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!
Saturday, 9 August 2008
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!
Monday, 24 March 2008
Looks Like I Will be Pill Popping for Another Year
Monday 18th to Sunday 23rd March 2008
I am up to London for a day’s work. I have a meeting two floors up from my office and another in the afternoon at Scotland Yard, which gets me out again. With plenty of background reading to do at home, Easter and our week in La Gomera to come, I shall not be back in the office for two weeks. In the evening we go to Worthing and meet up with Matthew and co. to see Joseph and His Amazing Technicolour Dreamcoat. It is Ella’s birthday and this is her special birthday treat. It was great, but bless her, she fell asleep half way through the second half of the show!
On Tuesday I have the Citroen serviced, do some paperwork and then go to Brighton for my Pentamidine nebuliser. As usual the taste is bitter and I cough up loads of stuff on the way home – and yet more productively with my physio once I am home. I work all day Wednesday background reading for my project, while Tina has a day out in Tunbridge Wells with cousin Jane. I get a call to tell me that my Dermatologist’s appointment is on 11th April. That is quick. I am still to hear from the ENT people about an appointment for my sinus problem! Incidentally, my sinuses seemed to have unblocked some days back and I stopped using the nose drops. However, a few days later, back it came and so I am back on the nose drops again. It seems to have regressed quite a lot – which is slightly uncomfortable and very annoying.
Thursday morning is my Brighton clinic and I see Tim Corbett. My weight is 75 kgs – no change in two weeks. It takes three attempts to get blood from me today! My blood results are good – Wbc: 3.1; Neuts: 1.6; Lymph: 1.1; Hbn: 12.9; Plt: 77. My neutrophils have stayed constant remarkably for the past four weeks without any GCSF injections being necessary - all very good news. Tim comments on my sinusitis persisting, because my immune system recovery is slow. The more detailed breakdown of my white cells indicates this and shows that and I need to remain on Ciprofloxacin (or similar), Voraconozole and monthly Pentamidine and Vigam for the time being. Tim says it could be a year before I can come off these. He has yet to get a full response from Mark Jackson on my changing over to Colomycin, which needs a nebuliser being supplied as well. I hope to hear more on that later. Apart from the usual rattles in my chest, there are no problems with my physical examination. Tim agrees that a dermatologist should look at the place on my head, albeit it is has reduced in size and appearance. He will send me a copy of his GP letter so that I have it with me when we go to La Gomera, should I need it for any adverse reason. I will take my supply of Amoxycillin with me anyway, just in case I pick up a cold. I am to see him again in three weeks.
We have Easter weekend away at Linda’s in Leicestershire and we leave after breakfast on Good Friday morning and have a really enjoyable time. On Saturday Tina, Linda and Anita go shopping to Nottingham, while Bob, Paul, Tom and I go to the pub. I later find out that three pints of Pedigree at lunchtime is just a little too much for me in my slightly dodgy state of health. I am a little subdued for the rest of the day! We wake on Easter Sunday to a carpeting of snow, but it is gone by late morning. We have a good circular walk along the towpath to Shackerstone and back – about two and a half miles - with a stop for refreshment in the village. This is followed by plenty of lung evacuation physio! My sinuses are still playing up. We drive home on Monday morning and the day turns into a clear bright afternoon but still with a wintry feel about it. Can’t wait to fly off on Wednesday for a week of sun, rest and recuperation.
I am up to London for a day’s work. I have a meeting two floors up from my office and another in the afternoon at Scotland Yard, which gets me out again. With plenty of background reading to do at home, Easter and our week in La Gomera to come, I shall not be back in the office for two weeks. In the evening we go to Worthing and meet up with Matthew and co. to see Joseph and His Amazing Technicolour Dreamcoat. It is Ella’s birthday and this is her special birthday treat. It was great, but bless her, she fell asleep half way through the second half of the show!
