Aftercare part 1

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

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

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off treatment and discharged from the overnight hospital stay that I described in my last blog post entry 'Treatment Withdrawn'.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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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