"never underestimate the power of positive thinking"
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My Health from Autumn 2002
2002 - 2003
I cannot remember when my symptoms actually started, other than sometime during the autumn of 2002 I found I was having night sweats. They didn’t interfere with life at all and so I took little notice of them, putting them down to the male menopause! But I had had a cold in the summer, which left me with a cough that went on for ages. I specifically remember spending the weekend of 6 December in Dublin with my friend Michel, consuming plenty of Guinness and Beamish and having a great time, but sweating buckets in my bed!! We had a big family New Year celebration that year - with a houseful. For many years we had never given up our bedroom to anyone, but on this occasion Tina had decreed that we would sleep on the floor in the lounge. I was in my nephew, Tom’s, sleeping bag, once again sweating buckets. I never did find out if anyone washed that sleeping bag afterwards! I also recall that I had had a cold right through December, which I couldn’t seem to shift. On the weekend of the 28th / 29th I had a slight earache and – typical of me – put my finger in my ear hole to wiggle it about but felt a small lump under my ear with my trailing thumb. I mentioned this to Tina, who knowing a few things medical, said I should see my doctor straight away. I was fortunate to get an early appointment on Monday 30th with my GP, Richard Cook. His immediate response was to take a blood sample for analysis before he could suggest what might be going on – although it was soon apparent that he had a pretty good idea! He asked me to call the surgery the next afternoon to see if they had a result, but by 5pm that same day he was back to me on the telephone asking me to come in to see him at 8.50am the next day (New Year’s Eve) before his surgery began. “Richard, do I have to start worrying?”. “No, I don’t think so.” “Does Tina have to start worrying?” “Well, perhaps it would be a good idea if she came along too.” I still recall the conversation as if it was 10 minutes ago. Imagine the affect of this on everyone, let alone Tina and me, particularly as our daughter, Anna, had taken Richard’s call in the first place. So I felt as if we were characters in a black comedy sleeping on our lounge floor with such serious impending news about to be delivered.
“I am afraid you have a condition known as Chronic Lymphocytic Leukaemia” was Richard’s news the next morning. He briefly explained what this meant, but I have no recollection of the detail. I do remember checking that I could still drink alcohol, but that it would probably have greater effect in the future! He made an immediate referral to the consultant haematologist at our local general hospital, the Princess Royal, at Haywards Heath and I should expect to receive contact soon. In fact I had a telephone call on Thursday 2nd January from the secretary of said consultant, Dr Paul Hill, with an appointment for the following Tuesday 7th January. If that wasn’t fast, I don’t know what is. No NHS waiting lists for CLL in mid Sussex. In that week of my diagnosis I took a couple of days off work sick, but it was more like “stress related compassionate time off” for us to try to come to terms with what was happening, rather than actual “sickness”, as I did not feel at all ill. Nonetheless, with all this stuff buzzing in our heads, we were still determined to see “Lord of the Rings - the Two Towers” wide-screen at our local flea pit !! But most pressing, was what do we do about our 18 day Kenyan safari and beach “holiday of a lifetime”, which we were supposed to be taking from 18th January? “That looks like a ‘no no’ – but wait until you see Dr Hill”, was Richard Cook’s advice.
7th January and Tina and I saw Dr Paul Hill at the Princess Royal Hospital (PRH – from now on). I had blood tests and my first ever bone marrow biopsy – not the most pleasant experience I have had in my life! He talked us through a few things – again I have limited recollection of the detail, other than his telling us that treatment could not produce a cure, rather that the aim was to get control of the disease. He did not tell us what my blood counts were and “Yes” – we would have to cancel our Kenya holiday. But maybe there would be a window in the next few weeks for a week away somewhere else, as I needed to have an x-ray and a CT scan before my treatment could be started. Sure enough, a week appeared and we had a brilliant break on the island of La Gomera, in the Canaries – Anna’s suggestion. So good was it that we have been going back every year for a week at the same time to the same superb hotel !!
Meanwhile life still goes on. Tina and I continued working; she 4 days a week, managing the “front of house” at the very busy Day Lewis Chemist shop in Hassocks; me alternating 3 or 4 days – because of my 27 hours a week regime, as the Partnerships Manager with Sussex Police Community Safety Department. My diary reminds me that the day after seeing Paul Hill – amazingly when I look back on it - I drove up to Borough Green to go with Tina’s uncle, George, for his quarterly morning appointment with his Parkinsons’ consultant at Sevenoaks Hospital - I had been his “Power of Attorney”, personal adviser, carer and medical advocate for the past two years. This was followed at midday by an appointment with a prospective buyer of George’s bungalow, which I was also keeping a watching brief over since George’s admission into his nursing home 15 months previously. I had willingly taken on this family responsibility to relieve my mother-in-law, Eve, of any further anxiety than she already had over her younger brother’s health. Because I worked part-time, I had one or two days a week available and George was one of the most deserving of people to help out. I continued to help George in this and other ways over the next 4 years, whilst his Parkinsons condition worsened progressively and until sadly he died in May 2006.
