doc Racheal had gone to work at a different hospital and not that she was on holiday as he says in the letter. (I was told she was on holiday when I rang to speak to her the day after she had given me the cipramil that went horribly wrong 2 weeks previously). When Blahblah told me Doc Racheal had left I was upset, that she would lead me to believe I would be seeing her, she must have known she was leaving 2 weeks earlier when we made that appointment, when she had used the terms I, me and we in all her discourse with me. It wouldn't surprise me to find out now that she still works there and what I was told by my consultant was yet another slight distortion of the facts!

The point is that I never asked to see someone else, but I feel there is a subtle chipping away of my character beginning right there with that misleading statement. His assertion could imply that I am going to see my GP, getting her to write in to him, then I ask to see someone else! That I am wasting not only his time but my GP's time as well, I feel he is tipping her off and building up to a complete character assassination.
So while on the surface this appears to be an innocent little paragraph, I believe there is a distortion of truth and fact right there, I also believe that it is often the case that the devil is in the detail.

2/ Okay its getting bit meaty here, what point I wonder is my consultant trying to make or insinuate with yet another untrue and misleading statement? He is correct in one way in saying that I saw a lot of people at the hospital. When I had reacted badly to the interferon that is what happened, this was largely due to the fact that he was away on holiday, my nurse was too busy to see me and I was passed from pillar to post, never seeing the same doctor twice! Seeing a lot of different people has been a source of anxiety for me personally and not how I would have liked my care to have been handled. However I don't think this is the impression that my consultant gives with his statement.

Yes I see other professionals at the hospital, I have seen the endocrinologist once 2 years ago as I have low functioning thyroid. I saw a cardiologist once about 4 years ago when I was suffering from chest pain.

The best of his knowledge is indeed a very poor best, as I cannot for the life of me recall seeing 3 other consultants in the last 12 months as he claims. I asked the receptionist at the surgery to check my records to see if I had remarkably blanked these consultations from my memory, she could find nothing on my records., or indeed any letters that had supposedly been written to the practise by the said consultants. I had only been to see my gynaecologist as I suffer with endometriosis and because of this required his input regarding HRT.

3/ There he goes bragging again! He never misses an opportunity to take credit and impress this upon others. I wonder if he was on double pay when he stayed up all night! Seriously I am grateful that I survived that night and that I am alive today.

4/ Reading paragraphs like this one make me wish I had powers like Carrie from the movie of the same name. Using only the power of my mind I would stare at my Consultant intensely causing his stethoscope to curl around his neck and pin him with feet suspended against the wall. While he writhes about in terror, with his mouth open and gasping for breath, my case file would fly open and with demonic might the pages of his pompous, bigoted written word would scrunch up and ram themselves with much force into the orifice which is his mouth. I wake up there and realise this is just pure fantasy.

I don't understand the biopsy score, they seem to use a different scale to measure damage than the one I read about on the forum. I have been told and do accept that the biopsy of five years ago showed only mild liver inflammation, I think I mentioned this in my very first post 'Lets start with Malaria'. I do not understand what he says when he states that my hepatitis c is only mild, I thought as others have said, that you either have it or you don't. I presume therefore he is referring to the scale of damage to my liver as of 5 years ago, and he should state what he means, my GP knows little enough about HCV as it is without him distorting the facts.

He, Blahblah, acknowledges I had a very unpleasant reaction to treatment, I think that is quite an understatement and he does little to convey the seriousness of the situation as he did when he spoke to me he told me treatment could kill me and on that basis he would not prescribe treatment for me again, and neither would he allow me a biopsy.

He claims I have had this explained to me on several occasions, which implies I am stupid and needed to be told more than once. I understood the fact that I had had a very unpleasant reaction the very moment my nurse made the decision to stop my treatment in his absence, when she observed that I could not even lift my head and she said that it was ridiculous to proceed in that condition. I understood when he said to me, 'If I gave you treatment again it could kill you!' What didn't I understand?

Since my nurse stopped treatment I did see a number of professionals at each visit to the hospital, including the two occasions I was admitted as an in-patient. The reason I saw a lot of professionals was because the author of that letter, my consultant, was on holiday and not available to care for me. If he had been available, no doubt I would have seen him and not been passed from pillar to post.

'So come on, come on, do the Locum motion with me!'

My consultant states that he has '...no doubt whatsoever that her main problem is that she cannot understand that her hepatitis c is mild,' What a revelation! I truly thought that my symptoms were my main problem and not what I was thinking, which was not what he thought I was thinking!! Ba bom! Enter the Marx brothers.

5/ Well he sure did have along talk with me, when no-one was around he pushed home the claim treatment would/could/might/ kill me. He refused me a biopsy on the very same grounds.

He is not correct is asserting I have not had conflicting consultations, I was told by his registrar, doc Racheal, that I should forget the old, full of beans Miss Poppy and accept that I would need to rest, rest, rest and it may be along time before my energy returns. A couple of days later when the cipramil she prescribed failed to gently bathe my nerves, and in her absence as she went on holiday too, I returned to the attenders clinic at the hospital, doc Lucy ludicrously told me I needed to get out and about, not lie in bed and even suggested I go back to work before offering more antidepressants which I refused. Was this not conflicting consultations.

Or what about the one where a different consultant saw me in Blahblah's absence, when I was admitted into hospital the first time, in august, just after treatment was stopped. Before I was discharged this other consultant came to see me and told me that he would think that I just let everything settle down now and I would probably come and have another biopsy around November and dependant on that it may be that they would look at treatment again. Actually what he said was something like, if it were a life or death situation you may have more determination or inclination, (something like that), to continue the treatment. That remark puzzled me at the time as it implied that I had chosen to stop treatment. Anyway this consultant's analysis was a complete contradiction to what Blahblah was later to tell me when he returned from his hols.

The point is; isn't that 2 instances of conflicting consultations?? But you know old Blahblah just dismisses what I had said without even making any enquiry as to what I was referring to!! How convenient is that, no messy investigations to unearth the truth, just dismiss the patient and put a slur on her character for good measure.

He again labours the point that I have had consultations with a number of consultants and registrars and the opinion has been the same on all occasions. Why doesn't he say what that opinion is, and why again does he not explain why I saw so many different medics. He throws up a lovely smokescreen and frames me as some neurotic lunatic. Certainly Blahblah's opinion differs from the consultant who suggested I had a biopsy around November 05.

6/ Nicely rounded off there by Blahblah, whose conclusions about the wear and tear on my neck are in conflict with my physiotherapist and with earlier xrays and the conclusions given to my GP many years ago that I had spondylosis. He didn't even check the xray for the purpose doc Racheal had requested it in the first place, and I'm sorry to confuse the issue further, but the xray was not actually taken of the offending area, but this is another story of poor communications that result in wasting money on irrelevant xrays. I did mention this to the guy taking the xray, but he said he had to go along with what was on the request.

My liver function tests sound good, but I wonder about these, as they are the results after my short affair with interferon which had a majorly positive impact on the ALT scores. In fact even on my short spell of treatment in august 05, my ALT's dropped in the space of a week from 55 to 26 and to an all time low of 17 on 2 September !!! So from my own lay man's point of view the fact that my ALT's had doubled since then is perhaps significant. Blahblah's letter is dated 21 September, so we can deduce that my ALT's doubled in around 2 weeks. Maybe this is not important, but he mentions it in his letter that these are completely normal, which would lead my GP to assume all was well. I will be interested to hear the results of my most recent blood tests when I next see Blahblah on 6 Feb. I've no idea what a gamma GT is, but suspect this result too may not be typical due to influence of the interferon when the test was taken. So am I to assume that it is completely normal for ALT's to double in 10-14 days. I don't know the answer to that.

Appointment with Dr Blahblah

2006-01-24T23:36:00.000Z

One of the most significant points of the meeting with my consultant, Dr Blahblah, for me was the absolute difference it made to have informed people attending the appointment with me. I am so grateful to Paul Overcomer and his wife Sarah for their wonderful support which has helped me to maintain my sanity at this very trying time.

In order to avoid getting passed to a junior doctor which is what usually happens when I attend an appointment to see my consultant, I requested that I was seen by Dr Blahblah himself when I checked in with reception. When I was called in to see him he told me straight away that he was puzzled as to why I was there, he said the appointment was only intended for me to have blood tests done. So it was clear from the off that I was on borrowed time.

I had prepared a list of questions I wanted to ask him, but even with the support of Paul and Sarah it was hard to get through the list of perhaps only 4 or 5 quite simple questions, and I still I came away without asking all of them. The difference between not getting all the answers this time as opposed to not getting them last time, is that I had others to witness the great difficulty I have getting Dr Blahblah to actually listen to my question from start to finish without butting in and taking me around the houses and still not addressing clearly what I am trying to ask, and this was beneficial in preserving my sanity.

My first question began like this, 'When I was last here and you told me treatment was killing me......'. That was as far as I got before Dr Blahblah chipped in, loudly claiming he had never said that. I protested that indeed he had, and I had to insist again and again as he repeatedly denied making that statement. This was very difficult because every time I opened my mouth to speak he cut me up or talked over me. I had to be very forceful indeed and I eventually reminded him that he had not only made this statement once during my last session with him, but three times!! He finally acknowledged that he had said treatment could kill me not would kill me. I could have argued and laboured this point further, but this was not a court of law and this statement was only the precursor to the real crux of the question which would have basically been, 'if treatment was killing me can you tell me if this was due to the ribavirin or the interferon?'

I think Paul and Sarah would bear me out, but I personally felt that until I became forceful Dr Blahblah was going to deny ever saying anything vaguely like what I had claimed. His initial protestations certainly appeared to be a total denial of ever saying anything remotely like that. After that, each time I tried to pose a question he butted in before I had finished and went on a long and complicated tale which, as I mentioned before, never usually answered what I was trying to ask.

As a further 2 of my questions were dependant on the answer to the first one, this initial argument jarred the way I had loosely expected the consultation to go. Basically I came away with little more clarification than when I had gone in to see him, and I found the struggle to be heard upsetting and stressful. The lack of clear answers frustrating.

He did in the course of the consultation say stuff like because your liver is only mildly inflamed I don't think you should consider treatment again just now, but wait until the newer treatments become available. I think this is a valid point but is a far cry from the dramatic impact of what was said to me last time and I feel the effects of how and when that was put to me last time have been far reaching in terms of mental health.

Strangely, each time I asked my consultant half a question, he turned and addressed his answer to Paul and Sarah with an ingratiating smile, and not to me. Another thing I realised was his methods of cutting me up and butting in, created a lot of confusion for me. Having brain fog I cannot digress easily, so if I begin to ask a question, then he interupts before I have finished and goes off on a tangent because he has not listened, I find it very difficult to follow what he is saying whilst he is bombarding me with unrelated information that my mind has not prepared to take in. At that point I am trying to hold my question in my mind until he has finished his unrelated sojourn, so I do not forget it. I found what my consultant does is waffle on furiously taking lots of twists and turns unrelated to my question and effectively using up all the consultancy time.

It took 3 attempts to mention my current symptoms which he gave only cursory attention to and then dismissed and ignored them by taking the discussion elsewhere. Bringing him back again to the subject of symptoms, He appeared reluctant to acknowledge HCV could cause symptoms and his focus was solely on liver damage. No, that is not quite right, it was not that he was reluctant to acknowledge symptoms, he dismissed the idea right out.

When I said I was exhausted all the time and that I felt drained and dizzy if I had to speak at length, I said in fact I feel lightheaded now just from speaking here. He dismissed my comment with this quip, 'Well you wouldn't be able to tell'. (the inference, I felt was that I talked a lot), with that remark there was no further questioning.

I told him I had felt dizzy, 'Well you never mentioned that before', he said, 'stand up and shut your eyes tightly'. I did as he said and he came up to me and pushed me by my shoulder to one side then repeated this on the other side, he then said, 'well that seems OK, you can open your eyes now'. I took my seat and that was the end of that, again there was no further questioning. I had mentioned these symptoms to Doc Rachael when I had last seen her, so perhaps this had not been passed on?

I mentioned my recent visit to the neurologist and informed him that I had become aware of a comment he, Blahblah, had made on my notes, that I was not in agreement with. He asked me what that was, I was nervous about challenging him and said something a bit weak about him saying I was anxious and unable to accept my HCV was mild. He said that he had never made such comments, he then quickly opened my file and showed me a letter, pointing out a certain paragraph.

I had to lean across the desk to try and read this, I was looking for the key words, anxious and mild, but could not see them. I was too shaken to read the text through clearly and he was rushing me and telling me this was the letter he had written to my surgery after my semi locum GP had written to him to ask him to see me personally. I asked him if there was perhaps another letter, he had closed the file by now, he laughed and said how much did the neurologist get to read and once again dismissed me. I felt very foolish, he seemed to confuse or dismiss all my claims.

I asked about my PCR test, I wanted to ensure that the quantitative PCR was done pre treatment and was very interested in my baseline viral load. Once again I got to say half a question when he cut me up and went on a long story about how they do a cheap PCR test at 12 weeks and only if this doesn't show the virus is undetectable do they use the more expensive quantitative PCR. I've put that simply, and I may not have understood exactly what he was talking about, but it was clear that there had not been a quantitative PCR test done pre treatment and further, that this procedure was accepted practise at the hospital. It was a pity doc Rachael was unaware that this is the system they use at this hospital when I asked her at a previous appointment for my results, it would have saved anxiety and confusion for both of us.

Doc Blahblah then changed the subject and asked me if I had been back to the Gambia yet. I was surprised by this question as it was a question he had asked me this a few times before, the last time he asked this was in 2002 and I never saw him again after that until once briefly before my treatment in May 2005.

The reason he made reference to the Gambia is because this is where I contracted Malaria. When in 2002 he mentioned this, I explained I would be afraid to put myself at risk again. He assured me that I could travel there again as there were now new improved antimalarials available, he said the new type were used by 'our boys' in Sierra Leone, and although they were more expensive that the standard antimalarials they were more effective.

When he said this to me in 2002 I decided very shortly afterwards to take advantage of a very cheap, last minute holiday I had seen advertised on teletext and go there with my sister. I was really happy to find I could now travel further afield again, and I booked the deal. I rang the hospital to make an appointment to get the special pills, only when I got there I was seen by somebody other than Dr Blahblah and informed in no uncertain terms that these pills were not suitable for me as they were toxic to the liver.

I protested that Doc Blahblah had told me it was OK, the medic left the room, I presume made some enquiries and came back and confirmed that it was a misunderstanding and I could not have the pills. In fact I was told I could not have any antimalarials, but they would give me a 6 week course of antibiotics. I was not happy, I was only going away for a week, not only that but when I got home I found the literature advised me to avoid the sun when taking these antibiotics!! Brilliant.

There is a little more to that story in that Dr Blahblah had also told me I didn't need the yellow fever vaccine either, but again this was disputed when I presented myself at the hospital where they insisted I had the vaccine! Confusion upon confusion.

I was naturally furious and that was the last time I saw Doc Blahblah until May 2005 when he gave me a quick prep talk pre treatment when all that about antimalarials was put aside.

So you can imagine my shock when he asked me if I had been to the Gambia again at this meeting. I reminded him of what happened last time, and how the wonderful antimalarials he had promised me were not forth coming and how it had ruined my holiday. He became a little flustered and said, 'Who told you you couldn't have them?' I told him I couldn't recall at that point, he then turned to the trainee doc in the corner of the room and said something like, 'They are not contraindicated are they?', the junior doc said she didn't think so.

There was a big queue of patients waiting to be seen outside in the waiting area and we had come to the end of the session.

I woke up the next morning and felt I had been had. Not only did my consultant make very strong statements to me about treatment killing me when he had seen me at a previous appointment. He had also claimed at that time that this extreme effect was the reason for not giving me a biopsy, due to the fact he would not give me treatment even if my liver was damaged as treatment was killing me, so what was the point of biopsy?!

Yesterday I feel he had so effectively confused the issue that I had come away without even challenging his refusal of a biopsy! He did say this stuff, and in my opinion this was reckless and it caused me to suffer what now amounts to an unnecessary and severe depressive reaction. On reflection I did not see what difference it made really whether he had said would, could, will, or might kill you. His conclusion was the same and was based on that statement.

I also woke thinking this man was basically a liar or at least a distorter or manipulator of the truth, and on that basis alone I should proceed with a change of consultant. Whether any of his conclusions about how we are to proceed with my health care are correct or not, I need to be able to trust my consultant. I also need to be able to speak to my consultant and be sure they will listen and allow me to fully ask questions. I need a consultant who does not make misleading, untrue and damaging remarks on my file which may possibly have negative consequences for me when I seek the services of other professionals like the neurologist, with the health issues he himself is dismissing as unrelated to HCV or TX. (I have now read the letter in full and have a copy in my possession).

I had blood tests done after my appointment and I go back 6 February for the results. In the meantime today I have rang the hospital for permission to view my notes, which hopefully I will see before I go back for the blood test results. I had to fill out a form and pay £10, if I want copies of anything I can have up to 40 and after that have to pay 25p a copy to a maximum cost of £40.

