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.