The Ceiling Falls In

Monday 8th to Sunday 14th September 2008

I work from home on Monday. Doing my physio around 12.30pm I realise that there is a change in the quantity and nature of the gunge I cough up – the official terms are “sputum” and “expectorate”. As the afternoon progresses I am constantly coughing up more stuff, then feeling fluey and muzzy headed. I check my temperature around 4.15p – mid 37s – and by 5pm it is 38. What an unbelievable reaction after just one short course of the steroid. I call the Day Unit and am advised to check in through A & E but that a bed was available in the Medical Assessment and Surgical Unit (MASU). Tina and I check into A & E and are immediately attended to, which is excellent. After preliminary questioning, I am cannulated with remarkable ease by the nurse. Even more remarkable, it is my right arm. This is the first successful entry into a vein in my right arm for the first time this year. I have a chest x-ray and am seen by a doctor who tells me I have “pneumonia” in my right lung. I later find out that pneumonia – which has quite dramatic connotations – is a generic term for chest infection, but that of course isn’t explained – an unnecessary cause for anxiety in my opinion. My temperature at 8pm is 39 – I have never had that before – and at 10pm is down a bit to 38.2. I am prescribed Clarithromycin 500mg tablets twice daily, 1 gram of intra-veinous Amoxycillin three times daily and put on a large saline drip. My blood results are soon with me – Wbc: 20.7; Neuts: 1.2; Lymph: 19; Hbn: 9.3; PLT: 42; and CRP: 88.

I am moved to MASU at 11pm, Tina leaves for home and I try to settle down for the night. This is more easily said than done as I am coughing and spluttering all the time, especially when laying horizontal. So I prop myself up, but I cannot sleep. Around 4.30am I coughing up stuff big time and it makes my shoulders ache so much I have paracetomol. I have a big head sweat around 6am and my sputum is now rather bloody. I had arranged five appointments in London today and tomorrow and have to walk up to the 6th floor foyer area to get a signal on my phone. Luckily I am able to get through to everyone to cancel. I get sympathetic responses. But this is a real nuisance as it took me ages to make the appointments in the first place and I will have to start again, as and when I am back on my feet. Kat sees me at 10.30am, changes me on to Tazocin – three times daily - and orders another saline drip. I am later seen by a new haematology consultant – well new to me – Timothy Chevassut. At 12.30pm I am moved to the Haemotology Ward in the six bed room they share with Renal. My lunch is lousy. I realise that I have not done my physio since Monday morning, so have a big session. I have intra-veinous Gentamycin – once daily - added to the Tazocin. Tina arrives late afternoon. I am feeling absolutely knackered and my temperature at 6pm is 39.9. Now that is HIGH! I have two paracetomol and a big sweat. I am dozing so much that when Tina leaves for home I am asleep. That is the first time that has ever happened. By 11pm my temperature is 38.2 and I am given a bag of platelets. I then get the shivers and shakes, as if I am hot and cold at the same time. Jess tells me it is “rigour” which can occur as the body cools down from a high temperature. She gives me a couple of paracetmol and it soon stops. But it was a funny experience while it lasted. I have more sweats through the night and have to change my T-shirt twice. I am feeling really grotty.

My early morning temperature check on Wednesday shows me still up at 38.3. I have a home-supplied breakfast of yogourt, muesli and mango. It is much better than the hospital food. By 10am my eyes are not focussing well, I am feeling weak headed and very dozy. My blood results today are – Wbc: 9.9; Neuts: 0.6; Lymph: 8.2; Hbn: 6.9; PLT: 42; and a CRP reading of 434. So I am neutropenic and seriously anaemic, with a very high indication of infection. Secretions are trickling in at the bottom of my throat, from where I don’t know and these are making me cough involuntarily, which then brings up stuff from lower down. This makes the muscles in my stomach, chest and diaphragm very sore. I get a surprise visit from Matthew in the morning - which is great – and we are shortly joined by Tina. I am seen by Timothy Chevassut and team. He cannot say for certain what the cause of the infection is, but its following immediately on the steroids cannot just be coincidental. I am to have two units of red cells, GCSF daily and to resume my colomycin by nebuliser. I am told that I will be here for a week. On the positive side my appetite has not been affected, although the taste of water is not too nice. So I am drinking diet coke and ginger beer, which taste much nicer. I have two very productive physio sessions and resolve to maintain this regime throughout my stay. Tina comes in at 5pm and she helps me to have my first wash. I have been too unsteady on my feet to have a shower or wash properly. I have anti-biotics and then blood, meanwhile my temperature moves from 38.7 to 38.1 to 36.9. By midnight the anti-biotics has one certain effect – I now have diarrhoea! I cannot sleep and sit up reading and doing Sudoku until 4.30am, coughing and spluttering.

The big story today is the High Court decision that West Sussex PCT must fund the supply of Revlimid to Colin Ross of Horsham, who has multiple myeloma. His consultant had unsuccessfully gone through the application and appeal process but Colin Ross had decided to challenge the PCT’s decision. I will be keen to read the full judgement as it has major implications for me, with my appeal supposedly being heard on Friday. It is difficult to know at this stage if any form of precedent has been set.

