Peter’s Hospital Diary

Its another really sunny morning again here, the sun is shining on St Paul’s Cathedral and reflecting off the white stone; it looks really beautiful.

Yesterday afternoon passed pleasantly. I went and sat out on the ward, sitting in the sunlight, reading a book, and ‘borrowing’ a wireless broadband connection. It was quite useful as I had a friend’s shared on-line photo album to browse - not practical with the dial up connection. However the connection was not without problems, and while updating yesterday’s post, I lost some of it. I think I have restored it now. I hadn’t realised how much I would miss broadband.

My sister, Anne, arrived mid-afternoon, having had a day in London with her family. We decided that it would be better if my niece and nephew didn’t come up to te ward - schools are unhealthy places, and childhood sniffles and ailments can be serious to the immune impaired, of whom there are several on the ward, so they went off to Tower Bridge. Anne stayed for about an hour and a half - then half an hour after she left David turned up, fresh from Germany, and bearing chocolate! Thank you David - my chocolate stocks are now pretty well topped up! David left at about 7, so my afternoon passed quickly.

I won the Itraconazole discussion, and I am now getting the drug through the Hickman line. A great improvement which ensured the integrity of breakfast this morning! Quite why it had to be given at 6:30, I’m not sure, but it was a small price to pay to escape the taste. The taste has become worse as time has progressed, indicating the changes in my taste buds caused by the chemo. As yet I have not suffered any mouth ulcers or other significant side effects, (apart from the ones caused by the action of the chemo on the cells in my gut - but that is probably TMI!) but I guess it is only a matter of time.

I am not yet in isolation, although I wouldn’t be surprised if the blood results from this morning show that I am neutropenic (that is, no neutrophils - white cells used to fight infections) which will be when the main door is sealed (hi-tech - masking tape!) and the ‘air lock’ system brought into operation.

Anyway, better finish here as the tea trolley approaches, bearing cake and snacks!

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It is a lovely sunny morning here in London:

Yesterday afternoon was eventful. The non-medical highlights were a visit by the aromatherapist who gave me a lovely foot massage, and another visit by Simon for a natter! The medical highlight was a blood transfusion!

Dealing with the blood transfusion; the blood test results from the morning came back showing that my haemoglobin (Hb) level was down to just over 8. The normal level is at least 12.5 although I have been at about 10 since starting treatment last November. As 8 is a little low, two units of blood were ordered and transfused over about 8 hours. The drop in Hb is probably a warning about the rest of my blood counts, so I am expecting to go into isolation this weekend. This doesn’t preclude visiting, but does mean that visitors have to remove outdoor clothes (coats etc) before entering the room, and wear a fetching pink plastic apron before passing through the double door system into the room!

The aromatherapist (Kim) is employed by the Richard Dimbleby Cancer Fund. This works to raise money to help find a cure for cancer, and provide care for those who have it. They provide capital equipment for hospital, and contributed to the new PET imaging centre at St Thomas’s Hospital. I have benefitted from that with several (over 12) PET scans in the last 7 years. They also provide funding for cancer research, and one of the patient care services includes aromatherapy. Last week I had very relaxing back and shoulder massage.

After the massage, I took advantage of the remaining time of freedom (before isolation) to sit in the sun on the other side of the ward outside my room. Three beds have been moved and it makes a good sitting area. It also gives a view of an unprotected wireless broadband network, so by balancing the laptop at the right angle on the windowsill, I could send a few e mails and update the blog without using dial up!

I slept reasonably well last night, apart from a slightly uneasy stomach. I don’t know if it the effects of the chemo, or a bug (there has a been a particularly unpleasant stomach bug doing the hospital rounds) but this morning I felt a bit rough. However breakfast arrived and that went down OK - until I had the Itraconazole (remember the description in an earlier post!) I will gloss over the details, except to say that breakfast wasn’t as nice the second time; I think I will be lobbying for the IV version of the drug! I have just looked at the ingredients - apart from the drug itself, it contains saccharine and sorbitol (artificially nastily sweet) and propylene glycol (unpleasantly syrupy). Not a lot going for it really. So if anyone from the makers, Janssen-Cilag, is reading, the product sucks!

Moving swiftly on, I am looking forward to a visit from my sister this afternoon. She and her family are having a day in London, and then she is calling in later.

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The transplant took place as planned yesterday afternoon. After all the build up, the event itself is a bit of an anti-climax - just a bag of cells that are infused into my veins via the Hickman line. However in a way it is my life contained in that bag! Scary thought!

