Peter's Hospital Diary

Last night I went back into the water in dive kit for the first time for five years! It was in a swimming pool, but I felt very apprehensive. But after the first ten seconds the previous training returned and I settled back into it quite happily – albeit maximum depth of about 3 metres!

Some of my drills are a little rusty and need a bit more practice, and I certainly want to do a bit more pool training before I contemplate open water diving again, but I left the pool with a big grin on my face. One more step on ‘getting my life back’!

And another has been some more time on the LeukaemiaCARE helpline – something I used to do, but felt I had to give up when I had the biopsy that affected my speech. In the intervening years I have overcome that, so that is another step on the path!

Onwards and upwards!

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Phew, where to start? It has been a couple of weeks since I last “blogged” so there is quite a bit of catching up to do!

The biggest adventure was a 12 day trip out to France with friend Mark, to his house for a working party. We drove over on Monday the fourth via Brittany Ferries. It is a longer crossing than the catamaran (not running since it had a close encounter with a buoy in the harbour at Le Havre!) So we were delighted to find another piece of French motorway had been completed, giving continuous motorway to within about 10 miles of the house. Not counting stops, we completed the journey in just under six hours.

It was a working week so we had trips to the various ‘bricolages’ for wood and components to add a new window to one external wall, change an external door for a more modern one, remove a fireplace and move an internal wall. For some of the work, a neighbour of Mark’s (in France – Ben, a Dutchman) came and assisted, while I did other necessary jobs like mowing the lawns, making coffee, preparing food and so on.

We made good progress getting the window installed, and almost completing the one door, and moving an interior stud partition wall before we flew back, leaving Mark’s car at the airport.

It wasn’t all work, we did go out for a meal or two, and Mark’s wife flew out for the weekend. I did little local exploring in the woods nearby. All went well until the last bit where I lost my bearings, and rounding a corner in a field, came face to face with a ‘Limousin’ cow. I beat a quick retreat, climbed up a bank – and found myself in Mark’s back garden – I had just walked round the house and not seen it!

After I arrived back on Friday 15th, we had a visit from Martin and Stephanie, friends from University. We met up at Beaulieu, and went out for a meal (thank you Martin!) with a trip to the apple fair at “The Vyne” National Trust House near Basingstoke. They left on Sunday morning, and on Monday I was off to London for a postponed ECP session.

That went smoothly as expected and I was home on Tuesday evening. I did have an appointment at the eye clinic, and my eyes are much better, so I am now using less aggressive eye drops – but still not able to wear contact lenses

I had a slight “wing mirror” encounter on Friday night, just clipping it as I passed another car on a narrow bridge. This popped the glass out, but it was retained by the heating element wires, so I thought it would click back in. Alas no, there was a part that had dropped out, and when I went to buy the replacement part, I was told I had to buy a complete motor assembly. Ouch! I ordered that on Wednesday and collected it on Thursday, and fitted it that morning. You don’t realise how much you use the external mirrors until one is missing.

Thursday saw me driving up to Corsham for a dinner to celebrate the glorious victory of Admiral Lord Nelson at Trafalgar. An excellent evening with many old friends present. On Friday I drove up to see my parents.

However on the way I stopped off to see the people at LeukaemiaCARE. I haven’t done very much with them lately, but I am going back to help on the 24 hour careline, so it was good to drop in and catch up with some new faces and (Meg!) And discuss “stuff” . So a hello to Tony, Dawn, Nikki, Veronica, Tricia, Meg, Mike, Steve and Becks. And see you all again soon I hope.

So I am at my parents having a break- the weather was lovely this morning – we have just had a hailstorm! I had been hoping to go back to France with Mark on Monday, but last week I was approached by an agency with a possible contract offer. MY CV has been submitted, and interviews are this week. I don’t know if I will be called for interview, but it is worth waiting to see. It will be for about 40 days of work, which will be useful!

I have lots of photos as well – only a sample here – which will be on the Gallery when I have uploaded them.

So on all fronts – Onwards and Upwards!

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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%)

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Well I did say that last week would be busy – and it was, but very rewarding! The majority of the week was spent on a residential course for another module on my computing course. Not quite as intensive as the previous two (only 3 hours of exams at the end of the week) but very enjoyable. I was also able to raid the library for some books to help me with the coursework. I had forgotten just how good it is to have access to a good technical library! Now all I have to do is identify and reference the relevant parts of the books. In fact the technical content of the coursework is fairly straightforward – the hard part is remembering and justifying what I write, and getting the appropriate references – and referencing system.

I went from university up to Worcester for a weekend of training with LeukaemiaCare – the first course I have taken for some months. However it was as enjoyable as ever, good to see my fellow trainers, Neil and Suzanne, and welcome Channelle to the team. The course members were a really responsive and enthusiastic group to train, so although I felt quite tired at the end of each day, it was very rewarding and good to get back to it!

After that it was a trip back home for a rest!

I had been hoping to go on a diving expedition this week – not in a diving role, as I still have a medical to pass – but in a support role. However the exped now has a full complement of divers so there is no space for me.

On the health front, I still have some aches and pains, so I am beginning to think that perhaps GvHd is affecting the interstitial tissues and maybe the ECP would be a good idea. My next appointment with the dermatologists is on 19 May, so I’ll see what it is like then. My mouth was a bit sore yesterday too, but I think that was all the talking over the weekend. It is much better this morning!

However, on the upside, I jumped on the bathroom scales last night, and discovered I have put on about eleven pounds in the last month! I think I mentioned that my appetite has been getting better, and I certainly ate a lot last week, so I was quite pleased. A few more and I shall be 10 stone! (63Kg!) I was still wearing a ‘small’ size LeukaemiaCare polo shirt though!

So on that note – very definitely – Onwards and Upwards!

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