Peter’s Hospital Diary

….. now that BT has fixed the network problem.

All should be working normally!

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One week on from the transplant and feeling OK! There are some side effects from the chemo kicking in, a couple of mouth ulcers and sore gums, and my throat feels a bit irritated, but I can still swallow OK, and eat normally – although this morning’s breakfast plumbed new depths – cold and overcooked! However, last night I didn’t get any dinner at all (maybe the catering staff have been reading this!) So one of the nurses heated up some chicken soup – very nice – thank you Debbie!

It is a cold but bright morning here in London, no snow though!

The night was uneventful – punctuated as usual with the observations and the early morning blood collection. Nothing from the vein this morning though, all from the Hickman line. That was followed by breakfast, already described, the junior doctors’ ward round, and the IV Itraconazole, girth measurement (stop laughing over there!!) and weight. That has all finished, so I must go and use the exercise bike and shower.

Yesterday afternoon passed reasonably uneventfully, although I did need a platelet transfusion. I suspected as much after a large bruise formed on the area where blood was taken from the vein yesterday morning (for the cyclosporin levels). This was confirmed when a reading of 5 came back. Normal range is 150-400! I also had a visit from Viki, the Haematology Nurse Specialist, and Liz, who is another transplant specialist late of the Royal Marsden Hospital.

Felicity came up to see me yesterday and stayed for about 5 hours so I could catch up on all that is happening at home, as well as bringing some clean clothes. I also had some cyclosporin after the blood test confirmed that the levels were correct.

You may have had some problems getting the blog in the last 18 hours. Mark had a problem with his phone line, and lost broadband. Fortunately he has another BB connection, so after a bit of reconfiguring, got this back on line. However it takes up to 24 hours for all the Domain Name Servers (the servers that your browser uses convert human memorable names such as dellmar.net into a computer readable address like 21.123.200.94) to update across the internet so that your browser can find them! End of networking lesson!

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It looks cold and misty outside this morning – I can’t believe how quickly time is passing – nearly at the end of January!

The daily routine has continued this morning, with the exception that the morning drug dose has moved to about 9 o’clock – a far more civilised hour – although the observations at 7 o’clock still take place! This morning blood was taken from a vein rather than through the Hickman line so that an accurate measurement of the Cyclosporin levels can be obtained.

My ankle is less swollen today – evidence I hope that the chemo last week is attacking the disease in advance of the incoming immune system, and my weight is getting back to normal as the fluids taken in last week are expelled.

I had a visit from the transplant consultant yesterday afternoon. One of the reasons for measuring my girth (I really don’t like that word!) Is to check for another condition – VOD (Veno- Occlusive Disease) This is a very rare (but potentially serious) complication when the hepatic vein running through the liver becomes irritated and affects liver function. Symtoms include an enlarged liver and fluid retention, hence the measurements and concern over accurate fluid balance. All seems to be well so far – and the danger is pretty much over now. I was at slightly higher risk because of the previous treatment I have had but then doubling a very small risk is still a small risk!

One thing I have noticed is that my stomach seems sensitive (but that could be a Pavlovian reaction to the thought of the food) so I have started the anti-sickness drugs again.

Stephen (old friend from grammar school) happened to be in London yesterday, and dropped by for a welcome visit. He escaped the pink apron treatment – current fashion colour seems to be white!

Finally, there was a fascinating programme on BBC1 last night – the first of a series about alternative or complementary medicine. Last night dealt with acupuncture, and confirmed that there are measurable changes in brain activity caused by the insertion of the needles. I have had acupuncture in the last 12 months, and while I can’t say what it did, I certainly felt an effect in well being afterwards. I’m looking forward to the next in the TV series.

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The weather has improved again – St Paul’s was gleaming whitely under a pale blue sky this morning – looking just like the Capitol Building in Washington. The nurses say that it is very cold outside although it is still 27C in my room!

Well the first day in isolation has passed uneventfully. I keep telling myself that it is just like being in a hotel – en-suite bathroom, constant room service, refrigerator, kettle, TV etc. But then the wake up call is usually user selected in a hotel, not every 4 hours, (or at 6:30 to give drugs – which would be of a completely different type in a hotel if some news stories are to be believed) and the refrigerator usually contains a mini bar, so there are some injections of reality to stop the fantasy!

