Peter’s Hospital Diary

…but enjoyable ones! I think I mentioned in Saturday’s post that my parents were planning to visit, and they arrived on Sunday morning for 3 days, and left today. As always, it was lovely to see you, and thank you for coming down!

And here is a picture of “The Three Stooges”! – my other two visitors on Monday, Neil and Suzanne, both Leukaemia Care colleagues (fellow trainers) and who have recently posted comments on the blog. Both arrived bearing gifts, and no, not grapes! Neil (as a bloke) arrived with a pack of bacon and some sausages (delicious – I had some this morning!) and a loaf of harvest grain bread. Now that used to be my favourite, but since the radiotherapy, when my saliva dried up, I have been wary, and only recently started eating white bread. However, I had some as pork sandwiches on Monday evening – they were delicious! Thank you Neil! Suzanne’s present is equally useful, given Friday’s discovery that I can enjoy beer – the 2007 Good Pub Guide! I was pleased to see that most of the local pubs here are all featured!

We did have some work to do, but after that they stayed for a (late) lunch. Again new discoveries for me! At Christmas, I tend to enjoy the cold meats on boxing day as much as the meal on Christmas day, but this year the mucositis from the first lot of chemo was starting to kick in and I couldn’t really enjoy the meal. However on Monday we had cold meats and salad, which I enjoyed, but the real revelation was being able to enjoy pickles, especially some home pickled pears and some pickled onions. Equally welcome was the enjoyment of cheese and biscuits. But best of all was the convivial company – Neil, Suzanne, my parents and Felicity – a good day.

I’m not sure if I overdid things a bit on Monday, but yesterday I did feel quite tired. We went out for a pub lunch (Good Pub Guide featured!) which was good, but when we got back home, I just fell asleep. As John said in a comment “listen to what your body is telling you”. Sound advice. I must remember that although I am feeling several hundred percent better than three weeks ago, I still have a way to go!

Now, at the risk of becoming an Acai berry bore (who said “too late”?) I have revisited the subject one more time, in an attempt to find the source article. Now I have found the publication, a learned journal of “The American Chemical Society” called “The Journal of Agricultural and Food Chemistry” and although I have the publication date, I cannot find the article (which I couldn’t read anyway as it is a subscription journal) Now I’m sure it is a worthy journal, but I would have been a bit more impressed if it had been published in say “The American Journal of Haematolgy” which reaches a wide cross section of haematologists on both sides of the Atlantic.

However of interest was the University of Florida News letter, which I have linked to here. Naturally they make no claims about any anti-cancer properties in humans (apart from any other reasons, to avoid falling foul of the Federal Drug Agency) but they actually go further and point out that the study, funded by UF sources, was not intended to show whether compounds found in acai berries could prevent leukaemia in people.

“This was only a cell-culture model and we don’t want to give anyone false hope,” Talcott said. “We are encouraged by the findings, however. Compounds that show good activity against cancer cells in a model system are most likely to have beneficial effects in our bodies.”

The newsletter also pointed out that the berries are perishable and have only been available outside Brazil for about 5 years. And on the subject of freshness and quality control, Richard directed me to this link which voices similar concerns – so it isn’t just me!

So the facts are: The freshly picked berries contain the highest levels of anti-oxidants of any berry and that extracts from the pulp have been shown in one laboratory to kill a percentage of unspecified leukaemia cells. Again if you read the article, it points out that grape juice and guava juice also exhibits similar effects. So do I go and buy frozen Acai berry pulp at £12/kilo, and take up loads of freezer space (and probably displace that bottle of Plymouth Gin I am keeping nicely chilled against the day I can enjoy it again) or nip out to Sainsburys and buy a couple of pounds of red skinned grapes (or better still, a product made from them – which contains anti-oxidants and lots of flavinoids) and a couple of guava? Hmm – tricky!

One other thought – Florida’s main source of income, apart from Mickey Mouse and tourism, is the citrus fruit industry, which has taken a bit of a battering recently. Now if the acai palm could be grown in Florida, what a useful bit of marketing that research might be… cynical? moi?

