Three Weeks in Howard 2 Ward RSCH

Three Weeks in Howard 2 Ward RSCH

Saturday 31st March 2007

I am awake at 5.40am – intricate ablusions again as was the case twice during the night! I am up and doing by 6.30am and checking my weight – 77kgs. I am on a Tazocin drip at 6.55am. through the cannula. Julie had tried a bolus but it hurt like mad so we changed it for a drip, which was a lot better. Then followed Ganciclovir while I had breakfast and then at 9.35am I was given the Foscarnet. This is very painful through the vein in the back of my hand and I need Paracetomol to reduce the discomfort. I have a 2 hour break from the pain of drugs through the cannula until 12.30pm when I have my next dose of Tazocin for half an hour. Meanwhile Tina has arrived. At 1.10pm I have my first observations of the day – which are BP: 143.75 and temperature 36.8. I am immediately told that I am moving to Howard 1 downstairs where I share a side bay with a chap called Colin Hillman from Willow Way, Hurst. What a small world! I am immediately seen by Tim Corbett. My CMV count is 5652 as of a sample examined at Kings on 29th March – I assume taken on Monday 26th March. This is considered to be good progress and every reason to continue with the combination of Ganciclovir and Foscarnet as prescribed. The chest infection has now moved into my bronchial tubes and the anti-biotics will continue on that problem as well.

I am on the ground floor with a window side bed facing south as before in Howard 2 and straight out on to the front car park. I am made very welcome by staff nurse Ali and charge nurse Leigh, who gets to work on my PICC line. The good news is that the line has cleared, no doubt due to the best efforts of Phil upstairs last evening, but with the Urokinaze having a delayed effect, so I am able to have my Foscarnet via the line and the cannula removed from its painful position on the back of my hand. My observations this evening, taken at 7.15pm and 9.25pm were BP 138/68 and 127/67, temperature 37 and 36.3c. respectively. I spend the evening getting back into “With Their Backs to the World” by Asne Seierstad – fascinating.

Friday 30th March 2007

Up and doing at 7am and observations taken at 7.20am:- BP 150/71, temperature 35.9c and weight 76.5kgs. Start ed a unit of blood at 7.30am for two hours. At 9.50am Phil has a problem flushing my PICC line ahead of my morning Ganciclovir to the extent that it is necessary to fit a cannula – rather painfully to my right wrist. I have visits from Sarah, Terry and Lesley and then Tim Corbett. The CT scan result looks good with less problem visible than is obvious from examining my chest himself. He puts me back on Tazocin and off Ciprofloxacin to treat my chest. Also I am prescribed Foscarnet twice daily to complement the Ganciclovir whose dosage is reduced by half. He advises that we keep to the results from Kings as the definitive position rather than their own laboratory. This ensures consistency of results as they are inevitably a lot more accurate. He aso wants me to swap back to Itroconozole in liquid suspension rather than the capsules.

Belatedly I get the Ganciclovir which was due at 10am followed by the Tazocin both via the cannula. Meanwhile Phil tries to clear the PICC line with a Urikinaze drip for nearly two hours but is unsuccessful and is still unable to flush it but cannot understand why not. I get my blood results from samples taken earlier today. These are:-
Wbc: 1.3; Hbn: 10.1; PLT: 122; Neut: 1.0. Not good and I will need GCSF this evening.
My 4.45pm observations are BP 131.71; temperature 36.6. I have a third unit of blood this afternoon which again is transfused via the cannula. But this is very painful despite the three hour rate we let it run at. Flushing afterwards is very painful. This has been a most frustrating day with much of the time lost attempting to get infusions into me that don’t want to go in and every effort being made to clear the PICC line so that we get the best use out of it.
Add to that some of my new medications have not come to the ward from the pharmacy and we are collectively fed up. I catch up on my weblog from 7pm after Tina has gone home for the evening. My observations at 9.45pm show BP:146/70 and temperature 36.7c. Meanwhile I have a cannula inserted by a doctor, rather painfully in the back of my right hand. I was given my Tazocin via a bolus, surprisingly easily, followed by the new anti-biotic – Foscarnet – to complement the Ganciclovir and tackle the CMV. I was asleep on the bed from about midnight to 1.30am and then properly to bed, after some intricate ablusions advised as necessary in conjunction with the Foscarnet!

Thursday 29th March 2007

I am awake at 5am and catnap through to 6.30am My 8.30am observations show: BP 149/67 and temperature 36.3. My weight is 76kgs again – consistent if nothing else as I am checking it at 7am every morning before having a shower. Guido sees me to tell me that he personally labelled and marked Monday’s CMV blood sample for dispatch to Kings, so he cannot understand why it was thought it never went. He checks further and verifies that it did go. So what all the fuss was about yesterday, I don’t know!! Just very annoying to not know whether things are going right or not. Meanwhile Tina has been in contact with Viki Bevan at Kings about the blood and about what is happening to me here. Her checks show that the blodd sample has not arrived! She will speak with Steve Devereux about my case as it is possible he might want me transferred up there. 10.45am and Sister Peter brings me Holy Communion and an hour later I have my consultant’s visit from Dr Duncan. “Just keep going with the current treatment” is his opinion.

I then have visits from Colin Dunbar and Vincent Meagher, plus magazines to keep me from being bored. As if I could be! I doze off after lunch until 3pm when I go for the high resolution CT scan of my chest. I cough heartily with every deep breath I take – and I have to do at least a dozen. Still it shows that the problem is clearly not going away yet. My 1.30pm observations are BP: 126/59 (that’s low!) temperature 36.5c. I get a text from Cath and Jim to say they found La Favorita beret shop in the Plaza Mayor in Madrid and have bought me a beret, size 57! Great! Tina is with me when we are told by Dr Vicky Tindall that Tim Corbet and Steve Devereux have conferred today and decided that Ganciclovir should be supplemented by another anti-biotic called Foscarnet in order to drive down the CMV count more effectively and the dosage for the Ganciclovir will be reduced by half to make way for the other. RSCH has been independently testing my CMV samples separate from sending off samples to Kings. Their latest count is 1250 – I am not told what day the sample is and we don’t know how that compares with the sample for Kings taken on the same day. Later I have my Teicoplanin by bolus and Jo starts me with a unit of blood. I will have the second tomorrow. My evening observations are: BP: 137/63; temperature 36.7.
My blood results for today are:- Wbc: 3.0; Hbn: 8.3; PLT: 122; neut: 2.7; CRP: 9.0.

Wednesday 28th March 2007

Awake at 6am for the start of the Today programme and showered at 7am. I am still coughing for England! My morning observations are BP: 145/67 temperature 37c. My weight is 76kgs. Following a referral by Richard Cook, I have an appointment with the urology consultant Mr Nawrocki at PRH on 16th April about all the urinary infection problems I had back in September and October last year. I had already put off a February appointment as I was on one of my day visits to Kings. I had mentioned the problem to Steve Devereux to which he had commented that you can get CLL in the bladder. Coincidentally or otherwise my urinary problems had occurred at the same time as my CLL was obviously returning, but since then there has been no recurrence. Mr Nawrocki’s secretary advised that she would mention this to him on Monday on his resumption from holiday, so he could consider the best way forward, given my present position and Steve Devereux’s comment. He works from this hospital as well and might visit me.