After the transplant I had a long Piriton-induced doze for the rest of the afternoon, and woke up just in time for a visit from Felicity, and then Katie. Yesterday was Katie’s last day in London and she and Felicity travelled home last night. I slept well last night too - perhaps relief that the transplant has finally taken place. It is now a waiting game while the stems cells swim round looking for their new home in my bone marrow, and start the controlled takeover bid! The estimates are about 14 to 21 days for a donor transplant (it was 12 for my last self donated transplant). I am expecting my white cell counts to drop off this weekend, and that signals the start of isolation precautions.

This morning it is a wet but clear day in London. The building works outside started early this morning. I’m not sure what is happening - I think it is improving the access to the front of the hospital. There is a big refurbishment programme in place for the hospital. The room I am in has been re-decorated since last year, and the main ward has improved since my first visit 3 years ago, but it is due for a major refit soon. I can’t help smiling at the thought that this is taking place after the main hospital entrance hall whas been completed!

I have managed to get my phone line internet access restored, but I think I shall have to be a bit more circumspect in using it!

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Today started badly! Although the pneumatic drills and trucks were silent, and I had a good nights sleep (aided by a half bottle of wine that last night’s visitor, Melinda brought in!) I was unpleasantly surprised to discover that 0845 and all external access from my phone has been blocked. At the moment I am writing this offline in expectation that something can be resolved, otherwise it will be back to posting via the mobile.

But back to the daily stuff. My day of freedom from drips yesterday wasn’t totally true. The saline stopped at abut 4, but before that, I had started on another drug, cyclosporin. This is an immunosuppressant, and I will be on some form of the drug, either IV or tablet, for the next 2 or 3 months to control graft vs host disease.

That finished in the late afternoon, just after Katie arrived or her visit. She had a day off today and did some sightseeing - including the Sherlock Holmes museum in Baker Street. She goes home today - I’ll miss her visits.

Just after Katie left, Melinda arrived bearing the already mentioned bottle of wine! Very nice too. Melinda is an old friend from post University days, and we had a natter for an hour or so catching up.

I also had a visit from my haemotology nursing specialist, Viki. Viki has been incredibly supportive through the last few months in the build up to today. We had a chat about the final details of the transplant, which will take place this afternoon. Technically it is very simple. The cells that were harvested from the anonymous donor yesterday afternoon are just transfused into me via the Hickman line. I will probably have an intravenous anti-histamine (Piriton) first which makes me sleepy, but the process takes less than an hour. Psychologically though this is a bit different from the self donated cells. The fact that these are different, and contain different DNA, which will become part of me, is a very strange concept. I cannot find adequate words to express my gratitude to the donor , but still, the concept IS strange! I know that it is possible to change blood groups after a transplant, although ‘my’ donor has the same blood group as me. Oh yes, a cameraman from ‘City Hospital’ will be on hand to film it for the next series!

Meanwhile the minutiae of the morning has continued. Bloods have been taken, and breakfast will arrive in a moment, then I can see about getting the phone line restored - which at the time of posting - isn’t.

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And not only wet, this morning the view across to The City is shrouded in mist making the NatWest tower look very ghostly.

However, first some good news - the blog has moved to a more powerful server, (thank you Mark) so the response times should be a bit faster, and the reliability a bit higher. Not sure that it will do anything for the quality of the writing though!

Not a very good night’s sleep last night. I don’t know if it was a side effect of the chemo (I looked it up on Google - it is related to the mustard gas compounds used in WW1, no wonder the bag is covered in warnings about spillages, lucky it just goes directly into my vein…!) or the noise of the infusion pump putting the saline into me, but I was very restless until the early hours, when I dozed off to be woken by the colleagues of yesterday’s pneumatic drill operators collecting the rubble in large trucks. It is all quiet now - must be tea break again.

Another first this morning - breakfast was hot! One of the ward staff kindly went and fetched it from the kitchen for me, so it was fresh - and delicious. I think I had better make the most of as I can ‘feel’ my sense of taste altering - another side effect of the chemo. This is also a precursor to potential mucositis (inflammation of the mucous membranes) particularly in the mouth, which can also make eating difficult. Oh well, it’ll be back to the chocolate then!

I am on the last bag of saline (3 litres over 24 hours) so I am tied to the infusion pump until about 2 o’clock this afternoon. This makes moving around the relatively small room an interesting evolution, worthy perhaps of “strictly come dancing� as I pirouette around with my infusion pump on its stand!

More welcome visitors yesterday afternoon (thank you Simon) and then Katie. She finishes her work experience tomorrow, and will be going back home, so if any of you in London, do drop in to see me!

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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 couldnt 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 gray 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 te 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 areial 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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