So the slow and cautious process begins to seek out better health care. I will stay with my current GP until the second opinion has been processed and I will not even initiate that until I have had the blood test results and read my notes.

There are other factors that may delay proceeding immediately for a change of consultant, eg if he agrees to a biopsy next time I see him. I do not want any more factors concerning my health care to become confused due to the disruption of changing consultants at a crucial stage in care such as biopsy. I would ask now though, in the light of patients being able to choose which hospital they attend, that the biopsy be carried out at another hospital where I am informed the biopsy is ultrasound guided.

For sure I would not consider undergoing treatment again under this consultants care, and how I proceed with regards to treatment would be dependent upon a biopsy and the results of this. I am not foolish enough to put myself through the treatment ordeal again if damage to liver remains mild and if there is hope on the horizon of new and better treatments becoming available in the not too distant future. I would, as my consultant advised, be sensible enough to wait a while for these newer treatments, if this proved to be the case. My consultant does at least still maintain that I had a particularly severe reaction to the treatment.

I have been to see my semi locum GP who I get on well with, if I overlook the incident of the referral to the acupuncturist the other week and, who knows, that may not have been entirely her fault. It's just that this is the GP who has indicated her support when I am ready to change consultants.

I asked to see the copy of the letter Dr Blahblah wrote, I cannot keep information in my head anymore, I need to see it written down and have time to digest it, she shows me the letter on screen and I get a better look at it. I tell her I am very angry by the contents and do not agree with the comments he has made about me and I will be complaining.

I also ask her to write to Blahblah and ask for clarification as to where I stand with the antimalarial issue as once again I am confused as to whether I can take these new Malarone, I think they are called, or not. Let Dr Blahblah put his pen where his mouth is, this is the only way to pin him down.

Later I return to the surgery and get a copy of the letter Dr Blahblah wrote which is more damaging I feel than I had initially thought. I am certainly unhappy about his comments and will not settle until I have done all I can to have this letter removed from my records or at least amended.

I will tell you what was in the letter in my next post as it is a bit lengthy and I have a lot to say about it. I conclude that my consultant is a very slippery character indeed.

In the meantime I am improving leaps and bounds in the physical sense, by that I mean I have managed to have a 45min - 1 hour brisk walk daily for the last 10 days. I am still having periods of bleak depression, anxiety following the least bit of stress, pressure or frustration and finding it difficult to concentrate for any period of time. It has taken me ages to get this post in order and to realise I needed to seperate the letter from this part of the tale, I have cried when Tesco did not have the wheat free, yeast free bread in stock that they had informed me on the phone they had, (I did laugh at the absurdity of this later), and I ended up having an anxiety attack yesterday after trying to deal with trade unions, CAB and employment welfare. I am on notice of possible redundancy which will be confirmed on Friday. I feel frustrated that I am unable to get back to work despite the threat of redundancy and I feel powerless.

It has been 6 months since I had my 2 shots of interferon, I am certainly in a worse state than I was before I started this treatment thing. I seem to have been caught up in a whirlwind of disaster. Anyway despite all this and the strange depression I am still able to endeavour to be upbeat, cheerful and laugh a lot, if that makes sense. It's the anxiety and the left side weakness that messes me up and for that reason I am considering having another attempt at antidepressants. I need to give this careful thought, I do not want to set myself back again due tot he bad reaction I have had to these in the past, yet I do not wish to stagnate here any longer.

Enough. Peace and good will to all readers especially those with or affected by the virus and those currently on treatment. I wish you all health and rapid recovery. To those of you contemplating treatment, please do not be put off by my experience, put it into context by considering the many success stories out there on the world wide web.

Neurologist appointment

2006-01-10T16:04:00.000Z

Before I proceed with this post, I would like to give my sincere thanks to those who contacted me privately after reading my marathon post, for their most valued support and advice. To have this input from others within the blogging community who truly understand this disease, and in many cases have experienced similar problems with the NHS, helps in that one feels less isolated on this sometimes lonely and difficult road.

When I finally attended my appointment with the neurologist 5 January, I thought I had prepared for this really well and had written down all my symptoms so I wouldn't forget anything, but even now while I'm writing this I realise I had forgotten a couple of thing, never mind, it probably wouldn't have made any difference.

The consultant listened carefully whilst I relayed all the symptoms to him. At one point he interrupted me as I had been trying to describe the incessant involuntary, rigid tensing up of muscles that occurred durng treatment and is still with me to a much lesser degree, when I had used the term dystonia. He asked me who had told me I had dystonia. I explained that in an attempt to find language to describe my symptoms I had looked things up in my family health encyclopedia and found this which term appeared to describe what I had felt was happening to me. (This was the The British Medical Association Complete Family Health Encyclopedia, published by DK).

The Neurologist explained dystonia was a condition not a description, I was grateful for the correction and apologised for using the term incorrectly and endeavourer to use other words to reflect this strange phenomena.

He realised from what I was saying that I had tried to research what possible causes there may be for my symptoms and he asked me what I had thought the problems may be. I told him honestly that I had no idea but because I had HCV I had wondered whether it was an extrahepatic condition related to the virus perhaps vasculitis. I told him that on the other hand I had also considered it may not have anything at all to do with HCV and had even wondered if it may be MS.

He then directed me to an examination cubicle and told me to take my shoes off while he examined my feet, testing reflexes etc. Whilst I was getting ready for the examination he began to dictate a letter to my hepatitis consultant, into his recording device, asking him for further information regarding my condition.

He then proceeded to dictate his notes into the recorder, he was going through my history from my file, malaria, yellow fever etc., and also dictated a note on the results of each consultant I had seen over the years, the rheumatologist, I'd had an ECG some years previously with negative results, gynecologist for endometriosis etc. Then he came to my hepatitis consultant's notes and he began to read something my consultant had written aloud into his recorder. As far as I can recall it went something like this, 'I have had difficulty convincing this patient that her hepatitis c is very mild with minimal damage. She is anxious and does not appear able to accept this.' I knew then my fate was sealed! After this I was conscious of the consultation with this man taking a different gear.

The neurologist concluded that he didn't think there was any of the things I had mentioned wrong with me, which was good, but that all my symptoms were all due to anxiety. I disagreed with him that it was all down to anxiety, I bravely said I felt that my hepatitis consultant's comments had swayed his judgement, not only that, but I felt what my consultant had said was not strictly true in that I had no difficulty at all accepting my hepatitis c had done little damage to my liver according to the biopsy 5 years ago. (I do wonder if there has been progression of damage to my liver in 5 years, but I did not mention this.)

He told me the doctor patient relationship cannot work if the patient does not believe or trust her doctor. He says my remark is casting doubt on his professional integrity, that I could go back to my GPO and request a second opinion etc.

He then went on to say that I had also been tested negatively for vasculitis in 2001 and that I had received a letter informing me about that. I told him I had received no such letter and I was unaware of any such test, I pointed out that I was extremely sick in 2001 after almost dying with malaria. He pulled out the letter, it was a letter to say the rf factor had tested negative after an earlier test had shown a mild positive result, there was no mention of vasculitis in the letter. He went on to explain that the type of tests spoken about in the letter would have identified any vasculitis. I accepted that that may be the case, but the fact was I had not received any letter informing me I had tested negatively for vasculitis and he was incorrect in asserting that I had this information.

He continued to again refer to dystonia, emphasising that I did not have this condition. I thought we had cleared up that point earlier, before his very brisk, and I mean brisk examination.

I felt I was fighting a losing battle, if I disagreed with him, he accused me of not trusting him in which case we could not proceed. He told me he would not carry out any scan tests, because if for example he found a aneurism it would only make me more anxious. I cried tears of frustration. He was going on about the aneurism and I have to admit I was not really listening anymore, I was trying to understand how we had got to this point of dismissal. He was speaking very fast which made it difficult for me to understand and process what he was saying. I just heard I was being fobbed off.

I have never denied being anxious, but I do still feel there is more to my condition than this alone. I was so disappointed to find there was no validation here. I also feel that my increasing stress and anxiety levels are directly due to the inept and piece meal medical attention I have been receiving since I first stepped foot on the treatment bandwagon and especially when treatment was withdrawn.

My reluctance to accept that all that I reported to the neurologist is solely down to anxiety is, to a large degree, due to the fact that for years I have laboured with vague, non specific, but remarkably debilitating symptoms, and being told time and again that its all due to anxiety. Then hey, quite by chance I am diagnosed with HCV and low functioning thyroid! So Hello Tokyo!!!

Further when I lay in bed wasting away with malaria, my GP made 2 home visits and even when I told her I had just come back from a malaria zone, she failed to recognise the life threatening situation I was in and diagnosed a sore throat! When I eventually got to the hospital, after my GP told my sister she was too busy to come visit me again, I was rushed straight in for a complete blood exchange which went on all through the night. I was so close to death, I was held up as a trophy of success in the hospital. The staff could not believe I had survived, so I praise God.

So please excuse me for having a problem accepting everything I am told by medics at face value. I would be dead today if everybody did that. There are other examples where I have been wrongly dismissed that I could cite but I'm sure what I have said is enough to illustrate my point.

I tried to be reasonable and asked the neurologist how I should deal with the symptoms, he said he could refer me to a psychiatrist. I am reluctant to see a psychiatrist because of the implications it may create with regard to my work. I am willing to give this serious consideration but only if it is absolutely necessary. This is freaking me out now, it is not where I expected all this to lead.

He began to dictate a letter to my GP, I heard him suggesting that it may be helpful to give the patient seratonin uptake medication. I had to interrupt him to explain that I have reacted badly to this medication. It seems this is the answer every medic I have seen has suggested so far, and when this is not viable there is nothing else.

He told me to come back in 10 months, when I cried tears of anger and frustration and challenged him, he offered to see me in a month.

I left feeling utter defeat. I am left to my own devices and take advice from others with hepatitis c on the forum and more privately off the forum. On the forum I post 2 questions, the first about symptoms, the second about the neurologist. You can read that by following this link.

From the forum I received a number of very supportive comments and helpful suggestions which take the sting out of the neurologist experience. I am overwhelmed with what needs to be done regarding instigating changes which may or may not improve my overall healthcare. Considering the time scales for any results to come from the following actions, right now I just don't want to go there, I simply do not feel strong enough at this juncture to take all of this on.

Write letters of complaint to the PCT, same to the hospital trust, write to my GP, change my GP, write to the hospital to get copies of my medical notes, write letters to dispute comments written therein. Write a letter, get a second opinion and change my hepatitis c consultant. Write a letter, get a second opinion and change my neurologist, etc.,etc., etc. Overwhelming but valid advice nevertheless. I was given very useful information by forum members and fellow bloggers about getting assistance in the form of an advocate through the Hep C Trust with all of this.

I can just see the result of me doing all that will be to prove what I believe the medics already think, that I am neurotic, that I am difficult, etc. I can see years of my life slipping down the pan while I get caught up in madness and bureaucracy, fighting to be acknowledged, getting sicker all the while.

I am advised more privately by others who have gone before me that I will just get sicker and sicker if I try to get some validation of my symptoms from the medical profession. The negative impact of taking this route, of trying to identify what is causing my symptoms is creating the type of stress that I should be avoiding like the plague. I may need to accept that I may have to manage these symptoms alone and unaided. I am soothed by these remarks that do not demand any more from me than I can manage right now. I realise I have to recover before I can proceed further with any of this.

I had another appointment with my hepatitis consultant on Monday 9 January, I felt I should proceed with that before I came to any conclusions regarding my present circumstances. I am fortunate that another blogger Paul Overcomer and his wife Sarah very kindly offered to support me by accompanying me to this appointment and I thank God for this and for them.

I will tell you what happened with my hepatitis consultant in my next post.

Aftercare 4 and Marathon Post

2006-01-06T02:27:00.000Z

This is most likely the longest entry I will ever post. It has been a marathon, but it does mean that I will be back in real time for my next post.

I have covered the whole sorry tale of my aftercare to date. I have simply been too sick to write this up at the time it was happening, but I did want to have a full record of the abysmal care I have received from the NHS during this time. Don't ask me why, I'm not sure yet, I will have to go back and read all the aftercare posts to get a real idea of the diabolical ordeal I have been through, then maybe I will email it to Tony Blair or someone.

If this post serves to do anything it may serve as a how not to do it manual. If you think you are being fobbed off by the medics, remember it happened to me first! Perhaps just knowing that systems can operate in this horrendous way may help you prepare damage limitation strategies.

So back to the story.

When I saw my consultant, the time he told me treatment would kill me and he would not give it to me again. I was devastated, already depressed from the meds, this news compounded the depression further. I can't say for sure, but I have found myself wondering over the last few months whether I would have recovered mentally and emotionally a wee bit quicker if I had still believed I could have a second attempt at treatment in the future. When my consultant said what he did, he kind of sentenced me to a life of hepatitis c, there was no hope, nothing to cling on to.

I can't help thinking that if he had just said something like, look it may take months for the effects of treatment to leave your system, so go away and recover from that and come back and see me in a few months and we will discuss how you could proceed. I go to see him next week and find myself thinking perhaps I could have handled the news I could not have treatment a bit better in my present, less depressed, state of mind.

Another little niggle was that at that last appointment I decided to say something about my quantitative PCR test not being done, I referred to it as simply my PCR test. He said it had been done and gave me the results, I think it was 612,000 which is low and probably reflects the claim that most of the virus is killed off in the first few weeks of treatment.

I pointed out that that was the result fo the PCR test done after I had finished treatment, the one doctor Rachael had requested and that I didn't have one done, as I should have, before treatment. He insisted I did have a PCR before treatment but changed the subject when I asked for the results. I realise now that he was talking about my qualitative PCR which I had done not once but twice, the second time was a mistake, they should have been testing me for Hep B and HIV, but somebody made a mistake.

I felt he was beginning to waffle about the PCR, when I thought about this later I began to suspect he was trying to confuse me as he never did give me my baseline viral load. I am going to bring this up again at my next appointment as I should have had a quantitative PCR done before I began my treatment. The nurse took the blood, for goodness sake, she even suggested taking it from my neck, I wrote about this in a previous post. Before treatment I had read about others finding at week 12 they had not had their quantitative PCR test done and I was determined to ensure this would not happen to me, so the best laid plans and all that!

If I have had the test done as he claims then I would be very interested indeed to know what my baseline viral load was before I had treatment. It does seem odd that he claims I had it done, yet as I mentioned in a previous post, when doc Rachael tried to get the results she was told by the labs they had never had a request for one for me. I need all this clarifying, at the moment I have an awful suspicion my consultant is taking me for a fool. I am also balancing this with the notion that the depression may be making me have negative thoughts and perhaps a touch of paranoia? I really would like to be able to trust my consultant.

The day after I had seen my consultant, 15 September, I go to see my new locum GP, doctor Zia for the appointment I had made the previous week when I had seen her. I was feeling a little stronger physically and thought I was beginning to get well. I spoke with her about what my consultant had said about never giving me treatment again and discussed the possibility of a second opinion, she agreed I could do this and I could choose who I went to see for the second opinion. We agreed I was too weak and depressed and didn't have the energy to persue this option at the time, but that I could do this when I had gathered my thoughts and felt stronger.

I decided in the meantime to suggest my own care package consisting of counselling, (as this is what the doctors at the hospital had suggested I needed and I was breaking down and sobbing at the drop of a hat), acupuncture, (as I had heard that a retired GP was offering this therapy through my surgery at a reduced rate), and finally massage to help with the extreme muscle tension, and soothe my shredded nerves.

Doc Zia agreed this was a good plan, I was glad she could see another side to me, one that was able to be positive and take control, which is the normal me when I am not sick. Doc says she will make the referrals for counselling and acupuncture, and that I could make my own appointment with the massage therapist who was advertising on the board in the waiting room.

I was looking forward to getting the counselling as I needed to get lots of stuff out of my system instead of dumping it inappropriately and alienating people. I was hurting terribly from relationships that had been damaged through the treatment period as I had felt others had let me down badly and not been there when I needed support, these were fresh, open wounds and I needed help to deal with this stuff.

I rang the massage therapist and got an appointment for the following day Friday 16 September. The next day I got a call from the surgery to inform me I have an acupuncture appointment on Monday 19 September at 5.30pm. I am feeling things are progressing well as I go for my massage appointment where the therapist asked me 3 times if my doctor had said it was okay to have the massage and I assured her she had indeed.

I had a wonderful massage, the therapist told me the story of her husband who had had a stroke and I burst out crying. Since treatment the depression could do that to me, sad adverts on the TV, one about a charity for sick animals and I sobbed and sobbed looking at this old, sick dog and thinking how cruel the world was and how could this poor creature cope if it was sick and could not tell anyone what was wrong. I even cried when Norris from Coronation Street stood up for himself when Rita and Emily were putting a dampener on his efforts to find employment at his age. (How weird is that?) What a sad, sad, cruel, old world, sob, sob, sob. I couldn't listen to anything vaguely sad and had to stay right away from the news, so keenly sensitive had I become.

The next day I wake up with a return in full force of all my symptoms and find myself once again confined to bed, weak with all the left side disturbed sensory stuff that I described in previous posts. I wonder what the hell had happened, I had been feeling well the previous day, I thought I was getting better, why was I back at square one? Was it the massage? Could it be the massage had moved things along in the lymph and released more of the toxic meds trapped there? There was no-one to give me any answers and I was disheartened to be so ill again and afraid.