So now to draw a line under the acai berry – worth watching – but treat claims with caution. I suppose at worst it can do no harm (or can it? Grapefruit juice reacts with the anti-rejection drug cyclosporin) but it isn’t cheap, and the quality isn’t guaranteed. I will pull the other post and this text and put it in an ‘about…’ page.

Anyway, it is getting chilly, time to put the heating on, and light the fire! Nothing like an open fire on a cold and frosty day!

Onwards and Upwards!

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And what a difference! It is 3 weeks yesterday since I was discharged from Southampton, and I was having a look at some of the photographs taken just after I came out. I think the one on the left sums up how I looked!

However, the one below on the right, taken this morning, just goes to show what the love of a good woman, and a plentiful supply of bacon sandwiches, can achieve! I must say that I was beginning to think that I was ‘baconed out’, so this morning I had porridge for breakfast, with lots of fruit, but then temptation got the better of me, and I did have a half round of bacon sarnie! (As Oscar Wilde said, “I can resist anything but tempation”)

Yesterday’s Sunday dinner was roast pork, with lots of crackling and the trimmings, and it really hit the spot. My vegetable intake is up too, the pork was accompanied with carrots, sprouts, potatoes, parsnips, broccoli, and sugar snaps, so the return to healthy eating continues!
Meanwhile a bounce on the bathroom scales shows that I have put on another couple of pounds! So onwards and upwards!

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First things first, it has been a while since I last posted a picture of Olivia, so here is another one! It does seem that in most of them she is asleep – but I can say that she is now a pound heavier than when she was born! (I am about 8 lbs heavier than when she was born – her percentage weight gain is much greater than mine!)

I have had a couple of good days. Mark (fellow blogmaster) rang me yesterday to ask if I felt up to going out for a bite to eat. Well I did, so we went to a local pub, where I am delighted to report that my taste buds made a welcome re-aquaintance with beer! It did taste a little more bitter than I expected, but it was very welcome! I then went on to have a bacon, brie and redcurrant baguette! Delicious, although by the end of the second half of the baguette, my saliva was drying out so I couldn’t manage the end crusts, but then the beer helped wash it all down. So an excellent lunch!

Our friend Marian came round in the afternoon and we sat and chatted in the conservatory – it was a lovely sunny afternoon, and it got really toasty. I have to say that as I sat there, I felt good. Yes, diving in Ascension might have been more active, and I do miss the frequent trips to Washington, but given that I am where I am, and things are as they are, life felt pretty good! I did think at the time “It doesn’t get much better than this”. However there is no room for complacency – so get to work my little lymphocytes!

This morning a work colleague, Adrian, popped over for a visit, in his boy’s toy – a Caterham 7! Next time Adrian, I’d like a blast! Adrian has been very supportive to me in the last few years, and this is a chance to publicly say ‘thank you’. Again we sat in the conservatory, which given the clear skies, got really warm again, and reflected on the state of the world! A good morning! While we were chatting, Katie came back from Bournemouth to pick up some stuff and do a few things here – it was good to see her! And tomorrow my parents should be coming down for a visit!

On a more serious note, I have added a new link to the websites list. This a site called Quackwatch and is a non-profit organisation that takes a critical look at some of the extravagant ‘miracle cures’ for cancer and other serious illnesses. When people are diagnosed with a serious condition, they will look for any miracle cure, and sadly there are plenty of charlatans willing to exploit this and take advantage of it. Quackwatch looks at some of these claims, and any supposed science behind them, to give an informed opinion. It is an interesting site, and worth a look.

I must say that looking back over the last 3 weeks (and it is 3 weeks since I went into hospital) it has been an emotional rollercoaster for all the family. I was looking at one of the photographs of me with Olivia just after I was discharged, and I looked positively skeletal. However I think I look a bit better now (although I still have the problem of trousers falling down – sorry – TMI) We have been through the emotional mill – and of course the waiting game for the GvHd will be a bit tedious, but hey – no-one ever claimed things would be easy. Yet again, thank you all for your support – it really has helped us get through the last couple of weeks.

End of serious bit – in time honoured fashion…. Onwards and Upwards!

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But what a difference from last time – no long faces, and new determination in the air! Perhaps that is my perception as my strength returns, but it has been a good day!