I have a visit from Michel in the morning and Tina arrives about midday in time for Sarah Hartley’s round. My chest is still causing some concern. They want to be sure that the infection is bacterial and not fungal. She expected I might have had the high resolution CT scan requested yesterday – but no. My haemoglobin level is such that I will need transfusing, probably with two units and probably tomorrow. I later find out that the CMV blood sample taken on Monday from me was not sent to Kings, so I have to have another taken. I had been told that two CMV blood samples per week should be taken from me; on Mondays and Thursdays. This is the second week that the Monday sample has not gone to Kings. Once is an unfortunate mistake; but twice smacks of muddle and incompetence. It is my opportunity for discharge by getting two negative samples in a week that is being jeopardised and this is extremely frustrating and annoying. My observations at 2.20pm show BP: 155/75 and temperature 36.4c. Tina is having lunch with Wendy Arscott in town, but will be back later in the afternoon. Meanwhile I am sitting in my chair by the window typing but getting very annoyed about the smell of cigarette smoke drifting up and through my partially open window from the builder working in the room immediately below mine and who has his window wide open. I know that as I went down to check it out! Apparently the hospital “no smoking” policy does not apply to the builders working on refurbishment of Howard 1 ward below. I feel a Victor Meldrew moment coming on, but must suppress it to keep my blood pressure down!

I spent some time scanning through Chris Pascoe’s book on Prince2 project management ready for Matthew coming in this evening. I made a few notes of points which I thought might be of relevance to him. I will leave it up to Matthew to decide if he wants to take the book with him and he does. Tina comes back from her lunch having sat and chatted with Wendy from 1.30pm to 4.30pm. Before she leaves to go home I get my blood results, which are good:-
Wbc: 2.8; Hbn: 8.1; PLT: 140; Neut: 2.6; CRP: 13. My haemoglobin level is down further from yesterday, so transfusion is a definite. I also text out an update message mentioning my chest infection and the expectation of being here until after Easter. I get several responses including one from Tim Godwin. Matthew and Charrise bring Ella, Lily and Mia to visit me and we have a somewhat chaotic hour. The girls go out for a short while and Jo is able to give me the Teicoplanin in a bolus, which takes no time at all, rather than a half hour drip. My evening observations are:- BP 142/68 and temperature 36.2c. Having brought my web log up to date I am now in a position to start reading my Asne Seierstad book about Serbia. It has taken two weeks to get here this point!

Tuesday 27th March 2007

I slept an hour and a half on the bed whilst initially listening to the midnight news! Once in bed proper I then slept until waking at 6.40am – with just one night time interruption. No need for my I-pod to get me to sleep and quite the most comfortable night’s sleep I have had since being here. That took long enough for the effects of the Methylpred to wear off! I am showered by 7.30am, my morning weight is 76kgs and my 9am observations are: BP 143/63 and temperature 37.1. I get a phone call from Richard Cutler from his lorry somewhere on the road back to Shorne from Ashford. He has been up since 4am! He is talking about Jane and him coming down for a visit, perhaps next Wednesday. I also receive a parcel from Jeanette containing a selection of bite size bars – a lovely thought. In fact I am eating a Crunchie bar as I type! I have also determined to get back on track with drinking two litres of water per day – which I did. This had slipped since last Friday because I was finding water rather unpleasant to taste, whereas today things seem to be much better. Despite this I bought two small bottles of Lucozade from the hospital shop, hopefully to give me some variety.

Tim Corbett comes to see me at 12.15pm with the news that the CMV count in my blood sample taken on Thursday 22nd is 30346, 23000 down from the initial count from a sample taken during the week commencing 5th March. This is the first indication of the level of progress I have made with the Ganciclovir. This result is after 7 days treatment with Ganciclovir and two weeks after the original blood test. Nonetheless this is not good news at all, because he is still talking about my being here for another two weeks. At the same time he isn’t overly happy that the chest infection is clearing up yet and wants me to have a high resolution CT scan of my chest to see if all is ok. At this stage I can see me being here right through Easter and it looks as if our Southwold weekend is in serious jeopardy. For the first time since being admitted into hospital I am really fed up and particularly so in anticipation of how Tina will be about it. As if prompted by this bad news, my blood pressure goes up in my lunchtime observation – BP 161/72 temperature 36.3c. I spend the afternoon on the laptop until Tina arrives. I fully expect her to be upset and frustrated by the news, but amazingly she takes it very well. I guess she may have already expected it, whereas I was optimistically thinking I would be out at Easter and we would make it to Southwold. We decide we should cancel the weekend, although it transpires they only need 48 hours notice and we have paid no deposit. So we still some options. My evening observations show BP back to 145/72 temperature 35.8c. My blood results today are good news, however, with a rise in my white cell counts as follows:-
Wbc: 1.5; Hbn: 8.5; PLT: 122; and Neut: 1.3. No doubt thanks to GCSF. I spend the evening typing and have finally brought my web log right up to date!!

I have now been in Howard 2 ward for two weeks. I came in with a bad cold and temperature and was told I would be here for the rest of the week while they sort me out with anti-biotics. Then came the news of CMV on the Wednesday and from that point I am on what has turned out to be a rolling two weeks of treatment for it, which is now going to go past Easter. Overall I glad I am on this ward rather than up in haematology, if only for the reason that I get a good signal on my mobile phone! The staff are good and Guido is a gem. The catering and cleaning staff are a delight, almost all of them from the four corners including Lithuania and Brazil. I have a good view out of my window, can watch the world go by if it suits and get sun when it is out. Having my own room I have privacy when I need it and with my keeping late hours in the first week and a bit, I do not disturb anyone else. I can rest or sleep when I want to, read my paper from cover to cover if it takes me, or get on with typing my weblog, albeit I will not get it on to the web for another two weeks at least. I have a very good signal with my mobile phone and am in constant contact with family and friends. I have Holy Communion brought to me on Sundays and Father Foley might pop in from time to time. I have good interactions with the nursing teams, particularly as my room is situated right opposite their station. So I can be as nosey as I want to be. I don’t have much interaction with other patients, some of whom are rather poorly and some I never or hardly ever see. This is a very different experience to what I had at Kings and considering I must be here for another two weeks or so, I am glad I have my own room. I might have run out of energy had I been in a ward with other people for more than a week – and I am looking at four! Today was the first time I can say I was fed up, getting news of the CMV test. It was not so much for myself but in expectation of Tina being disappointed.