I remained in bed the whole weekend and all day Monday, getting up only to attend the acupuncture appointment, desperate for some relief and to find something that will help me feel better. I am happy to think that the acupuncturist is a retired GP, she may be able to throw some light on what is happening, she may be able to help me with this depression, she may be able to relieve some of these weird left side symptoms. It was a real big effort to get to the surgery, throughout the consultation with the therapist I was constantly yawning. I gave this therapist all my symptoms and brought her up to date on the HCV treatment. What does this therapist say? She says I'm sorry but I cannot treat you, because you have had chemotherapy we have to wait 6 months for it to leave your system.

I was aghast! Didn't doctor Zia tell you the details in the referral. No! I now lost what little confidence I was beginning to build for doctor Zia, I also had my suspicions that treatment was denied because this therapist had only just learned I had hepatitis C and perhaps didn't wish to put any needles in me! Of course I will never know why she refused to treat me, I do know that if a proper referral had been made she could have rang me at home to cancel and saved me the hassle of getting up out of bed to go to the surgery and the utter disappointment I experienced when she turned me away. I have heard since then of many people who have acupuncture throughout their treatment, never mind 6 months after!

So now I'm having a fresh flare up of symptoms since my massage and as I have now lost confidence in Doctor Zia, I think it really is time I saw my own GP, so the next day, 20 September, I ring my surgery and ask for an appointment with doctor Ahmed, but I am told she doesn't have any appointments available until 29 September! I am offered either an appointment on 24 September with a completely different locum GP who I have never met before, or another appointment with doctor Zia on 26 September. Other than that, my own GP doctor Ahmed may be available to speak with you on the phone tomorrow.

I had a few things running through my mind, one was that my friend was getting married 28 September in Ibiza and I was hoping against hope that I may still be able to make it. I was originally supposed to be the maid of honour but had to back down from this due to sickness. When I had felt a little better earlier in the week I had resurrected the possibility of going over to Ibiza to attend the wedding again. I kept think as soon as I have a few good days on the run together, I will be on the mend and will go. Everyone was suggesting that it would do me good to get away. So that was one of the things I wanted to discuss with my own GP, but an appointment on 29 September would be a day too late.

So I quickly thought, I definitely do not wish to see a strange locum and have to give them the whole complicated story. I didn't think a phone call with my own GP would be quite the thing to fill her in on what had been going on for the past 5 weeks, so I had to opt for doctor Zia again on 26 September even thought I had by now lost confidence in her.

The next day 21 September I wake after an awful night, symptoms escalating and I am becoming anxious. I just want someone to tell me what is happening, why I am having these symptoms and still confined to bed almost 6 weeks since my last shot of interferon, why I am not feeling better and whether I should cancel the next massage appointment or if I should continue with it.

I ring the surgery and tell the receptionist I would like to speak with my own doctor Ahmed on the phone after all. I am told they will pass on the message for her to call me. I am really pissed off with the utter lack of a professional and available service from my surgery and I ring PALS not really knowing exactly what they do whilst I am waiting for the doctor to call me.

I have an interesting conversation with the local PALS they tell me if I can't get an appointment with my GP they will report her, I explain I can get an appointment with a locum and of course they can do nothing about that, the duty has been fulfilled. They give me the number of PALS at the hospital and I learn that these are the people who will process any complaints I have about my hospital treatment including missing blood tests, I tell them I will be persuing this at a later date. I am gathering information, I am learning about our health service and I have only recently found out what PCT stands for!.

I consider changing my GP and ring a surgery that has been recommended by a friend to see if they would accept me. They say not unless I am new to the area and do not have a GP or if I am unhappy with my own GP I have to write to the local PCT and complain and they will find me another GP. I'm not ready to take all this on, and really what complaint have I got as I can always get an appointment with a locum, I may not like it but its fulfilling her duty. I feel the same as I do about the second opinion from a consultant, it is too much for me to take on right now, I have not got the energy to make complaints, to persue matters or to make changes that aren't straight forward. It will all have to wait.

Eventually doctor Ahmed called me, she immediately lets me know she is running late.
I tell her that I am desperate to have some continuity of care, that I need to get to the bottom of problems, that I am sick of being told it is all stress and anxiety, that I feel that other stuff is happening. I further tell her that I think that 5 weeks spent mostly in bed is surely not right.

She cut in with, OK we'll run some blood tests. I felt a bit patronised and asked her if she didn't want to hear my symptoms. She said well I know if you've been in bed 5 weeks things are not right so we'll just do the blood tests. I took that as a no.

I explain that according to my consultant all the blood tests from the hospital are OK and if that is the case then perhaps we need to do specialised tests. I tell her I suspect an underlying disorder, I'm not sure what, perhaps vasculitis because I've read this can be connected with hep c. I am also considering I may have MS but I don't mention this in case she thinks I am off my rocker and a complete hypochondriac! Anyway she's the one who should be making the diagnosis.

She tells me to call the surgery tomorrow and make an appointment for the blood tests, she says she wants me to make an appointment and not just turn up so I wont be hanging around the surgery, she tells me she can't make the appointment for me as the surgery is now closed, she tells me to bring a urine sample when I attend the appointment. I felt I was being fobbed off and I felt she was losing patience with me. I asked if she knew when I was likely to be seen by the counsellor and she said she couldn't tell me as the surgery was now closed but she says she will chase up the referral the next day.

Her mobile phone began to ring and she asked me to excuse her, I knew I couldn't take up any more of her time, that was the feeling, the thought was she had rang her own mobile phone to get rid of me! More paranoia, I wonder? Whatever I never got to tell her my symptoms!

The next day 22 September I rang the surgery to make the appointment for the blood tests, the earliest one they have is 11.30 am 28 September, the day I'm supposed to be going to Ibiza, I am told not to eat for 14 hours before the tests. So it was clear there was no rush then. I began to feel my GP was just fielding me, when I presented problems.

I just felt defeated, part of me was thinking, if my doc isn't worried maybe I shouldn't be either. The other side of me was thinking that this woman had left me dying when I had malaria which resulted in me having a complete blood exchange. More recently she had also left me with a second hand telephone message saying that there was nothing she could do for me, that was the day before I got admitted into hospital. So as far as confidence went, there wasn't much of it about. I just wanted some bloody answers, was this so wrong?

I decided to try and call my nurse at the hospital and ask her for a reality check, last time I spoke to her some weeks ago she had told me that I shouldn't be having the symptoms any more, that the meds should have left my system. I also wanted some clarification about whether the massage was a good idea, whether it could have moved stuff in the lymph and made my symptoms flare up. My nurse wasn't available, I left a recorded message on both her contact numbers asking her to get back to me, she never did.

I tried to call the hepatitis c nurse at another hospital, the hospital I am thinking about going to for the second opinion when I feel strong enough to do this. I think this will give me an insight into how they operate and could indicate whether I should move over to this hospital. I would pick up clues about the nurse there and whether she would be any better than my own had been. She wasn't available, I left a message asking if she could give me a call, saying that I was considering having treatment for hep c at the hospital and had a couple of questions. I never got a call back.

I cancelled my massage appointment the next day, I was disappointed because apart from the flare up of symptoms last week, it had felt so good and relaxing to have this therapy. As I was still clinging to the hope of going to Ibiza I didn't want to do anything that could possibly set me back.

Over the following weekend I begin to feel a little better again. I am not getting overexcited anymore when I feel an improvement as I am beginning to recognise the one step forward, one step back routine. I go to see doc Zia on Monday 26 September, I tell her I am feeling a little better, I decide it would not help my case to tell her how disappointed I was about the acupuncture referral, I've learnt that people dislike you if you point out their mistakes. I ask her when I can expect to see the counsellor, I am getting desperate to see someone I can offload all the hurt I am feeling to. I feel it is becoming damaging and humiliating to pour out negative feelings to anyone who asks me how I am, but that is what I find myself doing to my own horror. Doc Zia says she will chase the referral up.

Doc Zia thinks I should go to Ibiza, she thinks it may do me good to have a change of scene. My mum thinks it would do me good, my partner thinks we should go, my friend would be delighted if we went. The flights had already been booked for 28 September, that was 2 days away. I reasoned if doc Zia isn't concerned by my symptoms, if my own GP wasn't concerned by my symptoms so much so that I could wait a week before the blood tests were carried out then maybe I could really consider going to the wedding. Perhaps the break would be the catalyst back to health.

The next day I was still feeling OK, I don't mean OK how I normally feel, I mean OK as in relatively OK, as I was out of bed. That evening I began to prepare for the blood tests I was to have the following day and left a bottle and note on the loo so I wouldn't forget the urine sample in the morning. I had had about 4 good days on the run now and was mentally making plans to go to Ibiza the following day if I didn't have another flare up.

The next day 28 September I go to the surgery for my blood tests, I have decided I am going to go to Ibiza that evening and I am planning to pack when I get home from the surgery. After about a 30 minute wait I am called in to the treatment room and my heart sinks when I find a new, male, locum nurse. He was waffling away about how much blood he needed to take and I could tell he was reluctant and this was confirmed when he began to put on plastic gloves whilst telling me he didn't usually bother to do this, so reluctant was he in fact, that to cut a long story short, he put the needle into my arm a mile wide of the vein. I felt pretty sure he had done this on purpose and that he intended to avoid being anywhere near my blood. More paranoia. I have no problem that he wore the gloves, I am glad he was sensible and did that. He announced that he was going to leave it as he didn't want to stress me out by digging about, although I just wanted him to get on with it, I'd never known anybody faff about so much.

He told me I would have to wait until my GP finished surgery and he would ask her to take my blood. I was getting uptight again, I knew my veins weren't brilliant and I suspected my GP would have even less success as she had even less practise taking bloods. I was getting stressed as I had a big day ahead of me packing and everything. I really needed the day to go smoothly without setbacks. I waited a while then I suggested I go to the hospital for them to take the blood, its not too far and I could not bear sitting there thinking about how my doctor would not get a vein. He agrees it is a good idea, I feel he is just glad to get me off his hands, I am angry with him that he didn't try properly.

I am annoyed that I didn't think to go directly to the hospital all week. I am slightly peeved that they didn't suggest the option to me when I asked the reception if she couldn't get me an earlier appointment.

I got to the hospital and the waiting time for bloods was over an hour. I realised that I had forgotten to leave the urine at the docs, so I ring up. The receptionist tells me that they are closing early as it is half day so if I do not get my sample back before 1pm it will be too late because the man who comes to collect the samples will have been and gone! Stress levels increasing. I cannot stay at the hospital for the bloods because I will not make it back with the urine sample. I have waited a week to get these tests done, if I don't get them done that day goodness knows when they will be done if I am going to Ibiza.

In my panic I tried to make a rational decision. I decided I would be better getting back to the surgery and letting my GP take my bloods after all, she would be finished with her patients by the time I got back and then both the bloods and the urine could be collected and taken away for testing and I would probably have the results when I got back from holiday. I rang the surgery and told the receptionist what I was going to do and why.

I got back to the surgery my GP told me that I had missed the man who collects the urine and blood! She tells me she would take my bloods but I would have to drop them back to the hospital for testing myself. I am by now stressed to the max, I have done my very best to ensure these tests were done, but I could not tolerate the thought of going back to the hospital. I was exhausted and still had to collect some shopping and go home and pack, and I was still very weak. I began to think I was not going to make my holiday, I covered my face with my hands and broke down crying, it was all too much, I was defeated again.

My doctor suggested we leave the blood tests until I got back from holiday, then I could just take the form to the hospital when I was ready and they could take the bloods and do the test. She prescribed some Valium to calm me down and told me to go on holiday and try and forget. Yeah, thanks.

I couldn't help wondering why she hadn't suggested the hospital route for blood tests in the first place either instead of having me wait a week for a crummy appointment anyway. I return home and spent the rest of the day between bed and packing. I have a bit of an altercation with my partner and this results in me crying, shouting, screaming like a banshee, exhausting myself in a sobbing heap. My mum stands by speechless, as I alternate between crying and insisting I cannot make the journey to pulling myself together and valiantly saying I'll be alright once I get there.

I continue in this yo-yo mode until 15 minutes before the taxi to take us to the airport arrives. I decide that I have 2 hours at the airport before take off and I can come home any time if I begin to feel I need to do this. I am still very nervous as although no-one else seems to be rushing to find out why I am having such strange and debilitating left side weakness symptoms, I am personally very concerned about my condition.

We get to Ibiza, we don't stay with my friend's party but close by in the next street, so I am not disturbed by the socialising that I am definitely not up to. I am in a black depression and my partner's life is hell. I cry all the way from the airport to our hotel and spend the next 24 hours in bed with the curtains closed. I felt sure I shouldn't be there, I was in no fit state for this.

We hired a car and my partner coaxed me out of the room and persuaded me to go for a drive. Whenever we reached our destination point I was too weak to get out of the car and we would just have to drive back to the hotel, me with tears streaming down my face. I don't think I have ever cried so much in my life.

All this crying was new to me, I don't often weep, well no, weep is not a strong enough term, it was definitely crying or sobbing.

Anyway I did have a couple of ok'ish spells where we went for short walks, and although it was touch and go again, we did get to the wedding where I was able to stay for the blessing and the feast. It was weird to be there feeling so ill, I don't recommend it, but now that its over I am glad that I made it and have the memories. It was a great wedding and if I would have kept this blog up to date I would have given you the full, sunny story. This would have been a happy post.

I was glad to get home to UK on 5 October and I made an appointment to see my GP. I felt I should keep her informed as the symptoms had not subsided as everyone seemed to think they would, the symptoms were as bad on the holiday as they were at home. I got an appointment for 10 October.

The following day I decided I wouldn't waste any more time and I would go to the hospital and get my blood tests done. I had eaten a snack around 1am the previous night so I planned to get to hospital around 3pm and not eat until after the bloods were taken.

It was interesting at the blood clinic, one of the nurses is an old school friend of mine and she was on duty and took my blood. We chatted about the runaround I had had with the male nurse not getting my vein, I told her the saga about coming to the hospital for the bloods and they were so busy that I had dashed back to my GP's surgery only to miss the daily bloods collection. Before I could finish the story, she chipped in and said, 'so did your GP send the bloods in a taxi?'!!! Well no she didn't, and I felt a little upset to realise that she could have done this.

I got back home and noticed a banana skin on the coffee table and knew straight away that I had eaten that before I left the house that day. I wake up so groggy and brain fogged I do things before I am really awake. I walk and I talk but I am not really compis mentis. I realise this will affect the glucose test. Argh! At least the other tests will get done I thought.

On 10 October I went to see my GP, I asked her for the blood test results and reported the continuing weakness and depression and left side disturbed sensory symptoms. She didn't comment and was looking at the computer screen, after a while I enquired, 'Are they back?'
'No, nothing is bad' she said. This was typical of the communication problems that often occured as my GP is Asian. 'All the tests are fine.' More silence.
I tell her I am feeling very let down by my treatment at the hospital and ask her if it is normal practise to send people home with no support in place, who helps people who are too sick to care for themselves I ask, who is responsible to coordinate their care?
I tell her I am writing everything down that has happened to me at the hospital and that I may eventually send it all to my MP. She doesn't comment, she keeps looking at her computer screen, but her body stiffens and she raises her eyebrows, but she doesn't look at me.

I give her the urine sample, and watched to my amazement as she took a slip of litmus paper and stuck it in the sample!! What was going on? I thought she had to send off the sample to the lab for the tests, but no what she did was a simple test for sugar. I couldn't believe it, why didn't she do this test the day I had rushed back with it from the hospital? Why did she tell me I had missed the man who collects it? I realised she wasn't going to bother doing the test she had originally planned to do. I felt I was being taken for a fool again.

I continue, I was too sick to look after myself I say, and there was nobody there, I didn't have people at home to be responsible for me and I couldn't even walk to the loo unassisted. I remind her the same thing happened when I was discharged from hospital after the malaria. She says something about occupational health that I don't quite catch or understand, but I can tell by her tone she is getting irritated by me.
I tell her about what happened with the massage, and I tell her I was upset that the acupuncturist refused me therapy. This is the nearest I got to directly complaining about the care I was getting at this surgery. I remind her again I am still waiting for my counselling appointment, she tells me she will chase it up again.

She then stands up indicating by her body language the session is over, she says, 'OK then I will make referral to occupational health, it may take up to 10 weeks.' and just turned and walked out of the room, no goodbye or anything! I know I have pissed her off, but I am not sure why, neither am I sure why she is referring me to occupational health, I have no idea what they do, and even though I am still weak I have improved to the extent that I can do a short shopping trip and cook my own food, basically I am by now independant.

I leave feeling a little upset. The next day I am still upset, I decide I am going to ring my GP and see what the problem is and why she is referring me to occupational health. To be quite honest I cannot really recall what I said but the conversation left me feeling better than when I had left her surgery.

