Friday 9th March 2007
Took a little walk to the village to buy flowers and the newspaper and get some fresh air. Then caught up with my log before Tina came to drive me to the RSCH for my 11.30am appointment. All done by 1.15pm and away with large bag of needles, syringes and swabs, etc. for self injecting my Campath for the next 3 weeks – but forgot to ask for the surgical gloves! My weight to days is 79kgs. My blood counts are - Wbc: 4.30; Hbn: 9.4; Plt: 178; Neut: 4.20. Fairly restful afternoon, after doing my Campath, despite several phone calls and text messages!! Tried a Guinness before dinner to join Tina with her G & T, but no good. Taste was gone – sadly! Slept on the settee from 10pm to gone midnight, forgot my Aciclovir again! My legs are up again with fluid retention!
Breakfast: Orange juice; yoghurt, cereal, mango, honey; water.
Lunch: Lentil and ham soup; apricot fool.
Dinner: Roasted vegetables - peppers, courgettes, onions, celery(good) and couscous; bread and butter pudding (surprisingly nice!).
Thursday 8th March 2007
I have decided to take the Metoclopramide at least every morning before breakfast as a nausea preventative - my stomach is not feeling too special nowadays. However, the fluid retention in my legs has ceased, so I have stopped the Furosimide as of today – good news!
Took the 10am bus to Brighton as I wanted to see Dr Paul Hill whilst he was having his weekly RSCH clinic – if only for a catch-up chat. He checked me over and found a very small gland “up” in my right arm pit, otherwise I was ok. Discussed the options re the Pentamidine “refresher” next Tuesday or reverting to Septrin and Ciprofloxacin depending on my white cell and neutrophil counts. He would check the protocol. I then went downtown shopping, having a sparse lunch in the sun in Churchill Square, more to the benefit of the pigeons as I couldn’t manage the bread! Back to the RSCH for 2.30pm and meeting the delightful and very efficient snr. Charge Nurse Laura Pena (from Valladolid!) I was on my Methylpred. by 3pm and all finished at 4.15pm. My weight today – 79.5kgs. My blood results I will get tomorrow, but I will record here:-
Wbc: 4.30; Hbn: 9.1; Plt: 165; Neut: 4.20
Picked up today by Cath and home at 5.30pm. Phone calls either side of dinner, including one cancelling the rugby at Twickenham with Richard. It just does not make sense trying to do something like that – however I might want to go – when I know I would not be up to the journey or the sitting around in the cold. A shame, but it is the right decision. I will have to watch it on TV instead. Bed at 9pm again and slept well.
Breakfast: Mango and passion fruit juice; yoghurt, cereal, mango, honey; toast, marmalade; green tea with lemon.
Lunch: Ham sandwiches – only managed the ham and fed the pigeons with the bread!; apricot fool.; banana.
Dinner: Avocado pear; Salmon fillet (just about managed) couscous with sun dried tomatoes, asparagus and peas (couldn’t eat it all); banana.
Wednesday 7th March 2007
Slept well through the night despite my long evening doze. 10.30 appointment at RSCH and the Methylpred was started at 11.10am. My weight today is 79kgs and my blood counts are- Wbc: 5.80; Hbn: 9.5; Plt: 178; Neut: 5.70. All going up – a bit of a surprise! But my legs are definitely down - and keeping down all day. Self injected my Campath after lunch.
I had asked Santa to check on the delivery of the Campath to RSCH from Kings. By afternoon Santa had no joy with her own pharmacy, rang some numbers I gave her for Kings and found the haematology pharmacist, who was sitting on it waiting for someone to tell her what to do with it!! Anyway it will be with me by courier on Monday. Feeling tired by 5pm so a bit of a lie down on the settee; also feeling funny in the stomach although ok in myself – if that makes any sense. Bed at 9pm and slept! Managed to wake up at 2.25pm for my late evening Corsodyl, Nystatin and Aciclovir! Then again at 5.45am for my Itroconozole. Ugh!
Breakfast: Yoghurt, cereal, mango, honey; toast, marmalade; green tea with lemon.
Lunch: Chilli bean soup with toast croutons; ham sandwiches – only half; yoghurt, mango and ginger.
Dinner: Avocado pear; pork fillet (just about managed) couscous with sun dried tomatoes, sugarsnap peas (couldn’t eat it all); lemon cake (sort of ok!).
Tuesday 6th March 2007
Had a good breakfast with a Metoclopramide tablet to be on the safe side. Spent the morning on emails, etc. as my RSCH appointment was at 1.30pm. I am given my blood count results for yesterday. They are - Wbc: 0.8; Hbn: 8.6; Plt: 138; Neut: 0.8. – which makes me neutropenic already! I have another blood sample taken as they don’t seem right and the results are very different. So I have yet another sample taken to be sure. These come out very similar to the 2nd set and are - Wbc: 3.8; Hbn: 9.0; Plt: 171; Neut: 3.70. So I am not neutropenic after all !! My weight today is 79.5kgs.
No hot chocolate today – didn’t feel I could take it. Involuntary hiccoughs started just like the last time! Slept on the settee from 8pm to 10.45pm.
Breakfast: Yoghurt, cereal, banana, honey; toast, marmalade; green tea with lemon.
Lunch: Ham sandwiches; yoghurt, honey and ginger; banana.
Dinner: Avocado pear; smoked haddock, wild rice, tomatoes, peas and beans; yoghurt, honey and ginger.
Monday 5th March 2007
Today was the start of my Methylprednisolone treatment at the RSCH at Brighton. We left home at 8.05am and had a much easier drive than I expected. Found the special Cancer Car Park right by the hospital and were parked in at 8.35am. It costs £1 per day – really good. We were met in the nice new – and quiet - Haemotology Unit by ch/nurse Santa, who looked after me very well throughout the morning. A slight delay while she found a doctor to prescribe the Methylprednisolone, but blood samples taken anyway, although I didn’t get the results until Tuesday. Also booked my appointment times for the rest of the week, which vary every day, plus a time and day for the Pentamidine nebuliser in just over a week’s time. My weight today is 80.0kgs.
So 1 hour of Methylpred. started about 10.30am – I get 2 grams in 100 grams of saline solution - followed by a 15 minute flush and we were away just before midday. Felt tired as the drip was delivering and had a little doze I think. Once home, Tina was soon away to work and I self injected my Campath. After lunch I sat in the conservatory with the laptop, feeling slightly tired, but otherwise so obvious effects. However, my afternoon hot chocolate didn’t go down so well as usual and after taking my Itroconozole I felt slightly nauseous. About 5.30pm I lay on the settee and slept. Tina came come from work about 6.15pm and I still slept on until 8pm. My stomach felt funny, I was not hungry, so no dinner. At 10.30pm after taking my Corsodyl mouthwash and Nystatin I had a sip of water, felt decidedly nauseous and took a Metoclopramide tablet. I slept well.
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit, banana, honey; hot chocolate.
Lunch: Chilli bean soup; ham sandwich; banana.
Dinner: Nothing
Sunday 11 March 2007
Saturday 10 March 2007
A good weekend
Sunday 4th March 2007
Saw Anna, Nick and Eva off to France at 7am, then 10.30am Mass at St Edward’s as the rain and wind started. Spent a leisurely remainder of the morning, with Linda Bell calling about 12.30pm for a chat with Tina. Read a very interesting article in the Observer Sport monthly supplement about the France’s most capped international footballer, Lilian Thuram (super hero of the ’98 World Cup) and the stand he is taking regarding racism in French politics and the plight of the black and Arab youngsters in Les Banlieues. I recall he spoke out strongly against Interior Minister - and now presidential hopeful - Nicolas Sarkozy over his “scum” remarks during the Paris riots of 2005. Thuram would be a breath of fresh air in French politics, wouldn’t he?? Well enough of politics and back to web log typing after lunch.
Breakfast: Orange juice; yoghurt, cereal, banana, honey; toast and marmalade; green tea.
Lunch: Lentil and ham soup; an orange and an Eat Natural bar.
Dinner: Stir fry chicken and vegetables (nice); rhubarb yoghurt.
Saturday 3rd March 2007
Feeling really good after yesterday’s great news. Quite a busy day with John Carr fixing the new TV aerial and trying to keep away from me because he had a chest infection - Aaaagh!! – then up to Bill and Jan Swallow’s for a late morning coffee – or in my case hot chocolate with 72% chocolate supplement! Joined by Anna and Eva. Then in the afternoon the new HD – ready TV arrived complete with hard drive DVD recorder. That was followed by a chaotic few hours with Matthew, Charrise & co here to join us with Anna & co.!! Noisy and lovely!!!! Emailed Marva and Peter in LA with all our latest news. Guess what was the first TV programme we recorded on the hard drive – Nothing less than Harry Hill’s TV Burp!!!
Breakfast: Orange juice; yoghurt, cereal, mango, honey; toast and marmalade; green tea.
Lunch: Lentil and ham soup; Marmite on toast (I am told off for too much Marmite – but I cannot taste it otherwise!).
Dinner: Spanish pork casserole, couscous and peas; chocolate ice cream.
Saw Anna, Nick and Eva off to France at 7am, then 10.30am Mass at St Edward’s as the rain and wind started. Spent a leisurely remainder of the morning, with Linda Bell calling about 12.30pm for a chat with Tina. Read a very interesting article in the Observer Sport monthly supplement about the France’s most capped international footballer, Lilian Thuram (super hero of the ’98 World Cup) and the stand he is taking regarding racism in French politics and the plight of the black and Arab youngsters in Les Banlieues. I recall he spoke out strongly against Interior Minister - and now presidential hopeful - Nicolas Sarkozy over his “scum” remarks during the Paris riots of 2005. Thuram would be a breath of fresh air in French politics, wouldn’t he?? Well enough of politics and back to web log typing after lunch.
Breakfast: Orange juice; yoghurt, cereal, banana, honey; toast and marmalade; green tea.
Lunch: Lentil and ham soup; an orange and an Eat Natural bar.
Dinner: Stir fry chicken and vegetables (nice); rhubarb yoghurt.
Saturday 3rd March 2007
Feeling really good after yesterday’s great news. Quite a busy day with John Carr fixing the new TV aerial and trying to keep away from me because he had a chest infection - Aaaagh!! – then up to Bill and Jan Swallow’s for a late morning coffee – or in my case hot chocolate with 72% chocolate supplement! Joined by Anna and Eva. Then in the afternoon the new HD – ready TV arrived complete with hard drive DVD recorder. That was followed by a chaotic few hours with Matthew, Charrise & co here to join us with Anna & co.!! Noisy and lovely!!!! Emailed Marva and Peter in LA with all our latest news. Guess what was the first TV programme we recorded on the hard drive – Nothing less than Harry Hill’s TV Burp!!!
Breakfast: Orange juice; yoghurt, cereal, mango, honey; toast and marmalade; green tea.
Lunch: Lentil and ham soup; Marmite on toast (I am told off for too much Marmite – but I cannot taste it otherwise!).
Dinner: Spanish pork casserole, couscous and peas; chocolate ice cream.
Farewell to the Chemotherapy Room at Kings
Friday 2nd March 2007
Today was real “red letter” day. My clinic with Dr Steve Devereux was all positive; blood counts all good, with haemoglobin and platelets both up. My weight was 80.8kgs; Wbc: 1.74; Hbn: 9.9; Plt: 233; Neut: 1.70. The data over the past week or so has been consistently good. This means that the treatment programme will be the full 16 weeks, to get the maximum benefit out of it. If I were not responding well then they would stop it after 8 weeks. On top of that, he confirmed that I no longer have to travel to London for treatment and start the Methylprednisolone at Brighton on Monday (for five days). I am to self inject the second drug (Campath) sub-cutaneously at home 3 days a week also from Monday. In fact I started doing it this afternoon – just two minutes instead of a 3 hour intra-veinous drip – having been run through it by Mithu, one of the nurses. What’s a tiny stab in the thigh between friends?? I am even entrusted with taking the Clinical Trial Protocol papers to Brighton for Monday - and it saves postage as well(!!)
So the ongoing programme is Methylprednisolone for 5 days every four weeks coupled with
Campath 3 times weekly, projected to finish on 25th May. In the interim, I will have weekly blood tests and CMV checks locally, either at RSCH or PRH. I also need to have another pentamidine nebuliser by Friday 16th locally if possible, otherwise it’s back to Kings for it. That is unless my neutrophils have gone up over 2.0, in which case I resume Septrin and Ciprofloxacine instead. I then see Steve Devereux in 4 weeks time and, a few days before that, have a bone marrow sample and biopsy taken, plus a CT scan. I guess he will want to see me every 4 weeks thereafter, with probably another bone marrow sample / biopsy and CT scan at the end of the treatment period. Hopefully no more than that, as the bone marrow thing is most unpleasant!! All this means that the earliest date for a bone marrow transplant is looking like the first weeks in July.
We had the company of Jim Furse from about 10.45am this morning – Kings is a 25 minute walk from where he lives – and later Tessa called in as well – so that was nice for our last day! After the Campath injection and a 20 minute wait to ensure no reaction, we left Kings at 3pm – the earliest we have ever managed to get away! Said our farewells to the team that had looked after me so well over the previous 4 weeks – well at least those who were around this afternoon! – and left them some nice chocolates. We were home comfortably by 4.30pm.
One of the almost subliminal reminiscences of these past 4 weeks travelling up to London has been that of some of the songs that have been regularly played on Radio 2 as we have been driving up or even before leaving – due to our listening out for the traffic news mainly. These have been “Grace Kelly” by Mika, “Ruby” by the Kaiser Chiefs and “Shine” by the recently re-formed Take That – minus Robbie Williams. These were then repeated on “Heart Radio” – very quietly – in the chemo room. It’s funny how music can be remind you of places and situations and those 3 songs certainly will for me!
Breakfast: Orange juice; yoghurt, cereal, mango; toast and marmalade; hot chocolate.
Lunch: Ham sandwiches, tomato soup; yoghurt, honey and ginger.