On Tuesday I have the Citroen serviced, do some paperwork and then go to Brighton for my Pentamidine nebuliser. As usual the taste is bitter and I cough up loads of stuff on the way home – and yet more productively with my physio once I am home. I work all day Wednesday background reading for my project, while Tina has a day out in Tunbridge Wells with cousin Jane. I get a call to tell me that my Dermatologist’s appointment is on 11th April. That is quick. I am still to hear from the ENT people about an appointment for my sinus problem! Incidentally, my sinuses seemed to have unblocked some days back and I stopped using the nose drops. However, a few days later, back it came and so I am back on the nose drops again. It seems to have regressed quite a lot – which is slightly uncomfortable and very annoying.
Thursday morning is my Brighton clinic and I see Tim Corbett. My weight is 75 kgs – no change in two weeks. It takes three attempts to get blood from me today! My blood results are good – Wbc: 3.1; Neuts: 1.6; Lymph: 1.1; Hbn: 12.9; Plt: 77. My neutrophils have stayed constant remarkably for the past four weeks without any GCSF injections being necessary - all very good news. Tim comments on my sinusitis persisting, because my immune system recovery is slow. The more detailed breakdown of my white cells indicates this and shows that and I need to remain on Ciprofloxacin (or similar), Voraconozole and monthly Pentamidine and Vigam for the time being. Tim says it could be a year before I can come off these. He has yet to get a full response from Mark Jackson on my changing over to Colomycin, which needs a nebuliser being supplied as well. I hope to hear more on that later. Apart from the usual rattles in my chest, there are no problems with my physical examination. Tim agrees that a dermatologist should look at the place on my head, albeit it is has reduced in size and appearance. He will send me a copy of his GP letter so that I have it with me when we go to La Gomera, should I need it for any adverse reason. I will take my supply of Amoxycillin with me anyway, just in case I pick up a cold. I am to see him again in three weeks.
We have Easter weekend away at Linda’s in Leicestershire and we leave after breakfast on Good Friday morning and have a really enjoyable time. On Saturday Tina, Linda and Anita go shopping to Nottingham, while Bob, Paul, Tom and I go to the pub. I later find out that three pints of Pedigree at lunchtime is just a little too much for me in my slightly dodgy state of health. I am a little subdued for the rest of the day! We wake on Easter Sunday to a carpeting of snow, but it is gone by late morning. We have a good circular walk along the towpath to Shackerstone and back – about two and a half miles - with a stop for refreshment in the village. This is followed by plenty of lung evacuation physio! My sinuses are still playing up. We drive home on Monday morning and the day turns into a clear bright afternoon but still with a wintry feel about it. Can’t wait to fly off on Wednesday for a week of sun, rest and recuperation.
Thursday, 20 March 2008
Back to Work – Week Two
Monday 10th to Sunday 16th March 2008
I spend Monday at home doing odds and ends. I do a couple of hours work reading documents relating to my project. I am already feeling rather full stomached - or is that my stomach is shrinking again? - after only two days without Omeprazole, so I resume my tablet in the evening. It was worth trying, if only to see that I still need it!
I am up to the office on Tuesday. Martin has generously increased my daily fee and has had a contract drawn up. I get hold of some more background information for my project and go over to the offices on the Embankment to sign my contract. So here is a little more exercise for me, but I am tired in the evening. I am at home again on Wednesday. I do some sorting out reference my resuming self employment, including talking to Graham Hole over my likely tax and national insurance needs – very timely as it is budget day! I have two very productive lung physio sessions. I guess there is no end to this!
I work from home on Thursday but go to the doctor as I have a troublesome place on my head which has been there for about two years. It started off as dry skin, but has gone on to be irritating and occasionally sore and scabby. It has become a larger scabby place in the last few days and I didn’t want to wait another week until I say Tim Corbett. I am reassured that it is non-problematic sun damage. I get a referral to a dermatologist at Brighton and some anti-biotic Bactroban ointment to ensure any potential infection is dealt with.
I go to the office on Friday. I have a big coughing-up session about 11.30am, but I am able to find somewhere quiet for it, fortunately. Otherwise it is an uneventful day and evening, although I have to do my physio when I get home. I am very pleased with my first two week’s back at work and I think that I can manage whatever comes as long as I know my limitations.
