Transferred to Kings

Monday 13th to Sunday 19th August 2007

Sunday 19th August 2007

I am 77 kgs yet again today but notice that the fluid in my legs is much reduced. I realise that my only exercise is going down to the shop in the morning to get my newspaper. I resolve that I must do some leg strengthening exercises as my thighs and calves still feel weak. Tina is here at 1pm for a few hours and while here sees the attempts to take a blood sample for type matching as I need to be transfused. Eventually a sample is taken at the sixth attempt - painfully from the inside of the wrist. I am beginning to feel like a pin cushion! My blood results today are - Wbc: 0.4; Neut: 0.13;Lymph: 0.26; Hbn: 7.8; PLT: 37 - hence the need for the transfusion. Father Luke comes to give me Holy Communion and at 7.15pm Jane and Richard turn up for a visit. Somehow they contrived to get here via the south circular, which took them ages. They have never been any good at navigation! - but it was nice to see them. At 9.30pm I am started on the first of the two units of blood I am to have, but my cannula - once again - is not destined to last more than 24 hours. I have to be re-cannulated on the inside of my right arm and it seems to work at first but my vein aches throughout the second unit. I am getting very thin veins! My transfusion finishes at 2.30am and I get to bed at 3am.

Saturday 18th August 2007

I am 77 kgs again today, but I think I still have fluid in my legs to get rid of. I am seen by (Dr) Emma who is pleased with how things are going, despite my neutrophil count being pretty abysmal. My full results are - Wbc: 0.4; Neut: 0.12; Lymph: 0.26;Hbn: 8.5; PLT: 37. The consultants have discussed whether they could give me anything else to aid my neutrophil recovery or reduce the impact of the Campath. I should hear more of that soon. I get a real surprise at lunchtime when, completely out of the blue, Daphne walks in to visit me. It is fantastic! She had to be up about 4.30am this morning to get to Bangor to catch the train. I have to confess to being close to a tear! She is able to stay for three hours before leaving to get her train from Euston. Apparently Tina knew she was coming but kept it a secret. Daphne even text messaged me from the entrance lobby downstairs in reply to my last text to her to make the surprise even greater! That gave me a great lift for the rest of the day. I learn from Michael, the ward volunteer, that the Davidson ward refit will include the provision of wifi. Now that will be good! Yet another cannula doesn’t last and I have another inserted, this time on the back of my left hand - ouch!!

Friday 17th August 2007

My weight is down 2 kgs to 77 kgs this morning and my breakfast medicine cocktail has been reduced from 8 to 2 items. I have excellent news from Lara that the macrophages are no longer in hyper-active mode. The bone marrow is creating red cells, platelets (a bit), but no neutrophils yet and there is no CLL in there. They have still to examine the bone biopsy - or trephine - to confirm no CLL is lurking on the inside of the bone. Steve Devereux thinks that the neutrophils are being suppressed by a residue of Campath in my body. I am told that Campath can remain in the body for ten weeks after the cessation of its use - potentially another six weeks. They want to keep me here to continue giving me anti-biotics for my infected thumb and the thinking is to have the transplant as soon as possible - maybe in two to three weeks. I conclude from this that the timeframe for the transplant is really being dictated by my infected thumb, in that until it is cleared up it is attracting what neutrophils I do have to deal with the infection there. That, combined with the Campath effect stubbornly holding down neutrophil recovery as well, I am wondering what will come first - neutrophil recovery or thumb infection clear-up and how long will this take? Tina is here at 1.30pm for a couple of hours and I then send out “good news” text messages. My blood results today are still not good - Wbc: 0.3; Neut: 0.1; Lymph: 0.19; Hbn: 8.7; PLT: 35; CRP: 14. I am self injecting the GCSF in my thighs in preference to the rather painful injections by the nurses in my upper arms. I am finding the food to be not so good as I remember it from February and the choices more limited compared with the RSCH. It doesn’t take long to run through the options and with the choice of puddings, for example, just two - with no ice cream (!) - it is soon going to get boring.

Thursday 16th August 2007

I am awake at 6.20am for the taking of a blood sample and my anti-biotics. My weight is 79 kgs - no doubt all about excess fluid. I am now entrusted with my own Itroconozole, which I can keeping the fridge to make it as palatable as possible. With the food Tina brought me yesterday, I have a better breakfast this morning - cornflakes, yogurt, honey and cut peach. Since being here I have felt a bit like a prisoner in a cell and I do not feel I have the same freedom of movement I enjoyed down at Brighton. This comes mainly from having to have my door shut all the time. However, I am beginning to feel my feet now and I am able to escape from the ward at 10am to walk down to the shop and buy a newspaper. I have to wear a mask, which I must wear at any time that I leave my room; ward rules - understandable for transplant patients. I still have a lot of fluid on my legs, very noticeable when climbing back up the stairs from the ground floor. Later in the morning I get a visit from Jo. She is in the process of vacating their house in Fulham with the removal / container people in today. She will be taking Jules and Jane with her to Peter and Suzanne’s tomorrow and they fly out to HK next Wednesday. It is lovely to see her before she goes. I have a CT Scan in the afternoon and am then seen by consultant Dr. Steve Schey - pronounced “Sky” - plus Drs Lara and Kat. The current view is that we should watch and wait until anything is identified that needs a response, rather than attempt any further treatment - which might be counter-productive at this stage. I have a visit from Tessa at 5pm and then Father Luke - the “resident” Catholic chaplain - at 7.30pm, as I had requested contact with a priest.

