My Inpatient Hospital Experience (Part 2)

Saturday 3rd February 2007

Up for a 6.05am start of an hour of Methylprednisolone on my last day. I have definitely lost a lot of my taste buds. My breakfast is two slices of toast, which I just about manage to eat but do not enjoy. The lemon lucozade is not working and I have a very dry mouth, which water cannot do anything about as I am finding that water is undrinkable. Tina arrived at 11am to collect me and lunch arrives at 11.45. My choice today was the Kosher beef, but it is not very nice – or is it my palate? In any event I cannot eat much and that was probably too much anyway with a car journey ahead of me. I get a final pre-discharge chat with Dr Austin and leave with a giant bag containing a cocktail of medications. I say my farewells all round and leave on a “high”. I have had a most wonderful experience. In addition to my ward friends, there has been a host of nurses, including staff nurses Lola, Marianita and Mithu, Doctors Sarah and Shannon, the cleaners and the delightful Laetitia with her food and drinks trolley and fabulous smile.

I walk out of the hospital and hit the figurative “wall”. A combination of extremely bright sunlight into which we drove, trying to text message my “escape” to all and sundry, the stop – start, bump and grind of driving through the busy roads of south London, whilst helping with directions from the map and a certain quantity of unattractive food lurking in my stomach, made me feel decidedly queasy. By the time we were half way round the Croydon by-pass, I was ready to dispatch the Kosher beef. No!! - wind the window down, keep taking in deep breaths and hope it passes. And it did. I slept the rest of the journey home, arriving at 2.50pm, with thanks to Tina. I then slept for the next hour, but managed to rouse myself enough to watch England beat Scotland at Twickenham and the triumphant return of Jonny Wilkinson (and Jason Robinson) to the England team. Slept some more and then phoned Matthew, Anna and Daphne. I could not face any tea or dinner as I still felt nauseous at times. Despite an intensely dry mouth and tongue, I squeezed down my medications and went to bed early.

Friday 2nd February 2007

Woken up at 3.30am by the sounds of some poor chap wretching badly out in the corridor. I just thank my lucky stars the way things have gone for me so far. I spend the rest of the night reading. The days start early in hospital and I am being given my second unit of blood at 6.40am! My canula has been in situ for 3 days so far and in fact stays for the whole 5 days. I am down to the shop at 7.20am complete with my transfusion kit to get my Guardian, some lemon lucozade – which seems tastier – and some Werther originals, just to prove how much I am struggling with taste! I have chats with Martin and Mary in the Safer Neighbourhoods Unit and get a visit from Jerome at 11am – previewed by his text message “Ok tell the nurses 007 is coming”!! I get a 30 minutes infusion of Methylprednisolone after lunch and find that both Henrys have gone! This is followed by the full 30mg dose of Campath over 3 hours, but which we shorten by 20 minutes. Before I have this first full dose I ask Sister Laetitia to say a prayer with me, which she starts in song. It is wonderful. So, everything has gone fine with the Campath build-up and, better than that, am told that my white blood count went down from 225 on Monday to 67 yesterday – I had no idea my count was that high! I have kept my weight at 79kgs.

Thursday 1st February 2007

I am up and doing at 6am, getting my 200mgs of Itroconozole at 6.30am for my sins. In addition to this, the Corsodyl, Nystatin and Aciclovir, my medication is also 20mg of Omeprazole and 480mg of Septrin (both once daily). I see Dr. Steve Devereux on his rounds this afternoon surrounded by his team. He tells me that the programme is ok and that I will start my 4 weeks of Campath from next Monday 5th February, irrespective of the completion of the Methylprednisolone by Saturday, and that the next week-long session of Methylpred will be at Brighton after those 4 weeks of Campath have been completed. Tessa drops by with some Tabasco sauce and Shwartz pepper to add flavour to my food, especially the soups. Had a visit at 4pm from Peter, ahead of his going to the RAC Club, Pall Mall for one of his regular Cornhill Club dinners – with Sir Trevor McDonald as guest speaker. He arrived as I was starting my 10mg build-up dose of Campath, which I was having over 2 hours and from which I had no ill effects. This was followed by the first of 2 units of blood I was due to have. My taste buds are starting to go awry. Peter’s clementines taste awful and my idea of lucozade was a waste of time. Between us, Samuel and I have coined the expression “the power of positive thinking” as a means of helping us deal with our problems. I suspect I used it first but he has latched on to it and bats it back to me. I hope it works for us both! As a consequence I decided that if I ever wrote up my hospital and CLL experiences into – say - a web log, then I would dedicate it to Samuel and “the power of positive thinking” ! The Methylprednisolone is having some strange effects. Tonight I am now not ready for sleep until after 1am, sitting up doing sudoku and reading City of God by Paulo Lins – what a book!

