25th March to 3rd August 2008
Being busy with my new job and there not having been much significant change in the state of my chronic lymphocytic leukaemia condition for some time, I had let my blog slip since the end of March. So this entry is my attempt at catching up on those last four months - as briefly as possible.
Although getting through these last four months has been greatly aided by my being back at work and therefore having a real diversion from being totally health self-centred, Tina has been the real reason for my keeping my sanity and my sense of purpose. She has been just as fantastic this year as she was last year – and that was massive. Her promptings, reminders, advice and encouragement have been constant and brilliant – and at times when she has had more than enough pressures on herself from work and elsewhere. I really don’t know what I would have done without her. Anna and Matthew have been great, keeping in touch with all the ups and downs and I really look forward to Matthew’s 5 o’clock Friday afternoon calls.
I have felt pretty well all through this period, keeping clear of colds, etc., other than the sinusitis, which had started back in early February and is still with me. I was having monthly clinics at Brighton, but from early June they have become a little more frequent; I am usually seen by either Tim Corbett or Paul Hill. In late April I had found that the glands in my left armpit had started to enlarge – a symptom I came to know as far back as early 2003 - and by late May my neutrophil count went below 1.0 for the first time since February. Since then I have been on a series of GCSF injections to help boost my count. Despite this, my neutrophils do not seem to want to stay up for too long – which is a bit of a bind. The glands in my right armpit have also become enlarged, although not so much as in my left. I had a CT scan in late June, the results of which showed enlarged spleen, liver and glands in my duodenal area as well as confirming those in my armpits. So things are definitely on the move in the wrong direction for me. A bone marrow biopsy awaits me very soon – aaaagh!
I have had two clinics at Kings, one with a Doctor Robert Marcus and one with Steve Devereux. Dr Devereux saw me briefly on the first visit to tell me he was still “on the case” with the suppliers of Revlimid and was very hopeful of securing a supply. Unfortunately when we saw him again in June, things were not so hopeful. The early trials had had some unwanted side effects and the company had cancelled the appointment he had with them. He is still persisting with them, but advised that an approach to my Primary Care Trust, via Tim Corbett, would be a necessary second option. The only snag is that a year’s supply is likely to cost about £25,000 and not all PCTs are keen to spend that sort of money. However he feels that between them they would be able to make a convincing medical case. On the plus side is that I would not need the full treatment dosage (about £50,000 per year), rather that I would have a half dosage as “maintenance” for my condition.
Other than my recent neutrophil dip, my blood levels had been consistent, including my lymphocyte count – although this may read differently in the bone marrow of course. That was until my last clinic on 17th July when my haemoglobin count was only 10.4. Had I not been going on holiday straight away, no doubt I would have been back next week for a couple of units of blood. As our holiday has progressed I have felt more weary, but that could be the heat, rather than anaemia. We shall see next week when I have a follow-up blood test. Generally speaking my energy levels have been ok to date but I do not run for trains or buses any more and I must ensure I do not over-reach myself, especially with the current state of my immune system.
My weight has gradually improved, moving from 75 kgs in March to close on 77 kgs this month. This has no doubt been helped by my having my favourite jacket potato and chilli con carne every day I have at the office, plus our regular evening meal! I now have fully recovered my usual “good” appetite and my taste buds seem to be more or less back to normal. However, my sense of smell is still a problem.
With my sinusitis persisting – singing in the ears and a stuffy feeling in the head - I was referred to an ENT consultant in April. He advised twice daily hot water vapours, drinking plenty of liquids and to continue consistently with the once daily steroid-based nasal spray – which I confessed I had not been doing. He told me I may well need to carry on with this regime for a long time – like forever!
I also had a referral to a dermatologist to have a small non-malignant spot removed from my head by cryotherapy. I was told that it was old sun damage, typical for the bald ones like me! The referral was useful as the dermatologist told me that the methylprednisolone treatment last year had caused my skin to become thinner and that I must avoid direct sunlight as much as possible and use high factor sun cream. The strange thing is that I have looked suspiciously healthy all year – right from January. It seems almost as silly as this - that I can sit in doors with the sun shining outside and still get a suntan!! During our recent two weeks in France I got an extremely sore scalp, despite keeping out of the sun and wearing a hat. The backs of my hands are red and sore and I have what appears to be an allergic rash on both my forearms – and this is a week after coming home! I have also had the unusual phenomenon of blisters on the top of my toes – all very odd and very uncomfortable. I guess this is all down to exposure to the sun. With the thinning of my skin has come the tendency for the skin on my head and hands to cut or damage very easily - including the backs of my thumbs for some reason. The healing process is very slow and put at risk every time I need to put my hands in my pockets. No jokes please!!!
I still, of course, have my bronchiectasis – permanent lung scarring – and those two nasty bugs, pseudomonas (bacterial) and aspergillus (fungal) that have made their homes in my lungs. So part of my daily medication is to keep them suppressed, while my physio is intended to prevent them having collections of gunge in which to breed more bugs. On the advice of the chest consultant Dr Mark Jackson, my anti-bacterial medication was changed in late April from Ciprofloxacin tablets to another anti-biotic, Colomycin, which I have to take twice daily by inhalation through a nebuliser. This required my being supplied with a mains-electric portable nebuliser machine to go with it. Nothing of course goes smoothly in this world and I had teething troubles with my rather clumsy technique. It turned out I was breathing too vigorously!