We arrived late morning, at the day unit, only to learn that we needed to go to the clinic first, for bloods and to see Linny. My blood counts have improved considerably in the last 10 days – platelets almost back in range, neutrophils back in range, and other indications are good. I am still anaemic – haemoglobin around 9.5 but I hope that will improve too.

We had a chat with Linny, and I signed the consent form, then it was off for a chest X-ray and then to the day unit for the donor lymphocyte infusion (DLI). The chest X-ray result was good and confirmed Linny’s listening – that there is now much less fluid on my lungs than before. (And certainly my breathing at night is much less ‘rattley’ than 10 days ago.)

The DLI was uneventful. The procedure starts with a dose of anti-histamine (Piriton – given as an injection.) This always makes me sleepy – and today was no exception – I just fell asleep while the cells dripped in! After that, I needed to wait a while to ensure that there were no adverse reactions, and then we left to come home. So now it is up to the lymphocytes – get to work my beauties! It will a take a while before any effects are noticed though – as much as 6 weeks, so we are in a waiting game – I’m afraid I’m going to have to ask you to keep things crossed again!

I also saw Mark today. You may remember him as a fellow patient who had his transplant at the same time as me. He has developed lumps on his neck, and was being admitted to Blundell Ward (ENT – where I was last September) for a biopsy. Mark says that he looks at the blog nearly every day – so Mark, I send you my best wishes, as I’m sure everyone else will too – stick with it and think positive, we are all with you.

And now for a few comments about my nutrition (oh no – not more, I hear you say!)

There has been a bit of banter about my diet and nutrition, but looking back over the last couple of weeks, there has been a sort of logic to my eating! When I came out of hospital, I was certainly undernourished, and the muscle wastage was quite scary. My stomach had shrunk, and the anti-biotics had interfered with my digestive tract anyway, destroying some of the useful bacteria that live there. Although I weighed 10 stone (the same as today) much of that was water where I had been re-hydrated. So I suppose concentrating on the protein (lots of bacon and eggs) made sense to get the amino acids to build up my own protein. I certainly couldn’t eat complex carbohydrates while my saliva production was low (saliva contains enzymes that start the breakdown process) but the simple carbohydrates like sugar gave me much needed energy.

Now as my digestive system is recovering (and my sense of smell is returning) I am managing more complex carbohydrates (bread, potato) and my taste for vegetables is returning. Certainly putting on 7 lbs of body mass is good, and my improved condition (wet nose?) was remarked upon today! I was being fitted up for an appointment with the dietician, but when I explained what I have been eating, I think that may not happen. Certainly the double scrambled egg and two rashers of bacon on a piece of toast made a great start to today!

And this brings me to another nutritional subject, Acai berries. Liz alerted to me to these berries (there is a link on the left – if you are using Internet Explorer, you will have to scroll down, if you have upgraded to Firefox or Opera, it will be available on the right) a few months ago, and I have been doing a bit of research into their properties.

Acai berries are native to Brazil, and have dark purple skins. Like other dark skinned berries, these have strong anti-oxidant properties, and acai berries are reputed to contain the most anti-oxidant of any berry. Anti-oxidants are good in that they are believed to mop up free oxygen radicals in the body, which is believed to contribute towards ageing.

However, the most interesting fact is that in laboratory studies at the University of Florida, the extract has been shown to have a an effect against cancer cells. Now it is a long way from a demonstration in a laboratory to a viable drug, and as far as I can tell, the results have not been repeated at any other laboratory. That isn’t to say that the effect isn’t genuine – lots of plant products exhibit pharmacological effects – Vincristine, part of the R-CHOP protocol, is synthesised from the Madagascan Periwinkle plant. Salycilic acid, found in some species of willow, is a powerful anti-inflammatory drug, which we know as aspirin, and if you ate enough apricot stone kernels, you would make yourself seriously ill with cyanide poisoning – they are pharmacologically active!

So there may be a potential benefit from eating acai berries. However, that brings two difficulties. If the berries are pharmacologically active, is it possible that they could interfere with the conventional treatments, either enhancing or reducing the effect? Certainly some other natural remedies, such as Echinacea and St John’s wort are not recommended with conventional treatment because studies have shown that there is an interference. However these studies don’t exist for acai berries.