Monday 26th March 2007

I had quite a good night’s sleep for a change - no need for the soothing sounds from my
I-pod. Nebulizer , observations, breakfast, Teicoplanin, Ganciclovir and blood samples followed on each other so that I hardly moved out of my bed until gone 11am! Guido had difficulty taking my blood, despite the two consecutive infusions going in without problem - would you believe it! The cannula on the back of my right hand was then removed, making it easier for me to shower, but leaving a tender bruise. Outside there is clear blue sky and it could be a warm day in here as well, as I will get direct sun on my window in the afternoon. I have a black tongue, which was noticed by Vicky Tindall yesterday. I wonder if it is fungal and then forget to tell Tim Corbett about it. My blood test this morning shows that I am even more immune compromised with readings of:-
Wbc: 0.4; Hbn: 8.2; PLT: 113; and Neut: 0.2. On the other hand my early morning check has BP at 154/62 and my temperature 35.9. I don’t know why but I have no further observations today until I ask for them at 10pm. They show my BP as 140/60 and temperature as 36.8. My weight tonight is 77kgs on the same scales as I always use. This compares with 75kgs yesterday morning. What is that all about?

I had a visit just before lunch from Mia Morris, who is an eye consultant working just across the road. That was nice. I also get a visit from Tim Corbett about the same time at which my blood results (as above) are given to me. He attributes the low white cell results to the Ganciclovir. Obviously this means that I am even more immune compromised and he prescribes GCSF to help bring the counts back up again. My chest is still rattling and he thinks I ought to have a focussed CT scan of the chest to check it out. I have a dozy afternoon - perhaps lack of recent sleep catching up on me? – until Tina arrives. Tina is unhappy because she wants me to be home and not here. She doesn’t like it on her own and can’t wait for me to be discharged. It is so unfair for her. I get all the attention and am laid back about the whole thing, whereas she is really the one suffering.

I have a GCSF injection followed by my evening Guinness and dinner. We are still having problems with the PICC line as Sally and Guido try to start me with the Teicoplanin. It is eventually realised that the nozzle on the arm end of the PICC line is the problem and Guido fits another one and off we go. It was broken inside and stopping the flow through it. Perhaps that has been the trouble all along. I call Matthew this evening for a chat as I hadn’t heard from him today. He is frustrated and fed up on my behalf and, typically, reacting just like Tina – they are so alike in temperament, etc. We resolve that he will visit Wednesday early evening with the girls, which will be great. My evening ends with a little typing after the Ganciclovir finishes at 11.30pm.

Sunday 25th March 2007

With the clocks going forward an hour, my “body clock” told me to have another hour of sleep – or at least rest - this despite my sleep pattern still being out of kilter. So my morning call to Tina was at 8am. I decided to check my weight before breakfast – 75kgs. I had just started my breakfast – about 8.45am – when Sister Peter arrived to give me Holy Communion – which was nice. I am feeling a bit of discomfort in the upper arm / shoulder area of my PICC arm and mentioned it to nurse Jo. Am I getting some form of allergic reaction? Blood pressure check at 9.40am gave me 161/65, with my temperature at 36.1c. I then take a walk down to the original part of the hospital to photograph the fascinating plaques and boards on this a quiet Sunday morning. This is followed by my morning Ganciclovir, with no flushing-type problem unlike last night. I then have a late shower and hey presto it is lunchtime already. How time flies when you are enjoying yourself !!! Pleased to say that I am feeling quite a bit better today and feel that the improvement is more marked than other day-to-day comparisons. I am putting that down to the ventalin nebulizer clearing my airways and breaking up all the nasty mucus in my lungs , making it much easier to shift. I am glad I am in here with the CMV because, having finished with the anti-biotics there would have been pressure to get me home, where I would not be resting as much as I am doing here, would be tempted to go out with likely temperature changes affecting my lungs and where I would not have the regular monitoring, chest examinations, etc., prompting more anti-biotics and the nebulizer. In fact my cold would just drag on and on for weeks.

Vicky Tindall comes to see me at 3.20pm. She finds I am still rattling down the bottom of my lungs. We discuss the PICC line and the amount of tenderness in my arm and around the point of entry, where in fact there is reddening of the skin, suggesting a possibility that some infection may be starting or have started. She prescribes me another intra-venous anti-biotic
(Teicoplanin) to deal with this and requests the nurses take a dry swab of the area to see if there are any gremlins on the surface of the skin. Tina visits after having had lunch with the Worthing Mockfords and having had red wine accidentally poured all over her by Ella - including in her ear! We notice that my line forearm is quite swollen and puffy. I point this out to nurse Jo, but a later examination reveals that it is the bandaging up of my arm to protect the end of the PICC, which I did too tightly – Doh !!

I get yet another cannula fitted – this time to the back of my right hand – because they cannot get my Teicoplanin into me via the PICC line. Nurse Julie puts some Hepsal anti-coagulant into the PICC line and lets it stay there doing its stuff for well over an hour. I works and I then get my Ganciclovir via the PICC line. My blood pressure this evening is 141/58 – good! However my temperature is 37.5c the highest I have had since first coming in here two weeks ago. I celebrate a weird day with a Guinness(!) and am in bed at midnight.

Saturday 24th March 2007

Slept fitfully as usual buoyed along by my I-pod, but no coughing during the night. Awake early again but lay-in between 6 and 7until the “Today” programme kicked in. My line arm feels a little easier this morning – or am just getting used to it? Not sure. 7.15am and Euni is in with my medication and the ventalin nebulizer. I am shaved and showered before my 8am breakfast and am ringing Tina to see if she is in better spirits this morning. Pleased to hear that she is, with a determination to go out for a brisk walk, before setting to with housework and shopping. Matthew has asked her to lunch tomorrow, which is great. At 8.20am this morning I am 77kgs, my BP is 148/65 and temperature 36c. I take a walk down to the hospital shop to buy my paper, which is full of background to the Bob Woolmer murder; match fixing mafiosi in India and Pakistan, not to forget the South African Hansie Cronje connection (he was killed in plane crash – don’t forget!). There are also comprehensive reports of the London 21st July 2005 abortive bombing trial and allegations of direct connections between the leader of that group, Al-Quaida and two of the suicide bombers of the 7th July. This has come about because one of the group has broken ranks on the group’s concocted defence storyline. The other main story is about the capture of 15 sailors and marines by Iranian Revolutionary Guards in the Shatt-al-Arab Waterway between Iraq and Iran, for supposedly trespassing into Iranian waters whilst intercepting a dow apparently smuggling vehicles into Iraq. Sounds like a set-up job to me in order to deliberately instigate an international incident – which it certainly has; agent provocateur or what!

