Tuesday… ECP second day
Apr 7th 2009PeterGetting My Life Back!
I’m sitting up here on the 12th floor of Lambeth wing at St Thomas’s looking down over Westminster Bridge – connected via the mobile phone network.
The ECP is proceeding uneventfully – yesterday’s session was quite quick as I had a large kit
(this takes more blood per cycle, but only three cycles for separation) but today I am on a small kit – takes six lots of blood, but only 125ml at a time, so it is a bit slower.
Westminster Bridge has just been re-opened, it was closed last night because of a demonstration in Parliament Square, and it was very noisy – lots of police cars with sirens going to add to the regular cacophony of the ambulances arriving at A&E! Who thought hospitals were places to rest?!! Although to be fair, I was in the hostel bordering the road, rather than on the wards which do have better sound insulation – I can’t hear the outside world from here.
But the ECP really has made a positive improvement to the effects of the GvHd so I am very grateful to the team.
After yesterday’s session I popped down to the PET Centre see Margaret (The Clinical Manager) about some additional uses for some of the (many!) scans I have had over the years. Great to catch up on news and the latest plans for the Centre. Funny to think that when I had my first one, PET scanning was in its infancy (no-one knew if it would be beneficial in my case). That was less than ten years ago, and now it is recognised as a valuable diagnostic tool. I am quite pleased to have been part a small of the process
Anyway, I see cycle 5 has just stated, so about another 90 minutes to go.
Onwards and upwards!
4 Responses to “Tuesday… ECP second day”
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Richard on 07 Apr 2009 at 7:32 pm #
I wonder if you are allowed to have copies of your scans on a DVD it will be interesting to look back on in many years time…….
Richard on 10 Apr 2009 at 7:06 am #
It’s Bun Day and Lewis’s birthday so we are in for a day of Star Wars (Clone variety) and Ben 10 etc., oh and Dr Who as he wanted a radio controlled Dalek so we’ll be dogging that too.
I wonder if John Humphrys has residential child care? He doesn’t talk about his child does he………..too tired probably.
Have a great Easter break.
Richard
Roger on 17 Apr 2009 at 10:12 am #
Hi Peter,
I discovered your diary (really impressive..) during a search on anything related to ECP, as my wife has Chronic GvHD following two stem cell transplants.
We are actually approaching the 3rd anniversary for the 2nd transplant on the 27th April, so an important day approaching!
However GvHD has developed over the last couple of months, so we are at the stage where funding is being applied for, with the plan for ECP treatment at St Thomas. We are at the early stages, so I will have questions relating to the treatment, both from a medical and logistical viewpoint as we live on the south coast.
Anyway, I was delighted to find your diary, which seems to contain a wealth of information concerning your general progress and Leukemia in general. I will catch up with your previous entries over the weekend to bring me up to date, and then get in touch with you if that’s ok..
In the meantime, best wishes with your treatment, also thanks for sharing the information. It’s so beneficial to speak to others with similar problems, but that is generally quite difficult to do when it becomes quite specialised.
Peter on 17 Apr 2009 at 10:30 am #
Roger,
Delighted to welcome you to the blog – and I’m so glad you found it useful! I will be sending you a private e mail shortly.