The second concern is quality control. There are three main suppliers in the UK, each producing a range of acai berry products. One produces a juice, but there is a comment that the juice loses its anti-oxidant properties very quickly. Another produces a freeze dried extract (at £15/50 grams, or £135/lb!) for which they make generous claims, while yet another product is frozen pulp (at about £63 for 5Kg). The problem is that how do I know I am getting what I am ordering? What is the quality control? All I have are the claims of the companies, that are – as far as I can tell – unregulated. I could be buying cranberry pulp for all I know!

So for the moment I will watch the acai berry with interest, and there might come a time when I will try it – but that time is not now. But thank you Liz for bringing it to my attention!

So a long post – but I will end on the usual sign out – “Onwards and Upwards”

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And there is some good news, but to keep you all in suspense, I just want to say a few things about the blog!

The blog software runs on my own computer under the Linux operating system. Now because I use Linux, this doesn’t support Internet Explorer so I usually use Opera or Mozilla Firefox as the test browser. The blog software is pretty standard, although I do tweak the views and themes to get it as I want it, and I run a couple of blogs (including Elspeth’s) which all use identical code. So I was surprised to get a report saying that the pages on this blog don’t always display correctly, and sure enough, when I checked it on another computer with IE6, it doesn’t – and I’m at a loss to know why!

I’m not a fan of IE – it doesn’t conform to open standards, and has strange quirks – IE7 might be better – but I haven’t tried it. However both Opera and Firefox will run under Windows, and I personally think they are better browsers than IE6. They will work straight off the download, but both can be optionally customised, and Opera can be made to look just like IE6! Both are ‘tabbed’ browsers which means you can have multiple pages open at any one time.

I urge you to try one of them – you can get Opera here or try Firefox here. You have nothing to lose, and they will display “Peter’s Hospital Diary” to best advantage!

Right – on with the news! I had a call from Robert Carr on Monday. Robert is a leukaemia specialist, but has looked after me since I was first diagnosed in 1999, passing me over to specialist teams for specific treatment (such as the transplants) when required. I haven’t seen him much for the last 12 months, while I have been under the care of Dr Kazmi and Linny, but I know he takes an interest, and has been a tower of strength and support over the years.

Anyway, he happened to be in the PET centre on Monday, and mentioned my case to the team there. The upshot was that there looked to be less disease active in this scan than in the previous one (before Christmas), and that my case was going to be discussed at the multi-disciplinary meeting yesterday afternoon, with the possibility of a ‘phone call last night.

Well the call didn’t arrive, but the lovely Linny has just called this morning, confirming the good news, and we have discussed a way ahead. While more chemo might be a good idea under normal circumstances, the reaction I have have had tends to preclude it, especially as the ingredient that it probably the most useful therapeutically (the Doxorubicin) is the one causing the problems. However I am going up to the clinic tomorrow to receive a dose of donor lymphocytes to attempt to trigger the Graft Vs Host Disease, and the wanted Graft Vs Lymphoma effect. As Linny said, “I continue to surprise them!”

Now this is a long shot – no guarantees – the dynamics of the disease has changed, etc etc, but it is an active process, and as I said – I’m not giving in – so this is welcome news indeed! As for myself, I feel so much stronger than I did 10 days ago – and that in itself has strengthened my resolve and will. I have put on about 7 Lbs (still only 10 stone!) but I am now eating well. I’ve even managed a bit of housework! Last night I had lamb casserole, broccoli (vegetables, Liz!) and mashed potato – and some syrup sponge and custard! So my appetite is definitely better. Cheese on toast at lunch time was good too!

Finally, Hilary (friend from primary school!) asked what it is about the fetish for bacon and sausage sandwiches! Sorry Hilary, it’s a boy thing, and if you have to ask, I can’t explain!

So with this news, I think I am justified in a cautious “Onwards and Upwards” – but remember it is a long shot! But to put the icing on today’s cake, the sun is shining, and the birds are flocking round the bird feeder (including some goldfinches!) So yes – Onwards and Upwards!

Sorry no new photos of Olivia this time – maybe next time!