Dinner: Lentil and ham soup; chargrilled salmon, potatoes, peas and asparagus; chocolate ice cream.
Thursday 1st March 2007
A slightly different start day with a house full of baby! Legs seem ok but still put on the stockings as I was unsure how much time I would have my feet up properly. Turned out not to be all that much. Emailed a reply to yet another lovely little email from Marva, which coincided with the arrival of another “best wishes” card from her in the post. Thanked Terry for doing more pruning in the front garden yesterday while we were in London. In no time at all the morning had gone! Simone and Dennis visited at lunchtime and we had interesting chats about the work the old department is now being asked to do in respect of Neighbourhood Policing. Managed to get on with my blog about 3pm – still cannot get to it any earlier!! Dinner with Anna and Nick and a gurgling Eva, as Tina was out for something to eat with Sue, then a hurried exit to meet Steve Pitt at the smoke free New Inn for my first drop of proper draught beer – and Harveys at that! – since well before I went into Kings in late January. I was slightly trepidatious - what with my taste buds still awry in places; but it was like nectar!! It also got rid of a slightly muzzy head that threatened my going out.
Breakfast: Orange juice; yoghurt, cereal, mango, honey; toast and marmalade; green tea.
Lunch: Lentil and ham soup; ham sandwiches.
Dinner: Lentil and ham soup; giant pork chop, roasted new potatoes, peas and asparagus.
Wednesday 28th February 2007
Legs not too bad and left off the stockings. Drove the car to Denmark Hill myself. Blood counts down again – except Hbn and platelets - but still good and no problem. Wbc: 1.75; Hbn: 9.7; Plt: 229; Neuts: 1.69; So no blood transfusion needed. Wt: 80.9kgs. (up 1.7kgs from Monday) There seems no rhyme nor reason to the yo-yo that is my weight record these past few days!!
Had some interesting discussions with Dr Lallendra about what treatment I was due to have today. Was today the start of week 5 of the programme and therefore the first day of the next session of Methylprednisolone and the first day of sub-cutaneous Campath? If that was to be the case, then we would be running the Methylpred right through the weekend!! “No thank you”, says I, invoking Steve Devereux’s stated plan for the Methylpred to be done at Brighton and my self injecting the Campath to start on Monday. Enquiries with the Royal Sussex County Hospital (RSCH) brought the response that I would have to be an in-patient for them to administer Methylpred and “No, they couldn’t do that anyway.” Then a further enquiry with them had a completely different answer and a fixed appointment for 9am Monday morning – amazing!! So eventually the Campath started at 1.30pm for the usual 3 hours, with no allergic response. We were away at 5pm and home at 6.50pm. to await the arrival of Anna, Nick and Eva from bonnie Scotland!! Incidentally, Tina is an heiress, having received her letter from George’s executors about her share of his will, spelling and arithmetical errors
included! “Disgusted of Hurstpierpoint” letter soon followed berating the unprofessional way the solicitors (name withheld – but available upon request!) communicate with parties to their business. Copies send to other family members.
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit; toast and marmalade; hot chocolate.
Lunch: Avocado pear; ham sandwiches, crisps and tomato soup; yoghurt, honey and ginger, banana.
Dinner: Lentil and ham soup; pizza (pretty good); yoghurt, stem ginger and honey.
Tuesday 27th February 2007
Legs quite good and Mr Blobby now gone (!) but decided to put on the compression stockings as I would be out during the morning. Spent over an hour at Bewarms signing up for the TV purchase – computers! Eventually got on to the blog by 12 midday. Picked up Tina from work at 5.30pm via Michel’s and a present of 2 bottles of high octane Nigerian-brewed Guinness!
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit and mango; toast and marmalade; hot chocolate.
Lunch: Vegetable soup (ok); cheese on toast (no taste); rhubarb fool.
Dinner: Vegetable soup; lamb chops (ok), roasted new potatoes, asparagus and French beans (no taste); ice cream (vanilla, ginger and chocolate chip).
Monday 26th February 2007
Legs down quite a bit, so no stocking today and see how we go. To Kings with Keith and Wendy in the luxury of Keith’s BMW! Blood counts down – except platelets - but still good Wbc: 2.23; Hbn: 8.3; Plt: 182; Neuts: 2.12; Wt: 79.2kgs. (down 2.5 kgs from Friday – fluid loss yesterday?) Campath started 12.55pm for 3 hours, dozed a bit because of the piriton again, then had 1 unit of blood. No allergic reaction! This took me to 6.20pm by which time K & W had returned from their shopping day in Harrods. Home at 8pm.
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit and mango; toast and marmalade; hot chocolate.
Lunch: Avocado pear; ham sandwiches, crisps and tomato soup; yoghurt, honey and ginger; banana.
Dinner: Tomato and goats cheese tart; ice cream (vanilla, ginger and chocolate chip); hot chocolate.
Today was real “red letter” day. My clinic with Dr Steve Devereux was all positive; blood counts all good, with haemoglobin and platelets both up. My weight was 80.8kgs; Wbc: 1.74; Hbn: 9.9; Plt: 233; Neut: 1.70. The data over the past week or so has been consistently good. This means that the treatment programme will be the full 16 weeks, to get the maximum benefit out of it. If I were not responding well then they would stop it after 8 weeks. On top of that, he confirmed that I no longer have to travel to London for treatment and start the Methylprednisolone at Brighton on Monday (for five days). I am to self inject the second drug (Campath) sub-cutaneously at home 3 days a week also from Monday. In fact I started doing it this afternoon – just two minutes instead of a 3 hour intra-veinous drip – having been run through it by Mithu, one of the nurses. What’s a tiny stab in the thigh between friends?? I am even entrusted with taking the Clinical Trial Protocol papers to Brighton for Monday - and it saves postage as well(!!)
So the ongoing programme is Methylprednisolone for 5 days every four weeks coupled with
Campath 3 times weekly, projected to finish on 25th May. In the interim, I will have weekly blood tests and CMV checks locally, either at RSCH or PRH. I also need to have another pentamidine nebuliser by Friday 16th locally if possible, otherwise it’s back to Kings for it. That is unless my neutrophils have gone up over 2.0, in which case I resume Septrin and Ciprofloxacine instead. I then see Steve Devereux in 4 weeks time and, a few days before that, have a bone marrow sample and biopsy taken, plus a CT scan. I guess he will want to see me every 4 weeks thereafter, with probably another bone marrow sample / biopsy and CT scan at the end of the treatment period. Hopefully no more than that, as the bone marrow thing is most unpleasant!! All this means that the earliest date for a bone marrow transplant is looking like the first weeks in July.
We had the company of Jim Furse from about 10.45am this morning – Kings is a 25 minute walk from where he lives – and later Tessa called in as well – so that was nice for our last day! After the Campath injection and a 20 minute wait to ensure no reaction, we left Kings at 3pm – the earliest we have ever managed to get away! Said our farewells to the team that had looked after me so well over the previous 4 weeks – well at least those who were around this afternoon! – and left them some nice chocolates. We were home comfortably by 4.30pm.
One of the almost subliminal reminiscences of these past 4 weeks travelling up to London has been that of some of the songs that have been regularly played on Radio 2 as we have been driving up or even before leaving – due to our listening out for the traffic news mainly. These have been “Grace Kelly” by Mika, “Ruby” by the Kaiser Chiefs and “Shine” by the recently re-formed Take That – minus Robbie Williams. These were then repeated on “Heart Radio” – very quietly – in the chemo room. It’s funny how music can be remind you of places and situations and those 3 songs certainly will for me!
Breakfast: Orange juice; yoghurt, cereal, mango; toast and marmalade; hot chocolate.
Lunch: Ham sandwiches, tomato soup; yoghurt, honey and ginger.
Dinner: Lentil and ham soup; chargrilled salmon, potatoes, peas and asparagus; chocolate ice cream.
Thursday 1st March 2007
A slightly different start day with a house full of baby! Legs seem ok but still put on the stockings as I was unsure how much time I would have my feet up properly. Turned out not to be all that much. Emailed a reply to yet another lovely little email from Marva, which coincided with the arrival of another “best wishes” card from her in the post. Thanked Terry for doing more pruning in the front garden yesterday while we were in London. In no time at all the morning had gone! Simone and Dennis visited at lunchtime and we had interesting chats about the work the old department is now being asked to do in respect of Neighbourhood Policing. Managed to get on with my blog about 3pm – still cannot get to it any earlier!! Dinner with Anna and Nick and a gurgling Eva, as Tina was out for something to eat with Sue, then a hurried exit to meet Steve Pitt at the smoke free New Inn for my first drop of proper draught beer – and Harveys at that! – since well before I went into Kings in late January. I was slightly trepidatious - what with my taste buds still awry in places; but it was like nectar!! It also got rid of a slightly muzzy head that threatened my going out.
Breakfast: Orange juice; yoghurt, cereal, mango, honey; toast and marmalade; green tea.
Lunch: Lentil and ham soup; ham sandwiches.
Dinner: Lentil and ham soup; giant pork chop, roasted new potatoes, peas and asparagus.
Wednesday 28th February 2007
Legs not too bad and left off the stockings. Drove the car to Denmark Hill myself. Blood counts down again – except Hbn and platelets - but still good and no problem. Wbc: 1.75; Hbn: 9.7; Plt: 229; Neuts: 1.69; So no blood transfusion needed. Wt: 80.9kgs. (up 1.7kgs from Monday) There seems no rhyme nor reason to the yo-yo that is my weight record these past few days!!
Had some interesting discussions with Dr Lallendra about what treatment I was due to have today. Was today the start of week 5 of the programme and therefore the first day of the next session of Methylprednisolone and the first day of sub-cutaneous Campath? If that was to be the case, then we would be running the Methylpred right through the weekend!! “No thank you”, says I, invoking Steve Devereux’s stated plan for the Methylpred to be done at Brighton and my self injecting the Campath to start on Monday. Enquiries with the Royal Sussex County Hospital (RSCH) brought the response that I would have to be an in-patient for them to administer Methylpred and “No, they couldn’t do that anyway.” Then a further enquiry with them had a completely different answer and a fixed appointment for 9am Monday morning – amazing!! So eventually the Campath started at 1.30pm for the usual 3 hours, with no allergic response. We were away at 5pm and home at 6.50pm. to await the arrival of Anna, Nick and Eva from bonnie Scotland!! Incidentally, Tina is an heiress, having received her letter from George’s executors about her share of his will, spelling and arithmetical errors
included! “Disgusted of Hurstpierpoint” letter soon followed berating the unprofessional way the solicitors (name withheld – but available upon request!) communicate with parties to their business. Copies send to other family members.
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit; toast and marmalade; hot chocolate.
Lunch: Avocado pear; ham sandwiches, crisps and tomato soup; yoghurt, honey and ginger, banana.
Dinner: Lentil and ham soup; pizza (pretty good); yoghurt, stem ginger and honey.
Tuesday 27th February 2007
Legs quite good and Mr Blobby now gone (!) but decided to put on the compression stockings as I would be out during the morning. Spent over an hour at Bewarms signing up for the TV purchase – computers! Eventually got on to the blog by 12 midday. Picked up Tina from work at 5.30pm via Michel’s and a present of 2 bottles of high octane Nigerian-brewed Guinness!
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit and mango; toast and marmalade; hot chocolate.
Lunch: Vegetable soup (ok); cheese on toast (no taste); rhubarb fool.
Dinner: Vegetable soup; lamb chops (ok), roasted new potatoes, asparagus and French beans (no taste); ice cream (vanilla, ginger and chocolate chip).
Monday 26th February 2007
Legs down quite a bit, so no stocking today and see how we go. To Kings with Keith and Wendy in the luxury of Keith’s BMW! Blood counts down – except platelets - but still good Wbc: 2.23; Hbn: 8.3; Plt: 182; Neuts: 2.12; Wt: 79.2kgs. (down 2.5 kgs from Friday – fluid loss yesterday?) Campath started 12.55pm for 3 hours, dozed a bit because of the piriton again, then had 1 unit of blood. No allergic reaction! This took me to 6.20pm by which time K & W had returned from their shopping day in Harrods. Home at 8pm.
Breakfast: Orange juice; yoghurt, cereal, kiwi fruit and mango; toast and marmalade; hot chocolate.
Lunch: Avocado pear; ham sandwiches, crisps and tomato soup; yoghurt, honey and ginger; banana.
Dinner: Tomato and goats cheese tart; ice cream (vanilla, ginger and chocolate chip); hot chocolate.
Campath continued - Out of Neutropenia
Sunday 25th February 2007
Up for a bit of breakfast before 8.30am Mass then finished off afterwards. Feeling good, but legs up, so compression stockings on all day. To Matthew and Charrise for a chaotic lunch with the girls and Roni and back by 4.30pm. A lazy afternoon and evening.
Breakfast: Orange juice; yoghurt, cereal and mango; toast and marmalade; hot chocolate.
Lunch: Lasagne and salad (good) with garlic bread (no taste); Tina’s meringues (great – as always!).
Tea: Can’t remember!
Saturday 24th February 2007
A lazy day all round, after signing up for the C4. Phone calls and did my blog, then Rugby – England slaughtered by the Irish at Croke Park, followed by France beating Wales. Tina to Linda Bell’s for a drink and chat. Felt good all day, but my legs were up much more than usual despite being rested.
Breakfast: yoghurt, raspberries and honey, toast and marmalade, green tea
Lunch: Cheese on toast (tasteless – even with sauce and Tabasco)
Dinner: Chicken tikka marsala, rice and papadums (OK except the papadums were tasteless)
Friday 23rd February 2007
Legs seemed better, no rash and throat / head better. Up to KCH with Matthew early in case I needed a transfusion. Blood counts superb! Wbc: 2.44; Hbn: 9.2; Plt: 125; Neuts: 2.39 – unbelievable! Wt: 82.7kgs. Despite early arrival, relative chaos – staff shortages - in chemo room meant Campath didn’t start until 1.30pm. Visit from Mary Alston from work – which was great. Slept a lot through the Campath – the most I have ever done – about an hour in one stretch! Much to Matthew’s amusement. Woke with a proper head sweat! Usual allergic reaction at the end, given the usual anti-stuff and allowed to leave without lengthy observations as this has become a regular thing. Home at 7.30pm. Unfortunately a lot our tension surfaced this eveing whilst Matthew was with us. He acted as a wise councellor – and did very well despite his own emotions being expressed as well.
