HCV Positive

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

Name:
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 Unfortunately due to intolerance, treatment was withdrawn after only 2 weeks.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.

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.

4 Comments:

Blogger Jane Riley said...

I read it! You owe me a diet coke in Manchester! However once I'd started your post,I was gripped,and just had to know what happened next! Bit like a whodunnit...I really really do hope there's a happy ending...one where you and your partner drift painlessly and happily into the sunset! By the way...my fella's completely useless when it comes to nursing me...I think he trys in his own small way..like I'm honoured to get coffee brought to me in bed in the morning! And he lets me throw soft toys at him in anger,that allieviates my stress somewhat!

12:49 AM  
Blogger jane1962 said...

Hi Poppy, yes I managed to get to the end...well done in getting it all down, what an acheivement! If I had read your story 2 years ago,I would have been sceptical, to say the least....but now, sadly, your treatment (or rather, lack of it) and the continual blunders and lack of any contiuity of care don't surprise me, although they still shock me, if that makes sense. I know that if it where not for my supportive and assertive partner, who luckily is both ex-NHS staff, and has been through medical retirement issues herself, that I would have given up fighting the "system" a long time ago...and not just the NHS, but the Benefits Agencies and all the Insurance companies I have had to deal with over the past 18 months. So your plight of trying to cope alone, or with well intentioned but inadequate help was a bit to close to home! Even the strongest, most stable relationships are pushed to the limit with this illness, with tx and help going as it should, as we are all aware from the experiences both on the forum and in individual blogs.....in the horror story that is your situation, I cannot imagine the strains. I do hope that 2006 will be a better year for you and that you get the strenght to demand and get the 2nd opinion you so desperately need....good luck!

12:52 AM  
Blogger misspoppy said...

Hi Jane Riley
I would be delighted to buy you a diet coke if you ever make it to Manchester!:)
I am glad my posts have kept you interested, and who knows, there may be a happy ending yet, or at least a happy interlude, you will have to keep reading.
I am glad your fella honours you with coffee in bed and can assist in alleviating your stress, thank goodness you only need to throw soft toys, blunt objects or dinner tend to make a mess:)
Good wishes
Miss Poppy

12:01 AM  
Blogger misspoppy said...

Hi Jane1962
Thank you for your comments. I understand what you are saying about perhaps being sceptical about stories like mine in the past, sometimes I have to be really brave to press that publish button as I think I sound like such a loser and people may believe I must be doing something to encourage this poor treatment. Then I think this is the truth and it helps me to heal when I get it all off my chest.
I am sorry to learn that you too had a struggle with the powers that be, it is difficult to negotiate this stuff and the incompetancies of others when you are already sick. I am glad you had the support of your partner.
I will be getting the second opinion Jane, though it may not be immediate and will be dependant on answers around having another biopsy and the most expedient way of progressing that. What is certain at this stage is that I will not consider having treatment again under my present consultant.
Thank you for your good wishes for 2006, I wish you and your partner health and happiness in the year ahead too.
Miss Poppy

12:16 AM  

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