Peter's Hospital Diary

It must have been a bank holiday because it rained – very heavily – for most of the day! Not much of a welcome back for Felicity, who returned from the Chelsea Flower Show on Saturday.

I started writing this post on Sunday, just after completing and e-mailing the first piece of coursework for the PGCert! It was been all stops out this last week to get it completed, and although the bulk of it was complete by Friday evening, it took a couple of days to proof read and ‘tweak’ before it was ready. It was a great relief to get it completed, but as the second piece has already been issued, there is little respite and I spent most of Monday starting that!

This week I am in Bristol doing Financial Management course (5 days worth compressed into four!) and then it is back to the coursework next weekend. I really need to get the bulk of completed by then, as the week after is pretty intense too as I have had the first dates for the ECP. I do have the laptop with me, so I should be able to so some of it in the evenings.

This will be on Monday and Tuesday of next week, and I have an appointment with the haemotologists on the Thursday, and at the weekend I am doing a bit more LeukaemiaCare training (7th and 8th) – and the coursework deadline is midnight on the 8th! Still, it is good to be busy!

This is being finished during a quick lunch break, so in time honoured fashion…

Onwards and Upwards!

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The posts are a bit like buses – none for ages then two come along at once!

Yesterday was a rather more prolonged visit that the bone density scan (although, like the bone scan, no blood samples!). There was a long wait, during which I swapped GvHd stories with another patient, and then in to see the consultant, Julia. We discussed the pros and cons again, including an article I had discovered in thee British Journal of Dermatology questioning the effectiveness of ECP. However as a one off paper, it was felt that it was inconclusive. So having weighed up the pros and cons, on the balance of probabilities, I have decided to start a course of treatment. The reasoning is that I have little to lose, but potentially much to gain. The GvHd is unlikely to resolve itself, and there is always the risk of additional flare ups, triggered by some infection, that will cause more damage. There is already a reduction in my mobility (mainly around my shoulders) which may be reversible if caught at this early stage. I was also mindful of the problems John had, and I also came across another web site baldy’s blog which describes in great detail the possible progression of GvHd.

Although the decision is probably the better one, it does mean that I will be starting treatment again – for up to twelve months, so in some ways it is putting my life on hold, again and psychologically I feel a little unhappy at the prospect, but if it resolves the GvHd the long term benefits will be worth it. On the plus side, I had a verucca I have been trying to get rid of for four years zapped with liquid nitrogen! (Too much information!)

Back on the tech front, I still have an occasional network problem, but I think it is actually being caused by one of the computers on the net. It has caused a couple of other problems lately, and yesterday, when I came home, it had ‘frozen’ and the network activity was high. Unplugging that machine from the network freed up the network, which points the finger at the computer. I have disconnected it from the network today while I am at work.

So new experiences beckon… Onwards and upwards!

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Where did the last week go? I suppose it is a sign that life is getting back to normal, and perhaps a little more mundane, that the frequency of the posts is decreasing slightly! On the health front, the only remarkable event was my trip to Guy’s for my bone density scan, which took all of 40 minutes, including waiting time, and half of that time was filling in a questionnaire. Still, it gave me time to have a browse round Waterstones before heading back home to do some more of my coursework – the deadline for the first piece is Sunday 25th. It is about two thirds complete in terms of words, although most of the research is done. Technically, it isn’t that difficult, far harder is compiling and citing the list of references to support the text!

My parents visited for a couple of days at the end of the week, and Olivia has been over a couple times. Vicki has some photos for me, I’ll post them when I get them!

On the Leukaemia Care side, I spent a day with Neil and Suzanne (fellow trainers) yesterday, tying up some loose ends for some modules on the training courses we deliver. This was after getting up early to put Felicity on the train for London, where she is working this week, at the Chelsea Flower Show. I did a little more coursework last night!

On the technical side, the availability of the blog has been a bit variable this week. Apart from the power cut on Monday, I have been having problems with the home LAN (Local area network). It is relatively complex, with a high speed core running at 1000Mb/s, and an outer core running at 100Mb/s. There seemed to be a problem with one of the 1000Mb/S switches, that was locking up and blocking all network access, including that to the internet access router. I think it was overheating, so I moved it to a cooler position – forgetting that the sun would shine on it during the day – and it locked up again for most of yesterday! It now has a sun shade!

