Peter’s Hospital Diary

Nearly a week passed already! Now 2 days to the transplant…

The morning so far has been typical, observations at 7, breakfast at 8:30 – but without a knife and fork, so by the time they arrived the beans were nicely congealed! After that came the drugs round with my favourite (not) – an anti-fungal called Itroconazole. I think it must have a pretty unpleasant base taste (it’s a syrup) which is unsuccessfully disguised by a “standard medicine flavour” and artificial sweetener. Ugh! Still, an excuse to suck a lemon sherbert afterwards. Last time I was in here, the taste was so unpleasant after the chemo that I couldn’t drink it, and had to go onto an intravenous version.

There was an added impetus to wake up this morning – a dawn chorus of pneumatic drills on the building works outside. However their early morning start has paid off, and they have now stopped! Tea break perhaps.

Last night was punctuated by the observations at 2 o’clock, made longer as I had a saline drip put up in preparation for the next dose of chemo. This is a drug called Melphalan that can have some unpleasant side effects, of which hair loss is probably the least worrying! To lessen those effects, I need to be properly hydrated, so I had having a litre of saline pumped into me. The infusion pump seemed to be in an awkward mood, it took half an hour before we got it working (I am becoming adept at loading and running the things) so that was quietly purring away until 9 this morning.

The rest of yesterday passed quite pleasantly. The routine continued after the bloods with the consultant ward round, whose the general consensus is that things are going well. We had a discussion about the treatment, drugs and the balancing act between keeping me sufficiently immuno-suppressed to prevent severe graft-versus-host disease (rejection) and not too much that it prevents the incoming cells from getting to work on the lymphoma cells. I’ll write more about that on a separate page. As I only had one lot of chemo yesterday, the afternoon was fairly quiet, answering e mails and having a doze!

Things livened up when Katie arrived with some bits and pieces, including a 40W light bulb (Eureka!) and the Freeview box which has improved the quality of the TV pictures – now if only something could be done about the programmes…

Talking of programmes, I had a chat with the production team from City Hospital, who have been following my progress for the last 3 months. They will probably be filming the transplant to go into a programme to be transmitted in the next series

And yes, I did do some time on the exercise bike…!

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Well, not really! It is a grey misty morning here in London, as I look out of the room window, past the unglamorous Guy’s Tower (just hiding the famous Gherkin Building) over Southwark Cathedral and towards The City and St Paul’s Cathedral.

The night was punctuated by the usual observations, although the 6 o’clock set seemed to be delayed to 7:30 this morning so a bit of a longer doze before breakfast arrived. I haven’t dwelt much on the food – and I’ll leave that subject for another day, but the dietician has ordered me a cooked breakfast – which sounds nice in practice, but is always a little chilly by the time it arrives. The bacon is fine, the sausage so-so, but the beans are less than appetising!

The routine continues with the blood round (just happened as I was typing) – a process made a lot easier with the Hickman line, and I have discovered that it is a mild day outside, though not in my room which remains at a sub-tropical 27 to 28 C (about the same as the surface water temperature in Ascension Island!) although all room heating is turned off! The chemo should start in about another hour or so, giving me time to do a couple of minutes on the exercise bike the physiotherapists have provided. (Yes, the room is crowded!)

One of today’s tasks is to obtain a 40 Watt light bulb for the over bed light. The lamp was missing in both rooms when I arrived – there doesn’t seem to be one in NHS stores, so if anyone has a spare…!

Yesterday afternoon was pleasantly passed in the company of my parents, who travelled down from Birmingham for the day. They left in the late afternoon and I spent the rest of the evening watching wavy and ghosty TV (must get that Freeview box) and reading.

Thank you for the comments (both posted and by e-mail). We have had some problems with the server, some of which Mark has sorted, so it should be a little more stable, though it is speed limited! I don’t think you have to register to post comments, but the first ones are moderated before they appear.

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A good night’s sleep in the new room – well as good as you can get with the 4 hourly observations (I wonder what happens if anything occurs in the 3 hours 55 minutes between…) However it was compounded this morning by having my weight checked at the 6 o’clock observation. I can just about hold out an arm for the blood pressure cuff, and have my temperature taken without waking up too much, but getting out of bed to stand on some scales…!

So far the morning has been uneventful – the second lot of chemo has just started, and I have just cleaned up and changed the dressing round the Hickman line, so time to attack yesterday’s crossword.

I would welcome any comments – I don’t know how interesting this is – my day is pretty humdrum, and there isn’t much excitement, so if it is really tedious, do say so!

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Well so much for saying that I was settled in my room! Just after the last post, we had a ward round and it was pointed out that the room next to mine (and the one I had last year when I had the second self donated transplant) had became free, and as it is a bit bigger, could move if I wanted to. So I have! It isn’t quite as cosy as the last one, and the view isn’t quite as good, BUT – the telephone line allows 0845 numbers so I now have dial up internet! A great improvement and one that will make updating this blog a lot easier.

The TV picture is a bit flakier with the internal aerial but I hope the Freeview box will help sort that out if the digital signal is good enough. Katie should be bringing that up on Monday, so I can try it out.

One visitor today, David, an old friend from pre-primary school days! Pre-primary school – I won’t even think how long ago that was!

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Well, the first few days are over – I’m now settled in the room, with one or two things accomplished. The TV, which was on a bracket 8 feet above floor level is now at comfortable viewing level, although the internal aerial gives uncertain reception! I have a spare Freeview box at home, so that may improve matters if I can get it brought up here!

Internet access remains fraught. The problem is that all 0845 numbers are barred at the hospital exchange. My consultant and nurse specialist are working on the case, meanwhile I have limited access through the mobile phone.

The treatment is continuing with the current two chemotherapeutic (spell that after a couple of pints!) agents, Fludarabine and Campath (the latter is a monoclonal anti-body) with few unpleasant side effects (so far). There is another one due (which I won’t attempt to spell without looking at the drug chart) which has more side effects; the drugs to counter nausea are very effective, but there are none to counteract the hair loss! I expect that it will remove the little fluffs of hair that is just starting to grow back after the debulking chemo before Christmas. Ah well, I’ll save on the razor blades!

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At last I’ve managed to get the blog working – many thanks to Mark for setting it up and hosting it for me!

Internet access is a bit tricky at the moment – at times the ISP regards this as “Adult Content” and blocks it (Mark – what else are you hosting?) but so far it seems OK.

Since admission on Wednesday, it has been all go. The Hickman line was inserted on Wednesday morning and the pre-conditioning treatment started in the afternoon.

The last two treatment phases (in 2002 and 2004) relied on large doses of chemotherapy or radiotherapy to attack the Lymphoma cells, and the self donated stem cell transplant was to repair the collateral damage caused by the chemo. This time the aim is different, and by using an unrelated or matched donor, the idea is that the incoming immune system will seek out and destroy the cancer cells – a true immunological approach, which intuitively feels like a good thing to do! The pre-conditioning treatment is to ‘make room’ for the incoming cells and suppress my own bone marrow to allow the ingraft to establish itself alongside my existing one, and eventually take over. Pretty advanced stuff.

So far feeling good in my little room in Guy’s – I’ll try and keep this site updated as time passes!

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Hello,

As most of you reading this will know, I am about to go back into hospital for more treatment for the ongoing Lymphoma.

Peter

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