Breakfast: fruit juice; yoghurt, honey, raspberries and cereal; toast and marmalade; green tea.
Lunch: Ham sandwich, apricot fool, banana, biscuits.
Dinner: Chilli bean soup; pork steaks, new potatoes roasted and roasted vegetables (delicious); yoghurt, raspberries and honey.
Thursday 22nd February 2007
No night sweats, but feet and Mr Blobby up more than recent mornings. Took 2 x 20mg flusemide tablets. Visits from Derek O. and Phil Mears took me from 10am through 3.30pm with a break for lunch. BUT – I have a slightly tickly throat and by 5pm a slight headache. Temperature of 36.1c; Took two paracetomol. Fortunately this came to nothing. Legs swelled up.
Breakfast: fruit juice; yoghurt, honey and mango; toast and marmalade; ordinary tea with milk (no good);
Lunch: red lentil and pancetta soup; ham sandwiches; rhubarb yoghurt;
Dinner: Chilli bean soup; pan fried salmon, potatoes and asparagus; yoghurt, honey and mango.
Wednesday 21st February 2007
Head sweats for the second night running. Legs down but allergy rash on waist and thighs.
Also noticed that a spot on my right calf, which I have had for about 2-3 days had grown and was now reddening – must tell them about this. Could it be the start of an ulcer? Free parking in pub car park (!) after very easy run up. Blood counts excellent! Wbc: 1.58; Hbn: 8.7; Plt: 75; Neuts: 1.52 (WOW!). (Dr) Austin advised keep an eye on the red spot and marked it with a pen. Also I stop Ciprofloxacin and the Spironolactone now that the fluid on my legs is going down. My Campath ran from 12.40pm for 3 hours, but then an allergic reaction appeared on my wrist, thighs, chest and stomach, so more Hydrocortisone and piriton and a wait until 5.15pm before we could leave. Charge Nurse Eunice forgot to give me GCSF, so I did it myself when I got home.
Breakfast: fruit juice; yoghurt, honey and mango; toast and marmalade; green tea and lemon;
Lunch: half an avocado pear; ham sandwiches; biscuits; banana;
Dinner: red lentil and pancetta soup; Pinky Lilani’s chicken curry (limited taste) with flat peas (tasty); yoghurt, mango and honey.
Tuesday 20th February 2007
Woke to find that my swollen legs had virtually gone(!!) and did not feel the need to wear the compression stockings. No reaction to the Campath at all and am feeling good. Dibbled around all morning, phone calls with Peter and Daphne, read a load of information sent to me from the CLL Support Association. Eventually got down to some typing about 4.30pm – I really must try to start earlier! Allergy rash came up in the evening on thighs and lower back – not a problem but forgot I had some piriton I could have taken. Feet swollen by 8pm.
Breakfast: fruit juice; yoghurt, honey and pineapple; toast and marmalade; green tea and lemon;
Lunch: Lentil and ham soup, sardines and tomatoes on toast, yoghurt and honey;
Dinner: Guinness, smoked haddock, asparagus and “roasted” new potatoes (nice – but little flavour from the haddock unfortunately), yoghurt with honey and mango.
Monday 19th February 2007
Another easy drive up – half term? Blood counts good – Wbc: 0.86; Neutrophils 0.74. My weight was 81.3kg (up 0.5kg). With the neutrophil count over the magic 0.5 threshold I was able to have my Campath. Incidentally a neutrophil count below 1.0 makes me officially neutropenic. So 3 hours of Campath started at 1.40pm. saw Vicki Bevan again, the lymphoma clinical nurse specialist, who gave us the card of Anne Crook, the haemoto-oncology councellor the All set to go about 5.30pm when a rash appeared on my wrist followed by one behind my hip on the waist line, so we had to stay until 7.15pm with injections of hydracortisone and piriton and then observations. Worth a note that my temperature went up to 37.7 during this time.
Breakfast: fruit juice; yoghurt, honey and pineapple; toast and marmalade; green tea and lemon;
Lunch: Avocado pear – half, ham sandwiches, yoghurt with honey and ginger, banana;
Supper: Lentil and ham soup, hot tomatoes with basil on toast, yoghurt with honey and pineapple.
Up for a bit of breakfast before 8.30am Mass then finished off afterwards. Feeling good, but legs up, so compression stockings on all day. To Matthew and Charrise for a chaotic lunch with the girls and Roni and back by 4.30pm. A lazy afternoon and evening.
Breakfast: Orange juice; yoghurt, cereal and mango; toast and marmalade; hot chocolate.
Lunch: Lasagne and salad (good) with garlic bread (no taste); Tina’s meringues (great – as always!).
Tea: Can’t remember!
Saturday 24th February 2007
A lazy day all round, after signing up for the C4. Phone calls and did my blog, then Rugby – England slaughtered by the Irish at Croke Park, followed by France beating Wales. Tina to Linda Bell’s for a drink and chat. Felt good all day, but my legs were up much more than usual despite being rested.
Breakfast: yoghurt, raspberries and honey, toast and marmalade, green tea
Lunch: Cheese on toast (tasteless – even with sauce and Tabasco)
Dinner: Chicken tikka marsala, rice and papadums (OK except the papadums were tasteless)
Friday 23rd February 2007
Legs seemed better, no rash and throat / head better. Up to KCH with Matthew early in case I needed a transfusion. Blood counts superb! Wbc: 2.44; Hbn: 9.2; Plt: 125; Neuts: 2.39 – unbelievable! Wt: 82.7kgs. Despite early arrival, relative chaos – staff shortages - in chemo room meant Campath didn’t start until 1.30pm. Visit from Mary Alston from work – which was great. Slept a lot through the Campath – the most I have ever done – about an hour in one stretch! Much to Matthew’s amusement. Woke with a proper head sweat! Usual allergic reaction at the end, given the usual anti-stuff and allowed to leave without lengthy observations as this has become a regular thing. Home at 7.30pm. Unfortunately a lot our tension surfaced this eveing whilst Matthew was with us. He acted as a wise councellor – and did very well despite his own emotions being expressed as well.
Breakfast: fruit juice; yoghurt, honey, raspberries and cereal; toast and marmalade; green tea.
Lunch: Ham sandwich, apricot fool, banana, biscuits.
Dinner: Chilli bean soup; pork steaks, new potatoes roasted and roasted vegetables (delicious); yoghurt, raspberries and honey.
Thursday 22nd February 2007
No night sweats, but feet and Mr Blobby up more than recent mornings. Took 2 x 20mg flusemide tablets. Visits from Derek O. and Phil Mears took me from 10am through 3.30pm with a break for lunch. BUT – I have a slightly tickly throat and by 5pm a slight headache. Temperature of 36.1c; Took two paracetomol. Fortunately this came to nothing. Legs swelled up.
Breakfast: fruit juice; yoghurt, honey and mango; toast and marmalade; ordinary tea with milk (no good);
Lunch: red lentil and pancetta soup; ham sandwiches; rhubarb yoghurt;
Dinner: Chilli bean soup; pan fried salmon, potatoes and asparagus; yoghurt, honey and mango.
Wednesday 21st February 2007
Head sweats for the second night running. Legs down but allergy rash on waist and thighs.
Also noticed that a spot on my right calf, which I have had for about 2-3 days had grown and was now reddening – must tell them about this. Could it be the start of an ulcer? Free parking in pub car park (!) after very easy run up. Blood counts excellent! Wbc: 1.58; Hbn: 8.7; Plt: 75; Neuts: 1.52 (WOW!). (Dr) Austin advised keep an eye on the red spot and marked it with a pen. Also I stop Ciprofloxacin and the Spironolactone now that the fluid on my legs is going down. My Campath ran from 12.40pm for 3 hours, but then an allergic reaction appeared on my wrist, thighs, chest and stomach, so more Hydrocortisone and piriton and a wait until 5.15pm before we could leave. Charge Nurse Eunice forgot to give me GCSF, so I did it myself when I got home.
Breakfast: fruit juice; yoghurt, honey and mango; toast and marmalade; green tea and lemon;
Lunch: half an avocado pear; ham sandwiches; biscuits; banana;
Dinner: red lentil and pancetta soup; Pinky Lilani’s chicken curry (limited taste) with flat peas (tasty); yoghurt, mango and honey.
Tuesday 20th February 2007
Woke to find that my swollen legs had virtually gone(!!) and did not feel the need to wear the compression stockings. No reaction to the Campath at all and am feeling good. Dibbled around all morning, phone calls with Peter and Daphne, read a load of information sent to me from the CLL Support Association. Eventually got down to some typing about 4.30pm – I really must try to start earlier! Allergy rash came up in the evening on thighs and lower back – not a problem but forgot I had some piriton I could have taken. Feet swollen by 8pm.
Breakfast: fruit juice; yoghurt, honey and pineapple; toast and marmalade; green tea and lemon;
Lunch: Lentil and ham soup, sardines and tomatoes on toast, yoghurt and honey;
Dinner: Guinness, smoked haddock, asparagus and “roasted” new potatoes (nice – but little flavour from the haddock unfortunately), yoghurt with honey and mango.
Monday 19th February 2007
Another easy drive up – half term? Blood counts good – Wbc: 0.86; Neutrophils 0.74. My weight was 81.3kg (up 0.5kg). With the neutrophil count over the magic 0.5 threshold I was able to have my Campath. Incidentally a neutrophil count below 1.0 makes me officially neutropenic. So 3 hours of Campath started at 1.40pm. saw Vicki Bevan again, the lymphoma clinical nurse specialist, who gave us the card of Anne Crook, the haemoto-oncology councellor the All set to go about 5.30pm when a rash appeared on my wrist followed by one behind my hip on the waist line, so we had to stay until 7.15pm with injections of hydracortisone and piriton and then observations. Worth a note that my temperature went up to 37.7 during this time.
Breakfast: fruit juice; yoghurt, honey and pineapple; toast and marmalade; green tea and lemon;
Lunch: Avocado pear – half, ham sandwiches, yoghurt with honey and ginger, banana;
Supper: Lentil and ham soup, hot tomatoes with basil on toast, yoghurt with honey and pineapple.
Intravenous Campath (week 2) and nutrition
Sunday 18th February 2007
Didn’t wear my compression stockings in bed and had no night sweats – connected? Tried to get on with my blog preparation, but what with phone calls, my compulsory hot chocolate and muffin break and constant trips to the toilet – the Spironactolone diuretic is most definitely working (!) – I didn’t get going until midday – and I hadn’t touched the newspaper! Tina had been to Mass and had a good long chat with Father Tony afterwards – which was great and then had work to do at the shop. Consequently that put our lunch back to gone 2.30pm and Michel was here at 3.30pm for tea and a chat. I eventually got down to some typing about 5pm. Later emailed Ron and Linda Chamberlain - long overdue as they were not aware of the worsening of my condition.
Breakfast: fruit juice; yoghurt, honey and mango; toast and marmalade; green tea and lemon; banana.
Lunch: Guinness, red lentil and pancetta soup (ok), ham sandwich (no taste).
Dinner: avocado pear, Spanish pork casserole with couscous (good), yoghurt, honey and mango.
Saturday 17th February 2007
For the first time since my week in hospital, I had night sweats (twice) soaking the pillowcase.
We pushed the boat out today test driving and ordering a diesel C4 “Cool” from Tates at Pyecombe and ordering a Sony hard drive DVD recorder from Bewarms to go with the HD-ready TV already awaiting delivery – why not?!! Lunch: minestrone soup (no taste without tabasco and lots of salt), cheese on toast (no taste) and yoghurt, honey and some fresh but tasteless pineapple. Dinner: minestrone soup, stir-fry chicken with noodles and vegetables (quite tasty) and rhubarb yoghurt (tasty). Two bottles of Nigerian Guinness as my aperitif – very strong!! Literature arrived from both my Lymphoma contacts of Thursday. Managed to drink 2 litres of water.
Friday 16th February 2007
Easiest drive to KCH we have had so far. Danny and Donna there already, Danny having chemo, but not looking at all well. Blood counts still very low – Wbc 0.26; Hbn 7.9;
Plt 41; Neuts 0.19. - so no Campath again. My weight was 80.8kg – up 1.5kg from Wednesday. Clinic appointment with (Dr) Emma and Steve Devereux. All going very well! The low counts are consistent over days, indicating that I have responded well to the treatment and this is believed to be reflected in the bone marrow as well. There is no need to make up these 4 missed doses of Campath and I will still be self-injecting it in 2 weeks time – great news. Prescribed an additional diuretic (Spironactolone) to deal with my elephant legs, for which I was also given 2 pairs of white thigh length compression stockings – nice! Had two units of blood and the rather strange pentamidine nebuliser. The nebuliser process took over 40 minutes and I nodded off several times, once making the tube pop off the connector on the pump machine - with a bang! Busy roads through south London, but home by 8.20pm after a little shopping at Tescos. Matthew came up for a chat and a drink. Dinner of chicken and pasta (sadly not much taste).
Thursday 15th February 2007
I was awake at 5.30am with my mind running through diary / blog content and a slightly aching sturnum – like indegestion - from the GCSF, which wore off later. So I was up before 6am typing! Breakfast of yoghurt, honey and ginger (wonderful), then cooked bacon, egg, beans and toast, but it tasted of cardboard after all the effort!! Made contact with the Sussex Lymphoma Support Group via their very helpful national association. The contact is Madeleine Harvey, who lives in Lewes. They have recently had a group meeting, but are getting together for a pub lunch at the Ansty Cross on 31 March. We may be able to get there. Mid morning Green and Blacks hot chocolate, after opening the £8 tin of Charbonnel and Walkers only to find the plastic bag inside was split – doh!! Lunch of lentil and bacon soup, bacon sandwich (cardboard) and yoghurt with honey and ginger. Terry came round for a chat and to take away the cherry tree prunings. I planted the snowdrops Tina bought by post in the front garden under some grass – quite tiring – then had a second hot chocolate, finishing a pint of milk for the day.
