Still in Hospital - And it’s Week 3

Monday 30th July to Sunday 12th August 2007

Sunday 12th August 2007

A quiet day. Peter’s birthday, the start of the grouse shooting season (as ever!) and we also moved to Hurst 26 years ago today. My weight is 76 kgs, another move upwards. I see Vicky Tindall and we agree that my humb has swollen a bit more. I have a pre-lunch Guinness with Tina and spend the afternoon typing a long overdue update email to Mavis. Unfortunately after well over an hour of painstaking typing, my screen goes dead and I lose the whole email. l had inadvertently not connected to the mains and, concentrating so much on my typing, I have forgotten to keep an eye on the battery icon. So I had to start all over again. But first it was necessary to have a calming down walk around the unit to let the steam out of me. I was livid with myself. My next blood pressure check shows me “high” - and no wonder! My blood results today are - Wbc: 0.5; Neuts and Lymphs - not separately measured; Hbn: 10.5; PLT: 28; and CRP: 29. I am in bed at midnight.

Saturday 11th August 2007

I am 74.5 kgs this morning - an increase of one and a half kilos on yesterday - and signs that my diet together with the Fortijuices are having a positive impact. I have been trying to have one mid morning, mid afternoon and then mid evening. However hard I try I never manage to prise my morning one from the nurses until 11am at the earliest, taking away my appetite for lunch, which is always at 12md - 12.10pm at the latest. This is after a breakfast that I never seem to get until about 8.30am - and which I make very filling with my yogurt, honey, cereal and fresh cut fruit, plus toast. I find out that the food team’s routine delivery ritual is to start at the far end of oncology for breakfast and end with me. But for lunch they start with me and end up at the far end of oncology. Hence the relatively short morning. Why do they do this? I made some long overdue phone calls to Mary Roberts, Nicola Chittenden and Steve Scott. I have an x-ray on my thumb to check that there is no infection gone into the bone, which it hasn’t. At the same time it is confirmed, what I have suspected for some years, that I have some arthritic degeneration in the base joint of the thumb. Nothing new there then! - but helpful nonetheless. Tina visits late afternoon, followed by Anna, Nick and Eva. I have another new cannula fitted in the evening ahead of my Vigam and anti-biotics. I hear there are no beds at Kings yet for tomorrow. Perhaps Monday or Tuesday there will be one. My blood results today are - Wbc: 0.9; Neut: 0.0.; Lymph: 0.8; Hbn: 11.1; PLT: 36; and
CRP: 43.

Friday 10th August 2007

My weight today is 73 kgs - another steady increase. I see Tim Corbett this morning. He has detected excessive macrophage activity in my bone marrow - which is otherwise pretty empty as previously stated. These macrophages are the scavengers in the bone marrow and they get rid of dead cells and the dross in the bone marrow. However they appear to have go beyond their remit and are gobbling up the neutrophils. My analogy is that they are the road sweepers in the bone marrow but have taken it into their heads to go down the street breaking all the windows! He believes this could have been caused by the recent CMV re-activation and the Valganciclovir treatment for it. The clinical term for for the syndrome is Haemophagocytosis - now there’s a mouthful! The treatment suggested by Kings is doses of immuno-globulin (Vigam) given intra-venously. Kings have suggested that I should be transferred up to them so that can keep an eye on me, given that this is a bit of a complication on top of my severe neutropenia. Besides these macrophages have to be back under control before my transplant could go ahead. In the overall scheme of things, my infected thumb appears to be just a sideshow. Having said that, the small scab that had formed over its head has now been washed off. Tina visits at 11.15am and an hour later my blood transfusions start again, with two more units today, making four in all. I get visits from Mia Morris and Linda Bell after lunch. My anti-biotic, Tazocin, is replaced by Meropenam together with Teicoplenin. My Vigam starts at 8pm but is a really fiddly process as it only comes in small bottles and I have to have six of them as one dose, each one taking 30 minutes. My blood counts today are - Wbc: 0.4; Neut: 0.1; Hbn: 9.8; PLT: 35; and CRP: 46. I doze on the bed until 12.50am until tucking down.

