Back in Hospital Yet Again

Saturday 21st to Sunday 29th July 2007

Sunday 29th July 2007

My weight today is 72.5 kgs and my blood results are given to me as: Wbc: 0.5;
Neut: 0.0; Hbn: 11.7; PLT: 90; and CRP: 22. I have a very quick visit from Ros Johnston and later Sister Peter gives me Holy Communion. She is a delight! Tina is here at midday and then leaves for Matthew’s to give the girlies a walk out to the park. I spend the rest of the day reading and resting.

Saturday 28th July 2007

My weight this morning is 73 kgs and today’s blood results are Wbc: 0.7; Neut: 0.1; Lymph: 0.5; Hbn: 11.7; PLT: 92; and CRP: 32. I am seen by Ros Johnston at 9am - no change. My hip abrasion has reddened and may have a slight infection there. My walk back from the newspaper shop is really hard again. I really need to strengthen my legs a lot. Tina visits at 12.30pm. I spend the afternoon reading and blogging. I am visited by Michel Olsziewski in the early evening. I finish “Bury My Heart at Wounded Knee” and move on to something less dramatic, “Lost Continent” by Bill Bryson. This was the first Bryson I ever read - when we were in New Zealand back in 1995.

Friday 27th July 2007

I am awake at 6.15am again and have my blood results by 9.15am - a record! They are Wbc: 0.5; Neut: 0.1; Lymph: 0.3; Hbn: 10.8; PLT: 68. I see John Duncan at 10.15am. He says stop the Tazocin and go on to Ciprofloxacin tablets, but no real change in my status. I have a visit from Vincent Meagher in the afternoon and then Tina is with me for an hour or so. I have an evening visit from Fr David Foley, after I eventually remembered
to call him. Sr Peter will come on Sunday. I read for the rest of the evening and get to bed at 12.30am.

Thursday 26th July 2007

I am awake at 6.15am and feeling good on the strength of three units of blood. My fourth unit is started at 7am. My weight this morning is 73.5 kgs. I am seen by Paul Hill. He states the same as John Duncan. I am profoundly neutropenic and they want to see a rise in the neutrophils before I can be discharged. He will query with Steve Devereux whether there is a need to complete the final four doses in the Campath course, given the likelihood they would probably suppress the neutrophils yet again and cause more trouble than it is worth. I have visits from Jim Rodgers and Bill Swallow. They are both suitably impressed by my surroundings! My blood results are: Wbc: 0.5; Neut: 0.2; Lymph 0.2; Hbn: 11.9; PLT: 72; and CRP: 26. My mouth has become worse with another ulcer on my gum and the overall soreness still very much there. The Tour de France has dissolved into chaos and farce with both the tour favourite - Vinokourov - plus his whole team, the Yellow Jersey, Rasmussen, and another team being kicked off for drugs violations. I doze the evening away from 9.30pm to 1am before going to bed.

Wednesday 25th July 2007

I am awake at 5.45am and reading. “Bury My Heart at Wounded Knee” is compelling
reading but immensely sad. I am 73 kgs today. I am seen by John Duncan. The GCSF and Tazocin anti-biotic are to continue. I will have to stay until my neutrophils show significant signs of improvement and there is no clear indication how long that might take. If I escape by the weekend, it may be a bonus. Doh! I mention some scratch marks on my hip which I must have done one night earlier on in this time in hospital. I am to have it dressed to avoid possible infection. There is no newspaper trolley service up here - which seems a great pity - so I walk down to the shop right at the front of the hospital. The walk back is a slog at it is all up stairs and steps. However, I need to get some strength back into my legs, so I guess it is good for me. I buy a small Lucozade - original flavour - as my mouth is tasting grotty. It doesn’t work for me. Tina arrives at 4pm and - “surprise, surprise” - she has got her camera back courtesy of Inspector Vanholme of the Ghent Police. Isn’t that brilliant! After waiting all day, at last my blood transfusion starts at 4.30pm. I receive three units by 12.30am and we stop for the night. My blood results today are: Wbc: 0.5; Neut: 0.0; Hbn: 8.6; and PLT: 63.

Tuesday 24th July 2007

We have a bright morning. My weight is 74 kgs still. I am seen by Panos. They want to keep me in until Thursday at least to see my CRP and CMV go down, especially with such a low white cell count. They will also be moving me to the Haematology Ward as they have a bed free at last. Tina arrives at 4.30pm and at the same time we learn that I have a “zero” CMV result - yippee! So stop the Valganciclovir and resume Aciclovir. At 6pm I am trundled up to Haematology on the 9th floor of the Millennium Wing - a floor above the Day Unit. I am now in the lap of luxury. I have my own room, complete with toilet and shower, plenty of space, air conditioning and a window facing north so the room temperature is good. This one of only six beds on the Haematology Ward, hence the pressure on beds previously. I get my blood results from a very helpful Staff Nurse Jason; they are: Wbc: 0.4; Neut: 0.0; Hbn: 8.2; PLT: 52; and CRP: 36. At last I am able to get my blood results in full on a daily basis without feeling I am stealing the crown jewels. It is my blood after all! I am being lined up for four units of blood tomorrow. I read and doze to 1am and then sleep well.