Before dinner had two bottles of Guinness (real ones brewed in Dublin) good and tasty. Dinner of home made butternut squash and bacon cream soup (absolutely delicious), salmon fillet, asparagus and garlic potatoes. Then I drank the sample chocolate flavoured Fortisip protein supplement given to me by Bettina – hmm!! – might want to avoid these and try to get my weight back by more orthodox intake. So far the diuretics seem to be having little effect and by bedtime my legs and knees were really swollen up, like elephant’s legs! I am also still living with diarrhoea. My problem with drinking water has gone completely and I drank 2+ litres (4 pints) through the day – marked up on a chart on the calendar!
Footnote: By now I realised that I am putting down a lot of detail in these daily logs at the moment and decided that I will have to review this after I have done “catch up” both from mid January and also from December 2002 – all of which will eventually appear in sequence of course! Is anyone going to be interested in reading a blog swamped with minutiae? Perhaps I will get some feedback on this point?
Wednesday 14th February 2007
I find I am sleeping a little longer each night. I guess the effects of the Methylprednisolone are gradually wearing off. Usual early morning medicine routine. It is Valentine’s Day! Celebrated after Tina was back from her 6.30am swim. Breakfast of mango and passion fruit thick juice, Greek style yogourt and honey - for the first time- plus pineapple, green tea (hmmm) toast and marmalade – filling. Lousy drive in rain and spray on motorway and slowest to date through Coulsdon and Purley. So got to KCH at 11am – latest so far. I was supposed to have a transfusion of platelets, a PICC line fitted and my Campath today, but my low blood counts said “No”. They were: Wbc: 0.15; Hgb: 8.1; Plt: 45; Neut: 0.13. So the Wbc and Neutrophil counts were even lower than Monday’s. My weight was down to 79.3 kgs – a reduction of 1kg from Monday – all fluid! So a frustrating non-day today. Two of the nurses – separately – noticed a reddening of my skin on my left wrist and told me to keep an eye on it in case it turned to an infection. I was seen by (Dr) Lallindra, who checked with Steve Devereux on the low counts. My Aciclovir dosage is now halved to 200mg – apparently it can slow up white cell count recovery – the Pentanidine inhaling process will be done on Friday, rather than in 3 weeks time, I had a CMV check (herpes-type virus) blood sample taken and a GCSF injection. Asked Lisa about active CLL support groups and advised that because of the relative rarity of CLL – first time I have been told that! – there weren’t any known to KCH. She gave me a national Lymphoma Association card and suggested that, as the treatments were often similar, it would be worth trying there to find a local group. So we were away early, at 2.20pm after I had been “forced” to devour my lunch by Tina – I have to build up my weight! I slept solidly for the last half of our drive home!! Had a pre-dinner half pint bottle of Guinness (good and tasty). This was a “real” Dublin-brewed Guinness, one of the 4-pack I bought at Waitrose. Dinner of Covent Garden tomato and basil soup (quite tasty), tuna and rice – no cheese topping for me though! (not very tasty) – plus another Guinness (!) and then eventually yogourt (with honey and ginger slices – nice!) and finished off the breakfast pineapple. This had been a very tiring day for Tina, but once again I was too awake for bed at 9.30pm and still had to do my night medications later. So bed for me around midnight, reading only a couple of pages of my book again.
Tuesday 13th February 2007
Breakfast of mango pieces, toast, marmalade and thick hot chocolate with full fat milk (!). Dave Lloyd from Sussex Police Welfare visited by arrangement to assess my needs, present and future. I mentioned the outflow of money at the moment, with parking, petrol and the new phenomenon of high cost shopping! Dave suggested bearing in mind the convalescent home and the force bungalow for any future away-time or recuperation needs. Chewed the cud over policing in Sussex as well. Lunch of lentil and ham soup (good) and pili pili sardines on toast (no taste). Went on the CLL Support Association website, enrolled myself and checked the discussion forum. Looked helpful all round, except no sign on any local support groups being mentioned – shame. 4pm out to Waitrose to do a big ((£80!!) shop of individual packs, pots and portions, to build my weight up – taking great note of what Bettina had said yesterday!. Bought yogourts, puddings, juices, ice creams, biscuits, cakes, honey, beans, hot chocolate, ham, cheese and beer. Funnily enough I bumped into Jane and Alexander. He is now 1 year treatment-free from his childhood leukaemia and looks good. Dinner of Romano peppers and feta (no taste) with a cous-cous and chopped tomato compliment (tasty!). Tina disappointed again. Mango pieces and a Green and Blacks chocolate ice cream for sweet – excellent. But then that ice cream should be good at £1.39 for a small tub!! Did my self-injection of GCSF – getting more used to it now! Simon sent me a blog link that I might use if I actually get to publication! Dibbled about until gone midnight as usual and read until 1am.
Monday 12th February 2007
Up to Kings with Jim Rodgers today. He parked locally and took the train to the office with a more leisurely start than usual for him. My weight today is 80.3kgs. My Wbc: 0.22; Hbc: 7.4; Plt: 51; Neut: 0.17. So too low for Campath again. The Neutrophils count threshold for having chemotherapy is 0.5; and for being neutropenic is 1.0. Steve Devereux and Austin decide I should stop taking Septrin and Ciprofloxacine as they can suppress recovery of the white cells and neutrophils, but that I must have Pentamidine instead, which I will inhale through a nebuliser – the intricacies of which will be revealed in due course no doubt! I am prescribed Furosimide to deal with my water retention problem.
For the first time I feel like eating a sandwich for my lunch and check out the hospital shop. I am confused by the “clean diet” instructions and the various sandwich contents, so play safe with ham and mustard on plain brown bread supplied by Ginsters. It is surprisingly ok. I then have a session with Bettina the nutritionist, who gives lots of good advice and leaflets, but also tells me what I must and cannot do, including not eating avocado pears because their skins are too soft and pick up germs if damaged – oh no!!!! (But there is also a hard skinned variety, so I will go there – blow it!!). She is particularly concerned about my breakfasts being only fruit. I should add yoghurt and toast to it at least. I should also snack between meals. This is hard for me as I very rarely do that. I should also try to drink at least 2 litres of water (or water content) per day. This is just getting possible with my tastebuds now managing water a lot better than over last weekend.
I am then given 2 units of blood, but that doesn’t start until 2.40pm, runs for 4 hours, so Jim is with me well before I am finished. We are away at 6.50pm but, with Bettina’s words still ringing in my ears, I pick up another sandwich plus a Tropicana fruits drink in the shop. By the time we get to Purley the Furosimide has started to work. We have to stop at the side of a dark stretch of road and I pee for England(!!) I am home at 8.20pm. Tina is very tense and has felt helpless all day, especially with the important conversation over my diet etc. We resolve that she will drive up with me every day and I politely cancel and explain to friends who have offered to take me to London in the days ahead.
Breakfast: Kiwi fruit, banana and a vitamin C tablet.
Lunch: Ham and mustard sandwich; avocado pear.
Dinner: Singapore noodles with extra chicken; avocado pear.
Didn’t wear my compression stockings in bed and had no night sweats – connected? Tried to get on with my blog preparation, but what with phone calls, my compulsory hot chocolate and muffin break and constant trips to the toilet – the Spironactolone diuretic is most definitely working (!) – I didn’t get going until midday – and I hadn’t touched the newspaper! Tina had been to Mass and had a good long chat with Father Tony afterwards – which was great and then had work to do at the shop. Consequently that put our lunch back to gone 2.30pm and Michel was here at 3.30pm for tea and a chat. I eventually got down to some typing about 5pm. Later emailed Ron and Linda Chamberlain - long overdue as they were not aware of the worsening of my condition.
Breakfast: fruit juice; yoghurt, honey and mango; toast and marmalade; green tea and lemon; banana.
Lunch: Guinness, red lentil and pancetta soup (ok), ham sandwich (no taste).
Dinner: avocado pear, Spanish pork casserole with couscous (good), yoghurt, honey and mango.
Saturday 17th February 2007
For the first time since my week in hospital, I had night sweats (twice) soaking the pillowcase.
We pushed the boat out today test driving and ordering a diesel C4 “Cool” from Tates at Pyecombe and ordering a Sony hard drive DVD recorder from Bewarms to go with the HD-ready TV already awaiting delivery – why not?!! Lunch: minestrone soup (no taste without tabasco and lots of salt), cheese on toast (no taste) and yoghurt, honey and some fresh but tasteless pineapple. Dinner: minestrone soup, stir-fry chicken with noodles and vegetables (quite tasty) and rhubarb yoghurt (tasty). Two bottles of Nigerian Guinness as my aperitif – very strong!! Literature arrived from both my Lymphoma contacts of Thursday. Managed to drink 2 litres of water.
Friday 16th February 2007
Easiest drive to KCH we have had so far. Danny and Donna there already, Danny having chemo, but not looking at all well. Blood counts still very low – Wbc 0.26; Hbn 7.9;
Plt 41; Neuts 0.19. - so no Campath again. My weight was 80.8kg – up 1.5kg from Wednesday. Clinic appointment with (Dr) Emma and Steve Devereux. All going very well! The low counts are consistent over days, indicating that I have responded well to the treatment and this is believed to be reflected in the bone marrow as well. There is no need to make up these 4 missed doses of Campath and I will still be self-injecting it in 2 weeks time – great news. Prescribed an additional diuretic (Spironactolone) to deal with my elephant legs, for which I was also given 2 pairs of white thigh length compression stockings – nice! Had two units of blood and the rather strange pentamidine nebuliser. The nebuliser process took over 40 minutes and I nodded off several times, once making the tube pop off the connector on the pump machine - with a bang! Busy roads through south London, but home by 8.20pm after a little shopping at Tescos. Matthew came up for a chat and a drink. Dinner of chicken and pasta (sadly not much taste).
Thursday 15th February 2007
I was awake at 5.30am with my mind running through diary / blog content and a slightly aching sturnum – like indegestion - from the GCSF, which wore off later. So I was up before 6am typing! Breakfast of yoghurt, honey and ginger (wonderful), then cooked bacon, egg, beans and toast, but it tasted of cardboard after all the effort!! Made contact with the Sussex Lymphoma Support Group via their very helpful national association. The contact is Madeleine Harvey, who lives in Lewes. They have recently had a group meeting, but are getting together for a pub lunch at the Ansty Cross on 31 March. We may be able to get there. Mid morning Green and Blacks hot chocolate, after opening the £8 tin of Charbonnel and Walkers only to find the plastic bag inside was split – doh!! Lunch of lentil and bacon soup, bacon sandwich (cardboard) and yoghurt with honey and ginger. Terry came round for a chat and to take away the cherry tree prunings. I planted the snowdrops Tina bought by post in the front garden under some grass – quite tiring – then had a second hot chocolate, finishing a pint of milk for the day.
Before dinner had two bottles of Guinness (real ones brewed in Dublin) good and tasty. Dinner of home made butternut squash and bacon cream soup (absolutely delicious), salmon fillet, asparagus and garlic potatoes. Then I drank the sample chocolate flavoured Fortisip protein supplement given to me by Bettina – hmm!! – might want to avoid these and try to get my weight back by more orthodox intake. So far the diuretics seem to be having little effect and by bedtime my legs and knees were really swollen up, like elephant’s legs! I am also still living with diarrhoea. My problem with drinking water has gone completely and I drank 2+ litres (4 pints) through the day – marked up on a chart on the calendar!
Footnote: By now I realised that I am putting down a lot of detail in these daily logs at the moment and decided that I will have to review this after I have done “catch up” both from mid January and also from December 2002 – all of which will eventually appear in sequence of course! Is anyone going to be interested in reading a blog swamped with minutiae? Perhaps I will get some feedback on this point?
Wednesday 14th February 2007
I find I am sleeping a little longer each night. I guess the effects of the Methylprednisolone are gradually wearing off. Usual early morning medicine routine. It is Valentine’s Day! Celebrated after Tina was back from her 6.30am swim. Breakfast of mango and passion fruit thick juice, Greek style yogourt and honey - for the first time- plus pineapple, green tea (hmmm) toast and marmalade – filling. Lousy drive in rain and spray on motorway and slowest to date through Coulsdon and Purley. So got to KCH at 11am – latest so far. I was supposed to have a transfusion of platelets, a PICC line fitted and my Campath today, but my low blood counts said “No”. They were: Wbc: 0.15; Hgb: 8.1; Plt: 45; Neut: 0.13. So the Wbc and Neutrophil counts were even lower than Monday’s. My weight was down to 79.3 kgs – a reduction of 1kg from Monday – all fluid! So a frustrating non-day today. Two of the nurses – separately – noticed a reddening of my skin on my left wrist and told me to keep an eye on it in case it turned to an infection. I was seen by (Dr) Lallindra, who checked with Steve Devereux on the low counts. My Aciclovir dosage is now halved to 200mg – apparently it can slow up white cell count recovery – the Pentanidine inhaling process will be done on Friday, rather than in 3 weeks time, I had a CMV check (herpes-type virus) blood sample taken and a GCSF injection. Asked Lisa about active CLL support groups and advised that because of the relative rarity of CLL – first time I have been told that! – there weren’t any known to KCH. She gave me a national Lymphoma Association card and suggested that, as the treatments were often similar, it would be worth trying there to find a local group. So we were away early, at 2.20pm after I had been “forced” to devour my lunch by Tina – I have to build up my weight! I slept solidly for the last half of our drive home!! Had a pre-dinner half pint bottle of Guinness (good and tasty). This was a “real” Dublin-brewed Guinness, one of the 4-pack I bought at Waitrose. Dinner of Covent Garden tomato and basil soup (quite tasty), tuna and rice – no cheese topping for me though! (not very tasty) – plus another Guinness (!) and then eventually yogourt (with honey and ginger slices – nice!) and finished off the breakfast pineapple. This had been a very tiring day for Tina, but once again I was too awake for bed at 9.30pm and still had to do my night medications later. So bed for me around midnight, reading only a couple of pages of my book again.