I am getting out and about for short periods, but still weak, easily exhausted and having regular flare ups of pronounced left side weakness, the rest of the time it is there but in the background. I am fed up with telling the GP, I think if things don't deteriorate further then perhaps I will begin to get well.

Things stabilised and although I wasn't well I didn't have a flare up for a couple of weeks and by 1st November I had 2 overseas students move in from the local college. I had been clearing their rooms and preparing for them coming, I only had 2 days notice. The same day the electrician decides to come back to finish some work he'd left on a previous occasion. I was also trying to resolve some problems with BT broadband, then out of the blue I had a mega flare up and had to drop everything and lie down. When this happens I find it difficult to even speak. This was so bloody frustrating and disappointing , I thought I was getting better. The next thing my hairdresser arrives, I know her very well. I had made an appointment with her a week earlier and had completely forgotten. I cry when I see her as I am so beaten down and we are friends, she is visibly shocked by my appearance and that frightens me too, she knows me as strong, positive and full of life, she hasn't seen me for a while.

I rest and don't have another flare up until 4 days later on bonfire night 5 November. I am so bloody depressed by my situation. I can't do anything physically but would love to have a massage, I still don't know whether this is safe. I decide I will try to call my nurse at the hospital again, I can hardly believe it when I get through to her. I tell her I left a couple of messages for her a few weeks ago to get in touch with me. She tells me she got them and called me back but no one was home and she didn't bother leaving a message! Thanks! I asked her was there anything like aftercare or after treatment support for me at the hospital, she said no, once treatment is over you go back to your GP for support, I tell her my GP has no experience with my condition.

I ask her if she could perhaps advise me about whether the massage would be OK and I tell her about the flare up I had after the last massage. She says the best advice she can give me is to leave it 6 months as that is the amount of time it can take for the meds to leave your system. I interpret this to be a knee jerk response and that she is covering her back, she had told me the other month that the meds should have left my system a couple of weeks after I had stopped treatment. Waste of time.

I go to see my GP again on 7 November and report the recent flare ups of left side disturbances, she began to waffle about in that case it was obviously nothing to do with the migraine that we thought it was. I was really puzzled by this as we had never had a conversation about migraine but I don't say anything! Why confuse a confusing situation any further? She says she will refer me to a neurologist but I may have a bit of a wait. I am so relieved to see that at long last she is taking me seriously I don't mind the wait as long as I know I will be seen by someone who will investigate my condition. I ask her when will I ever get to see the counsellor I have been referred to. She looked shocked, 'have you not heard from them yet?' she asked, and then promised once again to chase them up.

After seeing my GP I thought long and hard and decided if I had a flare ups without the massage then my theory that moving the lymph caused the flare up was probably incorrect. I took a chance and had the massage, it was bloody marvellous, goodness how it soothed my tired, aching, nerve wracked body. I booked to have two massages the following week and the week after that too! This was the nicest thing that had happened for me, what a shame that through lack of knowledge or guidance I had denied myself this comforting, soothing therapy.

I continue just getting on and waiting to feel stronger and eventually went on holiday to the Red Sea and I have posted about what happened there, yet another flare up. The flare up stayed with me on and off for a couple of weeks and Christmas was approaching.

I finally see a counsellor 7 December. Not sure how this will go, its early days, but can't help the negative thought that its all a bit late, I needed this stuff months ago.

I was again concerned that I wasn't making the recovery progress I had expected, it was one step forward, one step back and very occasionally two steps forward. I was desperate for some answers, so I decided I would try to hurry my neurologist appointment along. I thought I would call them and see if they had any cancellation appointments, so I rang the docs on 13 December to see who they had referred me to. To my absolute disgust and horror, the referral had never been made!!!

The receptionist was full of apologies and tells me a new system has just been installed where they can make their own appointments directly to the consultant online and she had got me one for January 5. She assures me that even if my original referral had gone through I would not have got an appointment that quickly. I don't know if this is true or not, I am worn out with this struggle and I am feeling dreadful.

I get an appointment to see the semi locum Doc Zia on 15 December, the left side stuff is on the wane by the time I see her, she detects an infection and prescribes antibiotics, amoxycillin 250mg 3 x daily, and off I go. I have got a sinus infection, this is a chronic condition with me, I waste months of my life at a time suffering malaise, headaches and facial pain with this persistent condition. I am glad we have caught it before Christmas.

The antibiotics run out 22 December but the infection still had a grip, I had some of the same type of antibiotics left over from what the hospital gave me in August, only they are 500mg. I take one thinking this will clear up the last straggly bit, but the infection persists. I try the same tactic the next day with the same negative result, and of course it is Friday 23 December, not chance of seeing the doc, I don't even try, I decide to self medicate and up my dose to 3 x daily. I kept this up for a further 4 days and that broke the back of the infection although I believe there is still a little remaining even now, but not enough to give me headaches thankfully.

That left me pretty much out of the game for Christmas, but I perked up and surprised myself on new years eve and went to a party for a couple of hours, found the energy to dance a fair bit which was a minor miracle as far as I am concerned.

That about brings me up to date. There may be the odd detail I forgot to include, I know I went to A & E sometime at the end of September in an attempt to short circuit the system and get some investigation of my symptoms but I was redirected to my GP.

Today in real time 5 Jan 2006, I went to see the neurologist, but I'll write about that in my next post.

I can hardly believe anyone would have had the stamina to read the whole of this post. If anyone managed this, please leave a coment and let me know and I'll buy you a drink if you are ever in Manchester, you deserve it.

Treatment will kill you

2005-12-30T13:39:00.000Z

Okay so another attempt to bring this blog into real time before the new year, I've not quite got there even with this entry, but it is one step further along the road. I have an appointment to see my consultant in January, so I would like to be upto date by then. The way its going I'll be lucky to get the job done by the chinese new year!

Talking of New Year, best wishes to everyone who reads this blog, I hope for many of you 2006 means a healthier and virus free new year and new life for you and/or your loved ones.

If you are reading this and contemplating treatment, please be aware that the reaction I had to interferon and ribaviron is very rare and it is unlikely to happen to you.

So I waited patiently for almost a week until 8 September when I could see my doctor. Most of the week I spent in bed, getting up for only short spells at a time when I felt I had a little energy. Sometimes I could function for an hour or so at a time, sometimes just a conversation would wipe me out and send me back to bed.

I arrived for my long anticipated gp appointment, now I would report all that had happened to me to my doc and she would hopefully get a care plan together where there would be some semblance of continuity of care, we would discuss ways forward, and how to manage my symptoms etc.

I entered into my doctors office and found I was being greeted by a complete stranger, a locum, doctor Zia!! I just burst out crying! I was so disappointed, angry and overwhelmed that I would have to explain what had been happening for the last weeks to a locum doctor who I thought I would probably never see again. I apologised to doctor Zia for breaking down and explained how much I had felt I needed to see my own gp at this point and how I hadn't been prepared to see a locum gp and how I just wanted to be seen by someone who would monitor my condition and be responsible for my continuous care.

Doctor Zia asked me if I had asked if I would see my own gp when I made the appointment. I explained that I hadn't asked as it was only a one gp practice I had reasonably presumed that I would see the only gp who works there! This question by doc Zia irritates me slightly, I think why is the bloody onus on me to ask? I think I ring the surgery and request an appointment to see my gp, the only one who works there, why on earth should it enter my mind to ask if I would actually see my own gp? To my way of thinking the surgery should have informed me that my own gp was unavailable and advised me when I could see her. Anyway the doc tells me that she will be working at the surgery more regularly as my gp is reducing her hours. Well thanks for letting me know about that.

I try to explain to Doctor Zia what has and is happening for me in some understandable order, she seems nice and she is young which is no bad thing. I ask her if she is familiar with hepatitis c and the treatment, she tells me she isn't. I persevere. Doc Zia tells me I am stressed, she's dead right there, she offers me antidepressants!! NO THANKS, I say I think its best I just leave all that stuff and just let things settle. I ask her if all the left side weakness I am suffering is a typical symptom of stress, she admits that it isn't really something she has come across. Great.

Doc Zia agrees I need continuity of care and admits they do not have any results of any blood tests or any notes from the hospital about what's been happening with me or my treatment. Isn't that just bloody marvellous? She says she will write to the hospital and tell my consultant that he needs to see me. With that I leave feeling that the whole exercise had been a bit of a waste of time. apart from an offer of antidepressants there was nothing this doctor could do for me or say to me at that time.

As I leave I make another appointment to see doc Zia the following week on 15 September. I'm finally learning to make contingency plans, not just leaving the surgery empty handed and finding a few days down the road things have gotten worse then wait another week for an appointment. I am beginning to realise that carrying hepatitis c symptoms for years and not getting a diagnosis has been partly due to being expertly fielded by the system when things aren't easily explainable and left to manage, when you finally get to the doctor the symptoms have subsided so nothing is done and you just wait for the next episode and so on. I felt I should be monitored by somebody whilst I was having those awful symptoms, that someone should know what was happening for me. I returned home exhausted and back to bed.

My next medical appointment at the hospital was 14 September, when I was to see doc Rachael who had prescribed the cipramol for me and who was on holiday when I reacted badly to these and it all went pear shaped. Doc Rachael had advised me at my last appointment to have my neck xrayed before I saw her again. I was still feeling dreadful but glad that I would be able to speak with her about the reaction to the cipramil and the continuing symptoms of left side weakness and hopefully she would investigate that now. We had got a little care plan together last time I saw her, and although the plan had gone to pot, at least here now was the first symbol of continuity of care as I would be seeing the same doctor twice in succession. Well that is what I had thought.

I turned up for my appointment and informed reception I was to go and have the xray before I saw the doc, and off I went. I came back to the waiting area and the nurses were flustered when they saw me, apparently they had been calling my name and looking for me for the past hour, no one had informed them I was in xray they thought I had gone home . 'That was despite the fact that xray had phoned the reception and advised them that I was going to be delayed!

One of the nurses took me off to weigh me and told me I would see my consultant and not doc Rachael. I was disappointed and upset by this as I had not seen my consultant since before I went on treatment, now I would have to fill him in on everything again and bring him upto speed with what Rachael and I had agreed before we even got around to my current state. I had so much I wanted to discuss with him and I wasn't in the least bit prepared, I wished I had known beforehand that I would be seeing him instead of Rachael, my thought processes were too slow to adjust to this new development.

I went in to see the great man himself. He told me he had received a letter from my gp requesting that he see me, so that happened much more quickly than I had anticipated. Without much preamble he clipped my xray to the wall and went into a long sermon about my neck, about how it was not as bad as his, about how he would prescribe me a collar to wear, about putting a hot jet of water on my neck in the morning in the shower! The more he went on waffling away my consultancy time, the more uptight I became. This is not why I was there, I had been dealing with spondylitis since I was 25 years, this was not why doc Rachael had requested the xray. I see the physiotherapist for this type of discussion.

He finally began to speak about my treatment and that's when he dropped the bombshell! 'I will not be putting you back on treatment for the simple reason that treatment will kill you'!!! I was in shock, this was not what I expected to hear. My mind was racing, 'Couldn't you put me on a child's dose?' I ask.
'If I put you on a child's dose you will die'!! Those were his words plain and simple.
I asked him about a biopsy to check how my liver was faring. 'I will not give you a biopsy because there is no point, what is the point of knowing you have liver damage if you can't have the treatment?'!! I am doubly shocked.
'But you know I have genotype 1b', I say, 'and you know that this can mutate to cancer without intermediate cirrhosis, shouldn't you do a biopsy it has been 4 or 5 years since my last one.'
'Even if you had cancer I would not give you the treatment', he said. 'Look, your blood tests are ok, we will keep monitoring them, come back in 4 months.'
I could not take all this in, all the things I wanted to discuss went out of the window. I left with my head in bits with all my awful symptoms, with the full knowledge that that was the end of my current care there, no matter how I was feeling. I returned home and back to bed, isolated and with ever deepening depression.

That's it for now. I will endeavour to complete this soon. Still got more of a nightmare with aftercare from my gp and locum to report as well as the accupuncture saga. It will have to wait until next time.

Christmas Humbug

2005-12-19T18:41:00.000Z

Well Christmas is almost upon us. Joy to the World!

I wanted to take this opportunity to wish all visitors to this blog, especially fellow hepatitis c bloggers and forum members a blessed christmas and a healthy, happy new year.

Let's hope that the new year brings healing and recovery for all who live with the virus and those who are on the treatment journey.

God is great, nothing is beyond Him and I pray for new cures and a better understanding of this disease in 2006.

I don't know about you but I find the true meaning of christmas has very much been forgotten. I had trouble finding any christmas cards in my town that made any reference to Jesus Christ. Christ, as they say, has been taken out of christmas.
Not in my heart, He is my hope and my salvation.

Anyway if you want to find how to get into the real spirit of christmas follow

this link.">

God bless you all.

'The word became flesh and dwelt amongst us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth.'
John Ch1 v14

Red Sea and Aftercare part 3

2005-12-12T16:22:00.000Z

The holiday to Hurghada in Egypt was great, sun, sea, rest and relaxation. Unless you are into diving, the red sea is very much a hotel based holiday, but the hotels by and large, are quite luxurious and usually have good entertainment programmes. Having taken winter holidays in Sharm el shiek and Taba in previous years, we were pleasantly suprised at just how warm it was in Hurghada this time.

My health was ok initially and because of this I got quite excited at the prospect of taking an organised tour to Luxor and visiting the Valley of the Kings and the temples of Luxor and Karnak. Unfortunately the day we should have booked giving the required 24 hours notice, I had a flare up of symptoms/side effects (?) and we had to shelve the idea. Despite this we continued to enjoy our holiday, it just meant we stayed closer to the hotel, and with the flare ups I found out what 'shop till you drop' really felt like.

Our hotel provided a different act each night, eg, acrobats, snake charmer, magician, belly dancer etc, but our favourite was the strong lady. This young woman performed a number of impressive stunts, eg, she took a large slab of concrete which after she had got 2 men from the audience to place on her stomach and sit on it, she placed on her head and got her male assistant to smash it in two with a lump hammer, it was painfully fascinating to watch. Next she took 2 ladies from the audience, put one on her back, carried the other in her arms and bounced up and down on a bed of nails. Man she was tough!

Back to my aftercare story...

The day after I had seen Doctor Racheal, Thursday 1st September, I took my first dose of cipramil. As the day progressed I became more and more zombie like with increasing anxiety and more pronounced leftside weakness. Finally a return in full force of the old tremor symptoms and the violent jerky wake ups, the waves of weakness, muscle tension, down bearing pressure, and the mental confusion.

I was so disappointed, I had thought that when I had visited Doc Racheal yesterday that I was on the mend and just had to take things slowly and work on the depression, but the pills were having a dreadful effect on me and I was back in bed. It was clear to me I would not be able to continue on these pills, the doc had not warned me about any of this, except to expect perhaps a slight reaction, but this was intolerable, I was back to square one.

I rang the hospital to see if I could get a message to Rachael and see what she had to say, I was told she had gone on holiday. It seems just when you think you are getting somewhere with a coordinated health plan, the continutity is lost again. I couldn't bear the thoughts of going through the rigmarole of trying to explain my history and symptoms again with the secretary so I just left it there and tried to collect my thoughts, which was not easy.

I lay in bed watching a shaft of sunlight on the bedroom ceiling, that with every car that passed by the house, appeared to sweep across the room then shrink back into itself, before returning to its original spot . I found myself hypnotised by this repeated reaction of the light, in a very wierd way, almost getting taken in and lost in its movement.

I could not think straight and became confused. I shook myself and rang the NHS helpline, remembering they were the people who made me feel least like a nuisance last time I had problems. They advised me that if things got any worse to go to see my gp or get to A and E.

I knew I would not be able to see my GP and I didn't want to have to go down the A and E route so I rang the hospital again and made an appointment for the attenders clinic the next day.

After a very uncomfortable night I went to the attenders clinic on Friday 2 September. I was initially pleased to find that I was seeing Doc Lucy, who was the doctor I'd seen on the previous saturday when I had been admitted into hospital. I thought at least she will understand what has been going on and I only have to fill her in on what happened with Doc Rachael and the antidepressants.

Just as I was about to enter doc Lucy's consulting room, my consultant passed by who I hadn't seen since before I began treatment, he stopped when he noticed me and aksed me why I was there, I explained I had reacted badly to the cipramol, he muttered something about oh Rachael shouldn't have given you those. At the same moment Lucy waved me in, my consultant moved on and the moment was lost. I was too out of it to take control of that situation, to call him back, ask him to clarify etc. I was stooped, my movements were very slow, I had an up and down kind of vertigo, my thought processes were crawling along.

I began to give Lucy the update and explained all the leftside weakness and disturbed sensory stuff, 'oh you are very stressed' she said, 'so the antidepressants didn't work then, well let me give you some different ones.' I was horrified, I couldn't possibly take anything else, I told Lucy I did not think I would tolerate any more meds and that I needed to feel better not experiment with stuff that would more than likely, considering my history, land me back in bed feeling dreadful.