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Ok, I’ll cut straight to the chase as I know that the attraction to the blog is the thought of more pictures of Olivia! Upstaged by my (lovely) grandaughter! These show her with Mum’s Teddy Bear, Sebastian.
There is another one a bit further down the page!
As for me, yesterday (Sunday) was another good day.
My sister came to visit in the afternoon, with her husband and my Neice and Nephew, Charlotte, and William. We had a pleasant afternoon, sitting in the conservatory with the sun streaming in, toasting our feet on the underfloor heating!

Yesterday was also a bit of a food-fest too – breakfast was a couple of rashers of bacon on some bread (I’m not sure I can manage a full sandwich – my saliva supply is still a bit limited) and I also managed a sausage. Mid afternoon I felt a bit peckish (as you do!) and managed another sausage on some bread (in addition to a few ginger biscuits!)

Last night Tom and Vicki brought Olivia round, and we had a full Family Sunday Dinner, everyone here including Katie, who had come back from Bournemouth for the weekend.. Dinner was probably the biggest meal I have eaten since before Christmas. We started by toasting Olivia (with some bubbly!) and then went on to roast beef with all the trimmings, A lovely piece of corner topside from our local farm shop. I managed 2 helpings, some vegetables, and some horseradish, something I couldn’t have contemplated 4 days ago. (Ok I did have a third helping of beef – but it was cut thinly!) After that we had a syrup sponge. I thought I was a bit full after dinner, but two (small) helpings with lots of custard seemed to disappear quite easily! Sorry that this has turned into a food description, but it seems like a major milestone!

This morning (same breakfast) we had a visit from my local GP. I haven’t been registered with a GP before – my primary health care being the concern of work, but as the GP has access to support services that might become necessary, it seems to be a sensible precaution!

However, enough of me – here is the final photo (this session!) of Olivia!

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First of all, my apologies for the delay in posting – don’t worry, I am OK, we have had a busy couple of days! And thank you all for your posts. For those that haven’t posted comments before, your first comment goes into a moderation queue (which is why it doesn’t appear immediately) but once moderated, subsequent comments should appear straight away.

We went up to St Thomas’s on Friday for my PET scan – number 19 – which the staff think is a definite record! It was great to see Margaret, the unit manager, and Sally, who is one of the radiolgists on the unit, but I was also greeted like a long lost friend by the lovely technicians that administer the tracer, and the receptionist! I was delighted that Viki, the specialist transplant nurse, was able to get over from Guy’s to see me. Viki has been a tower of strength over the last 8 years – really from first diagnosis, and through the various procedures, and it was Viki who gave me the donor stem cells last year. Friday was (sadly for Guy’s) her last day at the hospital – she is moving on to pastures new at King’s College Hospital – a great gain for them, and I wish her all the very best in her new venture – and my heartfelt thanks for all that you have done for me.

The PET scan itself was uneventful – the usual 90 minute or so wait while the tracer is taken up, followed by the scan itself, taking about 30 minutes. The scan seemed quite quick – perhaps I fell asleep! I certainly felt very relaxed! We finally got home at just before 5pm – it seemed a long day!

Yesterday was quite busy too. My friend (Partner-in-Crime) and fellow Blogmaster, Mark, came round for a cup of tea, then we had a boys’ trip out to Currys and PC World. Nothing too exciting (a new vacuum cleaner, a Freeview box and a browse) but it was good to get out of the house for a while. My strength is certainly returning, as is my appetite (I am really enjoying bacon sandwhiches again – and this morning I had bacon and sausage sandwiches!) I need to put on a bit of padding – sitting on a wooden chair is quite painful!

However, enough of the talk about about me – I know you really want to see some more photographs of Olivia! Richard asked if I could put any video up – I am investigating that. One word of warning – one of the photographs shows me just after I had come out of hospital. Let me assure you that I now look a lot less fragile than I did when the photo was taken! (And my hair is starting to grow back!)

So here we are…

I hope you like them!

Tags: PET Scans

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I missed the anniversary of the transplant last week as I was in hospital, but it is probably worth remarking on, although this time last year I wouldn’t have expected to be where I am now!

Firstly, can I thank you all for your comments and expressions of support – I have said so before, but it really does make a difference to know that you are are all thinking of me, and I draw great strength from it!