Anyway enough of interesting current affairs. Daphne rang to check on my state of health this morning. She also reminded me that they would be over to Paul and Begona’s in Den Haag from Thursday through to Tuesday. 10.15am and I am on my morning Ganciclovir with Jo i/c.
Spent the morning reading the paper from cover to cover – as above! Paul Hill called by at 12.10pm to check me over. He found a small lymph gland in my right armpit, but of no great consequence. My chest is still a bit congested in the bottom left area, but I am on all the right stuff and he is overall happy about my situation albeit it will drag on for a while yet. My after lunch observations at 2.20pm show BP as 150/77 and temperature 36.8c. Tina then rang to tell me she was in Lewes with Sue Pitt, having been shopping and having some lunch there too – what a good friend Sue is! She will have to go home first and then down to see me and arrives freezing cold mid afternoon but is warmed up by the time she leaves at 5.30pm! My 9pm observations show BP as 143/69 and temperature 36.7, so things seem to be stabilising after a couple of days of higher BP. I have a theory on that which is that the higher BP coincided with the trouble we were having with the mid line. Whether I was getting worked up about it I don’t think. I was certainly getting annoyed. So that’s my theory anyway. Meanwhile we were having difficulty getting movement in the PICC line this time and Hepsal was used to help clear what might have been a small blood clotting at the end of the line. It worked and I had my Ganciclovir through the PICC. I have been trying to drink more water, like two litres per day. I am finding this rather difficult because I am not enjoying the taste of water much. Perhaps I should try sampling some of the drinks they have in the shop, like lucozade and similar.

Friday 23rd March 2007

Another fitful night’s sleep with I-pod in ears and awake at 6am and ringing Tina at 7am. Showered at 7.30am As I am now neutropenic, I have to pass on my cereal mix, but otherwise my breakfast is no different, except that I shall have two pieces of brown toast from now on and I do have Tina’s homemade marmalade to go with it, Ymmmmm. My line arm was causing me some discomfort during the night as I could not find a good position. It feels as if my tendons on the inside of my arm are unhappy being stretched and my bicep also feels tender. I mention this to Guido; he wonders if I have a slight allergy to the material of the PICC line – I hope not that would be too awful to contemplate – but we will keep an eye on things and see how or if they develop. I am happy with that, but unhappy with the level of discomfort, albeit there are no problems whatsoever with its operation as intended for blood sampling and infusions.

I go for walk down to the hospital shop to give my legs some much needed exercise, as I am a bit wobbly on them. I take a look up on the first floor of what is the original hospital building, finding some fascinating and historical signs and plaques. I resolve that I must photograph them and will ask Tina to bring my camera bag down tomorrow. Sunday would be a good, quiet morning to take some photos. There is a grand board making reference to King William1V and Queen Adelaide “condescending to visit this hospital on the 4th of November 1833 and, after minutely inspecting every department, were graciously pleased to express their entire approbation of the manner in which it was conducted.” I ask you – how quaint. There is also a commemorative plaque on which is recorded a donation from a Mrs Ralli in 1904 of over £26,000 in memory of her late husband. The amazing thing about this is that his name is carved in full, whereas she is plain “Mrs Ralli”, with no first name – an unfortunate sign of the times no doubt. On arrival back on the ward, at 9.20am Guido has been looking for me to do my morning observations, but having walked up stairs to see these inscriptions etc. and then back up the stairs to Howard 2, my blood pressure (BP) is high at 171/66. In fact my legs were very wobbly and my hips ached from just walking up the staircases. My temperature is ok at 36.3c, my weight 77.5kgs.

The big news today is that the Jamaican Police believe that Bob Woolmer was strangled to death in his hotel room the night after Pakistan were hustled out of the World Cup by Ireland on Saturday – or did they throw the match? During a phone chat with Stephen Pitt, mention was made of beer, including Guinness, just as Guido came in “Guido, any reason why I couldn’t have a daily Guinness, strictly for medicinal purposes?” “I don’t see why not. It will probably do you good, won’t it.” So the green light for some daily pleasure, especially now I have my taste buds back. 11.45am and Tim Corbett visits with Vicki Tindall, Sarah Hartley and Sarah Worcester, introducing herself as the Haemotology Nurse Specialist. I am both neutropenic and lymphopenic. Tim Corbett checks me over and finds that I am wheezing considerably and my chest is rattling down below. He decides to prescribe me ventalin nebulizer four times daily and an anti-biotic called Clarithromycin 550mg twice daily, which both start at 1.15pm My 2.30pm observations show my BP as 155/70 temperature 37.2c

I spend the afternoon relaxing and reading until Tina arrives at 4.50pm. My 5pm observations were BP 146/67 temperature 36.5c. My morning blood results are:-
Wbc: 0.9; Hbn: 8.9; PLT: 120; Neut: 0.9; CRP: 17. So a little improvement on yesterday’s data. At 7.45pm I get a quick visit from Fr. Foley with a blessing. I then have my first Guinness. My fourth set of observations at 8.20pm are BP 152/64 and temperature 37.3c. I am then blogging until quite late, whilst I get my Ganciclovir about 9.45pm. I am in bed at 1am.

Thursday 22nd March 2007

Awake at 1.30am with earache and I have paracetomol to deal with it. I had a longer sleep, waking at 6.30am with a bit of a head and ask for more paracetomol. I make my morning call to Tina and wish Anna bon voyage to Mull via Peter at Streetley tonight. I am shaved and showered by 8am. My Ganciclovir is started off at 9.10am and I have a visit from Paul Hill at 11.10am. He says things are going well overall for me, but they had lost last week’s CMV blood sample intended for Kings, which means that today’s blood sample is the first CMV check that Kings will be able to report back on. Whether this will delay my escape from here I don’t know. Easter looks a forlorn hope, so I make it clear that the weekend after Easter is an absolute must to not be here as we have our Southwold weekend. We will probably be ok for that but I may still be immune compromised. Paul reckons I will go straight on to Campath immediately upon my discharge, whenever that might be, with regular weekly CMV and blood checks at PRH to ensure I am not neutropenic. He is not too bothered about my blood pressure as it is only over two days. “Is it a known side effect of Ganciclovir?” he asks of Vicky Tindall. No reply. I still have plenty of Oedema in my legs and ankles.

I am visited by Erik Shopland between 11.30 and 1.30pm. and we have good chats. My lunch is a Covent Garden red bean and lentil soup (delicious). I am typing my log from 3pm to 4.40pm, when Tina arrives. My BP check shows 151/65 and temperature 36.6c and my 9.20pm check is 149/69. My blood results for today are:-
Wbc: 0.8; Hbn: 9.2; PLT: 107; Neut: 0.8; CRP 20. I am in bed at 12.30am.

Wednesday 21st March 2007

At 3.30am I am awake with a headache and am given paracetomol. I am then awake at 6am having had a head sweaty night with my I-pod on all night again. It is Budget Day and Gordon Brown’s 11th Budget. Following yesterday’s line changes, my right arm is fine. My left arm is better for the change from derma film plaster – to which I now know I am allergic – to a Tegaderm breathable plaster. But I have a sore area on the edge of the crook of my left arm. I am showered at 7am, breakfasted at 8am and I trim my beard at 8.45am. At 9am I am typing on the laptop and am receiving Ganciclovir at 9.50pm. I am seen by (Dr) Sarah Hartley about two days of higher blood pressure, then I have a visit from Chris Pascoe up to lunch time. Tina has been to see Ashley Adsett the Oncology Counsellor for a chat. My BP at 2pm is 142/66. I spend the rest of the afternoon to 5.30pm resting on the bed until Tina and Anna arrive with Eva. Anna is off in the morning to Mull, so we say fond farewells.