Tuesday 13th February 2007
Breakfast of mango pieces, toast, marmalade and thick hot chocolate with full fat milk (!). Dave Lloyd from Sussex Police Welfare visited by arrangement to assess my needs, present and future. I mentioned the outflow of money at the moment, with parking, petrol and the new phenomenon of high cost shopping! Dave suggested bearing in mind the convalescent home and the force bungalow for any future away-time or recuperation needs. Chewed the cud over policing in Sussex as well. Lunch of lentil and ham soup (good) and pili pili sardines on toast (no taste). Went on the CLL Support Association website, enrolled myself and checked the discussion forum. Looked helpful all round, except no sign on any local support groups being mentioned – shame. 4pm out to Waitrose to do a big ((£80!!) shop of individual packs, pots and portions, to build my weight up – taking great note of what Bettina had said yesterday!. Bought yogourts, puddings, juices, ice creams, biscuits, cakes, honey, beans, hot chocolate, ham, cheese and beer. Funnily enough I bumped into Jane and Alexander. He is now 1 year treatment-free from his childhood leukaemia and looks good. Dinner of Romano peppers and feta (no taste) with a cous-cous and chopped tomato compliment (tasty!). Tina disappointed again. Mango pieces and a Green and Blacks chocolate ice cream for sweet – excellent. But then that ice cream should be good at £1.39 for a small tub!! Did my self-injection of GCSF – getting more used to it now! Simon sent me a blog link that I might use if I actually get to publication! Dibbled about until gone midnight as usual and read until 1am.
Monday 12th February 2007
Up to Kings with Jim Rodgers today. He parked locally and took the train to the office with a more leisurely start than usual for him. My weight today is 80.3kgs. My Wbc: 0.22; Hbc: 7.4; Plt: 51; Neut: 0.17. So too low for Campath again. The Neutrophils count threshold for having chemotherapy is 0.5; and for being neutropenic is 1.0. Steve Devereux and Austin decide I should stop taking Septrin and Ciprofloxacine as they can suppress recovery of the white cells and neutrophils, but that I must have Pentamidine instead, which I will inhale through a nebuliser – the intricacies of which will be revealed in due course no doubt! I am prescribed Furosimide to deal with my water retention problem.
For the first time I feel like eating a sandwich for my lunch and check out the hospital shop. I am confused by the “clean diet” instructions and the various sandwich contents, so play safe with ham and mustard on plain brown bread supplied by Ginsters. It is surprisingly ok. I then have a session with Bettina the nutritionist, who gives lots of good advice and leaflets, but also tells me what I must and cannot do, including not eating avocado pears because their skins are too soft and pick up germs if damaged – oh no!!!! (But there is also a hard skinned variety, so I will go there – blow it!!). She is particularly concerned about my breakfasts being only fruit. I should add yoghurt and toast to it at least. I should also snack between meals. This is hard for me as I very rarely do that. I should also try to drink at least 2 litres of water (or water content) per day. This is just getting possible with my tastebuds now managing water a lot better than over last weekend.
I am then given 2 units of blood, but that doesn’t start until 2.40pm, runs for 4 hours, so Jim is with me well before I am finished. We are away at 6.50pm but, with Bettina’s words still ringing in my ears, I pick up another sandwich plus a Tropicana fruits drink in the shop. By the time we get to Purley the Furosimide has started to work. We have to stop at the side of a dark stretch of road and I pee for England(!!) I am home at 8.20pm. Tina is very tense and has felt helpless all day, especially with the important conversation over my diet etc. We resolve that she will drive up with me every day and I politely cancel and explain to friends who have offered to take me to London in the days ahead.
Breakfast: Kiwi fruit, banana and a vitamin C tablet.
Lunch: Ham and mustard sandwich; avocado pear.
Dinner: Singapore noodles with extra chicken; avocado pear.
First week after hospital
Sunday 11th February 2007
Legs had come down a bit by morning, but they would, wouldn’t they? 8.30am Mass down the road and went by car. Felt a little “wibbly wobbly” en route. Food and drink experiments continued: London-brewed Guinness – too weak; Fuller’s Golden Harvest – too strong! Peter and Sue called in for an afternoon visit, which was nice. Mr Blobby is back this evening. By my bedtime (still crazily 1am!!) my feet, legs, knees and thighs are up like balloons.
Lunch: Soup and avocado pear.
Dinner: Chilli con Carne – meat tasted like cardboard – unfortunately.
It is getting very frustrating for Tina and I am looking very thin, particularly my chest and shoulders. I am in urgent need of a more substantial diet and nutritional advice.
Saturday 10th February 2007
Some more food experimenting: Kiwi fruit – just about ok; yoghurt – yes! Did my own GCSF injection. Slept from 8.30pm to 10.30pm and 12.30am to 4.30am. Went to bed with fat legs, thighs and behind the knees.
Breakfast: Yoghurt, kiwi fruit, banana and a vitamin C tablet.
Lunch: Lentil and ham soup with toast croutons; avocado pear.
Dinner: panfried salmon (good), hollandaise sauce (good), garlic potatoes (no taste), beans (good); vanilla, chocolate chip and ginger ice cream (lovely).
Friday 9th February 2007
I am obviously getting a lot of fluid retention and I am somewhat embarrassingly at home to Mr Blobby!! Matthew does the run to Kings with me today, which is good for us both. My weight check today has me at 78.5 kgs – I have lost weight as I have not been eating much. My blood counts are- Wbc: 0.25; Hbn: 8.9; Plt: 41; Neuts: 0.22. As my neutrophils are so low I am not able to have any Campath today. I am told that I am also already neutropenic and what this means, including being given a “clean diet” sheet, strictly avoiding possible contact with infections, awareness of feeling unwell, temperature of 38c, etc. Steve Devereux underlines, this reminding me that I should get myself into the local A & E if I feel unwell or have a temperature and call their on duty doctor. I check out Mr Blobby(!!) with Dr Lara and am told to keep an eye on it and any other similar symptoms or reactions. I am shown how to self inject with GCSF and do it – in front of Matthew who is most impressed. I am given two doses to use over the weekend, plus being told what possible achy side effects I might get in my pelvis, thighs or sternum. I am also prescribed a pot of E45 for my hands and flaky skin. Matthew experiences the horrors of the pharmacy – i.e. the interminable wait! – with predictable reaction! Checked out an off-licence in Tulse Hill and found a Guinness brewed in Nigeria at 7.6% strength!!
Thursday 8th February 2007
I have sore hands from washing up without gloves on. I have flaky skin on my legs and my feet are beginning to swell. A day after the Campath and in the evening I have a rash come up on my chest and shoulder. I have a piriton tablet, given to me in case this should occur, however, the rashes are still up during the night, albeit they are not a problem.
Some food experiments: avocado pear; mango; and pineapple – all great!
Dinner: Smoked haddock (unfortunately no taste), sliced tomatoes (moist and ok but no real taste) peas – quite good.
Wednesday 7th February 2007
My blood counts today are- Wbc: 2.0; Hbn: 7.6; Neutrophils: 0.6. The nurses are having difficulty finding a half decent vein, so I will probably have a PICC line fitted on Friday. What is involved in this is explained to me and I am given a leaflet on it as well. I get Campath given over 2 hours this time as I had apparently done so well before. However, no sooner do I finish my post Campath flush and have my canula removed, than I get an allergic reaction come up with rashes on my back, shoulders, arms and head! We have to stay for ages. I am injected with more piriton and hydrocortisone – I already get it as pre-medication. I am seen by doctors on two separate occasions and, when the reaction shows signs of reversing, we are eventually able to leave at 8pm, over an hour and a half later than expected. We get home at 9.20pm. We do, however, get some good news today. We are paying a fortune for parking and Lisa tells us where to park for free just a little way back up Denmark Hill from the hospital. This is very timely as the hospital car parking is also chaotic – Tina ended up parking across the road in the Maudsley today and we had to get a security guard to let us out as their car park attendants finished at 6pm!!
I am still not eating anything worthy of the name of food. Carlsberg Special Brew doesn’t help this time either!
Monday 5th February 2007
Back up to Kings for the start of the 4 week’s of Campath. Not a very good journey despite leaving at 9am – we seemed to be in permanent rush hour mode until we reached the Thornton Heath roundabout, when suddenly everything became easier and we were ahead of ourselves by the time we reached Herne Hill. I was feeling decidedly low key so we stopped in Brockwell Park for a 10 minute break, sitting in some pale winter sunshine. That is until we were politely moved on by a couple of park rangers, who kindly pointed out the nicer aspects of Dulwich Park. Apparently Lambeth’s parks attract a lot of dodgy people, hence the vigilant rangers, whereas Southwark’s are somehow better and don’t!! As it happens we were never to have the time or the opportunity to visit Dulwich Park to check if this was correct!
I check into the bloods unit, while Tina parks the car, but my wait is not long. It is just long enough for Tina to get a coffee from the adjacent café – Starbucks would you believe it!? “what does that taste like?” I wonder. It is black filter coffee, which is wouldn’t normally go for at all. “Hmm – I can drink that.” Another discovery and I get a cup to take with me the chemotherapy room. The chemotherapy room is of course another new world, only seen obliquely previously from the outpatients’ waiting room. This is to be my thrice weekly “home” for the next 4 weeks and which was to become somewhat of a friend as well. As with everything about Kings, the team here are great and made us feel very welcome – starting with nurse Lisa this morning and going on in the same fashion every day – I cannot speak more highly of them, they were brilliant. I am also looked after by snr. charge nurse Joy and seen by Dr Lara Roberts, one of the registrars. My blood counts are- Wbc: 14.9; Hbn: 8.5; Plts: 40; Neutrophils 1.3. Meanwhile having discovered Starbucks black filter coffee. I next discover the pleasures of Knorr tomato and herb soup, as dispensed from the machine in the chemotherapy room – free! I decide to pass on the tea, coffee and chocolate which the machine also does and have 4 cups of tomato soup through the day, bearing in mind that I am still not really eating anything other than bananas, ginger and so on. I eventually start my Campath, which runs for 3 hours. This finishes up with my getting an injection of granulocyte cell stimulating factor (GCSF) as my neutrophils are low enough already and will probably go even lower so as to require some help in their recovery. My sleep patterns are up the creek. I am still sleeping far fewer hours than usual and sit up reading and doing sudoku until I eventually dose off.
Sunday 4th February 2007
I am in no fit state to go to Mass this morning and breakfast is a disaster. I cannot find anything tasting or feeling remotely good to eat!!! I just about drink a mug of lemon and ginger tea. Matthew comes up for a visit and to check how his old man is – or isn’t!! I find I can taste crystallized ginger, but neither lemon barley water nor lime juice cordial is any good as the taste of water is so foul! Didn’t feel up to doing much, so sat around watching rugby and football. The dryness of my mouth is becoming intolerable and in an inspired moment I try a can of ginger beer. It was both thirst quenching and tasty – quite amazing!! I drank 3 cans today – leftovers from Christmas as it happens.
Lunch – Covent Garden lentil and ham soup (Yes!); ham sandwich (No!)
Nothing else to eat – just couldn’t face it!!
Legs had come down a bit by morning, but they would, wouldn’t they? 8.30am Mass down the road and went by car. Felt a little “wibbly wobbly” en route. Food and drink experiments continued: London-brewed Guinness – too weak; Fuller’s Golden Harvest – too strong! Peter and Sue called in for an afternoon visit, which was nice. Mr Blobby is back this evening. By my bedtime (still crazily 1am!!) my feet, legs, knees and thighs are up like balloons.
Lunch: Soup and avocado pear.
Dinner: Chilli con Carne – meat tasted like cardboard – unfortunately.
It is getting very frustrating for Tina and I am looking very thin, particularly my chest and shoulders. I am in urgent need of a more substantial diet and nutritional advice.
Saturday 10th February 2007
Some more food experimenting: Kiwi fruit – just about ok; yoghurt – yes! Did my own GCSF injection. Slept from 8.30pm to 10.30pm and 12.30am to 4.30am. Went to bed with fat legs, thighs and behind the knees.
Breakfast: Yoghurt, kiwi fruit, banana and a vitamin C tablet.
Lunch: Lentil and ham soup with toast croutons; avocado pear.
Dinner: panfried salmon (good), hollandaise sauce (good), garlic potatoes (no taste), beans (good); vanilla, chocolate chip and ginger ice cream (lovely).
Friday 9th February 2007
I am obviously getting a lot of fluid retention and I am somewhat embarrassingly at home to Mr Blobby!! Matthew does the run to Kings with me today, which is good for us both. My weight check today has me at 78.5 kgs – I have lost weight as I have not been eating much. My blood counts are- Wbc: 0.25; Hbn: 8.9; Plt: 41; Neuts: 0.22. As my neutrophils are so low I am not able to have any Campath today. I am told that I am also already neutropenic and what this means, including being given a “clean diet” sheet, strictly avoiding possible contact with infections, awareness of feeling unwell, temperature of 38c, etc. Steve Devereux underlines, this reminding me that I should get myself into the local A & E if I feel unwell or have a temperature and call their on duty doctor. I check out Mr Blobby(!!) with Dr Lara and am told to keep an eye on it and any other similar symptoms or reactions. I am shown how to self inject with GCSF and do it – in front of Matthew who is most impressed. I am given two doses to use over the weekend, plus being told what possible achy side effects I might get in my pelvis, thighs or sternum. I am also prescribed a pot of E45 for my hands and flaky skin. Matthew experiences the horrors of the pharmacy – i.e. the interminable wait! – with predictable reaction! Checked out an off-licence in Tulse Hill and found a Guinness brewed in Nigeria at 7.6% strength!!
