Peter’s Hospital Diary

With May just around the corner, the recent good news etc, I thought it was about time for a new theme. Actually there are some practical reasons. Although I originally chose the last theme for the spring-like feel of the photo, the lambs are probably now cutlets, and I always found the ewe a bit menacing! The overall feel of the theme was a bit ‘heavy’ and the sidebar was filling up so much that you had to scroll a long way down to see all of it. So, a new ‘lighter’ theme, with a format in three columns. (Although as the columns are narrower, the right hand sidebar still goes down a long way - room for a bit more tinkering!)

I have tested this with IE, and it seems to be OK, but as always, I think that Firefox or Opera are better alternatives (and still better than IE7, which although - at last - has introduced tabbed browsing pages, still feels a bit clunky). You can download Firefox (it is free) and/or Opera from the link on the right hand bar. Try both - they co-exist quite happily!

Yesterday saw an expeditionary mission into the long neglected garden. Apart from a fine crop of thistles, it looks pretty run down, however a bit of gentle weeding and a scalping with the lawn mower got it looking a bit better. However there is some way to go! I found that digging a hole to plant a tree wore me out. I might manage to plant some seeds though!

Last night we went for a BBQ at Olivia’s (!). It got a bit chilly, so I had to lend her my hat…

It is a sunny day again today - I feel the need to BBQ and consume Pimms!

Onwards and Upwards!

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Well after 3 days at work (Wednesday was spent in London at a trade exhibition) I decided not to overdo things and not go in today - I did feel quite tired this morning, however it was good to go back! I do need to check with the team at Guy’s too, which I will do next Thursday. Still, I got some useful administration done.

After a lie-in this morning, I went into a nearby village to the local ‘tea room’ for a cup of tea and a slice of cake - in fact two slices - caramel fudge cake and lemon tart - both with cream of course, which together with the two rashers of bacon for breakfast has sorted out my calorie intake for the morning! It is a lovely sunny day down here and it was good to sit on Fred’s patio enjoying tea and cake! The sobering aspect though was the funeral of Eleanor Dlugosz - killed in Iraq last week - which took place in the Church just up the road from the tea room.

I gather that some of you have been unable to post comments in the last few days. I have installed a new spam filter and the settings were a bit too restrictive, which affects users using a proxy server. I have now relaxed that rule, but if anyone is still having problems, send me an e mail.

I have added a photogallery to supplement the blog. There is a link on the right, but you can find it here. At the moment it is all Olivia (some that haven’t been on the blog at all) but I will expand it to add more photos - mainly those that have been on the blog, and maybe some others.

Now I ought to go and see my friends at The Really Wild Bird Food Company as I see the bird feeders are almost empty!

Onwards and Upwards!

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And that next step was going into work! Although things have moved on without me, there were a number of administration tasks that were building up - and just going in is an important psychological step. I have to say that I was overwhelmed by the welcome (and rather humbled to find out how many people had been following the blog). There were certainly some comments about how much better I looked, compared with when they saw me last, back in January, and everyone was clearly on my dietician’s side judging by the packets of biscuits and very sticky cakes that were pushed in my direction!

I still need to be careful not to overdo things and I need to consult with the medical team about returning full time, but all I can say about today was it was good to be back!

Onwards and Upwards!

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It was a busy weekend! Just after I posted the last entry, I was visited by friend Adrian. Adrian (who has posted comments here) you may remember has a Caterham 7 and promised a while back to take me for a ‘Blat’ in it! Well he duly did so on Saturday - a great experience - thank you! The photo was taken just after we got back - I think the smile says it all!

After the adrenaline rush of Saturday, things calmed down a bit for Olivia’s Christening on Sunday. This took place during a normal service, and she was very well behaved - apart from the actually baptism itself, when she did have a little squawk! However she calmed down afterwards, as you can see here, with her in her Christening gown. She looks as if butter wouldn’t melt in her mouth, however Richard wondered if she was hiding a Pimms underneath her towel in Saturday’s post. Well, while I can neither confirm nor deny that, I have got this photograph…taken about 3 weeks ago!

There are quite of lot of photographs of Olivia now, and I am thinking about setting up a photogallery with more photographs of both Olivia and some of the others that I have posted on the blog.

So that is it for today… as always - Onwards and Upwards!