At 7pm Jackson is here to check my BP. He tells me to relax my arm, but I did not realise it was tense. My BP is 157/67 my temperature 36.4c and I check my weight at 78kgs. It then occurs to me that my higher BP could be attributed to annoyance or anxiety about the ill fitting Mid Line in my right arm, now removed. Well it ‘s a thought anyway.

Tuesday 20th March 2007

I am awake and reading at 5.45am. No sweats last night, but on/off sleeping with my I-pod going. No coughing first thing. I call Tina at 7am and am showered by 8.15am followed by breakfast. I am delighted to find out that my Itroconozole liquid has been replaced by capsules. I am also back on the anti-biotic Ciprofloxacin, rather than intra-venous Tazocin. At 10.15am ahead of my Ganciclovir, we attempt to draw and flush my Mid Line, but it is no go and a call is put in for the I/V team to come and see me. Matthew and Charrise visit as Charrise had an appointment with her hearing consultant. Urokinase is tried again, but it is very painful and I have to have some paracetomol to ease the discomfort. Tim Corbett sees me at 12.30pm and instructs that the Mid Line is removed and that a PICC Line be inserted in my left arm. I am also rushed down to scanning for a CT scan with a cannula in the back of my right hand

My lunch of Covent Garden soup with croutons is delicious. I then have my Ganciclovir later than usual – 2pm – into the back of my right hand and at 2.45pm Debbie from the I/Vteam comes to fit a PICC Line. There is the usual oodles of blood, but at least it is in and it was relatively painless. It took her just 25 minutes. At 4pm I am down in x-ray finding out where the lline has gone and was amazed to see it going horizontally across my upper chest and stop on the right side above my heart. It is just where the vein goes. Tina, Anna, Nick and Eva visit at 4.30pm with me bouncing Eva happily on my feet on the bed. After dinner I rest on the bed for an hour or so. My blood results for today:-
Wbc: 1.1; Hbn: 9.6; PLT: 112; Neut: 1.1; CRP: 26. My weight is 77.5kgs

Later I get a call from Anna with great news. They have settled on a price of 138,000E for the house they want in La Liquiere, in the Languedoc. I have both arms rather sore, the right one I clean up and apply E45. I persuade Suzanne to change what I now know to be derma film and to use smaller plasters which allow my skin to breath. It is obvious to me that I have some sort of allergic reaction to derma film. I am later given a red wristband to show this. I get Ganciclovir via my PICC Line, no problems. I am reading until 1.30am when I hit the hay.

Monday 19th March 2007

Another I-pod night’s sleep but intermittently. Wide awake at 6am with our transistor radio instead of Roni’s Christmas present as the batteries have gone down again. Not too much coughing during the night either and no night sweats. The cannula on my wrist was rather sensitive during the night. I decide as my aversion to water is at an end, I should drink more and make an effort for 2 litres per day. I manage that easily today but do not find it easy to keep up with. For my breakfast this morning I have a mug of tea. When did I last have an ordinary English tea? I am resting at 9.10am. My weight today is 75kgs and my temperature this morning is 36c. I have a hot chocolate at 11.10am Not sure if it was quite right. Visit from brother Peter just after 12midday. He and Suzanne were en route home from Sally’s in Hampshire.

Tim Corbett checked me out at 1.30pm. My cough/cold should clear up relatively soon, but the CMV will take longer. But I should be ok for the weekend after Easter for our weekend in Southwold, although I will still probably be immune compromised. The scheduled bone marrow sample and CT scan scheduled for Kings on Monday can be done here. Steve Devereux’s consultation will not be able to go ahead as I will still be here. I do not need to continue on Tazocin and will revert to Ciprofloxacin tablets. Rested for an hour this afternoon and at 4.30pm Guido had a go at breaking up the congealing film of blood at the end of my Mid Line, using a Urokinase solution. Initially painful, it got easier with further amounts of Urokinase in a drip. Tina and Anna visited between 4.30pm and 5.30pm. Guido finished with me at 6.40pm cleaned and wrapped the line and we will use it at 10am next morning with Ganciclovir. Tonight’s Ganciclovir will be delivered via the cannula, which will be removed after use. Todays blood results are:-
Wbc: 1.5; Hbn: 9.9; PLT:102; CRP 29. My temperature is 36.1c

I go to the Day Room to set myself up to watch the FA Cup replay, between Spurs and Chelsea. Matthew rings me at half-time and tells me the good news from the Golf Holiday Company. He will get a 13% pay rise, plus a share in the profits of the company for the current financial year, which Matthew knows has been pretty successful. This is really good news!! And the culmination of much thought on Matthew’s part as to how to really tackle Steve about it, without putting him in an embarrassing position, vis a vis Longmere. Matthew wants to try to do a course in Project Management – the Prince model – so I will ask Chris Pascoe for information on the course he did in 2005. I hope Matthew does do something like this course as it would certainly stand him in good stead for the future. There will, in all probability, be life after the Golf Holiday Company! Bed at 12.45am.

Sunday 18th March 2007

I am wide awake at 4.20am with a sweaty head, so I am reading yesterday’s newspaper. I had been concerned that one of the reactions to the Methylprednisolone would be chapped hands – but not so far. I am coughing a bit between 6am and 7am. I have blood samples taken at 6.45am by Ruta whilst being assessed by Phebbey. Didn’t she do well !! I am washed and breakfasted by 8.30am. My morning temperature check shows 36.6c. I have my morning Ganciclovir via the cannula, meanwhile I am warming up my shoulder and upper arm all morning for Guido to test and flush my mid-line so that we can try it on Tazocin. My blood results today are:- Wbc: 1.1; Hbn: 7.0; PLT: 76; Neut: 1.0; CRP: 40. I am seen briefly by Dr Duncan at midday.

Before lunch, Guido does some more work attempting to flush, etc. my line without success. He concludes from his past experience that it is probable that a film of blood has congealed around the end of the line, forming a fairly long sheath back down the outside of the line, but obviously inside the vein. When flushing, the discomfort starts firstly at the top end of the line probably by the sheath of blood expanding out and pressing on the inner wall of the vein. As he pushes more flush in the point of discomfort travels down the arm (and line) suggesting the sheath of blood expanding likewise against the inner wall of the vein going backwards. Then flush liquid appears coming out of the line hole at my elbow to prove the point. All this would explain the inability to draw back blood or get a flush into the line. He cleans up the blood and flush that is running everywhere and we await advice and the decision of a doctor about the use of a suitable anti-coagulant to break down the film of blood. I get my Tazocin drip at 12.45pm despite all this.

