Peter's Hospital Diary

Although I did think that yesterday the title might be ‘Cold, cold cold’ as it was a very wet, dreary and chilly day. However this morning the sun is shining, the windows are open in the conservatory and apart from a stiff breeze, it is a lovely day.

We had Olivia staying with us last night – however I don’t have any new photos as she spent most of the time asleep, however she is now starting to smile and chuckle, so I will try and get a photo of that, and perhaps another movie clip! She was very good, sleeping for between 3 and 5 hours at a time. For those that like Oooohing and Ahhhing over new born babies, can I refer you to Elspeth’s blog!

The week has been good – work continues on the Wedding Fair Felicity is organising – I am developing new skills with drawing packages! We went out for a meal with Mark (fellow blogmaster) and his wife, Sue, on Thursday – excellent spag bol Sue! (Back onto food again!) Mark is the blogmaster for his French Farmhouse blog.

The bacon sandwich saga seems to have taken on a life of its own, judging by the comments on the last post! I have just been tinkering with the sub-title of the blog, perhaps I should change it to something like “A blog about bacon sandwiches, their variants (and my lymphoma)”! Alternatively I could set up another blog dedicated to recipes! (sandwiches and snacks etc) if it would be of interest!

I have a feeling that things might be happening on the GvHd front. My mouth and gums are getting sore, and the skin on my face and scalp is itchy, both symptoms that heralded GvHd last year. Last night I saw some blotches on my face, again another symptom, although they were less evident this morning. So we shall see. Next visit to Guy’s is on 12 April. Until then… Onwards and Upwards!

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There have been one or two comments about the length of time since I last posted! It’s nice to be missed! I hope you all remembered to advance your clocks to British Summer Time (or Alpha time) on Sunday – and don’t the light evenings feel good and lift the spirits?

Last week was quite quiet, although it started well – with a visit from Neil and Suzanne (Leukaemia Care) who popped in to discuss the training manual we are putting together. Suzanne took the photo which just happens to feature Olivia!

The week then became progressively busier! The bad weather that we were expecting in the last post duly materialised – we even had a sprinkling of snow on one morning, but it was not quite as windy as it might have been and some of the blossom stayed on the trees!

My parents came down for a visit on Thursday and my father and I did a long awaited job of replacing the old re-wireable fuses in the fusebox with more modern and reliable miniature circuit breakers, and the generator was used in earnest to keep the fridges and freezers going, and of course the web server!

The highlight of the week was the celebration of an event very important in my life (the start of it) and we ended up at a local restaurant for a meal. We had a good crowd, Katie came home for the afternoon and evening, and Vicki found a baby-sitter for Olivia (her other grandmother) so there were eight of us altogether – an excellent evening out, thank you Mum and Dad.

Finally my sister Anne, her husband Jason, and children came down to join us for Sunday and stayed for Sunday lunch, so it was quite a family weekend.

I said the weather improved during the week and since the weekend it has been hot – hence the title! Nature is bursting out, red in tooth and claw, and the bird feeders have been very popular with the goldfinches, blue tits and a nuthatch. It has also been popular with a sparrowhawk, that managed to catch one of the many fat pigeons that also invade the garden! I think it chased the pigeon into the conservatory window, and then pounced on the stunned bird – there was certainly a big thump at the time!

You may have noticed there are now what I think I should refer to as ‘sponsored links’ on the site (on the sidebar). I’m not allowed to specifically encourage you to click on them and I don’t particularly endorse them, but should curiosity should get the better of you, can I also remind you about Quackwatch which is NOT a sponsored link, and I do endorse!

There have been a couple of comments that I would like to comment on – firstly from (another) Liz, this Liz is an old school friend of my sister’s, who has joined the ranks of the readership (welcome!) and also a comment from a Patientline Call Centre operator who has responded to some of the comments I made in “The Patientline Scam” page (top right). If you would like to see the comment, it is attached to the page here. If you wish to contribute to the debate, then please do so!

Healthwise there is still little change to report. Bacon sandwiches still feature in my diet, but my mouth seems more sensitive and I have had to find a less salty variety. My weight is slowly increasing – still at about 1lb a week.

And that just about sums up the week – still Onwards and Upwards!!

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Certainly the weather forecast is not very good, and we have had some strong winds both this afternoon and last night – with more to come! I expect the blossom on this tree may be gone by morning! However, no power cuts (yet?) so we will see what the evening brings.