As you might imagine, the last couple of days have been a time of great adjustment. Tears have been shed, and I’m sure there will be more, but we have reached a ‘stable’ stage for the moment!

It is ironic that I have been lecturing on bereavement counselling for Leukaemia Care, it takes on a slightly different perspecive when it becomes personal! Certainly knowing about the grieving process, and anticipatory grief gives insight to why my emotions are as they are, although that knowledge doesn’t enable one to short circuit the grieving process! I certainly feel angry at the potential loss of my remaining life, and the retirement that we might have enjoyed. Equally I recognise the arrogance in that statement – none of us has any “right” to an allotted lifespan, and I have had a good and interesting life. Perhaps the saddest thing is that Olivia may have no positive primary memories of me.

However, that is defeatist (or realist? :)) and there is much to do. Tomorrow I have a PET scan at St Thomas’s – number 19! – so we will see exactly what is happening, and I am still holding out for the donor lymphocytes!

On a positive note, I am eating well, and I think I might have put on a little weight. Certainly my face seems less gaunt, and I think my hair is starting to grow back! I certainly feel a lot stronger than I did at the start of the week, and with that physical strength comes back the mental determination not to give an inch without without a fight!

Finally, I promised you some more photos of Olivia. I have a selection taken during the last week, so I will sort some out and process them to a suitable size for the blog and post them over the weekend!

Is “Onwards and Upwards” still appropriate? I’m not sure, but it is certainly preferable to the alternative!

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Well, maybe not a new me, but certainly new experiences!

It has been an interesting 10 days or so, and this will be a long post, so settle down and I’ll tell you about it!

Mark was quite right when he said that I under-estimated how unwell I was. I suppose it came home to me on Sunday morning (14th) when I was thinking about getting up, and finding the prospect un-appealing, that I realised that in 24 hours I was supposed to be at Guy’s – and I just couldn’t do it. The fact that I had spent the previous two days in bed should also have alerted me to the fact that things weren’t well. There were some slightly surreal moments too – Mark said that he had visited on that Sunday, and that I looked unwell, I also had a visit from a friend, Peter – who is also our Vicar. He did arrive wearing his clerical clothes, and it was a bit of a shock to open my eyes to see this figure in black leaning over me! I did wonder where I was for a moment!

Anyway, having decided that Guy’s on Monday was out of the question, the only other option was to get me to Southampton General for some treatment, and the only realistic way was by ambulance. So an ambulance was called, but on arrival, the crew were distinctly hostile. It didn’t help that they had no knowledge of the effects of chemo, or how unwell I was. It did help that I had a letter of referral to Southampton, written by Guy’s, but we got the distinct impression that they thought we were time wasters. However that changed when they saw I was having difficulty breathing, and at that point they offered oxygen. Meanwhile I decided I needed to wash my hands. Funnily enough, I had difficulty reaching the tap, and the next thing I knew, I was on the floor of the bathroom having blacked out. I think that was the pivotal moment for the crew, and they eventually got me downstairs and into the ambulance for a trip to Southampton. The only disappointment was that we didn’t go with lights and siren!

I was admitted to A&E, and then eventually onto the ooncology ward, where they started immediate re-hydration and anti-biotics. My blood counts were a disaster – haemoglobin about 7.5, platelets 5, neutrophils about 0.1 – low enough to warrant being in isolation, and in fact after about 2 hours on the open ward, I was transferred to a side room, which was where I stayed for the rest of the week.

I was also given some pain relief for my sore mouth and I was given a cocaine mouthwash. I had had that before at Guy’s during one of my transplants, but this seemed stronger, and the relief was immediate – and just being pain free made a big difference. Once that was sorted, and I was moved into my side-room, the rest of the treatment continued – anti fungal drugs as I had a thrush infection in my mouth, loads of saline to get me re-hydrated (I must have had about 14 litres or more during the week) and lots of anti-biotics as my neutrophil count was so low. I also had a bag of platelets and three units of blood to get some semblance of blood normality back.