Thursday morning, my temperature at 6.30am is 37.6 and my diarrhoea continues - with regularity! It is beginning to give me a lot of discomfort. I duly supply a sample. I have established my breakfast regime of yogourt, bran flakes, cut fruit and honey. I get a text message from Anna in Los Angeles, which is lovely. My blood results today are – Wbc: 4.3; Neuts: 0.4; Lymph: 3.7; Hbn: 8.2; PLT 27; and CRP down to 299. My weight is 80kgs, but I put two or three kilos down to fluid in my legs from the steroid. I had noticed on the weekend that the backs of my thighs and knees had tightened up slightly. Sister Peter comes in late morning and gives me Holy Communion. She is such a lovely person. I have another two units of red cells starting around 2pm, but running slowly because of my temperature. This is followed by the Gentamycin, three hours of Vigam – my monthly dose – and then the Tazocin. It is all over by 2.15am – 12 hours of continuous infusions! Over that 12 hours my temperature is checked six times and varies from 36.8 to 38.5. Meanwhile in the late afternoon Tina is in and I can have another wash. In the evening I start back into John O’Farrell’s very amusing “An Utterly Impartial History of Britain – or 2000 Years of Upper Class Idiots in Charge”. I had a very sweaty night, changing my T-shirt twice, regularly having to visit the toilet and having some really weird dreams.

Friday morning starts with Tazocin, followed by another saline drip as I am at risk of dehydrating with all my diarrhoea. My physio is still rather painful and not helped that I have extra secretions finding their way to the back of my throat and making me cough involuntarily and earlier than I want to during the exercises. I have to rest up afterwards as it is very tiring. Timothy Chavassut changes me from Tazocin to Meropenem three times per day, as this may be more effective. I am also to resume Colomycin using my own nebuliser machine. My blood results today are – Wbc: 2.6; Neuts: 0.2; Lymph: 2.1; Hbn: 9.4; PLT: 18 (YES – 18!!!); CRP: 190. I am moved to room 3 mid afternoon and at last having some privacy. This gives me my own bathroom and I wash myself for the first time. I am recannulated for the second time since I have been here. Two days seems to be the limit the nurses want to risk with a cannula so as to prevent any additional infection. Tina is with me early evening and Matthew calls by later as Charrise is singing in Kemptown. He fixes my i-pod, which had refused to get going for me. I now can have music on tap. I have a bag of platelets to move my count up from an unprecedented 18. My temperatures today have hovered around 37.1 and 37.4 but peaked once at 38.4.

Today is the day West Sussex PCT is supposed to hear my appeal. I would be surprised if they do in fact hear it. I think it more likely they will delay it while they take legal advice following the decision of the High Court. If they turn me down, I would see it as a “knee jerk” reaction. The countrywide debate on funding of “individual needs” drugs is still bubbling, with the highly respected Kings Fund saying that people who can afford it should be allowed to “top up” the funding of non approved drugs, although they should also pay for their ongoing treatment relating to their condition. But they should not lose their rights to other forms of free NHS provision - as seems to be the case at the moment. Sounds like two-tiers could be forcing its way into the NHS and that would be really bad news.

By Saturday I think I am beginning to feel a bit better in myself, no doubt because of the four units of red cells I have been given. It does not mean that any of the symptoms I came in with have changed at all, because they have not, although my taste for water has improved slightly. My blood results today are – Wbc: 2.9; Neuts: 0.6; Lymph: 1.2; HBN: 9.4; PLT: 27; CRP: 191. My weight is 80kgs. This is high for me and probably due to fluid in my legs as a result of the steroids last week. Have I mentioned that before? I can’t remember. Tina, Marva and Peter come late morning. M & P flew in from LA last evening and are staying with us this weekend and next. Just our luck I should be in here! They bring me a super book “All the Saints of the City of the Angels” – an artistic tour of the many LA streets which are named after saints. It is beautifully illustrated from paintings by the author and tells fascinating stories of the respective saints and the streets themselves. Mary Alston from work joins us just before they leave and so at last meets Tina. About an hour later, as she is going, in come Tony and Pam. This is all very nice. Meanwhile I have five attempts made to get a blood sample from my arm to check on my Gentamycin levels – ouch!! My temperatures today are measured six times and vary between 37 and 38.2. I am still sleeping upright to minimise my coughing. This tends to give me neck ache over time, such that by 5.20am I have a headache and am given two Paracetomol to get rid of it.

Chaos breaks out on the international money markets on Sunday morning as the long established US bank Lehman Brothers goes belly up. It is another victim of the sub-prime mortgage scandal and the horrendous mess that banks all over the world have got themselves into by selling clients debts to other banks and engaging in dead dodgy financial dealings. Meanwhile the US government forces Merrill Lynch to be taken over by the Bank of America - one of the more solid operators over there. My bloods today are – Wbc: 1.9; Neuts: 0.1; Lymph: 1.7; Hbn: 8.9; PLT: 18; CRP: 146 - so no real change there, although I feeling much stronger in myself. My weight has dropped to 77kgs with the loss of the fluid from my legs. I have Holy Communion from Sr Peter at midday and after lunch and my physio I find I am in the frame of mind to resume typing my blog. I have to catch up from Tuesday of last week, just before the start of my new treatment, so there is plenty to be done. Tina, Marva and Peter arrive mid afternoon after having lunch at Matthew’s. Tina has brought in a CD which John Searle recorded for me this morning of the folk Mass he led to celebrate Racial Justice Sunday - what a lovely idea! It was also a Mass said for Tina’s parents, John and Eve, so all very appropriate. My temperature is measured four times today and range from 37.3 to 38 – still too high.