'Are you back at work yet?' Asked doc Lucy. I asked her if she was joking, I couldn't believe this doctor who saw the weak and debilitated state I was in just 6 days previously when I was admitted into hospital, who I had just described the continuing hemiplegic like symptoms to, who I had described the severe reaction I was still experiencing from the single dose of cipramol, could possibly imagine I was back in work!!! I knew then that she did not have an inkling of what I was experiencing, it was a scary and sobering moment.

Let me just try to describe the leftside stuff, its like being made of a soft metal and someone placing a magnet on your head and drawing it slowly down the back of your skull, across your cheek, then down the left side of your body, the pull being felt more acutely at the point the magnet is passing. The sensation is not static it moves and travels in a fluid motion all over the left side of my face and body.

Lucy continued, 'you need to get up early, not sleep through the day, keep active..' etc, etc. I had lost all confidence in her by now. Didn't doc Racheal 2 days before admonish me to forget the 'full of beans' Poppy for a while and resign myself to the fact that I needed to just rest?! I found these contradictions difficult to deal with and difficult to question in the poorly state I was in.

I asked if the thyroid function test results doc Racheal had organised were back yet. I was willing by now to entertain the idea of increasing the tyroxine as I just wanted to feel better. 'Oh we don't have one of those' said Lucy,
'but doc Racheal requested one' I protested.
'well' said Lucy, 'its not here and there has not been another one done for you, but I do have your previous one and that one is fine.'
'If that one is fine', I said, 'then why did doc Racheal suggest I increase my thyroxine?'
'Oh I've no idea', she began to waffle and search down her computer screen, 'your cholesterol looks ok', she offered.
I was puzzled, 'is it really?'I asked,'it was high a few weeks ago'
Doc Lucy scrolled down her screen again, 'oh yes you are right it is still slightly high, I was reading the wrong one'.
I decided I was wasting my time, Lucy had no answers, explainations for my symptoms or solutions, I doubted she knew what the hell she was doing at all. I left feeling very poorly indeed, confused by the contradictions and upset at the lack of continuity of care and angry again that yet another blood test had gone astray. To date now that had been a HIV test, a Hep B test, a quantative PCR and now a thyroid function! It must be a record.

It was 5 weeks since I'd started treatment and 3 weeks since my last shot of interferon and I wanted some answers or understanding of what was happening to me. I was sick of being passed from pillar to post, apart from the brief passing in the corridor I had not seen my consultant and don't ask me where my nurse was I've no idea.

I realised that the system was not working for me, I had thought someone would say, this is what is happening to you, this is why it is happening and this is what we/you need to do, but I felt I was not really being listened to, and definately not understood. I decided I had to get to see my GP bring her upto date, in order to care for me correctly she needed to know what had been happening and perhaps she would take my symptoms seriously or have some answers.

I rang my GP but could only get an appointment for the following week, Thursday 8 September. I was disappointed to have to wait a further week, I just hoped I didn't have a stroke or something in the meantime. I was really quite frightened now by my symptoms and didn't think I should be spending most of my day weak and in bed.

I'm going to leave it here for now, but I do so want to bring this upto date before Christmas and the new year, it is taking me much longer than I anticipated to bring this story back to real time. Next time I will tell you about my experience with accupuncture and massage and hopefully bring you to the conclusions made by my consultant. In the meantime I wish all of you currently on treatment a very gentle time and ask all of you considering treatment to remember the reaction I had to the medication is very rare.

Aftercare 2, and PCR Testing

2005-11-22T12:25:00.000Z

It is now 16 weeks since I had my taste of treatment. I am feeling much better than in my initial reports, laughing a lot. I went out for lunch with a friend last week, it was lovely to begin to socialise. I am getting impatient to get this blog upto date and back in real time but find there is still much I want to record before I can do this. Those of you trawling blogs looking for information may wish to jump forward to the bold print where I explain my understanding of the PCR test.

I want to continue with the saga of my aftercare until it reaches its conclusion and the verdict from my consultant, so thank you for continuing to bear with me whilst I get on with this. I do still feel I need to get it all down in order. It kind of softens the blow to read it in installments, I want to finish it then read it all at once as that is how it happened, then I may know where, if anywhere I want to go with it. Writing this peice eg, brought to mind the sheer incompetance around blood testing at my hospital and may still result in a formal complaint, but I need to see everything together first.

I am continuing to recover my health, slowly but making progress. I seem to have increasingly longer runs of good days then a bad day. My energy levels are still very low and I can only easily do 1 thing a day, eg I would find it exhausting to go shopping, visit a friend for coffee, then take in a movie at the cinema. I am still having sensory disturbances but these are very much in the decline. The depression is easing, which is a marvellous thing. My concentration is appalling and I can only do what I feel to do, it is hard to direct my mind to do things that need to be done.

The good news is that I am going to Egypt on Friday, to a little place called Hurghada on the Red Sea. I just want to get away and get some sun on my face after spending most of the summer confined to bed. Some of you may know that I went to Ibiza to attend my friend's wedding recently, but you may not know that I spent most of that week in bed there too, very weak and poorly, so now I want a break where I can actually enjoy going out by the pool and having walks in a pleasant climate.

After my discharge from the hospital on Sunday 28 August, I was still very weak and I had to use a wheelchair to get around the supermarket and go straight to bed once I had done this.

I had an appointment to see my consultant on Wednesday 31 August and was looking forward to seeing the big man himself and getting some clarification as to what was going on, I was still in shock at the severity of my symptoms and had yet to have any answers as to why had I reacted so badly and how we were to proceed.

When Wednesday came around I felt I had picked up a little, I no longer needed a wheelchair to walk short distances and although I could break down and sob at the drop of a hat, I was also laughing and chatting that day, pleased to be making progress physically.

I went in to see my consultant only to find it was doctor Rachael, the first doctor I had seen at the attenders clinic who had thought at that time I had asthma, though later I found this was not the case. I was disappointed I was not seeing my consultant as I had still not seen this man since about a month before my treatment began, but I tried to remain positive.

I explained many of my symptoms, especially the left side disturbed sensation stuff, and the doc gave me a physical examination. She suggested we try increasing my thyroxine, I was not sure I wanted to mess around with this as I was anxious to get well not to create further problems by experimenting. I asked the doc if this was necessary and she said that we could leave it for now, take tests today to check thyroid function and look at it again in 2 weeks when we have the results.

(I also had a little inner conflict and confusion going on as I remembered when I had been in hospital the first time, one of the docs had said that my T4's were high but they didn't up my dose then. Also I had been told 3 days before, on Sunday when I was discharged from hospital that all my bloods were fine. I didn't mention any of this to Dr Racheal though as I had all kinds of other stuff racing around my mind at that time).

So doc Rachael observed that I was obviously depressed and she said I needed my mood lifting, she suggested she try me on some antidepressants and I told her that I had reacted badly to these in the past when they had been prescribed for bereavement. She recommended I try a new type called cipramil and to take a low dose, she said these pills would effectively gently bathe my nerves in seratonin and give me a lift. It sounded absolutely wonderful, bathing my nerves, yes I wanted some of that, so I agreed to give it a go.

The doctor was pretty sure that the left side weakness was due to stress and anxiety, she said, you must forget for the moment that the old full of beans Poppy is gone for a while, and you should accept that you need to rest, you need plenty of rest. She acknowledged my disappointment in the system whereby I never saw the same doc twice on the run etc. Doc R wanted to xray my neck to check the pain I have there (and probably the dizzyness). I explained it was not pain but disturbed sensory stuff on the left, although I do have long standing and painful spodylitis on the right.

Dr Rachael advised me to start taking the cipramil the following morning and if I found they made me a bit sleepy to take them in the evening the next day. I was to go back to see her in 2 weeks, I was to have the xray done just prior to my appointment with her and bring the xray to the consultation where we would look at it together.

Well this sounded like a jolly good plan, I had already got a bit of physical energy whereby I didn't need a wheelchair, I was to have more blood tests including thyroid, I was going to have my neck examined closely, I was going to have my nerves bathed in wonderful seratonin and I was going to see doc Racheal again in 2 weeks.

I was about to leave as the doc handed me the form to give to the bloods nurses for the assorted blood tests, then I remembered my HIV test and Hep B test, and also I remembered that my nurse had done the viral load test too that first day I had began treatment, and I really wanted to know what my baseline viral load had been. I asked the doc if she would give me the results and she told me that this was no problem, she flicked on the pc screen and came back to me with a negative HIV, fantastic news! Hep B, yeah you've probably had this before, she said, (well yes I definately have), and you probably will have to have a a vaccination but not now, we'll look at all this when you are better. Hmmm, she said, I can't seem to see your PCR results here, I'll ring through to the lab.

After a while it was established that there were no results at the lab, there was no PCR test at the lab, they had nothing there for me at all, they had no record of ever receiving a request for this Quantative PCR test for me!! Well, well, well, where have I heard that before? I was so, so disappointed not to have this information, and angry that these baffoons had managed to lose yet another blood sample of mine!!

Some of you may already have some knowledge about PCR testing, for those of you who haven't I will explain my understanding of these. There are 2 types of PCR tests, Qualitative and Quantative, a 'Qualative' PCR test will show whether you have Hepatitis C virus in the blood and is the test used to confirm you have HCV. The 'Quantative' PCR is to show how much of the virus is in your blood, this is referred to as you Viral Load.

The second test, the 'Quantative' PCR is usually only given to those with genotype 1, and is given before treatment begins to measure the viral load in the blood. This is because genotype 1's have to have 48 weeks of treatment as opposed to 24 weeks treatment for most other genotypes, and genotype 1's have the least success in clearing the virus with treatment, I think odds to clear the virus for genotype 1's range from a gloomy 50% to a more optimistic 65%. I have also seen some suggestion on the Hepititis C forum that because of the way these figures are collated that the success rate may even be higher than 65%, which is promising news for those with genotype 1 hepatitis c.

The purpose of the 'Quantative' PCR test for genotype 1 is because this test can be used to help identify early on, at week 12, those who will probably not clear the virus with treatment. By carrying out this test before treatment a record can be made of your baseline viral load. After 12 weeks of treatment a second 'Quantative' PCR test is carried out which should show a much lower viral load and indicate that the treatment is working and whether you are likely to be clear of the virus at the end of 48 weeks. The term the medics use is a 2 log drop, I think this means that you need to have lost 2 zeros from your initial viral load count, eg, if your initial viral load was 360,000, then at week 12 it should be around 3,600 if treatment is going to be successful for you.

If you are genotype 1, then week 12 will be a landmark in treatment, you will either have the 2 log drop and continue on treatment with a good chance of clearing the virus, or you will not have the drop and treatment will be suspended, saving you the ordeal of another useless 36 weeks of rough treatment and saving the NHS thousands of pounds on expensive medications.

Back to my story, I was really mad about the loss of my test, this meant I would now never know my baseline viral load, because it would now be different due to the treatment I had already had. I've heard it said that you kill most of the virus in the first 4 weeks of treatment in any case, unfortunately the virus does replicate again if treatment does not continue.

I remembered that first day of treatment and how my nurse made such a fuss about my bloods, suggesting to take blood from my neck! I remembered her saying, look Poppy it was not my fault that your HIV and Hep B test got lost, which I thought was a strange thing to say as I had not mentioned this myself. All I know is that on that day she should have taken blood to retest for HIV and Hep B as they'd sent off for the wrong test last time, my nurse told me they had actually sent off for a 'Qualatitive' PCR by mistake. So all that would have done is show what we already knew, that HCV was present in my blood.

Also that first day they should have done LFT's (liver function tests) and of course my 'Quantative' PCR. This PCR was so important, and if treatment had continued for me, it could have caused a great deal of upset at week 12 to discover that no one knew my baseline viral load! How could they be so incompetant, not once but twice!!

Doc Rachael agreed to carry out another 'Quantative' PCR that day which I was pleased about at that time, because it hadn't registered with me that really there was little to be gained from knowing this now as the test would show a low reading due to the treatment I had already taken. So off I trotted, mad, glad and sad, to have my bloods taken collect my prescription and head back home.

I will tell you what happened next with the antidepressants in my next post. In the meantime I wish all of you on the treatment journey a very gentle time. I hope to share the rest of my story when I get back from Egypt.

Aftercare part 1

2005-10-23T21:27:00.000Z

First of all as I write this post I would like to say that I feel very much better than I did at the time I am writing about, although there are still some residual symptoms.

It's a long read, the first part is really a recap of all my treatment symptoms, with the addition of some of the other vague, non specific stuff that I have experienced pre and post treatment, that have come to mind as I was writing. There is more of this type of stuff to report but I'll get around to mentioning that perhaps in a future post.

The second part is an account of the initial aftercare I received after being taken off treatment and discharged from the overnight hospital stay that I described in my last blog post entry 'Treatment Withdrawn'. It charts the events of 2 days from 26 to 28 August.

I apologise if at times this post sounds like I am having a one person pity party, I will admit that I have felt sorry for myself at times, but please be assured I am certainly not writing this to extract sympathy. The exercise is therapy for me, as well as a record of account of my symptoms which may prove to be a valuable reference tool should I seek out another consultant or have a private consultation in the future to get a second opinion, and thirdly, to have ammunition to fire at any official who claims that my slap dash care has been anything like adequate or acceptable, as I may in the future choose to complain officially, if when I am stronger and my mind is working well enough to make a sound judgement, I feel I have grounds for such a complaint.

After my discharge from hospital and brief home visit from my gp which I mentioned in my previous post, I spent most of the following 8 days confined to bed. It was by now 26 August 2005, 22 days since starting tx and 15 days since my 2nd and last interferon injection. I was very concerned that I was still mainly in bed.

During this time I was able to function briefly from time to time and I made a couple of short trips to the supermarket where I was able to buy food with help from the use of a wheelchair, this took tremendous effort, wiped me out and landed me back in bed immediately I got home. I found there were moments where I had a little energy which could last 20 or 30 minutes, enough to perhaps leave a comment on a blog, or hold a short conversation, but these small exercises left me totally spent and needing to lie down afterwards, there was nothing in reserve. I noticed that I got very weak after I'd sat at the computer for a few minutes, I wondered a few times if the radiation coming from the machine was draining me?

Many of my symptoms were as before, waking suddenly with heavy weights on my chest with tremors and trembling, unable to move, breathless,lightheaded, weak, hot flushes, then cold and clammy, and malaise, sensations of strong waves of chemical release into my chest and abdomen, fuzzy vision, brainfog, insomnia and nausea without vomiting.

Other symptoms that I had found difficult to describe earlier, became more easily identifiable as they persisted and I was able to separate one symptom from another. The left side of my body including my eye socket, jaw, neck/throat, shoulder, arm, torso, hip, leg, and ankle felt very odd. I described the sensation at the time as weak and numb, even though the body parts felt normal when palpated and there was power in the limbs. There was no sensation of my left lung expanding when I inhaled, I did not though, feel short of breath. I wondered whether I had had a stroke, or multiple strokes.

(I later came to analyse more clearly what was going on here and I felt that the strange sensations were either disturbances in the nerve pathways, or within the blood vessels serving the affected muscles. Of course there has been no medical confirmation of this, it is simply my own opinion. Since this time I have also developed real and sustained numbness and tingling in the little finger of my left hand, but I will write more about this another time.)

The jaw clenching subsided but the involuntary tensing of muscles every few seconds elsewhere on my body continued. The snake legs and the strange curling up of my big toes began to ease off, but I found I was limping with a painful right knee that couldn't bear weight, funnily enough I don't think the knee is related to the tx, (although I do personally think it may be related to hepatitis c). The wierd numbness in my mouth continued.

Other assorted oddments of symptoms, which I have had before, made an appearance, a crop of tiny, red, raised, itchy bumps on just one of my toes, pronounced itching on my back during a visit to the sunny garden wearing a vest top, mild vertigo, (later I would consider a link with inner ear disturbance and hepatitis c), feelings like my body was shutting down for a nano second then rebooting again, a bit like when a page adjusts on a computer screen, this was scary even though brief. My hair that had been breaking profusely, increased in intensity and deposits of this were left on the pillow, skin dry as usual but also rough to the touch which was not usual. My nurse had told me that when on tx if the hair was to fall out it usually happened in the second half of tx, so I don't know what happened here. I would have little oasis' of energy, say 20 mins or so, and these occurred mainly in the early evening or late at night, when I could perhaps wash a few dishes or write a comment on a blog, but then it was total burn out without any warning or any reserves left, a conversation would wipe me out too.

Fear, depression and anger, brought bitterness and poignant sadness with them and hounded my every step knocking me sideways and crippling me mentally, physically and emotionally. Support was very thin on the ground, I felt I had been let down by those I thought I could depend on including my partner who just didn't have the skills to nurse me. I was stretched to the max and beyond, and felt I was drowning in a cruel sea of negativity. The anger and bitterness were all consuming, but I was too weak to express it, it became a dark and internally destructive force.

Severe headaches began to plague me, I could get no relief from paracetamol and was loath to take codeine in case I developed breathing difficulties. Strangely, each time after a number of hours, these headaches lifted as mysteriously as they appeared, sometimes just as the next lot of paracetamol were due so it appeared relief was not due to the effects of painkillers, also the pain lifted without having slept, never the less they were very worrying at the time and left me unable to function or open my eyes.