The week was not without its moments! I mentioned that I had the cocaine mouth wash, and that was the first of many, however I began to notice that after the mouthwash, I was becoming almost garrulous – I couldn’t stop talking and I had a real feeling of euphoria. It wasn’t until about the 5th time it happened that I realised I was on a cocaine high. The stronger solution and my damaged mucous membranes meant that I was absorbing a ‘recreational’ dose – and when I realised that, I found it quite frightening. I did have to apologise to some of the staff who I must have bored, but they found it quite amusing! I decided to stop taking it, but when I discussed it with Dr Katia, we halved the strength, and so it only had the desired effect of pain killing. Was there a little twinge of disappointment? Maybe, but the fact that the drug had such a mind altering effect really was scary. I can see how people become psychologically addicted. While discussing it with Dr Katia, I did say that I have NEVER used drugs recreationally – she smiled at me and said “Well, you have tried it now” It was an experience!

And now is the time to give a huge thank you to the medical staff on C6 ward. On the medical staff, there were Drs Katia (Registrar) and Dr Helen, who admitted me from A&E and started the treatment, and Dr Jane, who as the SHO had day to day care of me. They are all part of Professor Johnson’s team, and looked after me really well. I must also thank the nursing team, who yet again showed that it is the people that go to make a good team. I always feel a bit diffident at this stage, because there are many more nurses whose names I didn’t catch – but my thanks goes to them too. However the ones whose names I did catch include: Beatrice (who looked after me on arrival), Kevin (Charge nurse), Terry Clare, Rosie, Allison, Mel, Vicky, Sheryl, Susan and Reena – and many more. Thank you all – yet again it was a demonstration that Oncolgy nurses are a special breed. Susan was on nights during my stay and so did much to look after me at that time.

My stay lasted a lot longer than the Thursday. However I found hospital food to be difficult to eat, partly because it didn’t appeal to my suppressed appetite, and partly because although the mucous membranes started to heal, I still had a painful ulcer on my tongue that made swallowing difficult – even with the mouthwash.

However, by Saturday I was ready to leave, knowing that my nutrition would be better at home. Sadly my platelets were still low, and Dr Katia was reluctant to discharge me, however on Sunday, they had crept up a little, and although not a dramatic improvement (13 to 15) but with some misgivings, I was discharged, again with a small pharmacy stock! It was so good to be home, and to have real food cooked for me!

On Monday I had an appointment at Guy’s for a review, and we were driven up by a friend of ours – trains were banned! I had hoped that I might have some donor lymphocytes, but instead the news was not good. Basically Guy’s feel that there is little more worthwhile treatment that will make a difference, and that the future lies in palliative care. Put baldly, it means that my life expectancy is now measured in months rather than years. They are arranging for a scan to see exactly what is happening, and if the disease has been knocked back, there is the possibility of DLI, but it takes a while to act, and there is the risk that the disease will overtake it, but we shall see. There is also the possibilty of an experimental drug called Velcade, but again it is a slower acting drug, and the disease dynamics again come into play. So not good news, and “Onwards and Upwards” doesn’t seem really appropriate. All I can say is that I will try to fight this every inch of the way! (Tough old bird!) And I will keep the blog going for as long as I can.

However, I don’t want to end this post on a sad note, so I take great pride in introducing Olivia Ellen, who was born at 8 minutes to midnight on 15 January, weighing 7lb 3oz! She is a cutie! 🙂 The photo was taken when she was less than 24 hours old. And perhaps looking at that photograph, maybe there is room for a little “O&U”! I will post some more photos if you wish!

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Peter asked me to give everyone a quick update……

It was clear that Peter didn’t really appreciate how ill he was until yesterday afternoon (and as I visited him can vouch for the fact he looked very ill) when it was decided he needed some hospital care, consequently he got his first ride in an ambulance to Southampton General. There they have been rehydrating him and attempting to get his neutophil count back up to something approaching normal as well as treating his extremely sore mouth.

He called me this evening and sounded considerably better than yesterday (when I doubt he could even have held a phone) and told me about the cocaine mouthwash (very effective) and the other treatments he is getting. He will provide you the full gory details later in the week when he is discharged – hopefully Thursday.
All being well I will visit him in the next day or two and will take with me any comments posted so he doesn’t suffer too much from Blog withdrawal.

Mark

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