Thursday 9th August 2007

It’s Eva’s first birthday! - and as it is Thursday I see Paul Hill today. He tells me that the bone marrow is “empty” - no sign of CLL (good), but no sign of neutrophils either (not so good). Paul believes that Steve Devereux will want to bring forward my transplant and not give me the six weeks break we had planned because of my low immune system. I am due to see Steve Devereux next Friday at his clinic, so I would think more will be revealed then. I am now trusted with the Itroconozole myself as the nurses keep forgetting the timings! As is the norm in hospitals, ward orderlies have to bring a jug of water at breakfast time to every patient, but it is never cold enough for me at the start and gets warmer as the day goes by. So the discovery at last that there is a chilled water machine in the entry lobby to the floor is a great find. At last I can have drinkable cold water! My mouth is now much better and I decide that I don’t need to use the Difflam mouthwash any more. I have a visit from Steve Pitt and then Sr. Peter for Holy Communion. Tina is in to see me about 4.45pm after seeing Nicola Worster, the Haemotology Nurse Specialist, for a helpful chat. My weight today has gone up to 72 kgs and my blood results are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 8.4; PLT: 41; CRP: 70. My haemoglobin level means I am in need of a blood transfusion - four units in fact - and I get the first two units this evening.

Wednesday 8th August 2007

It is a big day for visitors - Hilda and Barry, Bill Swallow, Michel and then Erik and Heather. My 7pm Tazocin is very painful, so I am recannulated after only 24 hours. Tina has a great day in London with Anna and Charrise - a late birthday present. My thumb is changing in appearance, with the crusty head flaking off to leave a very small hole. It is still swollen, red and very tender. I am 71 kgs again today. My blood counts are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 9.1; PLT: 54; and CRP: 74. The CRP reading is a big increase from yesterday and - I guess - reflects the level of infection in my thumb.

Tuesday 7th August 2007

I am 71 kgs today, so perhaps the Fortijuice is starting to work? I see Tim Corbett at 9.30am. He surmises that any neutrophils being produced are going to fight the infection in my thumb and consequently prescribes intra-veinous anti-biotics Tazocin and Teicoplanin to deal with it. He also replaces Omeprazole with Ramitodine, as the former can have immune system suppressing side effects. I am to be here for another 5 days at least to see how this treatment progresses. My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.5; Hbn: 8.4; PLT: 57; and CRP: 33. I am cannulated and have my first doses of Tazocin and Teicoplanin and then go for my Pentamidine nebulizer. This is followed by the taking of a bone marrow sample under a sedative. I hardly knew a thing, wake an hour or so later and doze for the rest of the after. I find out later that I was awake during the whole procedure, even discussing what is going on with Vicki Tindall and the nurses. The effect of the sedative is not to put the patient to sleep, but to wipe out the memory of what is being experienced. How does that happen? I don’t know but it certainly works! I send a text message out to my “health update network” of family and friends and get lots of replies including a great one from Tim Godwin, on holiday in Switzerland.

Monday 6th August 2007

Ros Johnston tells me that my white cell count is 1.3 and we are waiting for the detailed breakdown, which is subject of a manual count. If I have 0.4 neutrophils again I can go! But this is a hopelessly false dawn, because when I eventually get the breakdown - not until 6pm(!) - my neutrophils are back down to 0.1 - damn it! On top of that the white cell count is actually down as well, so where 1.3 came from - who knows. She says that my thumb needs looking at in a few days if I am discharged and may need lancing - ouch!! I have visits from Sarah and Paul and Mia Morris ahead of Tina’s coming at her usual time. My full blood results are - Wbc: 1.0; Neut: 0.1; Lymph: 0.8; Hbn: 10.3; PLT: 73; and CRP: 31. My weight today is still 70 kgs. It has been a fairly tense day waiting for, what I had hoped would be, a successful result, so - in the immortal words of the football team captain losing by a dodgy penalty - I was “gutted”. Where do we go from here? On the positive side, however, my mouth seems to be getting a bit better. I spend the evening reading.