I realised that not only was I not getting better, but in some respects things were getting worse. I felt I was deteriorating, I was left alone for long periods whilst my partner went off to work, I received phone calls to see how I was from some, but these became counter productive in that they never triggered practical help and just wore me out having to repeat how awful I was feeling. On top of that the calls reinforced the depression as in my desperation I began to resent them, seeing them as duty calls rather than sincerely interested enquiries. I had never felt so uncared for, so unloved, or so abandoned. I was unable to even pray.

There was still another week before my appointment to see consultant. When I'd been discharged from hospital no one had warned me that I could possibly feel like this, or suggested that if things didn't improve in such a such a time then contact suchabody at the hospital etc., all they said was to contact my gp if I had any more problems. I'd just been sent off with a bag of pills and I was too out of it myself to ask any intelligent questions or foresee possible problems arising. Come to think of it, no one had ever told me treatment would make me feel like it did, for me I can say flu symptoms it was not.

I considered my position and decided I needed my gp to visit me to check me out, especially as it was now Friday morning before the August bank holiday weekend, I was feeling dreadful and if I didn't get attention now it may be another 4 days until my gp would be available again. I needed a reality check, I didn't think I was well enough to wait 4 days, I felt so bad, I felt the life was draining out of me and I thought I might die.

So on the morning of Friday 26 august I rang my doctor's surgery and asked if I could have a home visit. Yes ok, doctor will call this afternoon. Great waves of relief for me.

At 3pm I received a call from my gp's receptionist, 'Can you tell me why you want a home visit?', she asked.
'I don't feel very well' I said, 'I'm very weak and I'd just like doctor to call'. I was a bit peed off by this enquiry, I thought doctor knows what's wrong with me, and dear reader how could I have given her the above story, its exhausting to go through it even now and I'm feeling much better as I write.

'Why what's wrong with you?' She said, 'I mean do you want a prescription or something, doctor isn't in today, she will phone us later and I can ask her to write a prescription if you like?'
'What doctor's not in today?' I asked incredulously as my heart sank to my stomach and anger and frustration rose to my throat. Why, I thought, didn't they tell me this earlier that morning?
'No she's not in', said the receptionist, 'but can you hang on, she's on the other line now, I'll just have a word and then call you back.

I put the phone down and began to panic, it was late, it was Friday and it was bank holiday weekend. Why oh why didn't they tell me doctor was not in before, I might have had time to speak with the hospital. Whilst waiting for the receptionist to call me back, I called the hospital anyway and asked to speak to my nurse, I needed a reality check, were my symptoms acceptable? 'You shouldn't still be having symptoms like that', said my nurse, 'I'd have thought the medication would be out of your system by now, you need to speak with your doctor.' That's it, I thought, I'm going to insist a doctor comes to see me.

The receptionist called me back and time was marching on, 'Doctor says there is nothing she can do for you really, you will just have to wait until the chemo leaves your system.' I felt a cold angry frustration and told the receptionist I needed her to send a gp anyway as I would like to be checked. It was pointless raising my concerns about the conflicting advice I had just received moments before from my nurse, she was only the receptionist and I didn't have the energy for a 3 way discussion with her and an absent gp on another line, she told me she would ask the locum to visit but it would be late now.

I lay there, sick, angry, afraid and with no confidence in the adequacy of my care. Why wasn't I told first thing in the morning the situation with my gp? I realised that if I had known this, I may have possibly had the chance to be seen by a doctor at the attenders clinic, by now it was too late, they would be closed and probably not open until after the bank holiday. I decided to call the hospital as I had no confidence in the awaited locum and I wanted to see if there would be a better alternative at the hospital. A female answered the phone, I asked if the clinic would be open over the bank holiday, 'I'm not sure', she said. I waited a few seconds then realised she was not going to say anything else, so I ventured to ask, 'Is that a yes or a no then?' At that point the female went off to enquire, she came back and told me the clinic would not reopen until after the holiday and that was the end of our conversation. No advice as to what a person should do in the meantime if help was needed. On reflection I note Monty Python sketches are still alive and ongoning in our medical establishments, John Cleese would have had a field day with this.

The locum gp arrived at my home around 5.30pm, he was very jolly and of course he arrived as my symptoms had subsided slightly and I had reached my temporary oasis. He took my pulse, blood pressure, listened to my chest and did some resistance testing on my left leg, when he felt the power in my limb, he remarked in the kind of good humoured voice you use for children, that I had more strength than him!! He gave me a prescription for vitamins, the whole procedure took around 10 minutes in total before he went off chuckling out of the door. (Well OK, not quite chuckling but clearly in excellent spirits, probably looking forward to the holiday weekend ahead). I didn't think he really understood what was going on with me, but he obviously didn't think there was anything serious. I didn't even mention the headaches to him let alone half the other symptoms, such was my mental stupor in one sense, and my keen awareness in another, that I had been slotted in as the last patient of the day, fostering an inner suspicion that I was not being taken seriously by anyone at my surgery. Oh give her a few more valium, I imagine them saying, oops paranoia.

I had a bad night that night, constantly waking with an onslaught of symptoms, these continued on waking and throughout the morning. It was now Saturday 27 August 05. My sister called me, I told her my symptoms and how I felt, she asked me what I was going to do. My mum called to see me, I told her my symptoms and how I felt, she asked me what I was going to do. I was drained after these conversations. I realised I did not know what the hell to do, even if I did, I did not have energy to actually initiate anything, it had exhausted me just to explain how I felt. I became emotional as I just wanted someone else to take control to decide what was best and help me out here. I explained the events of the previous day to my mum and described how I felt that there were no more options open to me, the gp had given me vitamins, I felt like I was going to die, it was bank holiday and no one was interested or understood.

My mum encouraged me to call NHS direct, she said they would at least be able to advise me. Mum had to leave as she was due to start work, but my partner was home as it was Saturday, so at least I was not alone.

I called the NHS line and to the person who had answered the call I had to give personal details and go through a lengthy explanation of past history, recent events and current symptoms. This person said she would pass on my details and someone would get back to me. A second person called me, again we had a lengthy question and answer session where I described past history, recent events and current symptoms. This second person said he would call my gp's surgery and speak to an out of hours locum gp assigned there and get back to me. Good old NHS helpline, it was a rigmarole but at least I didn't feel like I was being fobbed off anymore, I was weak and drained but it had been worth it as I had actually been heard.

Some time later, and after another call from the NHS line to say they were having difficulty finding the phone number of my gp's surgery. Then the locum gp rang me, we had another discussion regarding my past history, recent events and current symptoms. The locum felt that as the hospital had been prescribing medications and had records of all recent bloods and treatment that they should be looking at my specialised care. He asked me who my consultant was and said he was going to call the consultants team to discuss the situation and would get back to me. (My consultant was still away on holiday and had been the whole time since I began tx).

The locum gp rang me back, he said he'd spoken to the doctors on the infectious diseases ward and they had said if I came in to the ward they would run some tests on me. He asked me if I needed an ambulance or if I could get there myself, I thanked him through tears of relief and gratitude told him I could get there myself. He explained that I should go to A and E and let them know that the doctors were expecting me on the ward.

I got to the hospital in double quick time and presented myself to the receptionists window and explained that I was expected on the ward. 'Well you will have to see the triage anyway', I was told, 'can you tell me what's wrong with you?' Stress levels were on the ceiling and I thought, oh no not again and so just told her my left side was numb, I thought that should be enough, and I was right it was, the receptionist asked me to sit in the waiting area until the triage called my name.

After a while I was called by the triage, he asked me what was wrong, I told him I was expected on the ward, he said I would still have to tell him my symptoms and be seen by a doctor on A and E who would then decide how to proceed. I protested that my locum gp had just been speaking to the ward and had arranged for me to go directly there. He said the gp had failed to call them and let them know so this was the procedure. I gave him a brief selection of symptoms and as he stood to leave the room I asked him if he couldn't possibly just call up to the ward and enquire there. With withering sarcasm, (I am not joking), and said, 'I was going to do that, I just didn't tell you about it!' I was gobsmacked, why on earth wouldn't he keep me informed of this action, didn't he realise that it would reduce the stress and anxiety I was feeling somewhat. I just don't understand this sort of attitude, perhaps there are explanations I am unaware of, I just felt put down.

Not too long after this the triage called me again and directed me to go immediately to the ward. So no consultation with the A and E doctor after all then!! I was allocated a bed on ward and after a while young Doctor Lucy came to see me, she asked me my symptoms and listened very patiently to all I told her. She had a very nice bedside manner, was very sympathetic and gave me lots of reassurance before she went off.

Some time later another young female hindu doctor came to consult with me, she was also very nice and listened attentively to all I told her. This time, as well as repeating my symptoms for the 9th or 10th time that day, I broke down sobbing explaining how unsupported I had felt, the difficulties I was having at home struggling to manage to wash, eat, to walk to get downstairs to answer the door. The disappointment and hurt that I was feeling because I had no one to care for me, that my partner just did not have the nursing skills required and we were arguing a lot, that I felt the family members I was relying on for assistance abandoned me and friends had deserted me. (This may not be how my partner family and friends saw this, but it is how I felt, they may not have recognised my level of need, but this was my reality). I poured out stuff that was painfully personal and that under normal circumstances I'd never have shared. I explained how insecure I felt about my care, how I never got to see the same medical person twice, how my own gp and consultant were unavailable, I felt extremely vulnerable and didn't know where I should go to get help.

Like Doc Lucy, Hindu-girl Doc was very sympathetic and encouraged me to get all this off my chest, she said it was very important when I'd been on interferon etc that I didn't hold any of this inside. It felt f*****g fantastic to offload the lot of this I can tell you. Hindugirl Doc then told me she was going to arrange some tests and would come back to see me.

Doc Lucy came back and told me that the things I had told Hindugirl Doc had really helped them to understand what was going on with me, she said some of my symptoms had been puzzling them. She explained that she did know about me before I presented that day, she said all the doctors on the team share information with each other about the patients although the patient wouldn't necessarily be aware of this. She told me that there was always doctors attached to that particular ward or the attenders clinic, who could see me day or night if I felt I needed more support than I was receiving at home, she encouraged me, in her own words, to 'use us for support, lean on us'. She said treatment was very tough especially if you were managing more or less alone and you needed to know there was help around when things got bad and I could ring them there on the ward anytime.

Although this was all very nice to hear at the time, later this knowledge made me contemplate that my care had been bordering on the treacherous. You may recall, if you have had the stamina to remain with me through this story, that in my last post 'Treatment withdrawn', I had told of a conversation with my nurse where she asked me if I wanted to come off tx? I had asked her if I was really expected to manage my symptoms on my own at home, and she had said that they would not admit me into hospital, then she recommended that I stop tx altogether. I have more to say about this later with regard to the fact she never suggested just skipping an injection or reducing ribavirin for a while, but for now I just wanted register the point that I was told I would not be admitted to hospital.

In view of what Lucy had just told me I could not understand why my nurse, who banged on so much about how she was there to help me, had never made me aware that there was an avenue of support open to me if I had difficulties. In fact it was just becoming clear through the fog that the attenders clinic was a bone fide source of support for me and not just a clinic that my nurse had managed to bag an appointment for me to attend when I was sick.

The stress that could have been alleviated with this knowledge would have been immense. The distress I had had the previous day with my surgery in trying to get a home visit and the ordeal that morning with 9 or 10 renditions of my symptoms and circumstances, to reach this point would simply not have happened.

It is hard to believe that after visiting this attenders clinic 3 times previously and having on earlier overnight stay in hospital, each time feeling like a complete nuisance, that noone had actually said to me, call us directly if you have a problem, or we are here to help you. I always felt they had done me a favour and I'd got in to see them through the back door so to speak. Incredible!!! However it was a while before the full implications of Doc Lucy's remarks filtered through my seriously fogged brain, for the moment I was just relieved to be in safe hands and not feel like a pest.

Later that day various blood tests were carried out, another chest xray, and an ecg. I was a bit disappointed to realise that ecg would not detect a stroke as I suspected this may have been what had happened to me, however I never mentioned this, grateful as I was to receive this care.

Doc Lucy came back again much later to tell me all my bloods, tests and xrays were fine and dandy, she gave me a computer print out, I was surprised at how easily I was given this, remembering again the hoo ha my nurse created when I suggested this to her on a previous occasion. I noticed that my ALT was 17!! Amazing, the brief dalliance with interferon had already had a major impact, it was something positive I could hold onto for a while at least. (It has gone up again now).

It was evening and Doc Lucy wanted me to remain in hospital, she felt I needed a quiet rest. Apparently when my sister had rang the ward to see how I was, she was told by staff they were keeping me in to give me some TLC!!! I was discharged the next day, I was still very weak and poorly, but this respite had helped enormously. This was without doubt one of the best bits of care I received throughout this sorry saga.

There is more to come before this tale reaches its conclusion which I will write up in my next post. Watch out then for more on locums the sticking plaster of the NHS, and antidepressants, massage and accupuncture, when things do not go as they should. Thanks for your interest and for hanging in there.

Treatment withdrawn

2005-09-12T22:31:00.000Z

It's a long time since I've been up to blogging. Unfortunately my treatment did not go very well and I was taken off medication after only 2 interferon injections and 10 days of ribavirin. It has been almost 6 weeks since I stopped tx and I'm just getting a little strength back.

I have been watching the forum and have received lots of support from there, as well as from other bloggers, and my gratitude for that is immense. I have been unable to concentrate enough to follow blogs, but hopefully will get round to catching up with these soon too. I do hope all of you are faring well and I look forward to hearing your news, as well as visiting the new hepatitis c blogs I've heard about on the forum.

I really don't know where to start this post. I'm still not sure just what happened to me and I'm still confused. I have decided that I need to record somewhere what has been going on, and my blog seems to be the ideal place. I apologise to readers as this is a long blog and may be difficult to follow at times.

I also want to stress to others who may be preparing to undertake treatment, that my consultant explained that I come in a very narrow margin of about 3%, who suffer extreme reactions to the treatment. In contrast, as I've mentioned in previous posts, my partner worked full time whilst on treatment and did not have any of the side effects I describe herein. The chances of you having the same reaction as myself are very slim indeed.

After my last post I went to the hospital attenders clinic as my nurse advised, she apologised that she wouldn't be able to see me as she was running her clinic. At the hospital I was examined by a doctor and given antibiotics and an inhaler for asthma which I'd had as a child.

I asked this doctor about my blood test results from the day I started tx, she told me they were ok, ALT's 55, nothing significant. She gave me the results no problem, not asking me to sign any forms to manage my records as my nurse had said to me previously. My viral load and HIV, Hep B tests were not mentioned and in my confusion I did not enquire. She told me they didn't test for AST's, she also told me if you became anaemic on treatment they gave you a blood transfusion and continued tx.

A couple of days later it was clear things were not improving and my condition was deteriorating, difficulty breathing, multiple panic attacks, at least I think that's what they were/are. I spoke to my nurse again who was busy, this time running a class, so couldn't see me. She told me to ring my consultant's secretary and ask her to get me an appt at the hospital attenders clinic. I rang the secretary who gave me the number to arrange this myself which I did, and which seemed like a mega chore at the time.

I saw another doctor and I was taken off the antibiotics and inhaler and given something to stop me feeling nauseous, which I didn't take, some zopiclone to help me sleep as the insomnia increased, and I think it was on this occasion I was given 5 x 2mg valium tabs. Some blood tests were also taken. My nurse spoke to me on the phone later and encouraged me to continue with tx, explaining that things may settle down after the initial dose. I had not suggested stopping, but had asked were my symptoms usual as they were very severe.

I took my second injection, and was up and down. Feeling ok for perhaps 20-30 minutes at a time. Strangely, I couldn't smoke, even though I was desparate for a fix of nicotine, one drag on a cigarette had devastating effects. I was weak, I wasn't eating, I didn't have any foods in that I could face, I didn't have enough support in place, everthing was falling apart. People who pledged support were not available, but it was clear I needed more than a visit and a chat, I needed intense nursing.

After speaking to my nurse again on the phone, and again advised she was busy running her clinic so couldn't see me, I returned to the hospital attenders clinic for a 3rd time. This time my nurse popped into the waiting room whilst I was waiting to be seen by the doctor. She asked me if I wanted to stop treatment, I could not lift my head or think straight, let alone make a decision as serious as that on the spot like that. No way was I going to make that choice, I wanted support to enable me to continue. I asked her if I was really expected to cope with these symptoms at home and she told me I would not be admitted into hospital. In the end she said I think you should stop the treatment as it is clear it is having a very severe effect.

I saw a different doctor again, this time he took blood tests, I lay in the consultancy room for a couple of hours breaking down and sobbing until the results came through. I told him my nurse thought I should stop tx, he told me my bloods had come back on the low side of normal and so were ok. I asked how they compared to the results from the last tests and he said he didn't know as he hadn't compared them. I was too distressed to insist he did this. I asked were my symptoms all a result of anxiety, (somebody had mentioned anxiety somewhere along the line), he said, well you appear to be having side effects from the treatment and I was sent home, that was it. No counselling or anything.