Because my haemoglobin level was so low yesterday – let alone today! – it had been decided to give me three units of blood today. This starts at 1.15pm, with me resting peacefully on my bed while the blood trickles in! My temperature at the start is 36.2c. The rate is two hours per unit. I have a break for my Tazocin to be given to me, while Anna visits with Eva and then I resume with the third unit. However, I am now getting a lot of discomfort to my upper arm which is not resolved with a slower flow rate and in fact gets even more painful. So we go for another vein on the top of my right wrist, which seems to be ok. We have one and a half hours left for this unit, timed to finish about 9pm.

In the meantime Guido tries flushing my mid-line once again, but it is no more successful than before - just seeping back down the line to the entry point. At 7.20pm Father Foley comes with Holy Communion, which is much appreciated by me. I then go straight on to the Ganciclovir combined with a saline drip for ease of delivery. This will run for another hour and a half, by which time I have been infused and transfused more or less continuously for 10 hours! The position of my cannula is quite awkward and sensitive as it is sitting on my wrist bone. I have it bandaged up to keep it tidy overnight. It has been a long and somewhat tiring day but I am awake reading etc., until 1.20am!

Saturday 17th March 2007

I am awake about 4.20am with my cough now on my chest and feeling really congested. I cough and splutter for two hours. Am I finding it easier to drink water? Yes I think so. I get my first lot of Tazocin at 7.20am. It is Ella’s 6th birthday! And I call her at 8am to wish her a happy day. She had her ears pierced yesterday and has sparkly ear-rings and pink sunglasses! Wonderful! My temperature at 10am is 36.9c. An attempt is made by nurse Suzanne take blood samples from the line. There is no suction, so the bloods have to be taken in the usual way. A further attempt is made to deliver Ganciclovir via the line, with a heat press to ease it on its way. It is so uncomfortable I cannot take this any more and we stop and go to the cannula. Meanwhile I get a saline nebulizer session to help free up the catarrh on my chest. Tina and Linda visit this morning with some purchases for me – pyjamas and a pair of track suit bottoms to keep me going these next rolling two weeks. While they are with me the weekend consultant colleague of Tim Corbett – Dr Duncan – sees me. We discuss the chesty cough and the mid-line. He directs that we hold on the line and use the cannula on my left arm. I get Tazocin at 1pm – no problem. My weight today is 74kgs. My blood results are:-
Wbc: 1.1; Hbn: 7.6; PLT: 69; Neut: 1.0.

It is the last day of Six Nations Rugby and I have free TV courtesy of the previous occupant of this room who left a Patientline card in the TV with, as it turns out, over 12 hours viewing left.
It is all very entertaining with France emerging as the Champions with a last minute try against Scotland to beat Ireland on points difference. Meanwhile Wales beat England convincingly at Cardiff to put into perspective last week’s beating of France by the England “youth” team. Tina, Linda and Anna arrive at 7pm from Ella’s party. We are expecting to take delivery of our new Citroen C4 on Monday – exciting! I spoke to Matthew later in the evening to update him on the events of the day. Ella had asked why I was not at her party and he told her that I was in hospital and not well. He seemed to get quite upset about it as we talked. My temperature at 10.35pm is 35.5c. I get my Ganciclovir and then the Tazocin via the cannula, while Ruta cleaned up the old blood around the Mid-Line entry point in the crook of my elbow. then slept for an hour on the bed and woke with a headache, so had some paracetomol. My cough seems to be a little better – hmmm! We shall see.

It is now a week since the end of my second week of Methylprednisolone. Looking back on the experience of my first five-day session, there are a number of differences – mostly to the good. Firstly I did not “hit the wall” at the end of the session as I did when leaving Kings - and I was taking Campath at the same time. Having said that, instead I was overtaken by the bad cold that brought me into here on the following Monday. Side effects seemed to come on the scene a bit earlier and not so vigorously. The dry mouth problem has hardly featured whereas it had been a real difficulty before, lasting quite a long time. The loss of taste for water came up again and surprisingly it is only two days less this time that I felt able to start drinking water in litre-type quantities. This was ten days after finishing the Methylprednisolone. My sleep patterns have been turned upside down both times and more or less for the same length of time. I am typing this retrospectively, but the first reasonable night’s sleep this time was the night of 26th March, two weeks and three days after the end of the Methylpred session, compared with only ten days of late-going-to-bed evenings. But I suppose the biggest difference has been in my ability – or otherwise – to eat and enjoy food. In February it took a whole week to find anything I could eat in the way of a substantial meal and a further 2 weeks before things started to taste good – or reasonably good. Having the knowledge of that difficult experience, this time we didn’t have to try all sorts of different food in vain hopes of finding a tasty meal. But more surprising is that I have been eating the hospital meals more or less from the start of my stay here.

Friday 16th March 2007

Awake at 5am – the steroid effect is still with me – and went to the kitchen to get a drink or something, only to find that the food thief had been at it again! Despite my threatening notice. This time it was a very nice sandwich, which Paul Wehrle had brought for me – pastrami and rocket – that had disappeared without trace. I don’t believe it! At 7am I am hooked up for Tazocin, 9am I am showered and at 10am Guido and Sr. Geraldine fit me with a smaller version of the PICC line – a mid line – in my right arm. There is lots of blood and lots more bleeding afterwards. However, Guido takes blood samples from the line and then starts me with Ganciclovir and all is working well. Tim Corbett on his rounds at 12.30pm calls by to check me over. We discuss the CMV and its effect on my stay here. At least two weeks is still the order of the day. I mistakenly connect CMV with the cough and cold that brought me into hospital. As Tim Corbett leaves me so in walks Bill Swallow and of course we start to chat. After a time – I don’t know how long – I get a message from the nurses’ station that Tina is on the phone enquiring after me and tears me off a strip for not answering her text messages and not letting her know how the line fitting went. I had in fact switched off my phone when Tim Corbett visited and forgot to switch it back on when Bill arrived. I apologise but we are not reconciled. Bill leaves about 2pm-ish to be followed shortly by Anna, Nick and Eva, fresh from la belle France last night. I have a late lunch of ham, sliced carrots and celery from the food I brought in while we talk about their two weeks’ of travel and house searching, but especially the house they are interested in buying in La Liquiere in the Languedoc. They show me photos of it and it certainly looks very appealing, albeit needing a lot of work doing to it.

About 4.45pm I get my head down for a rest and sleep, bearing in mind all this visiting and talking gets me coughing and spluttering and tires me out. Tina arrives at 8pm with Linda hotfoot from her drive down from Barlestone. Tina and I clash over the business of no morning contact in front of Linda – who makes a discreet exit - and one of the nurses. I won’t go into details but we are both uptight, both in the wrong. Tina is still stressed by the whole business of my being in here, the fitting of the line and the CMV, despite her speaking with Viki Bevan at Kings yesterday. As usual it is easier for me – I am the patient; I get the attention; the carer has to get on with it. It is so unfair and she doesn’t deserve to be so stressed. We make up and have a big hug-in. I have a late dinner of two bowls of Covent Garden pea and ham soup, followed by a chicken hotpot. Both are delicious. My weight today is 74kgs.

