Peter’s Hospital Diary

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

Tags: Diving, PET Scans

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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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And to repeat the last blog greeting – Happy Easter everyone! The sun is shining brightly down here – it is a lovely day – almost BBQ weather!

However the real reason for this post is to draw your attention to a new comment on The PatientLine Scam post. I have just released this from the moderation queue and is from ‘bleeper’ who is a (disillusioned!) patientLine employee. You can read the full text of his comments at the link above, but basically he is saying that our reading of the announcement was correct – concessions for the over 65 (half price TV) have been abolished, and that in addition to hiking the cost of an outbound call from 10p/min to 26p/min, the connection charge (or minimum amount payable) has doubled from 20p to 40p, and this charge is levied (as before) regardless of whether the call is answered or not. As he says, the press release was very economical with the truth.

John also asked (in his blog) if I had insider information! the answer is no (apart from comments such as Bleepers)! However there are lots of snippets around. This Link (again to the BBC) indicated that the total ban on mobile phones in some hospitals was more the result of pressure from companies providing bedside telephone services rather than for technical considerations. I did make a comment about that in my original post, although that was more speculation from a cynical and suspicious mind (with a bit of technical insght)! However, would you want to be hooked up to potentially life saving monitoring and diagnostic equipment if it was so easily disrupted by a mobile phone signal?

Anyway – enough of PatientLine (you haven’t come back to me with thoughts about a PaytientLine – or other name – blog) and it is time to go and find some food! Food is still tricky, apart from the sore throat and mouth, my mouth is still quite dry, however I am almost getting to enjoy the food supplements! With a bit of careful chemistry, and the right ingredients, half a pint of milk can be persuaded to give over 1000 Calories!

But never mind – Onwards and Upwards!

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It is a glorious sunny day here, the conservatory has all its windows open, there is the gentle hum of lawn-mowers from the neighbours (I ought to test my strength and do ours) and the birds are singing!

I get great pleasure watching the variety of birds in the garden, particularly on ‘weak’ days when I can sit and watch the bird feeders for an hour or so. Apart from the sparrowhawk that I mentioned last week, we get blue and great tits, nutches, goldfinches and yesterday we had a bullfinch at the feeder.

Which brings me on to the main point of this post… feeding the birds is all very well, but you need a good source of high quality (and relatively inexpensive!) bird food. I can thoroughly recommend The Really Wild Bird Seed Co as an excellent source of bird food in quantity. Apart from the bird seed (much of which is grown on the farm) they also sell a wide variety of feeders – and to cap it all, they are really nice people! The only catch (you might think) is that the post and packing would be expensive. Not so – it is all included – what you see is what you pay! So have a look at their site and see what you think. (I have also included a link in the sidebar under ‘other web sites’).

While on the subject of food, I have been living with this impaired sense of taste and smell for a while, but last night it really got to me! I was watching (unusually) the hairy Bikers programme, where the two intrepid motor cyclists were in Argentina, cooking really thick steaks and the most wonderful looking salads. I have never been to Argentina, but I did spend a few days in Chile some years ago, where I sampled some of the delicious South American beef. Looking at last night’s program reminded me how good it was – but also brought home the fact that if I was presented with it now, I couldn’t eat it (sore mouth) and with my sense of smell as it is, I wouldn’t enjoy it as much even if I could! It really got to me! However today it seems a petty thing to whinge about – I just look forward to the day when I will be able to enjoy such things! Now, where’s the Scandishake…?

So while the birds are munching their way through the feeder mix, I shall look at the not-so-delicious scandishake, and contemplate the lawn mowing!

Onwards and upwards! (Particularly the birds!)

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Whatever it is called (you decide and let me know) it has certainly provoked some interest from you all! I like the idea of registering one of the above names (which one?) and perhaps set up a blog using it. Comments please.

In fact the more I look at the patientline web site, the more annoying I find it. The constant reference to ‘Loved ones’ seems (to me) to be applying psychological pressure with the sub text being on the lines of “show you love them by keeping in touch” with the corollary being “if you don’t keep in touch, you obviously don’t love them”, ie emotional blackmail invoking guilt feelings.

The idea of setting up the recipe blog (given that the last few weeks have been food dominated!) seemed to fall on deaf ears, so I shall abandon that plan!

By the way, there are definite signs of itchiness on my face, and hints of a rash – so maybe next Thursday I will get some confirmation that GvHd is returning!

O&U!

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A week or so ago I received a comment on my post “The Patientline Scam” and I remarked on it here in the main blog. It in turn prompted a ‘robust’ reply from fellow blogger John! Patientline’s charges have been under investigation by OfCom for a while now, and this morning there was a report on both the BBC’s Breakfast programme and Radio 4’s Today programme about a change in prices – a reduction in televion charges from £3.50/day to £2.90, accompanied by a 160% rise in outgoing call charges from 10p/min to 26p/min! The BBC text can be found here.

Not much else to report on my health – I am still cautiously optimistic about the GvHd – my skin seems to be getting itchier, especially my scalp and palms, although no obvious rashes or skin thickening, so it remains a case of wait and see! My mouth is still sore, and I have been relying more on the scandishake supplements to maintain my calorie intake, although I am using them as a supplement rather than a replacement!

That said – I can hear the call of a bacon and mushroom sandwich – so I had better go and answer it!

Onwards and upwards!

PS – early afternnon – The Paytientline (a not inappropriate typo!) site has been updated to reflect the fact that outgoing calls cost “just” 26p per minute (my quote) and the drop in TV prices, which now include internet access. However it looks as if they may have dropped the half price concession for those over 65 (at least there is no mention of it). If that is the case – nice one PatientLine – rip off those least able to afford it! While I was looking for the info, it appears that around mid-March, Patientline shares were being ‘pumped and dumped’ as there were a number of those spam emails urging investors to buy shares! As I am not regulated by the FSA, I can’t give investment advice, but with the shares at an all time low, and given the adverse publicity PL have been getting, you can draw your own conclusions!

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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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