Saturday is a relaxing day in preparation for Ella’s 7th birthday fancy dress party this evening down at Worthing. We go as cowboy and cowgirl - complete with hats! It is the usual children’s birthday chaos with Charrise doing a great job keeping everyone entertained and in order. Matthew and co. come to us for Sunday lunch and afters. It is a lousy day, so we don’t venture out. I do an hour of physio in the late afternoon. It is quite difficult and I am also tired. I fall asleep twice, hence half and hour becomes one hour! The nasty place on my head seems to be easing with the regular use of the ointment.
I spend Monday at home doing odds and ends. I do a couple of hours work reading documents relating to my project. I am already feeling rather full stomached - or is that my stomach is shrinking again? - after only two days without Omeprazole, so I resume my tablet in the evening. It was worth trying, if only to see that I still need it!
I am up to the office on Tuesday. Martin has generously increased my daily fee and has had a contract drawn up. I get hold of some more background information for my project and go over to the offices on the Embankment to sign my contract. So here is a little more exercise for me, but I am tired in the evening. I am at home again on Wednesday. I do some sorting out reference my resuming self employment, including talking to Graham Hole over my likely tax and national insurance needs – very timely as it is budget day! I have two very productive lung physio sessions. I guess there is no end to this!
I work from home on Thursday but go to the doctor as I have a troublesome place on my head which has been there for about two years. It started off as dry skin, but has gone on to be irritating and occasionally sore and scabby. It has become a larger scabby place in the last few days and I didn’t want to wait another week until I say Tim Corbett. I am reassured that it is non-problematic sun damage. I get a referral to a dermatologist at Brighton and some anti-biotic Bactroban ointment to ensure any potential infection is dealt with.
I go to the office on Friday. I have a big coughing-up session about 11.30am, but I am able to find somewhere quiet for it, fortunately. Otherwise it is an uneventful day and evening, although I have to do my physio when I get home. I am very pleased with my first two week’s back at work and I think that I can manage whatever comes as long as I know my limitations.
Saturday is a relaxing day in preparation for Ella’s 7th birthday fancy dress party this evening down at Worthing. We go as cowboy and cowgirl - complete with hats! It is the usual children’s birthday chaos with Charrise doing a great job keeping everyone entertained and in order. Matthew and co. come to us for Sunday lunch and afters. It is a lousy day, so we don’t venture out. I do an hour of physio in the late afternoon. It is quite difficult and I am also tired. I fall asleep twice, hence half and hour becomes one hour! The nasty place on my head seems to be easing with the regular use of the ointment.
Wednesday, 12 March 2008
I Get Back to Work after 14 Months
Monday 3rd to Sunday 9th March 2008
After living with my sinusitis for over four weeks, at last I have a CT scan on my sinuses on Monday afternoon. I am told that a scan result will be with my consultant for my Thursday clinic. I do a bit more clearing of the garage.
I go up to Earls Court on Tuesday for my first working day for 14 months and to discuss a contract and what Martin and Steve want me to do. I take the 8.26am train, getting to the office at 9.45am. Just right for me, except that I have to catch the school bus from here! I have an hour or so in the office chatting with the old team before Martin and Steve arrive. All seven of that main team are in and make me very welcome. I am made even more welcome by Steve and Martin. It is great to be back, but even nicer is the warmth of that welcome from the top duo. Almost brought a tear to the eye! Martin has an interesting project for me looking into consultation arrangements across London. I don’t have the complete specification today but it looks like six months’ work to me. My plan is to take early opportunities to get out and about and see how I cope with walking the streets of London, climbing up and down tube station stairs and generally exercising myself as I predict quite a bit of my future working life this year will be. I am free for the afternoon, so I test out my stamina straight away, by travelling across to Holborn to meet up with an old analyst contact from my 2006 project. It is a very worthwhile visit in all respects. I walk a total of about two miles, some of it unnecessary as I go to the wrong station for my train home. It is quite exerting and I cough up a load of gunge sitting on the platform at St Pancras, but I consider that I passed the test. I catch a bus home from the station and get home at 7pm. Quite a day!
On Wednesday I finish sorting out the garage contents and take a load of rubbish to the tip. I leave a message on Pete Korell’s blog, including asking him to email me if he has time.
