Peter’s Hospital Diary

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!

Tags: ECP

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Where did the week go?!! I was at work on Monday and Tuesday, but home again Tuesday evening for a quick trip up the Guy’s for another referral to sort out some minor skin GvHd problems. Now that the major snagettes seem to be under control, we are slowly picking off the minor ones – this one was skin related and seems to be under control with some topical steroids – another check up in six months! At the end of the month I have another appointment in the oral surgery clinic to see how the dry mouth problem is getting on. You may recall that the radiotherapy damaged my salivary glands, but that too seems to be improving slowly. I have also had another appointment for a lung function check – important because if that shows an improvement, it means that diving might be back on the agenda (not that it is off – just a long way down – no pun intended!)

I was back at work on Thursday and Friday, then home for a sunny weekend. This morning I embarked on a “slash and burn” gardening exercise – in collaboration with my next door neighbour – on an adjoining hedge. So far it is slash – burn will come later. I was pleasantly surprised to find I could do more than I was expecting – I even managed to get the chain saw running (!) although the chain seemed blunt, and the whole thing needs servicing – it must be about 4 years since I last used it, so it didn’t get used in anger! However using loppers above my head showed that my upper body strength is still a bit lacking. But thank you Stuart for your help though!

And finally I heard from a friend from University days – Jane – who I lost touch with just after I graduated, and that came through a mutual friend, Faith (who has posted here before). So thank you Faith, and great to get back in touch with Jane!

So in all ways this week – Onwards and Upwards!

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I hope you all remembered to advance your clocks one hour this morning, heralding the start of British Summer Time, light evenings and (I hope) the promise of Summer!

I had another module of my Postgraduate course last week, culminating in the usual exam, which I think went well. There is some coursework to complete, but that won’t be issued until Monday, then it is probably down to the library as this will be on Legal awareness, so I expect there will be some law books I will need to consult.

Other than that, it has been uneventful. My birthday passed quietly on Tuesday, although I was out on a curry night on Wednesday. I do seem to be eating better, and more, because when I bounced on the scales on Friday evening, I topped at just under 10 stone 8lbs, which is the highest I have been for quite a while! I feel good too, so I suppose in every way, it is Onwards and Upwards!

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Not only my Birthday, but also Richard’s (Happy Birthday Richard) and as I discovered this morning, also the Birthday of Alan Sugar – those of us of a certain age will remember Alan Michael Sugar Trading (Amstrad) amplifiers of our youth! Cheap and cheerful mid-fi!

We really celebrated my Birthday at the weekend, but I did buy some cakes for the course (which is going well), but this evening I have been doing revision, and setting up a new monitor to use with a Freeview box.

I have to say it has been a better birthday than some, a couple of them have coincided with Bad News (probably about 4 or 5 years ago – pre-blog). However, that is in the past, so now I remain… Onwards and Upwards!

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It has been a beautiful sunny weekend here, and today we had a large crowd for Mothering Sunday, and only now are we settling back down after our visitors have departed. The garden is bursting into life with this prunus in blossom.

Apart from Mothering Sunday, I had an early Birthday, as I shall be away on Tuesday (my actual birthday) doing the first module of my second year postgraduate course, at Cranfield University. Successful completion of this year will give me a Postgraduate Diploma, and it will then be decision time about progressing on to complete a dissertation for an MSc. However I don’t need to worry about that for a few months!

My cold seems to have finally cleared up, and I have to say that I did have a good appetite all weekend. Although last night’s meal at a local restaurant did defeat me (by a few chips and some bread!)

My mobile broadband is working well, I get very good speeds in the flat where I can get 3G reception, at home it is only GPRS – akin to dial up. I shall be in the flat this week, travelling daily to the Cranfield campus at Shrivenham.

So… Onwards and Upwards!

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And very nice it was to come back to a nice warm flat! After a bit of prompting, the agency got hold of a heating engineer who came round to the flat today. He duly pulled the boiler apart, and did a few diagnostic tests before deciding that it was the flow sensor that was faulty. At that point I had to leave to go back to work. ( should add that it is a combination boiler, instant hot water and central heating. Hot water takes priority when it is called for).

He ‘phoned about an hour later to say that he had found the problem – a leaky tap in the bathroom! The hot tap is a bit loose in the basin, so I avoid turning it off tightly, and it seems that the system is so sensitive that the sensor detected the flow and prevented the heating from coming on! So I was slightly embarrassed at not having spotted that myself, but I now need a conventional plumber to fix the tap, and in the meantime make sure all the bathroom taps are shut off completely.

The only other thing to get fixed is the grill on the cooker, but apart from that, it is great being able to cook a meal and then relax in the evenings. The GPRS works well, and I can get 3G in the flat, so it is almost as fast as the ADSL connection athome!

So… Onwards and upwards!

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And it is a lovely sunny day down here in Hampshire! We are just about to go out for lunch with friends David and Frances (David I have known since I was about 4) but I thought I’d just do a quick update.