I slept badly that night, waking regularly with a violent jolt which seemed to come from the base of my skull and upper chest/throat region, accompanied by tremors and difficulty moving. The next morning I woke up with by now, a familiar pattern of a heavy weight in the centre of my chest, weakness down the left side of my body, including face, arm and leg, waves of involuntary muscle tension, laboured breathing, shaking and tremors, jaw clenching, waves of a sensation like hormones or chemicals being released into my chest and abdomen and afraid I would collapse. I was alone, my partner was at work, I rang an ambulance and was taken to A and E.

The doctor I saw there was very sympathetic, he told me these interferons can really wipe you out. He took more blood tests, I told him I'd recently had these done twice but they had not been compared, he told me he would be comparing all three tests. This was now Wednesday morning, I had taken my second injection the previous Thursday.

This doctor gave me a saline injection as I'd not eaten properly since Sunday, he also organised a chest xray which appeared ok. I was not sure what to make of this as breathing and chest pain were significant and I had had 4 chest examinations by 4 different doctors which all appeared to contradict each other. I also had diarrhoea.

The blood results came back showing that I had been steadily becoming anaemic, he recommended I was admitted into hospital for observation. He called down the last doctor I had seen at attenders clinic, who did various tests on reflexes, follow my finger with your eyes sort of stuff , looked at my throat and tongue which by now was covered in the thrush he'd missed the day before. I stayed in hospital from Wednesday morning to Thursday evening and began to eat a little.

My sister, who had been away on holiday, came to see me in hospital, she rang my nurse while I was there, my nurse came over to the ward with a student. She advised me to get help from my gp to manage my anxiety, the student gave me a patronising, unnaturally long fixed smile and told me there was lots of stuff I could do to manage these symptoms, like he was some expert. I just turned away and cried I felt he was so patronising, I wanted to scream, get out of my room you moron. So noone was talking side effects any more, it was anxiety, I'm not sure when this subtle cross over happened.

My nurse spoke about all the support they could put into place should I resume tx at a later date, I couldn't make head nor tail of all this, I just wondered where it had been this time around??!!? She mentioned perhaps putting me on a course of antidepressants for 6 weeks before resuming treatment next time round.

One of the consultants who had seen me when I had malaria 5 years previously, visited me before I was discharged. (I haven't mentioned my own consultant had been on holiday since I began my tx). He told me that my biopsy from 5 years ago had been very good, showing only mild inflammation, he felt now it would be wise to have the second biopsy after I felt well enough, then, if the my liver was stable I could perhaps wait another 4 or 5 years in the hope of better tx becoming available, or if my liver had deteriorated I may be more motivated to resume tx if it were a matter of life or death.

All I could think of at that point is that I now understand why some people with cancer refuse chemotherapy, preferring to spend their last days with some sort of quality to their lives. The parting shot with this consultant was when his junior doctor mentioned that my T4's were high, he said he didn't want to mess about with these just now as it was probably best to just let things settle.

Another doctor then came to see me, the one I'd seen the second time at the attenders clinic and he arranged medications for me to take home. Some stuff for the thrush which was now so bad that when I took it I could feel the thrush all the way down my gullet to what I presume was the entrance to my stomach. Paracetamol and codiene for pain, and quinine tablets for the horrid snake leg symptoms I was having from my groin down to my feet, which never really developed into full blown cramp but kept me awake at night and were just bad enough to make my big toe curl up. The quinine didn't really relieve these symptoms.

I never took the codiene due to developing breathing problems with these in the past. I was never asked about this so just took them home. I had had a little time to consider what the consultant had said about high T4's and mentioned this to the doc, he looked at me and said, I think you do too much of this, and tapped his forehead with his index finger. I had no reply, it was true I do think a lot, especially when I do not get clear answers. I still wasn't clear what had happened to me, was this intolerance to interferon or ribaviron, or was this now anxiety? If it was anxiety, I had never had it like this before.

I was offered more valium and foolishly declined these as I was afraid at that point I just couldn't take any more pills, I really didn't think my body could cope with anything else. Also I still had 2 valium tablets left at home which I though would do in an emergency. As soon as I got home I felt I needed these, I also realised that if I didn't get a supply quickly I may be in dire straits over the approaching weekend. I rang through to the ward and asked the staff nurse who had given me my farewell pack of meds if they could organise these to be dispensed and my partner would pick them up. No, I did feel such a nuisance.

I rang my own gp the next day, friday, and asked for a home visit which I got. I could only briefly explain what had been happening as I was so weak and going light headed everytime I spoke for any legnth of time. She called to my home but I couldn't really relate all that had happened, I was too weak to speak much. She prescribed more valium for me, she asked me the name of a plant I have growing by my front door, when I told her the name, she said, you will be strong like this plant.

That is enough for now, there is much more to log, another overnight hospital stay, a merry go round of locum doctors, antidepressants. Watch this space.....

My Nurse is an Angel

2005-08-08T12:47:00.000Z

I thought everything was going ok, not good, but I would cope. I kept reminding myself that the first injection, was for many, the worse and that it was likely that things may get better.

I didn't tell you how much stress I'd had the week before my tx began. I had planned that I would take the young people I worked with to Blackpool, tie up loose ends the next day then bow out and rest and get over the chest infection before tx day.
What happened was that 2 young people decided to go missing in Blackpool, one of them was mine, and this caused untold complications and had negative health complications for me.

I had begun the day at 8am and was frazzled by 5pm when we were due to leave Blackpool, at best I average 4 or 5 good hours a day, so I was pushing it to begin with. It was 10.30pm by the time I found my missing girl and took her home, after dealing with park security, police, parents, my line manager and the rest of my group of young people, I got home myself in floods of relief that it was all over. I poured myself a glass of wine to help me unwind, one of the last I was to enjoy before tx began. Only I didn't enjoy it, because the next thing my phone began to ring and I had a child protection case on my hands with the girl who had gone missing making allegations of sexual abuse. By 2am, I had established with social services emergency duty team, that I would not be required to remain awake throughout the night for police reports.

I didn't manage work the following day, but found consequently with all the extra reports this incident generated, that I had to work like a lunatic up until the Friday evening instead of the Wednesday I had planned to finish. Far too exhausted to attend my colleagues wedding on the Friday evening, which I was sad about.

On the Sunday I took my mum to see her dear brother in hospital who is suffering from vascular dementia. I was appalled by the standard of care he was receiving, the unexplained bruising, the fresh grazes on his elbows, the zombie drugged state he was in. As I was leaving the hospital after 4 hours, I noticed a report left casually on a table outside the ward which I read, and learned that my uncle had had a fall in the shower that morning, noone had told us despite my asking staff nurse why he was in such a state. By my reckoning then, the grazes on his elbows that were causing him pain everytime he knocked them on the chair, that I had had to ask a nurse to come and dress, had been there for over 7 hours before they were attended to, despite the report citing the injuries. I worried about my Uncle's well being.

Along with all this was the insomnia, so even though I was exhausted, a good sleep was not forthcoming. I tell you all this so you have a good idea of the state I was in when I presented myself for tx. as it all possibly contributed to what happened next.

As I have already mentioned on the forum, 1st injection posting, I initially thought everything was going ok, then the panic attack kicked in. I managed to ride out the storm until it happened again, and again. By yesterday, Sunday, I had 3 attacks in one day, I was totally undone. I posted more about this on the forum, panic attacks and anxiety disorders.

My uncle had been moved from the hospital to a nursing home, and I had told my mum I would take her to see him this Sunday I did not want her negotiating 3 long bus journeys to get there. I also wanted to see him because I had been told he was now much better since he had left the hospital, he was no longer like a drugged up zombie and I needed to see this to settle my own mind.

My mum called to my house on Sunday morning whilst I was gagging on crumpets so I could take my ribavirin, not long after this, the panic attack kicked in. I told my mum I would not be able to go along to see my uncle, but that my partner would take her. However after a while the symptoms began to subside and my desire to see my uncle looking well gave me the incentive to go along. I was glad I did, even though it was awful seeing him in that dingy, dismal home with no garden, that smelt of piss as soon as you walked through the door. Despite this the staff were all lovely which was comforting.

I was pleased I was able to take charge, organise a wheel chair, find out where the nearest park was and get this poor man out in the fresh air. I wanted to cry just to think that he had not seen a blade of grass or anything of beauty for weeks.
We had picked my aunt up on the way and it was lovely to walk along in the sunshine, whilst mum and aunty chatted away and uncle smiled and waved at children and stroked little dogs.

When we returned to the nursing home I came over all funny again, and panic attack number 2 came to call. My partner helped me to the car, brought me water and a biscuit and stayed with me whilst I trembled and jerked and fought for my breath, and while aunty and mum said their goodbyes to uncle. It is laughable that these symptoms that make me feel like I am going to die can be alleviated with a glass of water and a biscuit.

When we got home I was exhausted and lay on the settee whilst my partner took my mum home. I tried to eat dinner later but it was a bit of a struggle and I couldn't manage much, by about 9pm panic attack number 3 booted the door in and said Hi.
By this time the tension in my back, chest, shoulders, neck was incredible, I was struggling to get a satisfying breath and I cried like a baby.

This morning I felt wierd, my partner is at work and I didn't know whether I should go to A and E, as I had chest pains. I wondered if I still had a chest infection, but I couldn't organise myself to get this together.

Then the phone rang, it was my nurse to ask how I was getting on with tx. I told her about the panic attacks and chest pains, she comforted me and called me sweetie. She told me there was an attenders clinic I could go to tomorrow and see a doctor who would examine me and check my chest, she said she would go and get me an appointment and call me back. Within minutes she called me back with an appointment for 12 noon tomorrow, she confirmed what Minerva's nurse had told her, that anxiety attacks were a side of tx with some people, she called me darling. I put the phone down and cried because of her sympathy and understanding. I feel better just knowing someone knows what is going on, the tension in my chest is easing, I'm writing my blog.

So that is why this posting is entitled My Nurse is an Angel. We are going to get on just fine.

1st Injection.

2005-08-04T12:57:00.000Z

Hi everybody, and thanks to everyone who kindly posted advice for me in preparation for today.

I had my 1st injection, 80mcg peginterferon alpha 2b, 2-3 hours ago, and apart from feeling a bit light headed and not feeling like I could run a marathon. I feel not so bad, a bit of a vague headache, but wouldn't like to venture far from home. I'm to take only one dose of 400mg ribavirin later today, and after that I will be taking 2 doses a day.

I was outwardly composed when I arrived at the hospital, inwardly very anxious. I had gone along armed with my tick list, current vitamins and medications and the ELPA petition.

My nurse came to see me to take bloods and check blood pressure. We had a chat about the tests, which tests she was going to do etc. She told me they would do a viral load check, hep b and hiv and blood count. I asked about the ALT and AST, but she said they had done these in 2004 and they shouldn't have altered very much. I think she was a little impatient with my questions, never really answered me clearly and just kept telling me not to worry about it.

She began to prepare to take the blood and I pointed out the site where it is best to get blood and the angle the needle should enter the vein, as the vein is a bit twisted. She proceeded to go in at a different angle, and as a result could not get any blood, and so began to dig about. As I've been through this process zillions of times in the last 5 years and I knew there would be no result, I tried to advise her. She whipped the needle out, and in what I thought was a brusque manner said, 'ok where do you usually go in, or I could just take it from your neck if you like.' I was a bit shocked as it has never been necessary to do this before, I know the neck is a favourite site for IV drug users whose regular veins have collapsed, and what did she mean, where do I usually go in?

I told her that I did not wish her to go in my neck, then she looked at me and said, 'look you're very agitated, I'm only trying to lighten things up by making a joke, to be truthful Miss Poppy I find your attitude a bit offensive!!!' What??? She continued, 'you're very uptight, you need to take a chill pill or something and try to relax.'

I couldn't believe what I was hearing. I told her that I was indeed very anxious and nervous, and because I had been messed about and things had not gone right on other occasions I just wanted to make sure things went smoothly this time and what have I done that is offensive?

I don't know about you, but I do get tense when I have blood taken, this is because on many occasions I have advised the blood nurses where they can get blood, then against my better judgement and in order not to offend them, I have had to agree to let them go into another vein that looks good but doesn't yield any blood, as they have thought this was best, only after being poked and prodded have they finally agreed to go where I've suggested. It does piss me off no end to have to go through this distressing rigmarole time and time again, to pussy foot around their egos when I'm the pin cushion, and yes I do get agitated. I don't go in there trying to tell them their jobs, or demanding this and that, I just tell them politely what my many previous experiences have shown me.

I tried to explain to my nurse that my anxiety was not a personal attack, (although I did feel hers was), but each time I opened my mouth to speak, she talked over me, repeatedly saying you need to calm down and take a chill pill. When I was finally able to get a word in, I told her I found her manner offensive, that the inference in her present directions and at a previous consultation was that I was an IV user and that I'm sorry I didn't laugh at her joke, but I actually thought she was serious. Even at this point she was still not really listening and threw an exasperated, eyes rolled back look to my partner, as if to say, doesn't she go on. I realised I was supposed to take her remarks on the chin and not defend myself.

At this point my partner also joined the circus, and made a few well constructed comments himself about it being understandable that I should be nervous and that I was offended by the references to IV use. My nurse began to calm down, but I just wanted to cry, I'd not even had anything done by this time.

My nurse could not site anything offensive that I had done or said, and I felt she began to back track very rapidly. She told me she was there to help me, (!!!???!!!) and it was best if we got on as we'd be working together. I agreed with her, what else could I do, despite finding her overbearing, insolent, rude and aggressive. She said there was nothing to worry about, which was a far cry from what she told me at our last consultation.

She sent for another bloods nurse to take my blood, this one did what I suggested and got the bloods no messing. My nurse said, 'oh you are right', at that point she also agreed to take the ALT/ALT bloods. We then got down to the injection which went well, I did it myself and I found it easy.

Anyway its over, I could have done without the nurses awful attitude, but I will put it behind me and try to forget it. I'm sure there was a learning curve in there somewhere for her too, she now knows I will stand up to her, a good thing for bossy bullying types to know. In her favour, she signed the ELPA petition, and in the end was speaking to me like I was a person.

The tick list went out the window, neither was I asked about current medication, or asked to complete any healthcheck questionairre.

I go back to the hospital in 2 weeks, I have 1 injection to take at home next week and 56 ribavirin tablets to keep me going.

My apologies to anyone who is/was an IV drug user if my comments cause offense, but I am aware that prejudice does exist within the NHS and understandably, at this point, IV drug user is not a label I wish to have attached to me. Soz.

Carry on Camping

2005-07-25T14:58:00.000Z

(Please skip the first few paragraphs if you are not interested in my camping weekend, but please read the last paragraphs concerning my imminent tx. I would appreciate any tips that anyone may have that will enable me to ask the right questions when I go to hospital.)

We had a lovely camping weekend at a camping barn in a beautiful little village , about 3 miles from Clitheroe. The village itself has won many awards for the most beautiful village in England, they have no satelite tv masts or double yellow parking lines, and because of this, the village features in many tv period dramas etc.
We hire this barn every year, it is very basic with a bare attic upstairs for you to lay down sleeping mats, there is only a calor gas supply so lighting is by gas lanterns, and there is a 2 ring camping stove. Recently they installed a boiler so we now have hot water and a hot shower. Downstairs there are work surfaces for preparing food, a sink, and a large wooden table with wooden benches to sit on. My partner D and I take our tent and pitch it in the field beside the barn.
The barn stands alone in a field with wonderful veiws in every direction and is just off a country track, so no traffic noise! Also no nosy neighbours and a designated space for a rather large bomfire. This is Pendle witch country, steeped in history, especially with regard Lancashire witches who were mercilessly hung in droves a few hundred years ago.
We were blessed with good weather and very pleasant company. We found more improvements had been carried out at the barn since we were last there, with the addition of a new picnic table and benches outside, and an impressive gas bbq cooker, which was nice. D and I also took the gazebo, which although wasn't necessary as it didn't rain, looked very nice over the picnic table. After the initial work of setting up tents etc., we chilled on Friday by the camp fire and just welcomed everyone as they arrived.
On Saturday morning my sister went to Clitheroe market to buy our groceries for the bbq, after that she and everyone else went off for walks, 7 of them walked up Pendle Hill that afternoon. D and I stayed behind at the barn for a bit on Saturday, mostly due to the fact that I had developed a nasty throat, chest infection before we'd set off. I had managed to get some antibiotics from my gp on Friday afternoon and took 2 together as directed when I got them. Unfortunately they made me very nauseous and I had to lie down, but not for long, as the next thing I knew I was rushing to the loo with projectile vomit going all over the landing and bathroom floor before I got to the loo! Just my luck. So I was still quite fragile on the Saturday, but later after a few paracetamol D and I decided to have a little stroll up Pendle, and take a picnic to a very beautiful spot I'd found on a previous year.
Of course we didn't follow the map very well, it was a bit ambiguous, we turned up the ascent too early and found ourselves almost at the summit before we realised we had not passed the picnic spot. We were both very hungry so we stopped at the spot where we were, which was stunning with spectacular veiws over the villages and lakes, and had our butties.
After lunch we decided to turn around and descend to the village of Barley, although we were very close to the top of Pendle, it was a very steep ascent and we were feeling lulled into nap mode after our lunch, with me not being very well, and D's leg being rather on the large side, he has some circulation problem that is as yet unresolved. So it was back to the barn to meet more friends, who arrived whilst we were all out, and to prepare our bomfire and feast for the evening.
More paracetamol for me and a little snooze for both D and I before the others returned from their rambles.
The party went ahead in the evening with the usual charades and ghost stories and singing. We were blessed again with a glorious sunset and the appearance of a spectacular moon, only slightly on the wane.
Sunday, we all just chilled again, stoked up the fire from the night before and cooked fresh trout in foil for breakfast in the embers. Slowly we all began to pack up, a little at a time, we finally left the barn around 4pm.
Well another years camp over, it was excellent, apart from the health hiccups. Hopefully next year we'll both be fit and well to enjoy it to the max.