However the main reason for this post is just to pop up another photo of Olivia. It is a couple of weeks since I last posted one, and even in a couple of weeks I think you will see some change in her! She isn’t always quite as placid as the photograph might indicate, although as I write this, she has been asleep for about 3 hours!

We had a visit from university friend Tom, and his wife Carol, yesterday! Good to seee them again, we shared a flat and house for 3 years, and still remain friends (as with the two medics that we shared with. Somehow (?) Tom is of the opinion that I am eating lots of bacon at the moment (can’t think why) so he kindly brought a get well present of bacon and sausages! They were delicious for brunch today! Tom also remarked that I looked a lot better than when he last saw me, about a month ago, so it must be true!

Richard started a trend a couple of weeks ago with his sock images, so I thought I’d add mine to the collection – and here they are!

Finally, remember that the blog is best viewed using something like Opera or Firefox. You can download Firefox with the Google task bar from the button at the top of the page, or get Opera and basic Firefox from the links on the right. Both are excellent (free) alternatives to Internet Explorer.

Onwards and Upwards – and Happy Mothering Sunday to all mothers!

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As Richard has pointed out, it is a week since I last posted, but the major event was the trip to Guy’s yesterday.

It was a chilly and misty morning when I set out at the early (for me) hour of 7am to catch the train to London. Inevitably we were slightly delayed (fog on the line?) but I arrived only a few minutes late just after 9:30.

After having the customary armful of blood removed (which included blood for another chimerism test) I saw Orla, who is filling the role of Clinical Nurse Specialist in the clinic. I have known Orla a long time from her time in the day unit, so I was delighted when she thrust a hand at me with the announcement that she had become engaged at the weekend! Congratulations Orla! She had a look at some rough and dry patches of skin, but was uncertain whether it is GvHd or not, although the changes in my mouth might be indicative that something is happening.

My next stop was to see Rachel, the dietician, who was delighted to note that I had put on a couple of Kg since last time, however she did remark that while my diet seemed good, I could still do with a few more calories, so I have a new range of dietary supplements which add protein as well as carbohydrates. These are a new Fortisip range, and (to quote) “Not as gloopy”. I will try one today, although I feel rather full after my bacon, mushroom and tomato sandwich. (A little snack after a bowl of Special K.) Rachel also repeated the strength test on my hands (you squeeze a machine that tells you the power of your grip) and that had increased from about 25kg to 35kg on my weaker hand, which is further indication that my strength and stamina are improving. I had also noted that my walking pace was much faster while I was walking from Waterloo to Waterloo East, and I had taken the stairs at Guy’s, rather than the lift. That said I was pretty tired when I arrived home!

Finally I saw Dr Kazmi, accompanied by his two year old daughter, Sofia (he had problems with the nanny that morning!) He again was ambivalent about the evidence of GvHd, however his examination could not find any enlarged lymph nodes, so he thinks that the disease is under control, and as he said “We must keep our nerve and wait for the donor lymphocytes”. He sounded reasonably optimistic because we know that the disease is sensitive to the immune system because of last year’s response, so it remains a case of wait and see. However my next scheduled appointment is in four weeks, by when a firm reaction should have started. He is also going to book another PET scan for about six weeks time.

As I was leaving I saw some more familiar faces. First was the lovely Linny, who is leaving next week… to have a baby in May! I had suspected that she was expecting for a while, but hadn’t liked to say anything! Linny, if you read this, thank you for all that you have done and hope all goes well. I was one of Linny’s first patients at Guy’s – she started here about 2 weeks before I was discharged after my transplant.

I also saw fellow transplant patients Sarah and Jean. Sarah (of like2like fame) looked really well and I was delighted to see her. Jean also looked well, although her journey post transplant has been less smooth. Her chimerism tests showed that she was reverting back to her own immune system, and she has had donor lymphocytes which triggered GvHd which then went on to affect her liver. But as Isaid, she too looked really well, although she claims that it is the steroids she is taking to help control the GvHd!

I suppose it is a timely reminder that GvHd is not a trivial matter (although preferable to the alternative!) and of course John’s Blog is another reminder.

And talking of John’s blog, I note from his latest posting that he attended a “Question Time” recording in Newport! I didn’t see the programme (I had an early night after my London trip) but I shall look forward to reading about it!