I have a morning clinic at Brighton on Thursday and see Sangeeta. My CT scan shows that the right drainage hole is still blocked, but I have to say that it is feeling slightly better. Carry on with the nasal drops. She tells me that I have an appointment with the ENT team in the pipeline for sometime soon. My blood results today are - Wbc: 3.3; Neuts: 1.7; Lymph: 1.2; Hbn: 13.3; Plt: 96. I do not need a GCSF injection and can wait for the next clinic in two weeks to see how the neutrophils progress. I am to continue with the Pentamidine nebuliser, which I am scheduled to have in two weeks time. I then go to Staplefield for lunch with another former work colleague Dave Scales. We go back to 1976 in the Burgess Hill CID, when he was my boss, but we haven’t seen each other since May 1997. It’s really great to meet again and we do an immense amount of catching up.
I have another day in London on Friday, getting up early to catch the 7.19 train. The team has organised a national conference of Neighbourhood Policing and I have a sitting and listening day. It is very relaxing and I make a couple of useful contacts for my impending project! I even have a chat with Tim Godwin who comes in the do the closing speech - yet another blinder of course! He is delighted that I am back. We babysit for Matthew and Charrise in the evening, including my driving them to and from their friends. Today is another test for me, as not only do I have a day in London, but I drive a total of 76 miles, half of which is after midnight and an hour or so dozing on the settee!
We have Tony and Pam visit us for the weekend. We meet up at the Royal Oak for lunch on Saturday and have a leisurely rest of the day with plenty of chatting. We have an energetic walk on Sunday morning up at Wakehurst Place. It isn’t that we walk very far, but the first half is mainly downhill and so the second half is mostly uphill - and very steep at that! Another test for my dodgy lungs! My stomach has seemed to be well back to normal for the past two months, so I decide to stop taking my daily Omeprazole tablet ands see what happens. For the first time in my living memory there is only one club from the top flight - Portsmouth - in the semi-finals of the FA Cup. The others are West Bromwich, Cardiff and Barnsley - who beat Liverpool and Chelsea in their last two ties.
After living with my sinusitis for over four weeks, at last I have a CT scan on my sinuses on Monday afternoon. I am told that a scan result will be with my consultant for my Thursday clinic. I do a bit more clearing of the garage.
I go up to Earls Court on Tuesday for my first working day for 14 months and to discuss a contract and what Martin and Steve want me to do. I take the 8.26am train, getting to the office at 9.45am. Just right for me, except that I have to catch the school bus from here! I have an hour or so in the office chatting with the old team before Martin and Steve arrive. All seven of that main team are in and make me very welcome. I am made even more welcome by Steve and Martin. It is great to be back, but even nicer is the warmth of that welcome from the top duo. Almost brought a tear to the eye! Martin has an interesting project for me looking into consultation arrangements across London. I don’t have the complete specification today but it looks like six months’ work to me. My plan is to take early opportunities to get out and about and see how I cope with walking the streets of London, climbing up and down tube station stairs and generally exercising myself as I predict quite a bit of my future working life this year will be. I am free for the afternoon, so I test out my stamina straight away, by travelling across to Holborn to meet up with an old analyst contact from my 2006 project. It is a very worthwhile visit in all respects. I walk a total of about two miles, some of it unnecessary as I go to the wrong station for my train home. It is quite exerting and I cough up a load of gunge sitting on the platform at St Pancras, but I consider that I passed the test. I catch a bus home from the station and get home at 7pm. Quite a day!
On Wednesday I finish sorting out the garage contents and take a load of rubbish to the tip. I leave a message on Pete Korell’s blog, including asking him to email me if he has time.