I started my chemotherapy on 4th February with 14 days of 10mgs of Chlorambucil tablets (plus 300mgs of Allopurinol daily) and a follow-up appointment in 4 weeks time. By this time the glands in my armpits had grown to a considerable size, such that we had named them Henry I and Henry II – Henry I in my right armpit being the larger. My weight on 3rd February was 79 kgs (12st 6lbs in old currency). I had not weighed myself for ages but knew that I had been somewhere in the region of 13st 12lbs for several years – well above my younger “fighting” weight of 10st 7lbs with which I had lived through my 20s, 30s and most of my 40s. I had been meaning to do some serious exercise, stop the weekday evening can – or two - of beer and hopefully get rid of a stone. In those 4 weeks of chemotherapy, I carried on working as before, but the days became increasingly wearying as the month progressed. I overstretched myself doing a piece of basic DIY and put myself out of action for a weekend with strained neck and shoulder muscles, heavy night sweats and very little sleep. On the other hand we carried on with our normal social life almost as if nothing was wrong.
The other mishap at this time was for me to pick up a cold – probably at work – around 22nd February. This was to hang around me for the next 2 months and really drag me down, with horrendous night sweats, energy loss, loss of taste and the need to sleep afternoons as well as long nights. I managed to keep going with my work for much of the time, doing some at home and the occasional short day. This episode was not helped by our having Tina’s mother to stay with us following her hospitalisation with serious blood circulation problems. Four days after her arrival here she had a heart attack – fortunately a mild one. So having come for a week, she stayed with us for four! Whilst I was very fond of Eve, eventually it became intolerable with my relative misery having no privacy and frustrations mounting. I became awful to live with. Fortunately for me, in the middle of all this I had a long chat with a work colleague who I had just been told had had leukaemia when he was in his early twenties and survived. Mick’s Acute Lymphocytic Leukaemia story put my current situation into complete perspective and sorted me out !
Meanwhile our next clinic appointment on 3rd March was with Paul Hill’s locum, who commented that I had responded well to the first session of treatment and that I only needed to have 11 days worth of Chlorambucil this time. My white cell count was 47.5 and Haemoglobin 7.9. She also told us that I had had a very high level of disease when I initially presented in early January, with a white cell count of 199. This was the first time we had been made aware how serious my situation had been. I was glad to hear both pieces of news together and recognised that Paul Hill had made a judgement to reveal difficult news gradually. I may comment a little more on this later – including giving considered answers to these questions: Is all information helpful? Is information overload helpful? Is early prognosis helpful? Is ignorance bliss? For example, prompted by a very good colleague at work, who thought he was being helpful, I looked up some sites on the internet. The very informative Leukaemia Research Fund site – complete with all the appearance of authority and knowledge – told me that, given my symptoms as I understood them, under the Rai measurement system for CLL, my median survival span was 7 years and under the Binet System it was 5 years. Was I, at 59 years of age, to believe that I would be pushing up daisies so soon? Was I to take any notice, do anything about it, make plans openly or surreptitiously? I decided to ignore it, let things take their own path, put my fate in God’s hands as it were and – most emphatically – not tell Tina. Time will tell / has told if that was the right thing to do.
At my next two clinics on 10th March and 7th April my white cell counts were 32.1 and 8.0 respectively – excellent news. The remainder of my treatment year saw my white cells generally hovering between 4.4 and 7.2 but included two separate four week periods with my neutrophils too low to have chemotherapy and my having to troop into the bloods room at the hospital every week for a test, fighting with the scores of warfarin checks for a place in the queue! I also had to have three blood transfusions, in March, May and June – of 3, 3 and 2 units respectively. My weight stayed around 77 to 81 kgs. and the “Henrys” in my armpits were still there. Overall I had 6 treatments of chlorambucil stretched between 3rd February and 2nd October with my final consultant’s clinic on 27th November 2003. I was also troubled with a few nasal cold sores as well as the odd cold, although fortunately not affecting me anything like the February one did.
Despite the various ups and downs of my treatment, low haemoglobin and those occasional colds, we managed a two week holiday in Amorgos and weekends and long weekends away to Southwold, Madrid, Normandy, Provence and Barcelona – to celebrate my 60th birthday – as well as shopping trips to Calais and full work, pastime and social diaries. I had to miss our no.1 granddaughter, Ella’s, 2nd birthday party as chicken pox was about, but not the immediate celebration of the birth of our no.2 granddaughter, Lily.
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