Wednesday 31st January 2007

A “red letter” day - Tina has come up to visit !! She would have been here from day 1 if I had let her, but with my hospitalisation starting off so low key, it didn’t seem to make sense. By now it looks as if I could be here anywhere between 5 and 7 nights! And I now have enough clothes to see me through whatever. This includes Tina – much against her will - bringing me my tracksuit bottoms! - far more comfortable for me to wear than my cords, or any other of my trousers for that matter. Tina has brought me a present bag from Viv Tuffin at work – she is such a lovely person! I text messaged a thank you to her later. Dr. Sarah runs through the programme again, after the hiccup of yesterday. It seems that things had got lost in translation between Steve Devereux’s “piece of paper” diagram and her putting it into a more formal plan. She also explains some of the possible side effects of Campath – fever and shakes - hence the need for a three day build-up to familiarise the body to its potential impact. Tessa Arscott also visits, all the way from the annex along the road and later on Jim Rodgers calls by in between dealing with his current inter-Parliamentary delegation. At 6pm I get a 3mg dose of Campath after my 2nd day dose of Methylprednisolone. I feel light-headed after the Methylpred. – the consultant’s abbreviation so it must be ok! - followed by tired eyes, seeing yellow in what is normally white and my eyes are focussing much more slowly. I later find that I get involuntary hiccoughs. I don’t appear to have any effects from the Campath. I hear from Daphne that unfortunately she has been told she is not a blood tissue type match for me. My ward friends include Danny, a CCTV worker from Dartford, with Hodgkins Disease, Samuel and two older men.

Tuesday 30th January 2007

In preparation for the start of my treatment, I am introduced to some of the medication I will be living with for the next few weeks or so – Corsodyl mouthwash and Nystatin anti-fungal liquid (four times daily) and the delightful anti-viral Itraconozole (fortunately only twice daily – ugh!). (Editorial Note: If only it was to be "for the next few weeks or so"! It transpires that I live with these medications for at least a year.) This is followed by the taking of MRSA swabs, to make sure I am not bringing anything nasty into KCH. I have to do one myself – eeeek!! My Aciclovir is increased from 200mgs to 400mgs. Talking of introductions, I am now a little more familiar with the rather primitive toilet and shower room facilities that are situated at the bottom end of the ward. Well, it is a Victorian hospital after all!

I find my “interesting” heart beat being checked by three more doctors who were imminently taking a medical examination. Apparently I may have what is known as a mitro valve prolapse - nothing serious it seems but it gives a slight echo to the second heart beat, which can be picked up by attentive ears on the stethoscope. I have been booked down for an echo cardiagram at some stage in the near future. I sign numerous consent forms – for the second time if my memory serves me correctly! - and then have the deadly bone marrow sample and biopsy administered by the gentle hands of Dr. Sarah. This is no. 6 in my CLL career to date and no more pleasant than the others. I have a canula fitted into my left forearm after four abortive attempts to find a suitable vein in my right!! Having waited for most of the day, at 7pm my first dose of Methylprednisolone is started. At 8.30pm nursing changeover time there is a meaningful professional discussion on whether I should be given my first “build-up" dose of Campath this evening. The night duty staff nurse wants to read the protocol for it and there isn’t a copy available, so “no” we wait to tomorrow.