HCV Positive

This blog is a journal recording my personal experiences with Hepatitis C.

Location: United Kingdom

I have hepatitis c, genotype 1b and started 48 weeks combination treatment, pegylated interferon alpha 2b and ribavirin in August 05. Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks. I am not sure at present what the future holds.

Tuesday, January 31, 2006

Letter from my Consultant

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.

Tuesday, January 24, 2006

Appointment with Dr Blahblah

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.

Tuesday, January 10, 2006

Neurologist appointment

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.

Friday, January 06, 2006

Aftercare 4 and Marathon Post

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.