I have now taken over the tenancy of a small but quite comfortable flat. I took a couple of photos as I was leaving on Friday morning, showing the combined living room/kitchen, and the bedroom. Small but comfortable! There are a couple of small snags to be fixed; the central heating is a bit erratic (I think a problem with the control system) and the grill doesn’t work, but the agent is on the case to get those fixed.

The other small snag (that I can’t do much about) is that there is no off street parking associated with it. However there is a public car park behind the flat, which is free from 6pm to 8 am, and as I am rarely back before 6 and usually out before 8, that isn’t a major snag – and outside those times parking is only 20p/hour for short term, or just under £5 all day. I did contemplate a season ticket, but at £80 for 3 months, it hardly seems worthwhile for the little time I would use it.
Other than that, the flat is pretty well equipped, washer/dryer microwave etc etc.
So I have now moved in, sorted out a broadband connection (GPRS – I’m not bothering to get a landline installed) and should make life more pleasant, and I hope improve my diet as I can now cook for myself. The nearest Sainsburys is about 15 minutes away, but there is a Somerfield across the road for ’emergency rations’!

Not much else to report, a quick trip out last night for a drink with Sue and Mark, fresh from their holiday in France, and after lunch today I shall be sorting out a few more things to take back to the flat.

So… Onwards and upwards

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And nothing untoward to report – the ECP on Monday and Tuesday went smoothly and that was followed by a haemotology check up. Again uneventful, although I did give up another 5 tubes of blood – on top of the little bit that gets lost after each ECP treatment session!

After the trip over to Guy’s, I saw Dr Kazmi, the consultant. It was the first time for some months, and his report was that all seems to be fine. The creatinine levels (a measure of kidney function) are still high, (although a bit lower than they were two years ago) but stable, so it is not a cause for concern. I did mention the cold, but as that seems to be going, there was no requirement for action, and it seems that I can stop the anti-fungal drug that I started when my mouth was particularly sore. I also mentioned that I do get a bit breathless, and although that might be the result of the cold, I will probably have a lung function test in the next few months. Finally I saw Rachel (dietician) – I have lost a little weight since I las saw her, but it is up on the last time I was at the clinic, another good sign.

On the domestic front, I hope to be taking over the tenancy on the flat I looked at last week (I had better – nowhere to stay tonight if I don’t!) I am looking forward to having a bit more space and being able to cook for myself, rather than do the round of the four local take-aways week after week. This should improve my diet in both quantity and quality. I have my camera so I’ll post a couple of photos next time.

So on that note, what more can I say but “Onwards and Upwards”!

Tags: ECP, GvHd

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Tomorrow is ECP time again, so it will be off to London in the morning for the first session, followed by the second on Tuesday and a check-up at the haematology clinic, before going back to work on Wednesday. A few changes there – my contract has been extended for a further six months and so rather than spend that in a hotel, I am renting a small single bedroom flat in the area, which should be a bit more comfortable and relaxing after work.

The weekend has been busy. There has been a small problem on the heating system (and a bigger one – but I’ll come to that later) concerning a motorised control valve that had seized. I bought a replacement, but found it tricky to fit as the pipework is quite tight by the hot water tank. However I was able to take the motor and control head off the existing one while it was in place, and free up the valve spindle so it is all working properly again.

The other problem occurred during the week when the bathroom water developed a leak and sent water cascading down into the kitchen, taking down a plasterboard section with it. Fortunately it is now isolated, but I need to order and fit a replacement – a job for next weekend, and then get the ceiling repaired.

A good weekend socially though, a birthday party on Saturday evening, and out for lunch with some friends (not seen for a while) today – so as always, onwards and upwards!

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And that is probably enough of the Mamas and the Papas (1966)although it was very pleasant driving up to work this morning, listening to Depeche Mode (from around 15 years later) as the sun rose just as I crossed the border into Wiltshire. In fact the sky was getting light as I left, and the churds had started burping in the first hints of a dawn chorus! There was quite a sharp frost, so the fields were white with that smokey mist lying a couple of feet above the surface.

Last week was busy, and the last week of my contract, however it has been extended (although I have yet to see the paperwork!) for another six months, so I am quite pleased about that!

The weekend was busy catching up on a few overdue domestic bits and pieces. I finally diagnosed a problem on the heating system (a seized motorised valve) and ordered a replacement. Sorted out some old paperwork, and discovered my computer at home appeared to have a problem. However I think it had overheated, and after a few hours cooling down it all started up again – but I have backed everything up ‘just in case’! (As someone said, “A hard drive is a mechanical device, it isn’t a question of IF it will fail, only one of when!”) And a cold that started last Wednesday seemed to hit its wordst point at the weekend, but I feel a lot better today!

I have posted a photo of my ‘home’ for the last few months (my hotel room) but with a six month contract I may look at renting a flat for a bit more space and comfort.

I am in the office all of this week, next week is ECP (My ‘buffy coats’) for two days.

So – in the best traditions… Onwards and Upwards!

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