ANY ADVICE PLEASE
I'm just taking it easy today, catching up on sleep and rest. Tomorrow I take a group of young people to Blackpool, so I need my wits about me for that. I'm taking time off work after that, I will go into the office to tie up loose ends but no face to face work with the kids. I need to just slow down and get rid of this infection before 4 August when I begin treatment.
I am going to call my nurse this week to clarify details, apparently I will not get a letter, I just turn up on Aug 4 either 9.30 or 10.30am. I'm still unsure whether I will stay overnight or not. All I know is that they will be monitoring my thyroid closely as it is under active, and that they will carry out the HIV and Hep B tests when I arrive at the hospital.
I would really appreciate any tips on what blood test results I should ask to be kept informed of at the beginning and during treatment in order to monitor my progress. Thanks in advance for that.

Keeping Busy.....

2005-07-15T23:59:00.000Z

Well I can't say the good effects of the holiday lasted very long, I've not been feeling too great. I realise I may have been a bit premature in my thinking with regards the HRT. I've had insomnia this week, a lot of liver pain, a bit of a vague chest infection, lacking in any motivation whatsoever and sadly, a friend of ours died too. As there is so much going on for me right now, I cannot be sure if the insomnia is because of the HRT or not, I'll give it another week, if things deteriorate further I may consider jumping back on the HRT programme until treatment ends.

For those who may be interested I was taking Livial HRT, this type does not contain any actual hormones, it contains a substance which the body breaks down to produce hormones.

In terms of the virus, after reading many blogs and information sites, the full implications of having genotype 1b have hit home. Bummer. I find I can identify my physical, emotional and mental state with those who are already on tx, and that is a bit unnerving.

I have also set myself up a bit in terms of work. I wanted to have my summer activity programme organised before I go off for treatment, and I have done this mostly, but because I've not been too well, I find I've got behind with a few details and I've been very forgetful. I now feel I am under pressure to tie up a lot of loose ends, and I'm coming to realise that maybe I shouldn't work at all the week I go into hospital, which means finding cover, and even less time to tie up loose ends.

My nurse called me to ask if I knew my weight so she could write the prescription for my treatment, I am 53 kgs, so believe I will be on a lower dose of the stuff.

One of the fun things I did this week was to go to see Snoop Dogg with a couple of our friends, I had booked this in the after holiday euphoria. I'm not really a big hip hop fan but I do like a bit of this stuff. I did enjoy dressing up, and our friends picked us up in their mercedes convertable, so we made a proper gangster rap style entrance.

I'd forgotten that main acts don't come on stage until quite late, we got there at 7.30pm but Snoop didn't appear until after 9.30pm! I have to admit I was yawning a bit by then. I'm not so keen on all the American chanting stuff - everybody in the house say bow, wow, wow, - but hey I'm just like that.

Today one my partner's brothers is coming up from London to stay overnight. He's coming to say farewell for a while as he and his wife are going to India next week. They have a lovely life, spending half the year in India, tucked away in the himalaya with a yoga master and the other half in Thailand where the wife teaches yoga and he teaches diving.

There is another brother, who also teaches diving in Koh Samui, he's been in uk for a year and has decided to go back, he too leaves next week with his wife and son. So its hello goodbye weekend as they will visit us too.

Well they may all be going to the far east, but next week, we and some friends are going on our annual camping barn weekend to Clitheroe! Actually we stay in a beautiful village outside Clitheroe and it is lovely, far away from busy roads, with walks from the door, beautiful scenery in all directions, including uninterupted veiws of Pendle Hill.

We usually do this in August, but I have brought it forward this year because of the tx. One of the things I most enjoy about these weekends is the fact we can build a bomfire in the field outside the barn, its great sitting around the fire. We have a bbq on the Saturday night too. I just hope it doesn't rain, we have got some canopies though if this does happen.

I finally worked out how to access the forum Ron, it is really interesting, I've had some very touching personal messages from there too, and it appears I really helped someone. How cool is that.

Some of you may have noticed I tried to set up links to other blogs, for some reason I can't work out how to get these in the side bar. I think may be because this computer is only windows 95, it may restrict me accessing some of the features. I'll still keep working on it however, but for now the links page has gone back to draft.

One of my best friends is getting married in Ibiza on 1st October, I'm a little concerned about how I might be. I will be on week 8 of tx by then and I don't feel confident to go ahead and book a flight or anything. I remember Tink had a bit of a problem with blood counts one time when she was about to go on holiday. I suppose I will just have to wait and see. My friend asked me to be maid of honour, I've explained to her that she may not be able to rely on me to take much on in the way of duties, but she says she just wants me to be there, as I do myself.

I slept last night, so I feel a little more balanced today. I'm going to get myself washed and brushed up before our guests arrive, oops, too late, they are at the door.

HIV Test Farce

2005-07-03T14:26:00.000Z

The morning after I returned from Crete I rang my nurse for my hep b and HIV test results. My nurse immediately told me she was due to go in clinic and would call me back tomorrow, then she must have realised she was stood in the office with the admin staff and my records to hand , because she next said if I hang on a minute she would ask the secretary who was in the office with her. I was glad she did this as I really didn't wish to wait longer than absolutely necessary. I heard her ask the secretary for my results and in just a few seconds I heard them speaking together.

I was, naturally, really tuned in to this, because before I rang I was wondering if they actually would give me the results over the phone. (I mean what if it were positive, would she just say, sorry Poppy you've tested positive, must dash now for clinic.) Or if they would tell me they couldn't give the result over the phone, and then I would worry because why wouldn't they give me good news immediately.

I couldn't make out what they were saying to each other, but I could hear the tones of their voices and they seemed relaxed. After a minute my nurse told me that she didn't have the results as they had sent off for the wrong test, they had sent for another hep c test in error!!

I will not write down my mental reaction to that piece of news, but it was something like, f*****g d*******s!!

Outwardly though I reacted quite well, quickly remembering I need a positive relationship with my nurse. I went into damage limitation mode and asked her if they would put in for the tests again, she said they no longer had enough supplies of my blood. Feeling a bit negative I allowed myself the unkind thought of, not that old chestnut again, as she had said this to me once before about not having enough blood and had been wrong that time.

So I asked her if she was sure, she said she was sure as they had had to use a lot when they did my genotype tests. You didn't use any old stock for my genotype tests, I told her, I gave fresh supplies of blood for those each time, (I had 2 genotype tests). Never mind, she told me, you've been messed about enough, we'll just take a test when you come in for your treatment, and if its positive we'll be able to adjust your treatment, it shouldn't cause any problems.

Now this might sound okay, but it didn't feel ok. This was the same nurse who pressured me to have the test, who suggested, wrongly, that I wouldn't be able to have treatment if I refused to have the HIV test. The same nurse who I gave the instruction to, to proceed with the tests, so who is responsible for getting the test wrong and how could they make a mistake like that? It doesn't inspire confidence and I feel I've had an unnecessary, stressful head trip which will now extend until treatment is underway.

I suppose I could go to the hospital, give more blood and get the thing done sooner, but I just didn't want this to turn into such a big issue, also I just don't feel like making time to do this. I hoped after my holiday I could relax and not have to think too hard about these things.

Apart from that, the holiday was great. We stayed in the coastal village of Almyrida with its beautiful coastline, stunning mountain backdrop and lovely rural aspect which lent itself to uplifting strolls beside lush olive groves and vineyards. Food and weather were excellent and I spent a lot of time sleeping, which, going by the amount I did, was much needed.

I feel a lot better since the break, the holiday really helped reduce stress levels which were nearing danger point. The HRT reduction seems to be going well with no significant symptoms. So good stuff there.

The students I host have now gone back home to China. They were great boys but I'm glad to have the house back to myself and I am pleased I will not have any students when I begin treatment. The college will hopefully have more students in September, and all being well, I'll be able to take some more then.

Watched the Live 8 concert last night, it was fabulous to see Pink Floyd, what a treat! I also enjoyed, The Who, Snoop Dogg, REM, Mariah Carey, Robbie, ooh and so much more. Hope the event gets the right result.

Lull Before the Treatment

2005-06-16T20:05:00.000Z

I decided to go ahead with the HIV and Hep B tests, and conveniently, this took no more than a phone call as they can use old stocks of blood to do this. The nurse tells me I should have the results in about a week. I am a little anxious.

I've been feeling quite overwhelmed since opening this blog, in a good way because it has generated a lot of support, and I am very grateful to everyone who has responded with welcoming and helpful comments, thank you all so much.

The other side of the coin is I sent myself dizzy, hopping from one blog to another and working out how to create my own, staying up late. This frazzled my brain and set the focus on me, me, me and all the health issues I seem to be juggling and sent me under for a bit.

I'm reducing my HRT at the moment and I'm like a woman on the edge, my partner would probably describe me as something like Reagan from The Exorcist, and if I heard him I'd possibly crush his nuts and eat em!

Another thing that's going on for me now is that after keeping my HCV status secret from all but family and close friends, I now find with treatment on the way, I'm having to disclose this in a larger arena for my own sanity. It has become unbearable to sit with colleagues putting plans into place for our summer activity programme knowing full well I will not be there, and that my absence may affect those plans negatively.

I recently advised my line manager that I am unlikely to be in work for the month of August as I am to undergo a 48 week course of chemotherapy but have not told her why. Of course she assumed that I had cancer which really bothered me and when I tried to steer her away from that idea, I found I was creating a bigger drama and generating intrigue.

I have now decided I will tell my line manager of my condition in order to gain her support and understanding. It will be easier dealing with other colleagues if she is helping bat away uncomfortable questions. I am also disclosing to a wider circle of friends too, I think it may be too much of a strain to stay mum during treatment.

Anyway I am going to Crete on Tuesday for a week and I'm really looking forward to stepping back from all this and just spending some lovely days and evenings. We are going to Chania, and we will be staying in an area of little fishing villages with mountains as well as beaches so I'm really happy about that. The hotel sounds lovely, its right on the beach and I'm dreaming of lazy sunny days, cosy tavernas, greek salads and gorgeously fit waiters dancing to Zorba the Greek. We have never been to Crete before so this is somewhere new for us.

Hopefully I will have the results of the HIV and Hep B test by the time I get back from holiday so I will include them in my next post.

What, No Treatment!!?

2005-06-12T12:46:00.000Z

As the results of my biopsy showed only mild inflammation, I was told that I would not be given treatment, but I would be monitored which would include a biopsy every 3 or 4 years.

I was not happy about this, although there was some comfort in knowing inflammation was only mild. However I'd had the chance to research the virus myself by now and I was beginning to wonder whether many of the odd ailments I had been experiencing before the malaria were possibly due to the virus.

I also realised that the damage to the liver by the virus was progessive and I couldn't understand why I would wait until I was further damaged before being treated. My consultant advised me that I should wait as new treatments may become available which may not be as devastating as the present ones. I didn't really have a choice and had to accept this. As far as I am aware there are no new treatments as yet.

I don't wish to complicate the story, but my partner also got malaria the same time as me and was also diagnosed HCV+ at that time. His biopsy showed cirrhosis and he was given treatment. He was type 2 and sailed through the treatment clearing the virus after 26 weeks.

In the meantime I was struggling with long shifts in the children's home, usually 10am to 10.30am the following day. It was a very stressful job and I was tired all the time, suffering from anxiety and full of aches and pains, very forgetful. I felt I couldn't tell anyone at work what was happening with me and this added to extreme stress levels. The work involved sleep in duties when you were supposed to go to bed at midnight after the young people were settled, but in reality you got very little sleep, often getting to bed stressed at 2 or 3am after one crises or other with the young people and still having to be up and back on duty at 7am. I did this a couple of times a week and it was crippling me. I had to leave this job, despite the stress levels I reluctantly left this post, relinquishing a permanant contract and taking up a temporary one in another field.

I continued to see my consultant from time to time until he told me they should start thinking about another biopsy. I didn't go back for a year. I then found from the Hepititis Resource Centre that biopsies were no longer necessary when assessing a patient for treatment.

When I did go back to see my consultant I was seen by his assistant. I had already been told that they wouldn't test for my genotype until I was ready for treatment but this guy didn't seem to have a clue. I took advantage of this and requested the test which he agreed to process. Bingo!

The next time I went for my appointment I was again seen by an assistant, a different one this time. She informed me it was time for another biopsy and I told her I didn't really want to do that again, she rang through to my consultant and after giving him my response, she put the phone down and told me I could go ahead with treatment if I wished. Wow, I hadn't expected that.

The assistant then gave me the result of my genotype test, I was type 1b and I was gobsmacked! How come I was not type 2 like my partner of 25 years? There were no answers only a lot of negative stuff about the length of the treatment and poor response rates. I told her I needed to go away and think about this as I had only ever prepared myself for having a type 2 genotype. She agreed and made an appointment for me to see the hep c nurse to discuss any questions I may have relating to treatment.

I saw the nurse who just gave me the worst possible case scenario. She made a big point that I should now be tested for HIV, I wasn't ready for that. I felt she was very negative and a bit like nurse Ratchet from One Flew Over The Cookoo's Nest, but I am reserving my judgement as I've only met her once and I am hoping that she'll turn out to be kinder and more sensitive than my first impression. I do hope so as I think we will be seeing a lot of each other and she will supposedly be one of my main sources of support at the hospital when treatment begins in August.

I again saw my consultant, the man himself this time, and we confirmed treatment dates etc. He again talked about the HIV test, when I told him I didn't feel I could handle this if it were positive he told me that people don't die from HIV these days. Anyway he didn't push it but told me it would complicate treatment if I were to find out later that I was HIV+, he also said he wasn't expecting that I would test +. He told me they didn't need to take any fresh blood for this test they could do it from old stock and if I decided to go ahead I could just ring the nurse and tell her to proceed with this and also a hep b test. I haven't done this yet, I can't make up my mind.

I can hardly believe I am actually going to have the treatment. I am excited and apprehensive. I do feel resentful that I wasn't allowed treatment earlier. I am 48 and now menapausal, I am not getting any younger.

Let's start with Malaria

2005-06-11T00:30:00.000Z

About 4 years ago I was rushed into hospital with falciparum malaria, a few hours later I had a complete blood exchange and was fighting for my life. I was put on kidney dialisis and developed pneumonia and much later found I'd also had west nile fever and possibly yellow fever.

I don't know how long I'd been in hospital before my consultant came to see me, I was dreadfully ill and hallucinating with fever. I remember him speaking to me but I could not open my eyes. "I'm afraid I have some bad news for you" he told me before informing me that they had found I had hepatitis C. He told me I was very sick, they were very worried about me and it would be a long time before I was better. This really cheered me up.

I asked for more information on hepatitis c in the hospital but got only sparse information on a flyer. A friend searched the web and printed off lots of information, mostly from U.S. and posted this to me. Sadly, in my vulnerable state, this had the unfortunate effect of absolutely terrifying me and I was convinced by the information and the remarks from my consultant about the length of time I may have had the virus, that there was a significant possibility that despite surviving the malaria etc against all odds, that I was now going to die from hepatitis C.

Bits of information filtered through from my consultant, I now understood that I needed to wait about 10 weeks until my liver recovered from the malaria before I had a liver biopsy which would determine how advanced the hepatitis C was. I told my consultant I was very scared because I may have had the virus over 20 years hoping for some reassurance, he responded by telling me that they couldn't tell me anything until after the biopsy and that he was very worried also. This just reinforced my fears that I may be terminal and I was too afraid to ask any more.

I was bed bound for weeks after I returned home and still convinced my hepatitis C may be fatal. I was still in telephone contact with the medical team at the hospital and during one of the calls I spoke to a man who was very sympathetic and sensitive. He realised that I was in a black depression and afraid to die, he kindly explained to me that it was extremely unlikely I would die from hepatitis C. I started to get stronger after this. I did get some further news from the hospital that I had low functioning thyroid.

About 3 months later I had the biopsy which I didn't like at all. I was still weak from the malaria and I just found it awful. The results however showed I had only mild inflammation.
I

HCV Positive

2005-06-10T17:54:00.000Z

Hello to all fellow hcv positive bloggers.

I was diagnosed 3 years ago and am due to commence treatment 4 August. Recently found I was genotype 1b and so will undergo 48 weeks of treatment.

This blog is work in progress. Never done this before, never surfed the net and only got online on Monday so please bear with me whilst I get the hang of it.

More soon......