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Just a quick post to thank you for your kind comments following Thursday’s news, and to say that I have heard from fellow transplant patient, Mark. He posted his news in comment 5 on Thursday’s post, so please look at it! Keep it up Mark - and enjoy the sun (but don’t forget the sun block!).

The pictures of Olivia were taken during the week!

It is another glorious day here. We did enjoy the first BBQ of the season last Sunday, while recovering from Saturday, and it was also an occasion for the first Pimms of the summer! I’m happy (and relieved!) to say that my impaired sense of taste rose to the occasion and it was as enjoyable as I expected! One odd thing is that very fizzy drinks seem to aggravate my mouth, but the Pimms (mixed with dry ginger - less sweet than with lemonade) seemed to take away some of the fizz. Anyway, I anticipate enjoying another one later today!

There are now some picures from the wedding fair here and I will be putting some more there later today.

Tomorrow is Olivia’s christening. The poor thing was a bit unwell yesterday with some stomach upset, but she is much better this morning and almost back to her usual self. I will post a photo or two from the christening (perhaps I ought to start an Olivia photo gallery… or a repository for all the photos I have posted on the blog).

Onwards and Upwards!!

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And it was off again at silly o’clock and a chilly start (3C when I got in the car to go to the station) for the trek up to Guy’s, this time uneventfully and I arrived just before 9:30 for my 9:45 appointment. Straight in for the bloods (only two test tubes this time) and then in to see Dr kazmi. The official news from the PET report is that the residual tracer showing up is normal physiological activity - ie, there is no detectable active disease! Good news indeed, but of course the note of caution is that we have been here before…! Still, much better than the prognosis three months ago!
Incidentally, this photo (which I have copied from Elspeth’s Blog shows how far I have come in the last three months! That said, walking up a couple of flights of stairs (just to prove I could!) was an effort - more food supplements! (The photo was taken at the Wedding Fair, with my fellow Leukaemia Care trainers)

The conclusion is that the graft Vs Lymphoma effect is definitely working, the unknown questions are how long it will continue (although the GvHd has only just started) and how long the effect will last (ideally indefinitely to continually zap the rogue cells) but these are unanswerable questions. The last dose of donor lymphocytes was a fairly hefty one, and of course was the last dose in storage, but it might be possible to harvest some more from the donor if needed. But let us hope that they won’t be!

I saw Sarah (of like2like - the web site highlighting the lack of mixed race donors) who was looking really well and also seems to be in remission, and Jean (who had her transplant just after me) who was also looking good. No news of Mark (fellow transplant patient) though - so Mark, if you are reading this - please let us know how things are going.

After leaving Guy’s, I popped over to the Strand to meet a friend (and work colleague) for a coffee (tea in my case) and a piece of cake. London is at its best in the spring - it was pleasantly warm! Then a quick trip to Waterstones and back home!

What more can I say (apart from more thanks to my anonymous donor and the team at Guy’s) but… Onwards and Upwards! (and to change the category of the posts to ‘Getting my life back’)

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Oh dear, the food police appear to be active according to this report from the BBC website. I believe it was also covered in one of the daily papers. That is a great pity because I have just started fully enjoying bacon sandwiches again! This is for two reasons. The first is that my sense of taste seems to be slowly improving, although perversely, my sense of smell is no better (food cooking, especially vegetables such as onions still smell pretty unpleasant) and also the potions and lotions that I came away with from Guy’s last week included something to zap mouth ulcers, and also an anti-fungal in case I had a low level infection in my mouth. I’m not sure which one is responsible (maybe both) but my mouth is a lot less sore than it was. The skin on my face is showing more signs of GvHd - it is dry, so I am slapping on the diprobase, with the topical steroids in reserve, (Part of the lotions and potions package).

My finger nails have survived so far! This is partly because the last few days have been pretty busy. I haven’t mentioned it much, but for the last couple of months Felicity has been organising a Wedding Fair. This was held on Saturday (very successfully) which meant that I haven’t had much time to sit and worry about the results!

WOW!!!!! Just as I was writing this, the ‘phone rang to reveal Rob (the specialist registrar) at the other end! He rang to discuss immunisations (one of the side effects of the transplant is that it wipes out the effect of any immunisations) and we discussed the need for something to protect against things like pneumonia. However he also mentioned the PET scan, and it appears that the results are good, with little or no active disease present! I will get the full results on Thursday, but it appears to be very good news indeed! Funny to think that 3 months ago there was talk about 3 to 6 months to live! Still, no room for complacency as we have been here before, so carry on the good work my little donor lymphocytes!