I do my lung physio-therapy, twice a day. If I go to work in London for the day, I can only manage it once - in the evening. However, of their own volition, my lungs start to bring up gunge – the medical term is “expectorate” – around 11am each day! As you might imagine this can be a bit anti-social! My physio has been working well – I have been doing it since last December - and is generally very productive. “Better out that in” – as they say. I have also found it easier if I have my 5 minutes of hot vapours beforehand, even though that was not the intention. The one downside to the physio regime is that the necessary coughing involved is knackering. It is worse in hot weather as I usually end up covered in sweat, which was the case every day in France recently.
My various medical exploits didn’t end there. I have been living with a damaged cartilage in my foot for over six years and eventually, in June, had an injection in the joint in an effort to relieve, what has been, a long lasting but intermittent discomfort and pain. This turned out to be quite a big affair with myself and the surgeon surrounded by a team of medics and loads of technical equipment as I lay on the operating table. However it was all put into perspective beforehand when the surgeon made sure he would be working on the correct foot by drawing an arrow in black felt-tip pen on my left shin pointing downwards!! Although I was expecting to have a hydro-cortisone injection, because of possible complications with my CLL condition, it was decided that I should have anaesthetic instead. Apparently, it would just as effective but without the risk of subsequent infection. It also turned out to be a whole day affair, caused by poor scheduling by the hospital. I was there at 10.45pm, with no food after midnight and no liquids from 7am, but did not have my procedure until gone 5pm and no one bothered to tell me what was happening - I had to do all the chasing. I was furious and gave my feedback to the surgeon, the ward manager and the unit manager – and they all blamed each other! I am still unsure if the injection has made any difference, but time will tell.
So despite a seemingly uneventful few months, there has been plenty going on for me health-wise. In fact, in the two weeks starting 2nd June I had no less than seven clinic - or similar – appointments, one of which was all day and one all afternoon. At the same time I was trying to do three days a week at my job!
My daily medication regime is - and has been for some months - as follows:
- Voraconozole (anti-fungal) and Phenoxymethylpenicillin (anti-biotic) tablets - one of each - an hour before breakfast and dinner;
- Aciclovir (anti-viral) one three time daily;
- Omeprozole capsule (stomach anti-acid) once daily;
- Garlic pearl (stomach easer) twice daily;
- Colomycin nebuliser (twice daily – and this includes making up the solution and washing and thoroughly drying the kit after each usage!)
- Inhalation of hot water vapours for five minutes twice daily;
- Nasonex nasal spray once daily;
- Doublebase gel on my scalp at least once daily - to keep my skin from drying up;
- Lung physiotherapy at least once daily – but preferably twice.
Added to that I go to Brighton for Vigam and Pentamidine every 4 weeks, but we have not yet found a way of getting these to occur on the same days! Infusing Vigam – an immunoglobulin solution to boost elements in my neutrophils - is a 4 hour procedure and the day unit nurses, despite their experience and great care, still have difficulties finding a good vein to canulate me. On one occasion it was only successful on the fifth rather painful attempt! I have my Pentamidine, by nebuliser, in the Elton John Unit at Brighton and this takes about an hour.
You can imagine I had quite a load of medication and equipment to take with me when we went away for two weeks to France. Well, in all the fervour I forgot to pack the Voraconozole tablets.! So Matthew had to ship them out to me in the Vendee via UPS - at a cost of £60. I would not have bought them in France as they are £1800 for a month’s supply. That's £23,400 per year!
With all this going on I am amazed that I have been able to keep a high level of activity with my job. The project I have been asked to do is very interesting, engaging and stimulating – so that has helped greatly. Getting out of the house by 8am to get up to London once or twice a week – and maybe more in the near future – has been quite a challenge. One real positive to come out of getting back to work has been that my physical strength has improved immensely, compared with how I felt back in March and earlier. It is only with that improvement that I realised just how much last year had taken out of me. The other real positive has been the warm welcome back I received from the Safer Neighbourhoods team. It was really fantastic and made me feel great inside. I could not have asked for more!
Apart from breaks away to La Gomera, Milan and Honfleur, plus the holiday in France we were on in late July, other main events of the last four months have been focussed around things to do with the house. We had to have a complete house re-wire, which took place from 28th April for a week. Beforehand that entailed a total emptying of the loft, with grateful thanks to Paul Wehrle, as I could not get up in all that dust with the state of my lungs – let alone the exertion involved. I was knackered at the end of it and all I did was stack things in the garage with Tina doing all the running up and down stairs! Of course we discovered that half the loft contents were Anna’s, not ours at all. As I type, there are still quite a few of her things in the garage – and everything must go! Nothing goes back in the loft!
We also had to clear as much out of the house as possible to give the electricians access to floor boards and corners – and to ensure all the contents did not get full of dust. We were assured the house would get very dusty and that we should vacate while the work was being done. Fortunately our near neighbours, Jim and Cath let us have use of their house while they were away on holiday – conveniently at exactly the same time!
However, no more than three hours into day no. 1 of the post re-wire clear up – 6th May- Tina fell and badly cut her hand. The rest of the day was spent at A & E with her wound needing eight stitches. It was a very nasty injury, but in fact she was lucky in that she could have severed tendons or an artery. Of course that put paid to her week intended for clearing up the house – and she had taken a week off work specially to do it! Anna and Matthew were coming to help later in the week anyway, but their help was all the more needed now!! I am pleased to say that her hand has recovered pretty well since then, such that Tina was able to kayak 10 miles down the Dordogne last week with no ill effects – and has a photograph to prove it!
Well I think I have just about covered most things that have occurred over the past four months. If I have left out anything, especially if it is something relating to anyone reading this blog, then my apologies in advance!
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