I have a morning clinic at Brighton on Thursday and see Sangeeta. My CT scan shows that the right drainage hole is still blocked, but I have to say that it is feeling slightly better. Carry on with the nasal drops. She tells me that I have an appointment with the ENT team in the pipeline for sometime soon. My blood results today are - Wbc: 3.3; Neuts: 1.7; Lymph: 1.2; Hbn: 13.3; Plt: 96. I do not need a GCSF injection and can wait for the next clinic in two weeks to see how the neutrophils progress. I am to continue with the Pentamidine nebuliser, which I am scheduled to have in two weeks time. I then go to Staplefield for lunch with another former work colleague Dave Scales. We go back to 1976 in the Burgess Hill CID, when he was my boss, but we haven’t seen each other since May 1997. It’s really great to meet again and we do an immense amount of catching up.
I have another day in London on Friday, getting up early to catch the 7.19 train. The team has organised a national conference of Neighbourhood Policing and I have a sitting and listening day. It is very relaxing and I make a couple of useful contacts for my impending project! I even have a chat with Tim Godwin who comes in the do the closing speech - yet another blinder of course! He is delighted that I am back. We babysit for Matthew and Charrise in the evening, including my driving them to and from their friends. Today is another test for me, as not only do I have a day in London, but I drive a total of 76 miles, half of which is after midnight and an hour or so dozing on the settee!
We have Tony and Pam visit us for the weekend. We meet up at the Royal Oak for lunch on Saturday and have a leisurely rest of the day with plenty of chatting. We have an energetic walk on Sunday morning up at Wakehurst Place. It isn’t that we walk very far, but the first half is mainly downhill and so the second half is mostly uphill - and very steep at that! Another test for my dodgy lungs! My stomach has seemed to be well back to normal for the past two months, so I decide to stop taking my daily Omeprazole tablet ands see what happens. For the first time in my living memory there is only one club from the top flight - Portsmouth - in the semi-finals of the FA Cup. The others are West Bromwich, Cardiff and Barnsley - who beat Liverpool and Chelsea in their last two ties.
Monday, 3 March 2008
A Week in the Garage and some Movement with the Sinusitis
Monday 25th February to Sunday 2nd March 2008
The initial plan to get up to London to discuss my return to work with Martin has to be put off for a week, so the main theme this week is clearing out the garage! It has been used as a store for convenience and a most annoying collection of rubbishy items for well over a year. Time for a “Spring” clean. Of course I have to be careful about damaging or cutting my hands and overdoing things with my energy levels still below par. But I bang my head on the garage door instead and need a plaster on it for the rest of the week! Anyway I do a steady two hours on Monday, Tuesday and Thursday mornings, after a short walk out and my lung clearing physio. On Tuesday evening I get a call from Tim Godwin. He says he wants me back at work on Monday! Ha, ha - just a small matter of a contract is needed, but a great motivation nonetheless. I get another nice message on my blog from Pete Korell in Wisconsin. He is about to see a consultant in Wilwaukee on the prospect of a transplant, but first had to negotiate permission with his insurance company. Not the best thing to have to do when you are ill as well! We don’t realise how lucky we are in the UK until we hear these stories. Anyway Pete, hope you get all the right answers and you are able to go through to your transplant.
Tina and I do two fast trips to the local tip on Wednesday morning with all the stuff I have rooted out of the garage. Then I see Richard Cook, my GP, about my sinusitis. This has been with me for very nearly four weeks and I am getting fed up with it! The nose spray we bought from the chemist has not made any effect. He prescribes me some Mometasone, a steroid based spray and some more antibiotics, this time Doxycycline for seven days. We go to cinema for the first time for about 18 months, if not longer, to see Oscar winning Daniel Day-Lewis in “There will be Blood” - superb. Whilst garage clearing on Thursday morning and doing some essential nose blowing, my left ear pops for the first time since in these past four weeks. At last! In fact it happens three times. Just goes to show what the proper medication can do in just two days!
On Friday I have my Day Unit appointment for my monthly Vigam immunoglobulin infusion plus a blood test. It is another four hour session. My blood results today are - Wbc: 3.9; Neut: 2.5; Lymph: 0.9; Hbn: 12.5; Plt: 104; and CRP: 16 - so I don’t have to take home any GCSF, but the CRP shows that I still have infection in me. My weight today is 74.7kgs - up slightly from last Friday. It is worth recording that my current daily medications are anti-viral, anti-fungal and anti-biotic, namely Aciclovir 200mg 3 times daily, Voriconozole 200mg twice daily and Ciprofloxacin 500mg twice daily. Additionally I have Omeprazole 20mg once daily and a garlic pearl twice daily for my stomach. Then it is Vigam and Pentamidine once monthly.
