Sunday… New experiences

Yet again it has been a week since I last posted – and another busy one! Firstly I am sorry the blog hasn’t been updated, but I have had little opportunity to connect to the internet – and when I have, the server has been unavailable because of the ongoing network snags. I have now found the source of the problem! You may recall that I had thought that it was one of the network devices (a switch) that was overheating, but having removed it (for return to the suppliers under warranty) the problem happened again, and I can now point the finger at one of the computers, which may have a hard disk or motherboard problem, possibly caused by overheating. I will have to look at improving the airflow through the case but until I can sort that out, I’ll be leaving it disconnected so the rest of the network, with the webserver, can run normally.

This week saw the first ECP sessions! All quite uneventful really. I went up to St Thomas’s on Tuesday, and had the first session in the afternoon. One (large) canula is placed into the vein near the inside of my elbow, and about 125ml of blood removed and centrifuged. The white cells are separated out and the red cells returned to the body. This happens six times, and then a photo-sensitive drug called psoralen is added to the white cells which absorb it. The cells are then circulated through a tube past an ultra violet (UV) light which activates the drug and modifies the cells attributes (in a way I don’t fully understand). The cells are then returned to the body. The idea is that because only the target cells are exposed to the drug, which is activated outside the body, the side effects are significantly reduced. However one side effect is the risk of cataracts, as it does make the eyes sensitive to UV radiation, so I had to wear UV blocking goggles (like safety glasses) for nine hours after each session – I received some strange looks in a restaurant!

I stayed in a hospital room overnight (adequate but spartan – it reminded me of the flat I shared in Leeds as a student) – 6 rooms with a communal bathroom – although I was the only occupant! Next morning (Wednesday) I had session two, and then I went off to meet Felicity and Katie who had come up to London as Katie had an interview for a job placement as part of her degree course. Session 2 was uneventful – once the canula was inserted – it took two attempts.

We stayed in London that night in rather more comfort at the flat of our friends Marion and Martin. We were out for a Chinese that night, and then Thursday saw me head off to Guy’s , while Katie went for her interview. My haematology check up at Guys followed the usual pattern, although they think my Hb was 11.9, while the team at St Thomas’s claimed it was slightly better at 13.4! However, having had four needle inserted, I have a nice collection of bruises! I did get a bit more of the coursework done, all but finished. Katie’s interview went well – but she found out at the interview that it is an unpaid placement, which makes it rather undesirable!

We drove back on Thursday afternoon, I was out for dinner that night, and back at work on Friday.

Friday evening saw me driving up to Worcester for an excellent but intensive week-end of training (nice to be doing it instead of receiving it!) and I drove back home this afternoon, to finish off my coursework and email it off – which I did about 2 hours ago, just before the midnight deadline.

So another busy week! Next ECP is in two weeks, and currently planned for every two weeks for the next twelve months – which leaves my in a bit of quandary as to how to classify these posts. Certainly having treatment, although not for the original disease, and with the appointment schedule it feels a bit like ‘life on hold’ again, yet at the same time, it is part of getting my life back! Maybe all three (or four as there was a bit of ‘geek speak’ at the start).

But whatever the categories, we stay Onwards and Upwards!

(Oh yes, I passed the financial management course with 71%)

3 Responses to “Sunday… New experiences”

  1. Richard on 09 Jun 2008 at 8:53 am #

    71% That’s a First isn’t it ! Well done.

    On the Uv protection as it goes on for a few months you should look for some designer goggles and it may even start a fashion for indoor eating.

    Eyes crossed 🙂


  2. Neil G on 10 Jun 2008 at 11:44 am #

    Good to see you looking so good and eating so well at the w/e.
    How’s the voice holding up?


  3. Elspeth on 11 Jun 2008 at 1:45 am #

    Well done on the 71%, all that treatment hasn’t affected your brain cells! Great to see you at the weekend – your next weigh-in MUST show increase! L’n’Hs.OXO

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