Just after I wrote yesterday’s entry we had the ward round. Haematology doesn’t attract medical students, so there is no requirement to prepare a “difficult question of the dayâ€? for them, but the general consensus from the team was that progress is good so far (although it is early days.) My appetite continues to fade a bit. Now that I am in isolation, my food is cooked specially and tends to be either boiled fish or omelettes, unless I remember to order something different! The smell of boiled fish – especially after it has sat under a cover for 20 minutes… But I said I would write a separate page about hospital food… It is worthy of a chapter on its own!

Hot on the heels of the ward round came a visit by a representative from the Hospital Chaplaincy Service. We had a chat for about 10 minutes, covering life in hospital, etc, any spiritual need I might have (I refrained from comments about G&T) and then it was time for the next highlight – lunch – but we are back to food again – I must be running out of things to write about!

The afternoon passed quickly with a book, and then it was time for the Cyclosporin. That was put up late afternoon – then about three quarters of the way through, the nurse came in to take it down. The blood result showed that it was at 800 in my blood (I’m not sure what the units are) and it should be 150!!

I have queried that his morning, and the feeling is that the sample was contaminated. The drug is quite sticky and can remain in the Hickman line, even though it is flushed, and can contaminate the blood sample giving a false reading. The next sample may be taken from a different vein just to check. I don’t exhibit any symptoms of a high levels of Cyclosporin (tremors in the fingers) so all is probably well!

Soon be time for lunch (food again!)…

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It must be Monday as it looks very grey and misty over towards St Paul’s – just the sort of weather not to encourage you out on a Monday morning!

Still not in isolation, although as I write, the nurses are thinking of putting up the isolation precautions sign in advance of the blood test results. This is because the blood results yesterday showed that the counts are dropping, and although still have some neutrophils left, the chances are they will be down today. I’ll take some photos of my little room later and get them posted! (Stop Press – I am now in isolation – the door has clanged shut!!)

My parents visited again yesterday afternoon and stayed for about 3 hours. We were saying that we can’t believe I have been in here nearly 2 weeks. The time has flown by. I just hope the next few weeks in isolation pass as quickly.

There was a bit of commotion in the night, and looking out of the room this morning, the little sitting out area is now occupied by a patient occupied bed! I did notice some loud snoring during the night – I wonder if that is why he was moved? (Hope he hasn’t got the link to the blog!) Today started early anyway with the anti-fungal drug infusion at 6:45 this morning!

The current ‘concern’ is over the functioning of my kidneys. Fluid balance has always been a concern, and I have to carefully measure input and output (to use engineering terms) and also monitor my weight – remembering that a lite of saline equated to a kilogram in weight. I have put on weight while I am in here – I can’t believe it is the food, so it must be water retention. It is gradually dropping back to normal, although I was told this morning that I’m not drinking enough (water). My face is very puffy first thing in the morning (the chipmunk look) although that goes down after a couple of hours, and I’m told is a known side effect of the Cyclosporin.

There is some concern about my swollen leg. I have had a tendency to a swollen ankle since I had a lymph node biopsy last October. (Adding to the long list of scars – but at least this one is within my bikini line) It is thought that this is because an enlarged lymph node is partially blocking the drainage on my right leg. It got better after each of the two lots of chemo last year; and goes down at night, but sitting and standing tends to make it worse.

As an adjunct to measuring the circumference of my ankles, I am also having my ‘girth’ measured (makes me sound like a horse). I won’t give you details of the measurements, except to say that the only tape measure available on the ward is too short to go round me, so it is a two stage process involving lots of pen marks on my stomach! You have to smile!

Other than that, I still feel well. My sense of taste is definitely changing, and the ‘gag reflex’ seems a bit more sensitive (TMI) but I don’t have any mouth sores (yet). My appetite seems to be dropping off a bit, though wether that is the hospital food or changes caused by the chemo is hard to say!

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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 the 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 has 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.

Tags: GvHd, Transplant

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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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