We have dinner at Val and Michel’s on Friday evening, meet up with Lu and Roger for lunch at the Royal Oak on Saturday and a fillet steak dinner at home that evening. Sunday being Mothers’ Day, we go down to Matthew’s for lunch of a superb Jamie Oliver Italian leg of lamb - absolutely delicious! Matthew and I take Ella and Mia on their bicycles to the local park on a fairly chilly afternoon. It certainly blows the cobwebs out of my lungs! Needless to say I get home for a big lung evacuation session. I am certainly getting plenty out from in there lately. Better out than in as they say. My sinusitis is still very much with me, well over four weeks since it started, but I am feeling a few movements from the congestion up there, so the medicine must be working.
The initial plan to get up to London to discuss my return to work with Martin has to be put off for a week, so the main theme this week is clearing out the garage! It has been used as a store for convenience and a most annoying collection of rubbishy items for well over a year. Time for a “Spring” clean. Of course I have to be careful about damaging or cutting my hands and overdoing things with my energy levels still below par. But I bang my head on the garage door instead and need a plaster on it for the rest of the week! Anyway I do a steady two hours on Monday, Tuesday and Thursday mornings, after a short walk out and my lung clearing physio. On Tuesday evening I get a call from Tim Godwin. He says he wants me back at work on Monday! Ha, ha - just a small matter of a contract is needed, but a great motivation nonetheless. I get another nice message on my blog from Pete Korell in Wisconsin. He is about to see a consultant in Wilwaukee on the prospect of a transplant, but first had to negotiate permission with his insurance company. Not the best thing to have to do when you are ill as well! We don’t realise how lucky we are in the UK until we hear these stories. Anyway Pete, hope you get all the right answers and you are able to go through to your transplant.
Tina and I do two fast trips to the local tip on Wednesday morning with all the stuff I have rooted out of the garage. Then I see Richard Cook, my GP, about my sinusitis. This has been with me for very nearly four weeks and I am getting fed up with it! The nose spray we bought from the chemist has not made any effect. He prescribes me some Mometasone, a steroid based spray and some more antibiotics, this time Doxycycline for seven days. We go to cinema for the first time for about 18 months, if not longer, to see Oscar winning Daniel Day-Lewis in “There will be Blood” - superb. Whilst garage clearing on Thursday morning and doing some essential nose blowing, my left ear pops for the first time since in these past four weeks. At last! In fact it happens three times. Just goes to show what the proper medication can do in just two days!
On Friday I have my Day Unit appointment for my monthly Vigam immunoglobulin infusion plus a blood test. It is another four hour session. My blood results today are - Wbc: 3.9; Neut: 2.5; Lymph: 0.9; Hbn: 12.5; Plt: 104; and CRP: 16 - so I don’t have to take home any GCSF, but the CRP shows that I still have infection in me. My weight today is 74.7kgs - up slightly from last Friday. It is worth recording that my current daily medications are anti-viral, anti-fungal and anti-biotic, namely Aciclovir 200mg 3 times daily, Voriconozole 200mg twice daily and Ciprofloxacin 500mg twice daily. Additionally I have Omeprazole 20mg once daily and a garlic pearl twice daily for my stomach. Then it is Vigam and Pentamidine once monthly.
We have dinner at Val and Michel’s on Friday evening, meet up with Lu and Roger for lunch at the Royal Oak on Saturday and a fillet steak dinner at home that evening. Sunday being Mothers’ Day, we go down to Matthew’s for lunch of a superb Jamie Oliver Italian leg of lamb - absolutely delicious! Matthew and I take Ella and Mia on their bicycles to the local park on a fairly chilly afternoon. It certainly blows the cobwebs out of my lungs! Needless to say I get home for a big lung evacuation session. I am certainly getting plenty out from in there lately. Better out than in as they say. My sinusitis is still very much with me, well over four weeks since it started, but I am feeling a few movements from the congestion up there, so the medicine must be working.
