The Ceiling is Falling in – More Treatment ASAP

Monday 11th to Monday 25th August 2008

It’s Bank Holiday Monday (25 August) and I am again having to play “catch up” on the happenings of the last two weeks. We celebrate Eva’s 2nd birthday with Anna and Nick over the weekend of 9/10th and also on Sunday, Jim and Cath Rodgers’ 40th anniversary. That day I also speak to my old friend John Mason on the phone about my blog. He has had a career in chiropody, podiatry and surgery. He talks me through how to deal with the nasty blister on the top of my toe. It’s all to do with my condition, my treatment and exposure to the sun. Tina and I then carry out John’s instructions and I am left with a fully dressed toe and an empty blister. He tells me not to touch it for five days and it should be all ok. Five days later we take off the dressings to find the blister half filled again. We drain and dress it once more, leave it for more than five days this time and find everything progressing well. I guess it took longer for me with my dodgy immune system. Two weeks later and the blister has completely gone with new skin in its place. Many thanks John!

I go to the office in London on Monday, work at home Tuesday and Tina and I have a day off together on Wednesday. We go to Lewes and buy a rather nice watch for her – my very belated 60th birthday present and 13 months overdue! On Thursday I am down to the RSCH in Brighton for my three hours of Vigam infusion. It turns out to be four and a half hours and I get a parking ticket. I am appealing and will get a letter of support from the Day Unit if needed. My weight today is 77.4 kgs and my bloods are quite good, although my lymphocyte count is 3.9 – an upward trend. I have managed to get out of having a second bone marrow biopsy. Taku thought there was an insufficient sample, but in the end it was enough.

I have a day working in London on Friday and we go to Tony and Pam’s in Sarre for the weekend. It is good fun, they are such great company and we have a very enjoyable time. The only drawback from being in company, either home or away, is always my health routines, physio, GCSF injections, etc. They can be quite intrusive and at times very anti-social. Still needs must!

I have a day at the office on Monday and put in a call to Tim Corbett to hear that the application for Revlimid has been turned down by the PIN Panel (Patients with Individual Needs) on the grounds that there is insfficient evidence of its efficacy in relation to CLL. Tim will appeal on my behalf, research more data to put to the panel and suggests I write to my MP – this is a fairly hot political issue at the moment, especially after the recent report on the decision making of these panels by the Rarer Cancers Forum. Tina and I are nonetheless at a low ebb that evening. I also hear that my bone marrow is 90% CLL cells – not surprising considering all the other symptoms I have.

On Tuesday I see Tim Godwin at the Yard for a chat. He is great and is very concerned to hear that things are starting to go downhill for me. Most of all he is very encouraging. He had another appointment immediately after seeing me and to my surprise and delight it was Dave Colella, together with his wife, saying goodbye to Tim on his retirement. Dave was my town centre beat officer in my Crawley days, with Tim as our superintendent. Dave had transferred to the Met some years back and has now done his time. Dave, of course, was amazed to see me and it was a rather nice reunion. I left the Yard en route to Tottenham in Tim’s staff car, courtesy of Tim’s staff officer, Sally. It was rather nice being chauffeured in a smart car, but I ended up at the wrong Tottenham nick and had to get another lift to the right one(!)

I worked at home on Wednesday and on Thursday morning Tina and I went down to the RSCH for my clinic. We saw Taku Sogay, with Tim Corbett coming in half way through for a chat. My weight is 77.5 kgs and my blood results are: Wbc: 7.1; Neuts: 1.5; Lymph: 4.2; Hbn: 9.6; PLT: 50. Tim has dictated the appeal letter so we will have it heard at the next PIN Panel meeting on 5 September. We discuss possible options should the appeal be unsuccessful, including the steroid Dexamethasone in combination with something else. I mention the very painful leg cramps I have been getting at night, albeit not every night thank goodness! I am prescribed a supply of quinine sulphate and get another three weeks supply of GCSF. I have also started to get night sweats – just my head – and not every night as yet.

We are up quite early for my 10.15am appointment at Kings, which we have with a new consultant, Robin Ireland. He is joined by Steve Devereux for a discussion on my treatment plan during the consultation. Various options were discussed including the dreaded CamPred. However, it is decided that I should start on Dexamethasone as soon as possible to “debulk” the CLL in my bone marrow. If the PCT approves the prescribing of Revlimid, I will have that to run alongside it. If not, then I will have Thalidomide instead, which does not need PCT approval. Each of these treatments is in tablet form and none is expected to have any invasive side effects, so I will be able to carry on working as normal – which is good! Robin will fax a letter to Tim Corbett today and I am to contact him next week for an early appointment. I am due back to Kings in two months. As we are leaving, Viki Bevan, the clinical nurse specialist, knowing the recent changes in my condition, makes a point of seeing us and we have a good chat. She is always so supportive. Isn’t that great and so very thoughtful. She asks me to let her know the result of the PCT appeal. Today for the first time we noticed that the Haematology Unit has a Mission Statement displayed in the waiting room. I can’t now remember what it said, but it was a good one and we both agreed they all live up to it. I call Anna and Matthew with our news in the evening.