At 10pm Phebbey, on the night shift, gives me the Tazocin by bolus in the line. It is painful.
This followed by an attempt to give me the Ganciclovir through the line. It is also most uncomfortable, including tenderness on the outside as well as on the inside, to the extent that Phebbey stopped doing it and inserted a cannula instead. The remainder of the Ganciclovir is delivered by the old method. At 12.20am I am set for bed.

Thursday 15th March 2007

Up for a 7am Tazocin bolus – a syringe injection - and an 8.15am blood test. Breakfasted and then a 9.30am Ganciclovir infusion, after which I showered and then found Paul Wehrle on a visit. While Paul was with me Paul Hill did his round, so he disappeared for a while, then at 12.30ish Tina came for her lunchtime visit. Tina had been trying to make contact with Viki Bevan at Kings and was to speak with her in the afternoon – with good result – putting things into a better perspective for her and us. After all the activity of the morning I was knackered, what with all the coughing my cold was giving me, took paracetomol and I rested - and slept - the afternoon from 2.30pm until 5pm, interrupted slightly by the fitting of a cannula to my left hand. At 5pm Keith Arscott came for a visit - during which Fr. Foley also came to give me Holy Communion - and of course Tina came down after work. My blood results for today are:
Wbc: 1.4; Hbn: 8.6; PLT: 56: Neut: 1.4; Crp: 57; My weight tonight is 75kgs.

I felt a lot better this evening after the afternoon sleep and maybe the anti-biotics are having a beneficial effect. Anna is due back to Hurstpierpoint later this evening off the Newhaven ferry, from her journeys round the Languedoc and Brittany house viewing. That will be good for Tina as it must have been awful alone in the house, especially with that ridiculous news about the CMV. My cannula position hurts. They will be fast running out of veins for me; I feel a bit like a pincushion already. Sat up reading and doing Sudoku until 1.15am, then slept with my I-pod on.

Wednesday 14th March 2007

I am up four times in the night to the toilet and also had the head sweats. Just like a cold would do to me. But some good news is that my enforced rest with feet up on the bed seems to have considerably dispersed a lot of the oedema in my feet and legs, such that I have dispensed with the ridiculous tights. My temperature at 6.40am is 36.5c. It is a bright blue-sky morning outside, just right for a walk out, which is exactly what Guido has arranged, albeit on his official day off. He takes me to have my Pentamidine Nebuliser at the nearby Sussex House to give my lungs another month’s anti-biotic protection. He also uses it as training of two of his staff. Shortly afterwards Tina arrived for her lunchtime visit, while my lunchtime Tazocin is given to me by bolus injection rather that saline drip. It takes 5 minutes, rather than half an hour. It is no problem and gives the nurses a little more patient time – just. My 2.50pm temperature was 37.4c

I then had afternoon visits from Jim Rodgers and Eric Ross and telephone calls from Jerome – who is just back from Hong Kong with a job - and Martin Stevens. This is followed by a visit from Fr. David Foley, the parish priest for Kemptown who gave me the anointing of the sick, explaining that it was no longer the anointing of the dying – for which I was grateful! The results of my bloods tests this morning were:
Wbc: 1.7; Hbn: 9.7; PLT: 57; Neut: 1.7 and - a new one for me – Crp: 69 (this the measure of infection fighting level in the blood – as I understand it).

Tina came down about 6.30pm and sat with me until we were interrupted by “Dr. Tindall” – whom I now know to be Vicki Tindall a friend of (Dr.) Emma at Kings. She simply blurted out that they had received a blood result from Kings for Cytomegalovirus (CMV) with a reading of 53k when it ought to be 10. This was to treated by the anti-biotic Ganciclovir (380mg twice daily) for at least the next two weeks. At the time this seemed to be really big impact news, but Dr Tindall did not have the intuition to recognise this or the skills to deal with it if she had so recognised it! We were left like a couple of goldfish having been fished out of the pond, gasping for air, explanation and a friendly hand. Tina was particularly distressed by the news.
We spent the next hour or more trying to comfort each other, not really knowing what it all meant, especially in the current context of my having been admitted with this cold and cough.

When Tina left, we had resolved that she would contact Viki Bevan at Kings for a chat to get a better perspective on it. Additionally I resolved to find out if there was an oncology counsellor at RSCH who we could contact as well. All this was put behind me though when I went to the kitchen fridge to get a drink of fruit juice about 11.30pm to find that someone had been at my food, despite its being clearly labelled. A Covent Garden Soup (Lentil and Ham), a small bottle of mango and passion fruit juice and a tub of yoghurt, honey and ginger had been stolen and the cartons dumped in the kitchen waste bin. I was trailing around my drip at the time, spitting rivets and making quite a bit of “annoyed” noise, disturbed Adela and Phil, the night shift and was obliged to tell them about it. I checked all the labelling on my remaining food items and then wrote a note on a sheet of paper which said “Keep your thiefing hands off my food – Roland room 2” and stuck it in the fridge on my food. Needless to say, after that I had a sweaty night with head sweats and a temperature of 37.2c

I have decided not to slavishly record every meal whilst I am here. My breakfast is always based on food Tina brings in for me, like mango & passion fruit juice, Greek yoghurt, honey, Eat Natural cereal, mango, pineapple or banana, plus white or brown toast and marmalade from the ward kitchen. I later add a mug of tea to that as I get my taste buds back. The hospital lunches and dinners I invariably find are both nourishing and quite tasty, with a good selection and day-by-day variety. There is always soup, meals like chicken lentil casserole, beef and mushroom pie, lamb stew, etc. plus steam puddings, pie and custard, ice cream, or fruit for afters. All good stuff!

Tuesday 13th March 2007

I am about to have another and very different hospital experience; this time in the RSCH’s specialist HIV ward, previously known as the Elton John Unit because of the famous man’s earlier sponsorship of it over time. However it was not until later in the week that I realised that the ward was so specialised. As far as I knew it was just a ward in the hospital with a bed for me. It was more than a bed in fact, as each of the six beds in the ward had their own room. Consequently, and unlike the Kings experience, it was some time before I saw any of the other patients and in some cases, never saw them. My window looks out on to Eastern Road, Brighton from the east wing of the front of the original Victorian hospital building. Unfortunately, because of the buildings opposite (including The Sussex Eye Hospital – with apologies to Art Deco) I don’t have a sea view, just a seagull view!