Thursday 8th February 2007
I have sore hands from washing up without gloves on. I have flaky skin on my legs and my feet are beginning to swell. A day after the Campath and in the evening I have a rash come up on my chest and shoulder. I have a piriton tablet, given to me in case this should occur, however, the rashes are still up during the night, albeit they are not a problem.
Some food experiments: avocado pear; mango; and pineapple – all great!
Dinner: Smoked haddock (unfortunately no taste), sliced tomatoes (moist and ok but no real taste) peas – quite good.
Wednesday 7th February 2007
My blood counts today are- Wbc: 2.0; Hbn: 7.6; Neutrophils: 0.6. The nurses are having difficulty finding a half decent vein, so I will probably have a PICC line fitted on Friday. What is involved in this is explained to me and I am given a leaflet on it as well. I get Campath given over 2 hours this time as I had apparently done so well before. However, no sooner do I finish my post Campath flush and have my canula removed, than I get an allergic reaction come up with rashes on my back, shoulders, arms and head! We have to stay for ages. I am injected with more piriton and hydrocortisone – I already get it as pre-medication. I am seen by doctors on two separate occasions and, when the reaction shows signs of reversing, we are eventually able to leave at 8pm, over an hour and a half later than expected. We get home at 9.20pm. We do, however, get some good news today. We are paying a fortune for parking and Lisa tells us where to park for free just a little way back up Denmark Hill from the hospital. This is very timely as the hospital car parking is also chaotic – Tina ended up parking across the road in the Maudsley today and we had to get a security guard to let us out as their car park attendants finished at 6pm!!
I am still not eating anything worthy of the name of food. Carlsberg Special Brew doesn’t help this time either!
Monday 5th February 2007
Back up to Kings for the start of the 4 week’s of Campath. Not a very good journey despite leaving at 9am – we seemed to be in permanent rush hour mode until we reached the Thornton Heath roundabout, when suddenly everything became easier and we were ahead of ourselves by the time we reached Herne Hill. I was feeling decidedly low key so we stopped in Brockwell Park for a 10 minute break, sitting in some pale winter sunshine. That is until we were politely moved on by a couple of park rangers, who kindly pointed out the nicer aspects of Dulwich Park. Apparently Lambeth’s parks attract a lot of dodgy people, hence the vigilant rangers, whereas Southwark’s are somehow better and don’t!! As it happens we were never to have the time or the opportunity to visit Dulwich Park to check if this was correct!
I check into the bloods unit, while Tina parks the car, but my wait is not long. It is just long enough for Tina to get a coffee from the adjacent café – Starbucks would you believe it!? “what does that taste like?” I wonder. It is black filter coffee, which is wouldn’t normally go for at all. “Hmm – I can drink that.” Another discovery and I get a cup to take with me the chemotherapy room. The chemotherapy room is of course another new world, only seen obliquely previously from the outpatients’ waiting room. This is to be my thrice weekly “home” for the next 4 weeks and which was to become somewhat of a friend as well. As with everything about Kings, the team here are great and made us feel very welcome – starting with nurse Lisa this morning and going on in the same fashion every day – I cannot speak more highly of them, they were brilliant. I am also looked after by snr. charge nurse Joy and seen by Dr Lara Roberts, one of the registrars. My blood counts are- Wbc: 14.9; Hbn: 8.5; Plts: 40; Neutrophils 1.3. Meanwhile having discovered Starbucks black filter coffee. I next discover the pleasures of Knorr tomato and herb soup, as dispensed from the machine in the chemotherapy room – free! I decide to pass on the tea, coffee and chocolate which the machine also does and have 4 cups of tomato soup through the day, bearing in mind that I am still not really eating anything other than bananas, ginger and so on. I eventually start my Campath, which runs for 3 hours. This finishes up with my getting an injection of granulocyte cell stimulating factor (GCSF) as my neutrophils are low enough already and will probably go even lower so as to require some help in their recovery. My sleep patterns are up the creek. I am still sleeping far fewer hours than usual and sit up reading and doing sudoku until I eventually dose off.
Sunday 4th February 2007
I am in no fit state to go to Mass this morning and breakfast is a disaster. I cannot find anything tasting or feeling remotely good to eat!!! I just about drink a mug of lemon and ginger tea. Matthew comes up for a visit and to check how his old man is – or isn’t!! I find I can taste crystallized ginger, but neither lemon barley water nor lime juice cordial is any good as the taste of water is so foul! Didn’t feel up to doing much, so sat around watching rugby and football. The dryness of my mouth is becoming intolerable and in an inspired moment I try a can of ginger beer. It was both thirst quenching and tasty – quite amazing!! I drank 3 cans today – leftovers from Christmas as it happens.
Lunch – Covent Garden lentil and ham soup (Yes!); ham sandwich (No!)
Nothing else to eat – just couldn’t face it!!
My Inpatient Hospital Experience (Part 2)
Saturday 3rd February 2007
Up for a 6.05am start of an hour of Methylprednisolone on my last day. I have definitely lost a lot of my taste buds. My breakfast is two slices of toast, which I just about manage to eat but do not enjoy. The lemon lucozade is not working and I have a very dry mouth, which water cannot do anything about as I am finding that water is undrinkable. Tina arrived at 11am to collect me and lunch arrives at 11.45. My choice today was the Kosher beef, but it is not very nice – or is it my palate? In any event I cannot eat much and that was probably too much anyway with a car journey ahead of me. I get a final pre-discharge chat with Dr Austin and leave with a giant bag containing a cocktail of medications. I say my farewells all round and leave on a “high”. I have had a most wonderful experience. In addition to my ward friends, there has been a host of nurses, including staff nurses Lola, Marianita and Mithu, Doctors Sarah and Shannon, the cleaners and the delightful Laetitia with her food and drinks trolley and fabulous smile.
I walk out of the hospital and hit the figurative “wall”. A combination of extremely bright sunlight into which we drove, trying to text message my “escape” to all and sundry, the stop – start, bump and grind of driving through the busy roads of south London, whilst helping with directions from the map and a certain quantity of unattractive food lurking in my stomach, made me feel decidedly queasy. By the time we were half way round the Croydon by-pass, I was ready to dispatch the Kosher beef. No!! - wind the window down, keep taking in deep breaths and hope it passes. And it did. I slept the rest of the journey home, arriving at 2.50pm, with thanks to Tina. I then slept for the next hour, but managed to rouse myself enough to watch England beat Scotland at Twickenham and the triumphant return of Jonny Wilkinson (and Jason Robinson) to the England team. Slept some more and then phoned Matthew, Anna and Daphne. I could not face any tea or dinner as I still felt nauseous at times. Despite an intensely dry mouth and tongue, I squeezed down my medications and went to bed early.
Friday 2nd February 2007
Woken up at 3.30am by the sounds of some poor chap wretching badly out in the corridor. I just thank my lucky stars the way things have gone for me so far. I spend the rest of the night reading. The days start early in hospital and I am being given my second unit of blood at 6.40am! My canula has been in situ for 3 days so far and in fact stays for the whole 5 days. I am down to the shop at 7.20am complete with my transfusion kit to get my Guardian, some lemon lucozade – which seems tastier – and some Werther originals, just to prove how much I am struggling with taste! I have chats with Martin and Mary in the Safer Neighbourhoods Unit and get a visit from Jerome at 11am – previewed by his text message “Ok tell the nurses 007 is coming”!! I get a 30 minutes infusion of Methylprednisolone after lunch and find that both Henrys have gone! This is followed by the full 30mg dose of Campath over 3 hours, but which we shorten by 20 minutes. Before I have this first full dose I ask Sister Laetitia to say a prayer with me, which she starts in song. It is wonderful. So, everything has gone fine with the Campath build-up and, better than that, am told that my white blood count went down from 225 on Monday to 67 yesterday – I had no idea my count was that high! I have kept my weight at 79kgs.
Thursday 1st February 2007
I am up and doing at 6am, getting my 200mgs of Itroconozole at 6.30am for my sins. In addition to this, the Corsodyl, Nystatin and Aciclovir, my medication is also 20mg of Omeprazole and 480mg of Septrin (both once daily). I see Dr. Steve Devereux on his rounds this afternoon surrounded by his team. He tells me that the programme is ok and that I will start my 4 weeks of Campath from next Monday 5th February, irrespective of the completion of the Methylprednisolone by Saturday, and that the next week-long session of Methylpred will be at Brighton after those 4 weeks of Campath have been completed. Tessa drops by with some Tabasco sauce and Shwartz pepper to add flavour to my food, especially the soups. Had a visit at 4pm from Peter, ahead of his going to the RAC Club, Pall Mall for one of his regular Cornhill Club dinners – with Sir Trevor McDonald as guest speaker. He arrived as I was starting my 10mg build-up dose of Campath, which I was having over 2 hours and from which I had no ill effects. This was followed by the first of 2 units of blood I was due to have. My taste buds are starting to go awry. Peter’s clementines taste awful and my idea of lucozade was a waste of time. Between us, Samuel and I have coined the expression “the power of positive thinking” as a means of helping us deal with our problems. I suspect I used it first but he has latched on to it and bats it back to me. I hope it works for us both! As a consequence I decided that if I ever wrote up my hospital and CLL experiences into – say - a web log, then I would dedicate it to Samuel and “the power of positive thinking” ! The Methylprednisolone is having some strange effects. Tonight I am now not ready for sleep until after 1am, sitting up doing sudoku and reading City of God by Paulo Lins – what a book!
Wednesday 31st January 2007
A “red letter” day - Tina has come up to visit !! She would have been here from day 1 if I had let her, but with my hospitalisation starting off so low key, it didn’t seem to make sense. By now it looks as if I could be here anywhere between 5 and 7 nights! And I now have enough clothes to see me through whatever. This includes Tina – much against her will - bringing me my tracksuit bottoms! - far more comfortable for me to wear than my cords, or any other of my trousers for that matter. Tina has brought me a present bag from Viv Tuffin at work – she is such a lovely person! I text messaged a thank you to her later. Dr. Sarah runs through the programme again, after the hiccup of yesterday. It seems that things had got lost in translation between Steve Devereux’s “piece of paper” diagram and her putting it into a more formal plan. She also explains some of the possible side effects of Campath – fever and shakes - hence the need for a three day build-up to familiarise the body to its potential impact. Tessa Arscott also visits, all the way from the annex along the road and later on Jim Rodgers calls by in between dealing with his current inter-Parliamentary delegation. At 6pm I get a 3mg dose of Campath after my 2nd day dose of Methylprednisolone. I feel light-headed after the Methylpred. – the consultant’s abbreviation so it must be ok! - followed by tired eyes, seeing yellow in what is normally white and my eyes are focussing much more slowly. I later find that I get involuntary hiccoughs. I don’t appear to have any effects from the Campath. I hear from Daphne that unfortunately she has been told she is not a blood tissue type match for me. My ward friends include Danny, a CCTV worker from Dartford, with Hodgkins Disease, Samuel and two older men.
Tuesday 30th January 2007
In preparation for the start of my treatment, I am introduced to some of the medication I will be living with for the next few weeks or so – Corsodyl mouthwash and Nystatin anti-fungal liquid (four times daily) and the delightful anti-viral Itraconozole (fortunately only twice daily – ugh!). (Editorial Note: If only it was to be "for the next few weeks or so"! It transpires that I live with these medications for at least a year.) This is followed by the taking of MRSA swabs, to make sure I am not bringing anything nasty into KCH. I have to do one myself – eeeek!! My Aciclovir is increased from 200mgs to 400mgs. Talking of introductions, I am now a little more familiar with the rather primitive toilet and shower room facilities that are situated at the bottom end of the ward. Well, it is a Victorian hospital after all!
I find my “interesting” heart beat being checked by three more doctors who were imminently taking a medical examination. Apparently I may have what is known as a mitro valve prolapse - nothing serious it seems but it gives a slight echo to the second heart beat, which can be picked up by attentive ears on the stethoscope. I have been booked down for an echo cardiagram at some stage in the near future. I sign numerous consent forms – for the second time if my memory serves me correctly! - and then have the deadly bone marrow sample and biopsy administered by the gentle hands of Dr. Sarah. This is no. 6 in my CLL career to date and no more pleasant than the others. I have a canula fitted into my left forearm after four abortive attempts to find a suitable vein in my right!! Having waited for most of the day, at 7pm my first dose of Methylprednisolone is started. At 8.30pm nursing changeover time there is a meaningful professional discussion on whether I should be given my first “build-up" dose of Campath this evening. The night duty staff nurse wants to read the protocol for it and there isn’t a copy available, so “no” we wait to tomorrow.
Up for a 6.05am start of an hour of Methylprednisolone on my last day. I have definitely lost a lot of my taste buds. My breakfast is two slices of toast, which I just about manage to eat but do not enjoy. The lemon lucozade is not working and I have a very dry mouth, which water cannot do anything about as I am finding that water is undrinkable. Tina arrived at 11am to collect me and lunch arrives at 11.45. My choice today was the Kosher beef, but it is not very nice – or is it my palate? In any event I cannot eat much and that was probably too much anyway with a car journey ahead of me. I get a final pre-discharge chat with Dr Austin and leave with a giant bag containing a cocktail of medications. I say my farewells all round and leave on a “high”. I have had a most wonderful experience. In addition to my ward friends, there has been a host of nurses, including staff nurses Lola, Marianita and Mithu, Doctors Sarah and Shannon, the cleaners and the delightful Laetitia with her food and drinks trolley and fabulous smile.