I am at home today – I have another appointment at Guy’s this afternoon – at the dermatology clinic, and I think it is decision time over the Extra Corporeal Photophereses! The aches haven’t got any better, so if it is chronic GvHd, it isn’t getting better on its own. It might not be getting worse, but if it flares up every time my immune system is triggered into fighting an infection, like the HIb, then my physical condition is likely to deteriorate. So it is probably better to act now rather than later. There is no ‘right’ decision, because whatever I do, I will never know what would have happened if I had made the other one – so whatever I do decide, it has to be made on the basis of as much information that I can find -and then stick with it!

And now – back to the coursework!

So… Onwards and upwards!

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Sorry about the blog downtime today, caused by a power cut while some work was being done on the power distribution cables down the road. I have been at work all day, otherwise I might have fired up the generator, but since we didn’t need power for anything else (the freezers stay cold enough for the five hours it was off) it didn’t seem worth it. All is now back up an running,

Last week was mixed, following on from the sad news about John (incidentally, there is a very moving entry by his ‘little sis’, Ruth, describing Johns last few days) we went to the memorial service of another friend who had died from an agressive form of prostate cancer.

However we took some advantage of the lovely weather at the weekend to attack the garden. Well, I say we, Felicity did the majority of it, helped by Katie, home from university to do some revision. I did a little bit at the end of the weekend having spent most of the time working on the coursework for my PGCert. It was very galling to be indoors with the sun out – reminiscent of revising for exams in a hot May when I was an undergraduate!

And bizarrely I seem to have developed hay fever – something I have never suffered from before – so I don’t know if that is something I have acquired from my donor! A minor problem in the grand scheme of things though.

I seem to have a rash of hospital appointments in the next two weeks. I had managed to get two of them to coincide, but I had a call from haematology saying that they had to move one of them. So this Thursday I am off for a bone density scan, and I hope I’ll be meeting Simon (up to London for a meeting) afterwards. Next week it is the turn of the dermatologists, when I have to make a decision about the ECP, and in June, my next haematology check up! Just to add to the fun, I shall be home alone over the weekend while Felicity is working at The Chelsea Flower Show.

So Onwards and Upwards! (although my thoughts remain with John’s family at what must be a sad and difficult time)

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I have frequently mentioned a fellow blogger John and his disabled rants blog – so it is with great sadness that I read the post from his mother, Margaret, saying that John passed away peacfully in his sleep yesterday. The full text is here.

I never met John in person – in fact he found me and my blog, and I accidentally marked his first comment as ‘Spam’! It wasn’t until a few months later that I recovered it and added a reply, forging a friendship in cyberspace, re-inforced by our cross postings and the occasional e mail, and it is on this basis that I write the following.

John was in a difficult position. Having survived a stem cell transplant to overcome leukaemia, he developed chronic GvHd, which, coupled with the after effects of a pseudomonas infection in his lungs, left him in a physically poor condition, leading ultimately to his his being wheelchair bound.

His blog chronicled both his trials and tribulations in dealing with the day to day difficulties this brought him as well as his ongoing treatment by ‘Merlin’ during his frequent visits to “Heath Towers”. His tales of Merlin ‘and his fellow wizards’, told in his unique style, certainly made me smile, and I know that many of you also found his blog equally entertaining!

While I think he held his health care team in great affection, the same could not be said of his local bureaucrats, with whom he felt anger and frustration in equal measure. Ironically he had recently won a long running battle to obtain the grants necessary to enable the conversion and modification of his house that would have improved the quality of his life. Sadly it was too late for him to gain the benefit from it.

However it was John’s strength of character, and his determination not to let his disability affect his enjoyment of life, that shone like a beacon to us all. He had a love of cooking – in particular, T-bone steaks – and for a while our discussions of the ideal ‘bacon sarnie’, together with those of other contributors, filled a few pages of this blog! (We never did come up with the ideal recipe!).

John, if you you are reading this on some celestial internet – you fought a good fight. Thank you for inspiring me in my fight.

My thoughts are with your wife and daughter, and all the other members of your extended family.

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