Tuesday, 26 February 2008
Good News - I Can Go Back to Work
Friday 22nd February 2008
We are away at 9am on Friday for my appointment with Steve Devereux at Kings. It is school half term this week and we get to our parking place in 65 minutes - a record! We bump into Ron and Linda Chamberlain in the coffee shop area. By coincidence Linda has an appointment this morning as well. Ron says Cobham is still not the same since Eve died. We meet Steve Devereux’s secretary, Judith, as arranged over the telephone. I wanted to meet face to face with her as she has always been really helpful over the phone. She is delightful. We also have a chat with Andre Jansen, the transplant co-ordinator. He is sorry that my transplant cannot go ahead but he offers us to call him anytime we need someone to talk to. Isn’t that great. We see Steve Devereux, who is pleased with how things are going for me, putting aside the loss of the transplant. He explains that I will not be eligible for the Revlimid clinical trial as it will not focus on patients who have already been treated with CamPred. However he is hoping that he will be able to negotiate an arrangement with a drug company. He is of the opinion that Revlimid is appropriate for me as a maintenance treatment with the expectation that it would be able to extend the remission period I get from Campath. He would not wish to have to use it is a further treatment once my condition has regressed - whenever that might be. Revlimid is not immune suppressive, on the contrary, if anything, it does the reverse. It comes in tablet form and would not interfere with my normal daily / weekly regime. He feels that time is not particularly pressing and hopes to update me next time we meet. We discuss Mark Jackson’s report and I say how helpful it was for me, enabling me to put a proper perspective on the state of my lungs. Can I go back to work? Yes! I tell him that Omeprazole was a three day miracle cure for my eating disorder, giving me a very enjoyable Christmas lunch. On the state of the congestion in my head, he tells me that I have sinusitis and explains how that has come about. I need nasal drops to help clear the sinus drain holes. However he forgets to give me a prescription! So we buy a nasal spray at the village chemist - hopefully it will be good enough. My weight today is 74.5 kgs, which is up by over a kilo from three weeks ago. I am to see Steve Devereux again in two months.
We are away at 9am on Friday for my appointment with Steve Devereux at Kings. It is school half term this week and we get to our parking place in 65 minutes - a record! We bump into Ron and Linda Chamberlain in the coffee shop area. By coincidence Linda has an appointment this morning as well. Ron says Cobham is still not the same since Eve died. We meet Steve Devereux’s secretary, Judith, as arranged over the telephone. I wanted to meet face to face with her as she has always been really helpful over the phone. She is delightful. We also have a chat with Andre Jansen, the transplant co-ordinator. He is sorry that my transplant cannot go ahead but he offers us to call him anytime we need someone to talk to. Isn’t that great. We see Steve Devereux, who is pleased with how things are going for me, putting aside the loss of the transplant. He explains that I will not be eligible for the Revlimid clinical trial as it will not focus on patients who have already been treated with CamPred. However he is hoping that he will be able to negotiate an arrangement with a drug company. He is of the opinion that Revlimid is appropriate for me as a maintenance treatment with the expectation that it would be able to extend the remission period I get from Campath. He would not wish to have to use it is a further treatment once my condition has regressed - whenever that might be. Revlimid is not immune suppressive, on the contrary, if anything, it does the reverse. It comes in tablet form and would not interfere with my normal daily / weekly regime. He feels that time is not particularly pressing and hopes to update me next time we meet. We discuss Mark Jackson’s report and I say how helpful it was for me, enabling me to put a proper perspective on the state of my lungs. Can I go back to work? Yes! I tell him that Omeprazole was a three day miracle cure for my eating disorder, giving me a very enjoyable Christmas lunch. On the state of the congestion in my head, he tells me that I have sinusitis and explains how that has come about. I need nasal drops to help clear the sinus drain holes. However he forgets to give me a prescription! So we buy a nasal spray at the village chemist - hopefully it will be good enough. My weight today is 74.5 kgs, which is up by over a kilo from three weeks ago. I am to see Steve Devereux again in two months.
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