I walk out of the hospital and hit the figurative “wall”. A combination of extremely bright sunlight into which we drove, trying to text message my “escape” to all and sundry, the stop – start, bump and grind of driving through the busy roads of south London, whilst helping with directions from the map and a certain quantity of unattractive food lurking in my stomach, made me feel decidedly queasy. By the time we were half way round the Croydon by-pass, I was ready to dispatch the Kosher beef. No!! - wind the window down, keep taking in deep breaths and hope it passes. And it did. I slept the rest of the journey home, arriving at 2.50pm, with thanks to Tina. I then slept for the next hour, but managed to rouse myself enough to watch England beat Scotland at Twickenham and the triumphant return of Jonny Wilkinson (and Jason Robinson) to the England team. Slept some more and then phoned Matthew, Anna and Daphne. I could not face any tea or dinner as I still felt nauseous at times. Despite an intensely dry mouth and tongue, I squeezed down my medications and went to bed early.
Friday 2nd February 2007
Woken up at 3.30am by the sounds of some poor chap wretching badly out in the corridor. I just thank my lucky stars the way things have gone for me so far. I spend the rest of the night reading. The days start early in hospital and I am being given my second unit of blood at 6.40am! My canula has been in situ for 3 days so far and in fact stays for the whole 5 days. I am down to the shop at 7.20am complete with my transfusion kit to get my Guardian, some lemon lucozade – which seems tastier – and some Werther originals, just to prove how much I am struggling with taste! I have chats with Martin and Mary in the Safer Neighbourhoods Unit and get a visit from Jerome at 11am – previewed by his text message “Ok tell the nurses 007 is coming”!! I get a 30 minutes infusion of Methylprednisolone after lunch and find that both Henrys have gone! This is followed by the full 30mg dose of Campath over 3 hours, but which we shorten by 20 minutes. Before I have this first full dose I ask Sister Laetitia to say a prayer with me, which she starts in song. It is wonderful. So, everything has gone fine with the Campath build-up and, better than that, am told that my white blood count went down from 225 on Monday to 67 yesterday – I had no idea my count was that high! I have kept my weight at 79kgs.
Thursday 1st February 2007
I am up and doing at 6am, getting my 200mgs of Itroconozole at 6.30am for my sins. In addition to this, the Corsodyl, Nystatin and Aciclovir, my medication is also 20mg of Omeprazole and 480mg of Septrin (both once daily). I see Dr. Steve Devereux on his rounds this afternoon surrounded by his team. He tells me that the programme is ok and that I will start my 4 weeks of Campath from next Monday 5th February, irrespective of the completion of the Methylprednisolone by Saturday, and that the next week-long session of Methylpred will be at Brighton after those 4 weeks of Campath have been completed. Tessa drops by with some Tabasco sauce and Shwartz pepper to add flavour to my food, especially the soups. Had a visit at 4pm from Peter, ahead of his going to the RAC Club, Pall Mall for one of his regular Cornhill Club dinners – with Sir Trevor McDonald as guest speaker. He arrived as I was starting my 10mg build-up dose of Campath, which I was having over 2 hours and from which I had no ill effects. This was followed by the first of 2 units of blood I was due to have. My taste buds are starting to go awry. Peter’s clementines taste awful and my idea of lucozade was a waste of time. Between us, Samuel and I have coined the expression “the power of positive thinking” as a means of helping us deal with our problems. I suspect I used it first but he has latched on to it and bats it back to me. I hope it works for us both! As a consequence I decided that if I ever wrote up my hospital and CLL experiences into – say - a web log, then I would dedicate it to Samuel and “the power of positive thinking” ! The Methylprednisolone is having some strange effects. Tonight I am now not ready for sleep until after 1am, sitting up doing sudoku and reading City of God by Paulo Lins – what a book!
Wednesday 31st January 2007
A “red letter” day - Tina has come up to visit !! She would have been here from day 1 if I had let her, but with my hospitalisation starting off so low key, it didn’t seem to make sense. By now it looks as if I could be here anywhere between 5 and 7 nights! And I now have enough clothes to see me through whatever. This includes Tina – much against her will - bringing me my tracksuit bottoms! - far more comfortable for me to wear than my cords, or any other of my trousers for that matter. Tina has brought me a present bag from Viv Tuffin at work – she is such a lovely person! I text messaged a thank you to her later. Dr. Sarah runs through the programme again, after the hiccup of yesterday. It seems that things had got lost in translation between Steve Devereux’s “piece of paper” diagram and her putting it into a more formal plan. She also explains some of the possible side effects of Campath – fever and shakes - hence the need for a three day build-up to familiarise the body to its potential impact. Tessa Arscott also visits, all the way from the annex along the road and later on Jim Rodgers calls by in between dealing with his current inter-Parliamentary delegation. At 6pm I get a 3mg dose of Campath after my 2nd day dose of Methylprednisolone. I feel light-headed after the Methylpred. – the consultant’s abbreviation so it must be ok! - followed by tired eyes, seeing yellow in what is normally white and my eyes are focussing much more slowly. I later find that I get involuntary hiccoughs. I don’t appear to have any effects from the Campath. I hear from Daphne that unfortunately she has been told she is not a blood tissue type match for me. My ward friends include Danny, a CCTV worker from Dartford, with Hodgkins Disease, Samuel and two older men.
Tuesday 30th January 2007
In preparation for the start of my treatment, I am introduced to some of the medication I will be living with for the next few weeks or so – Corsodyl mouthwash and Nystatin anti-fungal liquid (four times daily) and the delightful anti-viral Itraconozole (fortunately only twice daily – ugh!). (Editorial Note: If only it was to be "for the next few weeks or so"! It transpires that I live with these medications for at least a year.) This is followed by the taking of MRSA swabs, to make sure I am not bringing anything nasty into KCH. I have to do one myself – eeeek!! My Aciclovir is increased from 200mgs to 400mgs. Talking of introductions, I am now a little more familiar with the rather primitive toilet and shower room facilities that are situated at the bottom end of the ward. Well, it is a Victorian hospital after all!
I find my “interesting” heart beat being checked by three more doctors who were imminently taking a medical examination. Apparently I may have what is known as a mitro valve prolapse - nothing serious it seems but it gives a slight echo to the second heart beat, which can be picked up by attentive ears on the stethoscope. I have been booked down for an echo cardiagram at some stage in the near future. I sign numerous consent forms – for the second time if my memory serves me correctly! - and then have the deadly bone marrow sample and biopsy administered by the gentle hands of Dr. Sarah. This is no. 6 in my CLL career to date and no more pleasant than the others. I have a canula fitted into my left forearm after four abortive attempts to find a suitable vein in my right!! Having waited for most of the day, at 7pm my first dose of Methylprednisolone is started. At 8.30pm nursing changeover time there is a meaningful professional discussion on whether I should be given my first “build-up" dose of Campath this evening. The night duty staff nurse wants to read the protocol for it and there isn’t a copy available, so “no” we wait to tomorrow.
The Inpatient Hospital Experience
Monday 29th January 2007
“Bring a bag for 2 or 3 nights”, I was told. I packed for 4 nights and it turned out to be a total of 5! I was in Davidson Ward from Monday 29th January until 2pm Saturday 3rd February – and what a wonderful experience it turned out to be my having never spent more than a day in a hospital before!!
I travelled up by train free as I had an extra day left on my last weekly train ticket! Spent the day having blood tests, an ECG, CT scan and an x-ray, then admitted into Davidson Ward, weighing in at 78kgs. I am in a side ward of 5 beds, all taken. Surprise dinner tonight of a very tasty chicken tikka marsala, delivered by the lovely Sister Laetitia Oluigbo, a Nigerian nun from the Sisters of Jesus the Saviour. The hospital menu is the same every day, but it is large and varied, including English, vegetarian, Halal, Kosher, Caribbean and “soft” food, most of which I was to try. The night duty doctor declared that I had “an interesting heart beat” - more about that later. Went in with the leftovers of a cold - and a cough mainly at night, which is very unpleasant for me and must have been a nuisance for the others. I spend several nights sleeping as upright as possible. Fortunately after three nights it was gone!
“Bring a bag for 2 or 3 nights”, I was told. I packed for 4 nights and it turned out to be a total of 5! I was in Davidson Ward from Monday 29th January until 2pm Saturday 3rd February – and what a wonderful experience it turned out to be my having never spent more than a day in a hospital before!!
I travelled up by train free as I had an extra day left on my last weekly train ticket! Spent the day having blood tests, an ECG, CT scan and an x-ray, then admitted into Davidson Ward, weighing in at 78kgs. I am in a side ward of 5 beds, all taken. Surprise dinner tonight of a very tasty chicken tikka marsala, delivered by the lovely Sister Laetitia Oluigbo, a Nigerian nun from the Sisters of Jesus the Saviour. The hospital menu is the same every day, but it is large and varied, including English, vegetarian, Halal, Kosher, Caribbean and “soft” food, most of which I was to try. The night duty doctor declared that I had “an interesting heart beat” - more about that later. Went in with the leftovers of a cold - and a cough mainly at night, which is very unpleasant for me and must have been a nuisance for the others. I spend several nights sleeping as upright as possible. Fortunately after three nights it was gone!
My CLL Journey - The Crunch
30 December 2006
My leukaemia condition has recently undergone a serious change and has taken on a much more aggressive form. After two years of not having to have treatment (from October 2004 to October 2006), my quarterly consultant’s check-up on 30th October showed that, whilst the Wbc and Hbn were 8.9 and 10.1 respectively, my white cells were “all over the place”. That was the technical term my consultant, Dr Paul Hill, used!! The problem is that the returning cancer in my bone marrow has caused a condition called “protein p53 defect”. This in turn has attacked two particular chromosomes, bringing about – the official term is - “17p and 11q deletions”. These chromosomes contain the memory for all the white cells. As I understand it, they would not now be able to respond to any further invasion of cancerous cells, because they would not be able to recognise them and I would become increasingly vulnerable to infection. Consequently the medical response has to be as aggressive as the form of the cancer’s return.
I have been referred to a consultant, Dr. Steve Devereux, at Kings College Hospital, South London, by my local consultant. Tina and I saw him on Wednesday, 27 December. It was a rather tough session, albeit very professionally handled and included a very helpful intervention by the bone marrow transplant co-ordinator, Stephen Lang. The plan is to start intra-venous chemotherapy on or about Monday 15th January. This will be a treatment programme of between 8 and 16 weeks, initially at Kings, but possibly moving to Brighton after week 4. It will be a combination of 2 drugs, Methylprednisolone (a steroid) and Campath (an antibody) whose use together is relatively recent, but has been found to be very effective. The Methylprednisolone is given to me for 5 days in weeks one, five, etc. The Campath is given to me 3 days per week each week. There is a probability that I will be able to self-inject the Campath from week 5 at home and go to the Royal Sussex County Hospital, Brighton for the Methylprednisolone. Apparently the self-injecting is similar to a person with diabetes having to self-inject on a routine basis. I expect to travel daily to Kings for those initial weeks, but we will have to see how it goes. I will be participating in a national clinical trial of the simultaneous use of these two drugs – that sounds interesting in itself as it appears there are only about 15 on it. The chemo will be quite aggressive as it has to fully clear out the cancer from my bone marrow. On its own, that treatment would be to give me a remission of about a year.
About 4 to 6 weeks after finishing this 8 weeks (or more) of chemo, I should have a bone marrow transplant from a donor. They are testing my sister, Daphne, and brother, Peter, for a blood tissue type match – there is a 25% chance of success there. If unsuccessful, they will search the Anthony Nolan bone marrow donor bank and others, both here and abroad, with – we are told – a 66% chance of finding a matching donor. The bone marrow transplant process is incredible. The donor gives blood from which the stem cells are extracted and then gets the rest of the blood back, all in one continuous loop – as it were. (Unfortunately it turned out that neither Daphne nor Peter proved to be a match.)
I would receive the stem cells by way of transfusion in Kings as an in-patient. That will probably only take a day, but I will then have to remain there for 4 to 6 weeks, in an infection free environment, while the “engrafting” process takes place inside my bone marrow. This is the tricky bit as they will have to constantly monitor me for reactions, possible side effects and infections. Unfortunately all of this comes with risk attached. There is a possibility of the new stem cells identifying the host body as “foreign”, resulting in disease, which will have to be treated. However it has a risk of 20% fatal consequences. The good news is that there is a 40 - 50% chance of a complete cure – and I guess a 30 - 40% chance of a stalemate situation. The 4 to 6 weeks hospitalisation is then followed by a 6 month recuperation period at home, but subject to regular tests and monitoring as well. During this time and from the start of the earlier chemotherapy to my admission for the transplant procedures, I will be very vulnerable to infections of all sorts and will therefore have to avoid “risky” environments, such as buses, trains, large crowds, restaurants, pubs, etc.
If no donor can be found, there is a further transplant option of using my own bone marrow. Having had the 8 weeks chemo, they extract bone marrow from me, do some more clever stuff and then give it back. The idea is that the chemo should have left me with bone marrow clear of cancer. However, they say they cannot be 100% certain that the returning bone marrow will be totally cancer free and the whole thing just starts off again.
The real crunch came when Steve Devereux told us that, without any treatment, my mean life expectancy would be about 3 years. So, there is no option but to go for the bone marrow transplant and hang on to the 40 - 50% success rate as our goal for the future. One of the effects of the return of my leukaemia has been the lowering of my red cells count, making me anaemic and lacking in energy. I had a transfusion of 2 units of blood in late November and another 3 units on Friday 29 December, making me feel a lot better immediately! This was done at Princess Royal Hospital, Haywards Heath.
One good thing about all this coming around this time is that we have just had a wonderful Christmas with our family. Anna, Nick and Eva were down from Mull until the 29th and, of course, Matthew, Charrise and the girls are right at hand. So we have had the immediate comfort and support of those closest to us. We also have a many close friends, both through our church, our extended family or otherwise, and we have had offers of help with travel, London-based accommodation, and lots of prayers and good wishes. It has been all so very heartening.
Of course this news has had knock-on effects with other parts of my/our life. Apart from the avoidance of risky situations and environments during and after my treatment, I have been told that I should write off most of the year as far as work is concerned, although that might depend on the nature and timing of any opportunities to do some. Consequently I will have to stop work once I start the chemotherapy and I am not sure if and when I might be able to go back. However, there are so many indeterminables attached to all of this, you never can tell. I have really enjoyed these past 7 months working in London with the Met, doing something so interesting and which I feel has been so worthwhile. If I have to stop work now, I can look back on a time, albeit fairly short, but which has been very fulfilling.
