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.