Oh yes, to go back to Saturday, it was good to have Neil, Suzy and Elspeth (Leukaemia Care trainers) visit the fair - thank you for your support - and Suzy took this photo of Olivia!

Finally, I have been looking at some of the sponsored links - provided by Google - which change to according the content of the blog, and different pages seem to have different links - and you may wish to look at them too! (But remember quackwatch if you follow any of the ‘miracle cure’ promises!)

Next event is Olivia’s christening next week - I may have a couple of photos from that to post, so watch this space!

So it seems very much Onwards and Upwards…!

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And it was up at silly o’clock yesterday morning, for a quick breakfast before starting my pre-PET scan fast! Then back on the well worn path to Guy’s again although actually a slightly different path as the trackwork NetworkRail are doing round Basingstoke meant that I travelled a different route - but that is by-the-by.

The morning clinic followed the usual routine - bloods, a chat with the registrar (one I haven’t seen before - just returned from maternity leave and whose name I didn’t catch!) but she did confirm that the sore mouth and the slight skin rash is almost certainly GvHd - which is a bit of a relief - not that GvHd is desirable in itself, but it is evidence of the very much desired Graft Vs Lymphoma effect. As was pointed out, the Holy Grail of transplants is to get the GvL without the GvHd! After that it was a quick chat with Rachel - the fierce (not really!) dietitian, who beat me up severely for losing a couple of Kg since last time. However it isn’t all bad as I seem to be gaining strength as my grip is stronger, so I am building up muscle. Still - time to up the supplements.

That was followed by a trip to the bank and then the pharmacy for another bag full of creams and potions for the inevitable skin problems. If I didn’t get my prescriptions paid for (retrospectively by my employer), I’d think about emigrating to Wales.

It was then time to nip over to St Thomas’s, and my friends at the PET centre - particularly Margaret, the Unit Manager, and her team of radiographers! The PET scan was pretty routine, and I finally left at 4:50 to get the train back from Waterloo, grabbing a much needed sandwich from M&S on the way! (Selection was easy - look at the packets of the likely candidate sandwiches - ie, those that aren’t spicy - and choose the one with the most calories!) Overall not a good day on the calorie intake because of the fast.

My next appointment is next Thursday and I am going to have to concentrate hard on not thinking about it. It is going to be a bit nail-biting waiting for these results - a lot rests on them. Still, it has to be done. If it is bad news, it won’t get better for not knowing!

There have been a couple more comments on the patientline scam in this blog, and I have copied them to www.paytientcrime.org.uk and I have closed the post here to further comments. Please post them on the new blog!

Finally, fellow blogger John has been continuing his battle with bureaucracy… don’t let them get you down, John.

Anyway, with fingers crossed, Onwards and Upwards

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Yesterday afternoon I had a ‘phone call from Margaret, the PET scan centre manager at St Thomas’s! It appears that Dr Kazmi is keen to get the PET scan a bit earlier than we had thought, and it just so happens that there is a slot free at 2:15 this afternoon - which I have accepted! This will be scan number 20 - I’ll be able to apply for my “Frequent PET scan Flyer” card soon!

The train situation doesn’t seem quite as dire either - I have found an alternative route to London that doesn’t involve Basingstoke and only takes 20 minutes longer (but will probably be packed!) Still - as always - Onwards and Upwards!

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Just a quick post to say that I have launched PaytientCrime which is now up and running. Initially concentrating on PatientLine, which started the debate, I will also welcome posts on other companies who appear to be exploiting a market position to take advantage of sick people.

The blog differs from this one in that it invites posts from other registered users - and anyone can self register. This is a new departure for me, so I will be watching to see how it develops, and I may modify the format in the light of experience… but let’s see how it goes!

On to other issues! I was delighted to receive a call from Helen, ‘my’ Macmillan nurse. I don’t suppose Macmillan nrses need much introduction (but click on the link for more info) but I was put in touch with the organisation in January, after the initial grim diagnosis, and they have kept an eye on me ever since. Helen was delighted with the way things are (I’m pretty chuffed too!) and while things are still far from certain with GvHd, the sore mouth etc, etc, so we will see what happens tomorrow when I go up to Guy’s.

And that will be an interesting journey with major rail works at Basingstoke… But I’ll tell you about that after the event!

Onwards and Upwards

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