I am awake and thinking at 7am and call Tina and Matthew to tell them where I am. At 7.40am I have my first of four daily doses of Tazocin and am told my temperature has now dropped to 36.2c. Then at 8am the Patientline rip-off TV starts up of its own volition with GMTV – one hour’s free TV to whet the appetites of the vulnerable! I meet my first nurses, including the ward manager - Guido Tapia – who I am to find out later has taken me under his wing. This man is just great and so experienced, having run this ward for 17 years and having been a nurse for the past 35 years since he came here from Ecuador. I spend the day lying on my bed, reading, making notes and - very importantly – resting, as I am coughing and spluttering all the time and using up a lot of energy doing it. I call Matthew, Anna (in Brittany), Daphne and Peter to let them know what is happening. At 12.30pm, I am seen by Dr Tim Corbett, who tells me I will be here until the weekend, when I should have had enough Tazocin to sort out my infection. My blood counts from last night are:-
Wbc: 1.5; Hbn: 10.1; PLT: 67; Neut: 1.3. My weight today is 76.5kgs – down 2.5kgs from Friday and that’s not good given the amount of fluid still in my legs. My temperatures in the afternoon were both high 37.6c and 37.7c. One feature of my admission here is that I am the only person who knows what my day-to-day medication should be, so I am left alone to take it myself from my weekly box I brought from home. All the remaining tablets I brought with me are locked away in the cabinet in my room, but together with the bottle of Itroconozole – not the Nystatin, nor the Corsodyl – just the Itroconozole!! So I have to ask if I can get it out twice a day – what is this all about!!

In the evening I discuss my food intake with Guido as I want him to understand the difficulty I have with my appetite and weight loss. He is very good. Tina is here until quite late, after which I do Sudoku, listen to my I-pod and turn in for bed at 11.40pm. We have labelled my packs, etc of food and drink and put them in the ward kitchen fridge.

Breakfast: Mango & passion fruit juice, Greek yoghurt, honey, banana, ginger;
Lunch: (Don’t remember)
Dinner: Mango and passion fruit juice, sweet and sour chicken and rice (surprisingly tasty)
Supper: Covent Garden Lentil and Bacon Soup – mine (superb)

Three Weeks in Howard 2 Ward RSCH

Monday 12th March 2007

We resolved yesterday that I would make phone calls today to get advice and direction on this cold and cough. But first I had a shaky walk up the village to get some ham for lunch and some avocado pears. I stopped to speak to Cath in the High St. and tell her my latest, which obviously didn’t sound very good to her as she got quite upset. I think I must also have looked very shaky but told her I was going to make the contacts to sort things out. This business of frequency of the need to urinate kicked in at the Deli., after buying the ham. But the assistant would not let me use their toilet - “Health and Safety”. “Stuff you,” said I, “If I pee myself before I get home”. Anyway I rescued my plight at Gibsons, thanks to Linda. Really annoying and the last time I go into the deli, unless I go back later and tell them I am now relieved! Now I know how Victor Meldrew feels about life! On my return I list my symptoms –
Temp 36.8c, nose catarrh and phlegm, bit of a headache, feet and legs like an elephant’s with oedema, urinating every 15 minutes or so and feeling very weary. After several abortive attempts I get through to the chemo-therapy room, haematology outpatients and speak to Charge Nurse Teea and then (Dr) Austin. He advised me to take two paracetomol, co-trimoxazole (septrin) 960mgs, try to get a blood test done today (and Friday) and if I could manage it, to get to see Dr. Paul Hill for an examination.

Thanks to Mo McGhee, Paul Hill can see me at 3pm this afternoon in his ward at PRH. Tina gets home and drives me up to hospital for 3pm. “I have only 5 minutes,” he tells us frantically when he appears at 3.30pm. “What are your symptoms?” he demands with urgency, as he checks me over. I rattle them off as I had done with Austin in the morning. “You feel warm”, he observes as he feels my chest, “Let me check your temperature”. “It is 37.7c.” he remarks, scribbling frantically on one of the medical note sheets he always uses. “I am going to admit you, give me a little time to sort out something”. Bang goes his “I have only 5 minutes”. Tina joins me from the ward day room to await developments. What is going to happen? How will the day end? Where will I / we end up? About 30 minutes later Paul returns to tell us he has a bed for me in the Medical and Surgical Assessment Unit at Royal Sussex County Hospital (RSCH) Brighton and we should get there as soon as possible with a bag for 2 or 3 nights.

We are at the RSCH about 5.30pm, but first we have to go through the procedure of registering into the hospital through their A & E admissions and Triage Nurse system, which is “down” and therefore being paper driven this evening. Fortunately, Tina remembers the “To Whom It May Concern” letter, which Viki Bevan gave us in the event of such a need to get priority treatment. I am not thinking very straight at this time and it is good that she is. It is my passport to immediate attention. I contact Matthew while we are waiting in a bay in A & E to let him know what is happening. It is 6pm when I am admitted and indeed it is to a bed in the Medical and Surgical Assessment Unit (MASU), as already arranged by Paul Hill. I am there for a seeming eternity. I have blood samples taken at 7pm, which later show:
Wbc: 1.20; Hbn: 9.8; Plt: 83; Neut: 1.20.
I am seen by a very handsome Dr (Victor), who makes immaculate notes about my background and condition - but that is just one stage. We have brought a coolbag full of food bearing in mind the difficulties I have been having with my eating. I am able to have a dish of pork casserole micro-waved. I then think we agree that Tina should go home about 9pm as it looks as if it will be a long night before my assessment is completed and they are able to find me a bed on a ward – if they are actually able to do that! I am made aware that I am on 15-minute observations for blood pressure and temperature while I am being assessed. This is from an efficient Charge Nurse (Morgan). I recall going for an x-ray and possibly other checks – it is a little vague now. That takes me away for about an hour from the Unit and the 15-minute observations slip. I ask an auxiliary nurse to check on this, but pick on the wrong one. He is not in the right job, doesn’t want to be there and certainly doesn’t want to be fussed with doing my observations. Both his temperature checks are dubious – not right into the ear. “Normal” he tells me. I am unhappy with this for several reasons, one of which relates my doubting their accuracy. Fortunately I have another check by the night duty doctor (Dr) James at 12.55am, which reveals that my temperature is in fact 38.1c. Fever pitch!! What a good call by Paul Hill this afternoon to get me in. How would I have known that I had such a temperature if I was at home in bed? I am prescribed intra-venous anti-biotic called Tazocin after referral to Dr Tim Corbett. By 2.30am my temperature is down to 37.8c. At 3am I am transferred to Howard 2 ward, escorted by Morgan, with my bags of clothes and the cool bag of food.

With my rather sudden hospitalisation, typing my log is the last thing on my mind but eventually I get back to it. I am in fact only now resuming typing this log 9 days later, on 21st March! – so I have a lot of catching up to do while lying on my hospital bed.

Breakfast: Mango and passion fruit juice (not quite right); yoghurt, Eat Natural cereal, cut pineapple, honey; water.
Lunch: Ham salad with carrots and celery;
Dinner: Spanish Pork Casserole in hospital microwave in MASU (good)