At the weekend I type an email letter to my MP, Nick Herbert, asking for his help with the PCT appeal. Although it is the holiday month of August, his website states that his office will be staffed. I cite the Rarer Cancers Forum report on “Exceptional Case” applications to PCTs as well as detailing my situation. PCT cancer drug decisions have become a political hot potato recently, so here’s hoping. Tina takes Anna, Nick and Eva to Heathrow on Sunday morning as they have a photographic assignment in Los Angeles for the next four weeks or so. We then go to Jane and Richard’s in Shorne for lunch and I meet up with an old school friend, Michael Baulk. It is amazing as we have not seen each other in 47 years! We are both A level – failed former Grammar School pupils, but he was always the bright fellow with lots of flair and way ahead of the rest of us in the latest ideas, TV jingles and so on – and he is just the same as he was back then in so many ways. It was an absolute delight and we hope to keep in touch. We then zoom back to Worthing to babysit for Matthew and Charrise as it is their 6th wedding anniversary and they are dining out. They have a super meal.

Monday is a recovery day for me as I have so much gunge in my lungs which wants to get out, despite my physio. I was coughing a lot yesterday and seem to strained something in the area of my diaphragm. Instead of going to the Worthing Carnival, where Charrise was doing a singing spot in the afternoon, I decided that more physio and an hour or so rest was needed. So, Charrise, sorry we could not be there to support you, but the physio was essential and the rest did me a deal of good, because my coughing eased considerably, as did the discomfort in my diaphragm. Good thing it is Bank Holiday Monday. I would not have relished a day’s work in London given the way I felt.

Back with a Bump, Blood and Biopsy

Monday 4th to Friday 8th August 2008

Monday is very much a recovery day for me after two days driving back through France – albeit we did less than 300 miles each day. Tina, of course has washing, ironing, shopping, etc. to do! I am feeling quite weary and guess that my haemoglobin count is low. I wanted to finish my blog, most of which I had typed while on holiday, but instead I sleep for two hours in the afternoon.

On Tuesday I go down to the Elton John Unit at Brighton for my Pentamidine nebuliser with Abby. I also have a blood test, the result of which is:- Wbc: 5.2; Neuts: 0.9; Lymph: 3.3; Monocytes: 1.0; Hbn: 9.2; PLT: 81. There is nothing good there at all. I am due back to the Day Unit on Thursday, so they line me up for two units of blood as well. No wonder I have been feeling weary. Despite six doses of GCSF whilst away, my neutrophils are back where they were just over two weeks ago. Whilst still within the “normal” range, 3.3 is the highest lymphocyte count I have had since my early “Campred” treatment last February. I note for the first time ever, a Monocyte count of 1.0 – slightly above the “normal” range. These are white blood cells which create macrophages, the scavengers and cleansers in the blood system. I don’t know what significance this might have, if any. I have a supply of a further six doses of GCSF at home, so I start another session this evening.

I now have a rather nasty blister well over 1” long sitting like a white slug on the top of one of my toes, so I work at home on Wednesday rather than risk going to London, bursting the blister and getting an infection.

I have a very long Thursday starting at 9.15am having a blood cross-match for my transfusion later and another blood test. The only good news of the day is that my weight is now 78kgs – over a kg up from three weeks ago and no doubt the result of some hearty eating in France! This is followed by an 11am clinic with Ros Johnston. My counts have changed little since Tuesday - Wbc: 5.2; Neuts: 1.8; Lymph: 2.5; Hbn: 9.5; PLT: 62. I forget to ask about the Monocytes. I am having a bone marrow biopsy in the Day Unit this afternoon and Ros tells me that the full results will not be available for about 10 days or so. It is suggested that I put back my next week’s appointment with Steve Devereux at Kings for another week, so that he will then have the results himself. I will have another clinic the day before (21 August) so that I will have a briefing on the results beforehand. She makes a referral to the consultant dermatologist about the blisters on my toes and gives me a prescription for another two weeks’ worth of GCSF. The application to the Primary Care Trust for the prescribing of Revlimid will go before their “PIN” Panel in the next day or so and their decision should be known by my 21 August appointment. Not being NHS licenced or “NICE” approved for CLL – and at £25,000 for a year’s supply, I have to have all my fingers and toes crossed. This is pretty important for me!

I have a transfusion of two units of blood in the Day Unit, starting at 2pm and going on until past 6pm. I read and doze through this until my bone marrow biopsy at 6.50pm. My bone marrow appointment was in fact 2pm and, because I was going to have a sedative, I have not eaten since breakfast at 8am. The registrar, Dr. Taku Sogai, carries out my biopsy with staff nurse Penny. The sedation is good and I remember nothing! I have no recollection of making notes in my notebook either, but, looking at them later, they are quite relevant, although a complete scribble. I must have another biopsy next Thursday from the left side of my pelvis. I don’t remember why. I burble down the phone to Tina to come and get me and then have something to eat. She tells me I got home at 8.30pm. It is all a bit of a haze, but at least there was no pain! - although the site of the biopsy bleeds quite a lot.

I recover enough for me to do a day’s work on Friday. Again the blister on my toe is too risky for a journey to London. Fortunately, although there will be plenty awaiting me at the office, I have plenty of work for me to do at home. It is also good therapy. Anna, Nick and Eva come to us in the evening for dinner, but by 9pm I am asleep!

I Resume My CLL Blog but My Condition Starts to Regress

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!