Peter’s Hospital Diary

Another week has flashed by - not without its eventful moments! Two weeks ago, when I had the last ECP, Rachael went down to Exeter to look at the University. Leaving aside navigation problems, all went well until she came to return home, when the rear windscreen on her car shattered. She was able to drive it, but clearly it needed replacement. Investigation showed that the tail gate was probably distorted by a too close encounter with a parking bollard a few weeks earlier, so I thought it better to replace the whole tailgate. We found one at the local car breakers - one snag - it was blue, and Rachael’s car is red. So I spent all day Saturday removing the old tailgate and fitting the new - and the result is in the photo! I think it is vaguely reminiscent of “Starsky and Hutch” and at least she is mobile again!

However the highlights of the week were Felicity’s birthday on Friday, and an open air concert on Thursday. Sadly the weather wasn’t kind, and although the rain held off for the music and the fireworks, it was bitterly cold. Still it made for a pleasant evening!

This week I am off to London for the third course of ECP. My shoulders ached yesterday after all the stretching to fit the tailgate, but I do think I am stretching more than I could, so it does seem to be working. The appointment is on Wednesday and Thursday, so another overnight stop - must do better on the cooking! Felicity is off to manage restaurants at The Henley Regatta, so it is again all go - but very much O & U!

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I was hoping to post a few more photos from Katie’s ‘Birthday bash’, but I haven’t received them yet!

My second course of ECP went well. I am getting the hang of the hospital accommodation, and decided that rather than go for an overpriced pizza, I’d get something from M&S (This is not just food…) and cook for myself. It didn’t go quite according to plan…

The starter, as I discovered after I bought it, needed to be cooked in a real oven - there is only a microwave in the accommodation kitchen. However that was no problem for the main course - a curry. Well there wouldn’t have been had I not read the “re-heat for 2 1/2 minutes” as “reheat for 22 1/2 minutes” (which would have been reasonable if it had been frozen! Fortunately I realized my error in time to salvage something (after 12 minutes) - but it wasn’t quite the gourmet experience I had hoped for!

However, there are signs that the ECP is having a positive effect. My joints don’t feel quite as stiff as they were and I think I can stretch a bit further.

Felicity cam home on Saturday after a week at Ascot - and it was off to Bournemouth on Sunday to collect all Katie’s ’stuff’ from her rented flat as the term has ended. Next year is spent at a placement, so there may be a slight storage problem…! However it is stacked in her bedroom at the moment.

But those little trials and tribulations apart, all is well!

Onwards and Upwards

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Hot on the trail of last Wednesday’s anniversary came the anniversary of my passing my driving test (12 June), but the most important one occurred on Saturday, Katie’s 21st Birthday! We had a ‘bit of a bash’ with a mixture of family and friends to help her celebrate the day with a plenty of Pimms and a BBQ. The weather was lovely for most of the afternoon, but the rain did come down with a vengeance for about forty-five minutes, and saw the (four piece) jazz band fleeing to the house, where they set up again - not every day you get a jazz band playing in the living room! However the rain cleared and the party continued on until just before midnight.
Some photos from the day are here in the gallery! Sunday was spent clearing up and putting stuff away, but it was a great weekend.

This morning saw Felicity depart for a week to Royal Ascot, where she will be managing one of the restaurants there.

It has been a few weeks since I posted any photos of Olivia, who is growing up fast. Her vocabulary is increasing (And I could tell she liked the home made burgers by the yum yum yum noises!). This one was taken late last week, when Vicki brought her over.

Tomorrow I am off to London for the next session of ECP. Although I was told that the improvements will take place over several weeks, I think I can detect slight improvements in joint mobility and ’stretch’ so I hope that continues.

So on that note… Onwards and Upwards!

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It recently occurred to me that it is nine years ago this month since I was first diagnosed with lymphoma. I can’t remember the exact date, only that I had a rash while I was on holiday in America, and an X-Ray showed an enlarged spleen. It was when I returned to the UK at the end of May/early June that the cause was determined, and I started ‘my journey’! I have said that it is a bit like walking down a path, with various treatments along the way, and it has at times been a pretty rocky path too - traversed only with the support of family and friends (like you, dear reader) for which I thank you, and the skill of the various medical teams that have looked after me.

And tonight we (in the office) are going out for a few beers - something I couldn’t have contemplated a few months ago so while this anniversary isn’t the reason, I will raise a glass to you all!

Onwards and Upwards!

PS - Just checked - it was exactly nine years ago this day - thanks Mum!

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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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Last week saw me in Bristol doing a course on Financial Management (also known as “Accounting for non-accountants”) which was interesting - but intensive! It should have been a five day course, but because of the bank holiday, five days was crammed into four - with an exam at the end. However, I stayed in a very nice hotel in the centre of Bristol - and managed top get some of my PGCert coursework 2 done. Still, it wasn’t all work, and on the last night a few of us met up for a drink and a meal - I managed more beer than I have in a long time, and whe I arrived home and jumped on the scales, I had broken the 10st barrier! I called in at Cranfield on my way home to deliver the written copies of the first coursework, and return some library books.

And this weekend has seen me continue to work on coursework 2! This is a practical, and my head is reeling with hexadecimal (base 16) conversions, and hard disk address translations - but I think I have got about 90% straight in my head, so I just need to write it up. This is relatively easy, and should only take a couple of pages, as the main body of the work is tabular and a map of a hard disk layout. The deadline is next Sunday (for the e mail copy).

Still, I had a welcome break when Sue and Mark (fellow blogmaster) came over for dinner on Saturday night!

This week sees the start of the ECP - while I was away the next twelve months appointments arrived. Fiirst one is on Tuesday and Wednesday (not Monday and Tuesday as I first thought), followed by the haematology department on Thursday. That really leaves Friday as the coursework deadline, as I am off to Worcester to carry out some more training with LeukaemiaCare and I need to get it all completed before I go! And I am expecting coursework 3 (the last for this module) sometime next week!

Onwards and Upwards!

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