Sunday 11th March 2007
A good night’s sleep. Up at 6.45am to start my medication, feed Tosca, get some fresh water and a cup of tea for Tina, then back to sleep – and I did sleep. Not feeling well enough to go to Mass this morning. Cold definitely with me for the weekend. The England - France rugby match at Twickenham kicked off at 3pm on a bright sunny afternoon. England’s new look team turned expectations on their heads and beat France convincingly. Both Tina and I could have been there with Richard’s party. But given how I am feeling today, there is no way that I should or could have been there. In fact had I tried, I think the consequences would have been dire for me from the hindsight of the oncoming week. I would have been frozen in the stand, would have had to keep going to the toilet every 15 - 30 minutes and could have caught something like pneumonia. Anyway, I saw the game in the warmth and sanctuary of our lounge on our new HD-ready Sony TV, but had not worked out how to record it! Dozed a bit in the evening and bed at 11.20pm. I am really leaden footed this weekend.
Breakfast: Mango and passion fruit juice (much better); yoghurt (better), Eat Natural cereal, cut pineapple, honey; water.
Lunch: Lentil and ham soup; ham, celery and raw carrot.
Dinner: Spanish pork casserole (excellent), couscous and peas; rhubarb yoghurt.
Saturday 10th March 2007
Up and feeding Tosca at 5.45am then on to the computer doing early emails – steroid effects no doubt! Feet and legs definitely back up and Mr Blobby is back as well – so diuretics resumed and those nice white compression stockings are back on with a vengeance. The steroids appear to have given me a florid, healthy complexion as well. It is somewhat deceptive as I don’t feel particularly healthy! I seem to have picked up some sort of a cold as well. For the past day I have been nose blowing and coughing up a mix of catarrh, etc. – quite a bit of it green, suggesting a possible infection. Fortunately my temperature is not high – 36.6c. I will contact Kings about all this on Monday.
I have gone off our filter water and Tina has bought me bottled instead – it is best straight from the fridge. Tina went into work for the morning. I walked up to the newsagents and butchers feeling somewhat woozy, then feet up for a while with paper and laptop. Am going to try to get this lot on to a web log today – we shall see how it goes!!! Phone calls and text messages all day and a nice visit from Sarah with flowers. Linda also sent flowers to Tina via M & S. Clarice and Clara – joined at the hip as Eve used to say! TV rugby all afternoon; TV evening after dinner then slept from 10pm to about midnight.
Breakfast: Mango and passion fruit juice (not quite right); Bio yoghurt (not right), Eat Natural cereal, cut pineapple, honey; water.
Lunch: Lentil and ham soup; banana.
Dinner: Chicken and stir fry vegetables (very nice); vanilla, ginger and choc chip ice cream – not ready for the plain chocolate yet.
Monday, 21 May 2007
Sunday, 11 March 2007
A week of steroids at Brighton
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
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
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!!
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