Monday 23rd July 2007

I sleep quite well despite my neighbour and am awake at 6.15am. I go and get my Itroconazole and am given my early dose of Tazocin. I am now comfortable walking without a zimmer. I get a new cannula inserted on my right elbow and have a visit from the ward pharmacist to run through my medications as there has been some slight confusion with the ward staff. I find this quite reassuring as I am on a ward where the staff are unfamiliar with my medical condition etc. My weight today is 74 kgs. I am seen by Ros Johnston and the team. I do not get the full details - again - but my Wbc is 0.7, I have no Europhiles, my CRP is 75 and they have received a CMV reading of 153 - down significantly from the initial 6955! The likelihood is continue with the Tazocin for two more days and then we can resume the Campath to finish the programme. I have a visit from Anna and Eva at 1.30pm - just back from Salzburg. The Staff Nurse advises not a good idea having Eva here as there is diarrhoea on the ward. Now they tell me! I ring the Clinical Trials team at Kings to warn them that I will not be finished my Campath in time for the final staging tests scheduled for a week’s time. Tina comes in at 4.30pm. It is raining! At least that keeps the temperature down in the room - and gives the seagulls outside a bit of a soaking. They queue up by the window to be fed by my neighbour’s visitors!

Sunday 22nd July 2007

I am awake at 2am after a distressing dream about Tina - more Methylpred side effects I guess - and very upsetting. I manage to get back to sleep and go through to 6am but have a sweaty episode in the middle of it. The staff nurses on the ward have taken the easy route with my medications and have left it all to me. This partly because some of the items written up on my admission record by the doctor yesterday are incorrect and it has confused them. The pain and movement in my legs seem to be getting a bit better already and the fluid content also appears to have reduced. My weight is still 75 kgs today. Tina and Matthew arrive about the same time - 11.45am, but at the same time as the porter comes to take me for my x-ray, so they go for a coffee. The x-ray takes longer than expected and it is time for lunch when I get back, so I don’t have much time with them.

Shortly after that I see Paul Hill. My Wbc is 0.5, my neutrophils are none existent, my Hbn: 8.8 and my CRP is 139. He tells me that I need a blood transfusion tomorrow. My temperature is still a little high in the morning - 37.3 - but drops to 36 when checked later. At 4.30pm I am moved from the large ward to a side ward containing three beds. It is like a greenhouse as it faces south and west and the sun has been out all day! But hey - at least I am out of the madhouse, although you wouldn’t know it with the fellow in the bed next to me! He is coughing and spluttering day and night and calling out “Nurse” all the time as well! Before Tina goes I have the bright idea that I should get a £3.50 card to watch the Grand Prix -and maybe something else - on the Patient Line TV. What a rip off and what a waste if time and effort. I get no response from the TV and it takes half an hour to find out that the TV cannot read the card have inserted. By the time someone comes to fix it, the race is almost over! I get my money back instead and revert to reading. I finish “Small Island“ and start “Bury My Heart and Wounded Knee” by Dee Brown.

Saturday 21st July 2007

Here I am in Catherine James ward for an indeterminate length of time. It is a ward for men with respiratory problems. I am in a room of seven beds with five men clearly over 80 years and most looking rather poorly. The other patient has the most severe problems and seems to only know one word - “nurse“ - day and night! The strength in my legs has gone so much that I have to use a zimmer frame to get to the toilet out in the corridor. I even have to resort to a commode on one occasion! My lack of dignity knows no bounds!

Having had my first dose of Tazocin at 6pm Friday the ward doesn’t get its act together for my second dose until 1045am Saturday - and I was supposed to have it every six hours. Paul Hill is the weekend consultant and I manage to elicit from him my blood results from him, as none of the ward nurses are allowed access to such information from the hospital computer system. Would you believe that? Anyway they are: Wbc: 0.8; Neut: 0.3; Hbn: 9.2; PLT: 52; and CRP 229. So I am rather seriously neutropenic. My weight today is 75 kgs. Tina finds the ward more depressing than I do, but it is really rather crummy. I quickly find I am getting fed with being called “Dear” and “My darling” by nurses and phlebotomists and I bite back, both politely and somewhat more vigorously. In my personal experience, women have been patronised by men, especially policeMEN, for generations. Having now rid themselves of much of that stereotyping through 30+ years of equality policies etc., I find it amazing that it should be perpetuated in the opposite direction, through lack of thought I am sure. Consider that the rules on one ward I have been in this year state very clearly that each patient is an individual and should be respected as such. STOP! Get off the soapbox - lecture over!