Fortunately we managed to have a week’s holiday in La Gomera from 3 January, but we have had to put on hold our July celebration plans for Tina’s 60th and our 40th wedding anniversary. Maybe it could still work out okay, but at this moment it looks a little unlikely - we will have to wait and see.
Tina and I saw Dr Steve Devereux again on 12th January - my Wbc: 78; Hbn: 10.2. – with news that he needed to make a special application to get me on the clinical trial as the official number required had been filled. The start of my treatment would therefore be delayed until later in the month. So we hadn’t needed to bring forward our holiday on La Gomera and spend that extra £600 in order to move it – Doh !!! He also advised that I should put any urology investigations on hold, despite my referral resulting in an appointment in January, as it seems you can have CLL in the bladder and that might have been the reason for the urinary infection. So with a couple of weeks spare and after saying goodbye to everyone at work before our holiday on La Gomera, I went back to Empress State Building and the Safer Neighbourhoods Unit for another two weeks including joining unit advisory visits to Islington and Waltham Forest.
My leukaemia condition has recently undergone a serious change and has taken on a much more aggressive form. After two years of not having to have treatment (from October 2004 to October 2006), my quarterly consultant’s check-up on 30th October showed that, whilst the Wbc and Hbn were 8.9 and 10.1 respectively, my white cells were “all over the place”. That was the technical term my consultant, Dr Paul Hill, used!! The problem is that the returning cancer in my bone marrow has caused a condition called “protein p53 defect”. This in turn has attacked two particular chromosomes, bringing about – the official term is - “17p and 11q deletions”. These chromosomes contain the memory for all the white cells. As I understand it, they would not now be able to respond to any further invasion of cancerous cells, because they would not be able to recognise them and I would become increasingly vulnerable to infection. Consequently the medical response has to be as aggressive as the form of the cancer’s return.
I have been referred to a consultant, Dr. Steve Devereux, at Kings College Hospital, South London, by my local consultant. Tina and I saw him on Wednesday, 27 December. It was a rather tough session, albeit very professionally handled and included a very helpful intervention by the bone marrow transplant co-ordinator, Stephen Lang. The plan is to start intra-venous chemotherapy on or about Monday 15th January. This will be a treatment programme of between 8 and 16 weeks, initially at Kings, but possibly moving to Brighton after week 4. It will be a combination of 2 drugs, Methylprednisolone (a steroid) and Campath (an antibody) whose use together is relatively recent, but has been found to be very effective. The Methylprednisolone is given to me for 5 days in weeks one, five, etc. The Campath is given to me 3 days per week each week. There is a probability that I will be able to self-inject the Campath from week 5 at home and go to the Royal Sussex County Hospital, Brighton for the Methylprednisolone. Apparently the self-injecting is similar to a person with diabetes having to self-inject on a routine basis. I expect to travel daily to Kings for those initial weeks, but we will have to see how it goes. I will be participating in a national clinical trial of the simultaneous use of these two drugs – that sounds interesting in itself as it appears there are only about 15 on it. The chemo will be quite aggressive as it has to fully clear out the cancer from my bone marrow. On its own, that treatment would be to give me a remission of about a year.
About 4 to 6 weeks after finishing this 8 weeks (or more) of chemo, I should have a bone marrow transplant from a donor. They are testing my sister, Daphne, and brother, Peter, for a blood tissue type match – there is a 25% chance of success there. If unsuccessful, they will search the Anthony Nolan bone marrow donor bank and others, both here and abroad, with – we are told – a 66% chance of finding a matching donor. The bone marrow transplant process is incredible. The donor gives blood from which the stem cells are extracted and then gets the rest of the blood back, all in one continuous loop – as it were. (Unfortunately it turned out that neither Daphne nor Peter proved to be a match.)
I would receive the stem cells by way of transfusion in Kings as an in-patient. That will probably only take a day, but I will then have to remain there for 4 to 6 weeks, in an infection free environment, while the “engrafting” process takes place inside my bone marrow. This is the tricky bit as they will have to constantly monitor me for reactions, possible side effects and infections. Unfortunately all of this comes with risk attached. There is a possibility of the new stem cells identifying the host body as “foreign”, resulting in disease, which will have to be treated. However it has a risk of 20% fatal consequences. The good news is that there is a 40 - 50% chance of a complete cure – and I guess a 30 - 40% chance of a stalemate situation. The 4 to 6 weeks hospitalisation is then followed by a 6 month recuperation period at home, but subject to regular tests and monitoring as well. During this time and from the start of the earlier chemotherapy to my admission for the transplant procedures, I will be very vulnerable to infections of all sorts and will therefore have to avoid “risky” environments, such as buses, trains, large crowds, restaurants, pubs, etc.
If no donor can be found, there is a further transplant option of using my own bone marrow. Having had the 8 weeks chemo, they extract bone marrow from me, do some more clever stuff and then give it back. The idea is that the chemo should have left me with bone marrow clear of cancer. However, they say they cannot be 100% certain that the returning bone marrow will be totally cancer free and the whole thing just starts off again.
The real crunch came when Steve Devereux told us that, without any treatment, my mean life expectancy would be about 3 years. So, there is no option but to go for the bone marrow transplant and hang on to the 40 - 50% success rate as our goal for the future. One of the effects of the return of my leukaemia has been the lowering of my red cells count, making me anaemic and lacking in energy. I had a transfusion of 2 units of blood in late November and another 3 units on Friday 29 December, making me feel a lot better immediately! This was done at Princess Royal Hospital, Haywards Heath.
One good thing about all this coming around this time is that we have just had a wonderful Christmas with our family. Anna, Nick and Eva were down from Mull until the 29th and, of course, Matthew, Charrise and the girls are right at hand. So we have had the immediate comfort and support of those closest to us. We also have a many close friends, both through our church, our extended family or otherwise, and we have had offers of help with travel, London-based accommodation, and lots of prayers and good wishes. It has been all so very heartening.
Of course this news has had knock-on effects with other parts of my/our life. Apart from the avoidance of risky situations and environments during and after my treatment, I have been told that I should write off most of the year as far as work is concerned, although that might depend on the nature and timing of any opportunities to do some. Consequently I will have to stop work once I start the chemotherapy and I am not sure if and when I might be able to go back. However, there are so many indeterminables attached to all of this, you never can tell. I have really enjoyed these past 7 months working in London with the Met, doing something so interesting and which I feel has been so worthwhile. If I have to stop work now, I can look back on a time, albeit fairly short, but which has been very fulfilling.
Fortunately we managed to have a week’s holiday in La Gomera from 3 January, but we have had to put on hold our July celebration plans for Tina’s 60th and our 40th wedding anniversary. Maybe it could still work out okay, but at this moment it looks a little unlikely - we will have to wait and see.
Tina and I saw Dr Steve Devereux again on 12th January - my Wbc: 78; Hbn: 10.2. – with news that he needed to make a special application to get me on the clinical trial as the official number required had been filled. The start of my treatment would therefore be delayed until later in the month. So we hadn’t needed to bring forward our holiday on La Gomera and spend that extra £600 in order to move it – Doh !!! He also advised that I should put any urology investigations on hold, despite my referral resulting in an appointment in January, as it seems you can have CLL in the bladder and that might have been the reason for the urinary infection. So with a couple of weeks spare and after saying goodbye to everyone at work before our holiday on La Gomera, I went back to Empress State Building and the Safer Neighbourhoods Unit for another two weeks including joining unit advisory visits to Islington and Waltham Forest.
Introduction (Part 3)
2005 - 2006
During the next two years I had regular quarterly check-ups with Dr Paul Hill and required no treatment with my blood counts maintaining the levels of October 2004. Between March 2005 and July 2006 my Wbc went from 3.1 to 5.3 and my Hbn went from 14.5 to 12.6. My weight had ranged between 84.5 and 87kgs. Sadly, Tina’s mother, Eve, died in September 2006 from liver cancer. She had been struggling with heart and circulation problems and had been in and out of hospital for some years. Eventually she was admitted to her local hospital in Dartford in July, again with circulation problems, but after dramatically losing weight in the space of two weeks was diagnosed with cancer. She stayed in hospital until she died. Following on from her brother George’s dying earlier in the year, this was not looking like a good year for our family. We did have good news though. Our daughter, Anna, had a baby girl, Eva, in August – her first.
However in early September 2006 I contracted a urinary infection, which was so painful, I had to take a week off work. This dragged on to the end of October with varying degrees of discomfort and my having to take three different anti-biotics, before it eventually fizzled out. During this time me somehow managed to have a 2 week holiday on our favourite Greek Island of Symi. Unfortunately around this time and before my next check-up on 30th October, the glands in my armpits had started to swell and I started having night sweats again. I knew my CLL was back! That ends the historical catch-up in my log.
The next entries are written mainly in the present tense as they were composed either as events unfolded or so close in time to their occurring that it made to sense to write in that way.
During the next two years I had regular quarterly check-ups with Dr Paul Hill and required no treatment with my blood counts maintaining the levels of October 2004. Between March 2005 and July 2006 my Wbc went from 3.1 to 5.3 and my Hbn went from 14.5 to 12.6. My weight had ranged between 84.5 and 87kgs. Sadly, Tina’s mother, Eve, died in September 2006 from liver cancer. She had been struggling with heart and circulation problems and had been in and out of hospital for some years. Eventually she was admitted to her local hospital in Dartford in July, again with circulation problems, but after dramatically losing weight in the space of two weeks was diagnosed with cancer. She stayed in hospital until she died. Following on from her brother George’s dying earlier in the year, this was not looking like a good year for our family. We did have good news though. Our daughter, Anna, had a baby girl, Eva, in August – her first.
However in early September 2006 I contracted a urinary infection, which was so painful, I had to take a week off work. This dragged on to the end of October with varying degrees of discomfort and my having to take three different anti-biotics, before it eventually fizzled out. During this time me somehow managed to have a 2 week holiday on our favourite Greek Island of Symi. Unfortunately around this time and before my next check-up on 30th October, the glands in my armpits had started to swell and I started having night sweats again. I knew my CLL was back! That ends the historical catch-up in my log.
The next entries are written mainly in the present tense as they were composed either as events unfolded or so close in time to their occurring that it made to sense to write in that way.
Introduction (Part 2)
2004
Despite being a year of stronger chemotherapy, 2004 turned out to be much easier than 2003 and totally uneventful as far as “downsides” were concerned. The year started for me with a clinic with Dr. Paul Hill on 5th January. My lymph glands were up, particularly the twin “Henrys” in my armpits, I had night sweats, my white cell count was 17.5 and I weighed 82 kgs. However, we were determined to set the right tone for the year by repeating last January with a week on La Gomera – which was great once again. Bone marrow samples and a CT scan soon followed and I started treatment on fludarabine and cyclophosphomide on 23rd February with my white cell count now up to 35.9. The immediate effect of this new cocktail of chemo was the considerable shrinkage after only a week of the twin “Henrys”, quite something after a whole year of living with them the size they were - in fact they completely disappeared by May after 3 doses of treatment. At my next clinic on 5th March my white cell count had dropped to 2.2. I had a total of 6 courses of chemo through the year from 23rd February and September, with my white cell count usually between 2.1 and 3.5, except for one occasion of only 1.0. My weight went up from 80kgs in March to chubbier 84kgs in October! After the customary bone marrow sample and CT scan, I was told on 30th November that I did not need any further treatment from now until further notice – as it were. My final blood counts were: Wbc: 3.2 and Hbn: 13.4.
We had two 2 week holidays, on the Canal du Midi and in the Lot during July with Linda, Paul, Tom and Joe – Linda is Tina’s younger sister - and to Tilos in October. Although we didn’t have weekends away abroad, we did have plenty away at family and friends and vice versa, plus lots of social and work events, etc. We also went to evening jive classes! – and had fun!!
Despite being a year of stronger chemotherapy, 2004 turned out to be much easier than 2003 and totally uneventful as far as “downsides” were concerned. The year started for me with a clinic with Dr. Paul Hill on 5th January. My lymph glands were up, particularly the twin “Henrys” in my armpits, I had night sweats, my white cell count was 17.5 and I weighed 82 kgs. However, we were determined to set the right tone for the year by repeating last January with a week on La Gomera – which was great once again. Bone marrow samples and a CT scan soon followed and I started treatment on fludarabine and cyclophosphomide on 23rd February with my white cell count now up to 35.9. The immediate effect of this new cocktail of chemo was the considerable shrinkage after only a week of the twin “Henrys”, quite something after a whole year of living with them the size they were - in fact they completely disappeared by May after 3 doses of treatment. At my next clinic on 5th March my white cell count had dropped to 2.2. I had a total of 6 courses of chemo through the year from 23rd February and September, with my white cell count usually between 2.1 and 3.5, except for one occasion of only 1.0. My weight went up from 80kgs in March to chubbier 84kgs in October! After the customary bone marrow sample and CT scan, I was told on 30th November that I did not need any further treatment from now until further notice – as it were. My final blood counts were: Wbc: 3.2 and Hbn: 13.4.
We had two 2 week holidays, on the Canal du Midi and in the Lot during July with Linda, Paul, Tom and Joe – Linda is Tina’s younger sister - and to Tilos in October. Although we didn’t have weekends away abroad, we did have plenty away at family and friends and vice versa, plus lots of social and work events, etc. We also went to evening jive classes! – and had fun!!
Introduction (Part 1)
This web log is dedicated to my wonderful wife, Tina; my daughter and son, Anna and Matthew, with whose help I have got through these past years. It is also dedicated to Samuel Marfo, sometime in-patient in Davidson Ward, Kings College Hospital, Denmark Hill, London with whom I coined this motto -
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.
"never underestimate the power of positive thinking"
----------------------
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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