Wednesday 15th August 2007

I have to get the hang of a different regime here, so I wait for things to happen and then I can fit my routine - such as it ever is(!) - into the one in the ward. Breakfast is pretty basic and I just have toast and a very weak tea. We will improve on that tomorrow! I see Dr Lara this morning. Good to see a familiar face from February. My Furosimide dosage is doubled to help sort out the fluid in my legs. I am still amazed how that has happened. I am also introduced to a ward requirement of measuring and recording hourly liquid intake and outtake - with a plastic measuring jug supplied for the latter purpose! Apparently this will be even more important when I am here for my transplant. I get some text messages out letting friends and family know I am up here now. Tina and Matthew arrive at 12.30pm for a visit and have to wear a plastic apron and go through several hand washing rituals. Now that is a very reassuring practice, but not surprising considering the state of health of patients on this ward, struggling with post transplant disease, etc. It seems that, no sooner has Tina and Matthew sat down, the door bursts open and in stomps Tim Godwin, complete with plastic apron - just about fitting him! What a great surprise and how nice. He must have got my text message, checked his diary, sorted out his desk and come straight over from the Yard. We have great chats for about half an hour and then off he dashes. Tina and Matthew stay until about 3.15pm, by which time I have seen Lara again and discuss the need for another bone marrow sample this afternoon. Because I have had lunch I cannot have a proper sedative, but I am given it in tablet form instead. Lara also says that it is difficult to tell yet whether the Vigam has been effective; they also want the sample in order to check for any other infections I may have which could be causing the macrophages to be so overactive. The RSCH slides of last week’s bone marrow sample have not arrived yet. I have my sample taken about 4pm but the sedative does not seem to have any effect, albeit it is not as painful an experience as it has sometimes been. My blood results are - Wbc: 0.61; Neut: 0.14; Lymph: 0.45; Hbn: 9.9; PLT: 32. My weight this morning is 79 kgs.

Tuesday 14th August 2007

I am 78 kgs today - two kgs up from yesterday! I have my early morning anti-biotics and find the cannula is painful just 36 hours after being inserted. I am recannulated later in the morning. I get a morning visit from Jim and he witnesses the fiddly business of having six small bottles of Vigam on the intra-venous drip. My blood results today are -Wbc: 0.4; Neut: 0.0; Lymph: 0.3; Hbn: 9.5; PLT: 25; and CRP: 17. At 2.40pm I am told that there is a bed free at Kings and that I have 30 minutes to pack as a car will be ready to take me there. This is soon changed to an hour as it is decided I should travel in a paramedic ambulance. Not quite sure why, but the crew turn up with a stretcher for me to lie on! We leave the RSCH at 4pm and have a horrendous journey, with the M25 and M23 at standstills due to a turned over lorry. Our maximum two hour journey takes three and a half hours! I arrive at the David Mitchell Unit with enormous fat legs, full of fluid. Did the journey really do that? I certainly don’t recall my legs being up earlier today, although I had put on weight since yesterday. This ward is the specialist ward where I will have my transplant. There is a strict regime for patients and visitors and the first thing I notice is that I don’t feel I can wander about with the freedom I have had in the Haematology ward at the RSCH. I have my own room - no. 12 - but unsurprisingly it is not so spacious as my recent experience. The bathroom certainly is no match, except the floor cannot flood! On the plus side, I have a small fridge, good enough for small drinks, the water jug, pots of yogurt and a few bottles of Guinness. The view is non-existent. I look straight out at the side walls of Davidson ward, about 12 feet away together with its scaffolding, as it is being gutted and completely refurbished. I have blood samples taken at 10.15pm and am checked over by the night duty doctor, Rachel, whom I seem to remember from my time on Davidson ward in February. I think it was Rachel who was very good with the cannula. I have my antibiotics and settle down for the night at midnight.

Monday 13th August 2007

There are no changes in my overall situation although my thumb appears to be slightly better - or is that wishful thinking? My weight is 76 kgs again and my blood results are -Wbc: 0.5; Neut:.0.1; Lymph: 0.4; Hbn: 9.9; PLT: 24; and CRP: 23. We are still waiting for news from Kings on bed availability, but nothing transpires. It is my fifth day on Vigam out of the six days of treatment required and I am wondering what a move to Kings will bring if the treatment for the macrophages has finished. Still I guess it would be good for them to see the problem at first hand. Tina is joined by Anna, Nick and Eva as my only visitors today.