Finally (at last??) I saw an interesting article about fruit juices in yesterday’s “Daily Telegraph”. No mention of Acai berries, but looks like more common fruit juices have a beneficial effect. Now if only the quality of Acai berry extracts could be guaranteed, (or the price dropped) I might be tempted – meanwhile, mine’s a Gin and Cloudy Apple Juice, or perhaps a Vodka and Cranberry!

Other than yesterday, the week was quiet. Garage tidying has finished, at last. It is frustrating though when a job that would normally take a day spreads out over nearly 3 weeks. I have also cleaned up the BBQ in preparation for the summer (OK, so it is going to snow on Sunday…) another job that took about 3 hours over three days rather than two hours in one go, but at least it is done!

So on that note….

Onwards and Upwards!

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On a serious note, those of you that live in the south may have seen a news item on Wednesday about Keiton Knight. an 8 year old boy who died on 1st march from leukaemia after a 4 year fight. Keiton was waiting for a bone marrow transplant, but being of Afro-Caribbean descent, donors are hard to find, and mixed races are greatly under-represented on the registers of bone marrow donors. Sadly he was unsuccessful, although his story raised awareness and many new mixed race donors were found through his story. Keiton is featured on like2like, a web site set up by a fellow transplant patient, Sarah, who is also of mixed race, but was fortunate in finding a suitable donor and is now in remission from acute myloid leukaemia. For those that are interested, here is a link to The Afro-Caribbean Leukaemia Trust which promotes awareness of the problems that mixed race patients have in finding donors and has more information about Keiton. And if anyone (whether mixed race or not) would like to become a donor, details can be found from The Anthony Nolan Trust website.

My apologies to those who were briefly barred from the blog during the week! As part of my campaign against spammers, I loaded a number of IP addresses into the site blacklist. However I was using a different method of extracting them (taking them directly from the blog database) and I took one or two legitimate IP addresses! I will be repeating the exercise again (there are currently 250 spam comments that have been caught by the filter waiting to be ‘dealt with’) so should it happen again, please e-mail me and let me know (you had better note that now because if you are locked out of the site, you won’t see the e mail address!)

Other than that, nothing else to report healthwise. My next check up is on Thursday, and that will be six weeks after the DLI! However on the food front, I have re-discovered something even better than bacon sandwiches… Bacon & Mushroom sandwiches! Bring on the Calories!

Onwards and Upwards!

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Really because there is not a lot happening on the health front at the moment! I keep thinking that there are signs of GvHd, but I can’t be certain! Certainly my sense of taste is changing slightly, but there is no sign of the thickening of skin that heralded GvHd last time – but it is only 5 weeks since the infusion!

My weight is slowly creeping up – I’m about 3lbs heavier, which equates to about a pound a week, a target Rachel the dietician said I should aim for. Other than that my stamina is getting better, and I am feeling stronger – although not quite ready for weight training!

It has been a while since I posted a photo of Olivia, not because I haven’t seen her, but there hasn’t been a lot of change (or perhaps seeing her nearly every day, I don’t notice it). However Vicki took a lovely one of her recently, and here it is! The feet aren’t hers, they belong to ‘Albert le blanc’.

And talking of feet, you may have seen comments by Richard, and I am indebted to him for this image… which also appeared here,

The new theme has generally received favourable comments. There were a few criticisms about the colour scheme and lettering, but these have been tweaked. However since it is a sheep motif, I thought these two images were particularly apposite. They are of course reproduced with due acknowledgement to the BBC, Arrdman Productions and anyone else who may hold copyright or intellectual property rights to them, but they amuse me and I hope they amuse you too! I like the one of Shaun loitering within tent!

Onwards and Upwards!

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Yes, I know that Spring doesn’t officially start until the equinox on 21 March (unless you are the Met Office, who start Spring weather records from today) but it has been a lovely sunny day here – in between rain showers – that it feels like April, so I am hunting down a Spring theme for the blog. I have found this one, but it may need a little more tweaking, and I haven’t seen what it looks like with IE yet, but it seems to display OK with open standards compliant browsers such as Opera and Firefox – and if you haven’t yet got round to downloading them yet from www.mozilla.com or www.opera.com I urge you to do so!

Not much change healthwise since Tuesday, apart from a slight change in taste, so we will see what next week brings! Meanwhile I must blacklist a few more spammer IP addresses – last week I accumulated over 1000 spam comments on the blog. None of them were published, the spam filter saw to that, but they take up bandwidth and distort the statistics, so I prefer to block them before they get to the system!

Still – Onwards and Upwards!

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