Peter’s Hospital Diary

And what a glorious weekend it was! It looked a bit overcast this morning, but the sun is now shining as strongly as ever!

This week sees middle daughter’s birthday, so for her birthday we went and had a picnic at Goodwood races on Saturday. It was another glorious day – very hot, so it was a shame that the air conditioning im the car chose that day to fail. However it didn’t detract from the day, with sunhats in evidence. We took one of Kt’s friends, Kim, and they did quite well with the bookies, with Kt ending the day £25 up! I made £7! (Kt – middle daughter – is on the right) I had to take suitable precaustions to protect my still delicate skin – just as well as thetre was a little sunburn in evidence – even with the factor 25!

We had another BBQ yesterday – with continuing research into the taste of Pimms! Funny that although my sense of taste is slowly getting back to normal, my sense of smell is still impaired. There are some roses in the garden that I am assured have a strong fragrance – but I can’t smell them at all!

I forgot to mention in Thursday’s post that the next check up will be in 3 weeks time – the intervals are slowly increasing! My bllood counts from the previous vist were OK – my kidney function is still very slightly impaired with slightly elevated Creatinine levels. Creatinine is a waste product produced by muscle (the creation of muscle rather than from muscle function) – there are some more details here. A Normal upper level is about 105. Mine last time was 130, the time before it was 112, so it is only just outside ‘normal range’. I’ll just have to drink more! (water!) My liver function pretty much back to normal – still slightly elevated enzyme levels, but nothing that I will make any practical difference to my life style (I don’t have to give up Pimms!)

Better go and book the car in to have the air condtioning fixed!

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And it was off to London, bright and early, for my fortnightly consultation with Linny. I also saw Florence – who you will remember is one of the Haematology specialist nurses and who gave me lots of encouragement when I was feeling a bit despondent after the 23 March PET scan. (The first one after the transplant that showed the presence of the active Lymphoma – the ‘first point on the graph’).

The consultation with Linny lasted about 15 minutes, and really just concentrated on how I was feeling and the GvHd. We did discuss the progress of the GvHd, which is possibly getting to mild chronic phase, but should eventually run its course. Meanwhile the next PET scan has been ordered for about six to eight weeks’ time.

After the consultation I returned the surplus drugs to the pharmacy (given the value, and the fact that they will just be destroyed, I did briefly consider e bay!) and then went over to St Thomas’s for the “Cancer and Complementary Therapy” conference.

I described my aromatherapy massages in some January and February blog entries, and a few weeks ago Kim (The aromatherapist) asked me if I would speak at the conference to give the “patient perspective”. There were about 150 delegates at this conference (the first hosted at St Thomas’s) and the subjects covered topics such as the growth of the Complementary Therapies Service (particularly aromatherapy) at St Thomas’s, through to professional qualifications and drug/aromatherapy product interactions (specifically the essential oils used in aromatherapy.

I spoke for about 10 minutes, together with another haematology patient, and I think our talks were well received! Thre conference was supported by Dimbleby Cancer Care (formerly the Richard Dimbleby Cancer Fund – I have updated the link on the right) and Greenwich University, who run degree courses in complementary therapies.

So a good day – although it was somewhat ironic that I was talking at an aromatherapy conference when my sense of smell is still impaired! Oh well! 🙂

Off to light the BBQ and continue the Pimms’ testing!

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It did look a little overcast this morning, but that has burnt off and it is another lovely summer day here. I have been out watering the garden this morning, especially the veg patch (only a few beans and some onions) but I have yet to catch whatever is eating the tops of some of the beans. Likely contenders are rabbits or pigeons! I did see a fox cub in the garden the other day, so perhaps its mother will frighten off the rabbits…

I am off to London tomorrow for the fortnightly check up, and I’m going to take back some of the surplus drugs – it’ll make a change to take stuff back to the pharmacy! The list inclusde 2 full (unopened) and two haf boxes of Cyclosporin, a half box of Mycophenolate mofetil (another anti-rejection drug), the unopened box of Thalidomide and a few boxes of out-of-date anti-biotics. It would be interesting to add up the value – the sad thing is that they will all be destroyed.

The check up will include the inevitable blood samples (after all, what would a visit to a haematology department be without blood samples) and to see how the GvHd is going. On that front, my skin was a bit itchy yesterday – my own fault because it was feeling better on Monday and I forgot to slap on the creams. 🙁

On a more positive front, I have – purely in the interests of research – tried a Pimms and I am delighted to say that at last it is beginning to taste as a Pimms should – it must be summer! 😀

After the check up I am attending (and possibly speaking) at an aromatherapy conference at St Thomas’s! Yes – aromatherapy! Now aromatherapy hadn’t used to really float my boat, but those of you who have been following the blog since its start may remember me talking about Kim, the aromatherapist sponsored by The Richard Dimbleby Cancer Trust who did the most wonderful and relaxing foot and back massages – and I became a convert! Well, she is organising a conference on the use of aromatherpy for cancer patients to get it more widely accepted and adopted, and has invited me to speak in favour – which I am more than happy to do!

Other than that, I have been completing the final touches on a training package for LeukaemiaCare. This will be given to both LeukaemiaCare volunteers and external agencies and covers areas such as listening skills and coping with loss. They have just been sent off for validation.

So its been a busy few days – and as the sun is shining and the washing looks dry, I’d better do some exercise – like the ironing!

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I was going to write this last night, but after two glorious days, the skies clouded over and we heard the rumble of thunder – however this morning the sun is shining again and I am writing this sitting out in the garden…and if you look carefully you can see a pair of colourful shorts – bought in Dakar, Senegal some years ago – that I have been living in this weekend!

And it was a good weekend, the BBQ was pressure washed and put back into use, I mowed the lawn, and found it much less tiring than last time – another good sign! My sense of taste continues to improve slowly, although my sense of smell is still pretty poor. However he white wine that I drank at the wekend – purely in the interests of research, you understand – tasted very pleasant! I also enjoyed some of my father-in-law’s lemon marmalade this morning – the first time in several months as it has previously tasted too bitter to me. Just as well as I noticed some embryonic lemons on the lemon tree (or perhaps bush might be more accurate) this morning – by the time they are ripe in the autumn I hope I’ll be enjoying the odd G&T! And, we finally got in touch with tiler, who is going to tile the conservatory at the end of the month.

On the health side, my skin condition is improving – helped by liberal application of the diprobase. In particular the swelling on my right leg and ankle (which Linny thought was caused by leaky capillaries) seems much less pronounced – perhaps because of the and the Dermovate (the steroid cream) I have been applying to them.

I have taken another step forward and started wearing the contact lenses again. I did start a few weeks ago, but had to stop – not because of a problem with my eyes – although Mark’s (fellow patient) GvHd did affect his eyes – but because my hands were so rough I couldn’t clean them. However the skin on my hands is pretty much back to normal, and my feet are getting there. I might even have to trim my hair soon! (First time in 5 months!)

Which brings me to a slightly more serious note – there are lots of unforseen or less obvious consequences of these side effects. Mine with the contact lenses is trivial, but if you look at John’s blog (you have been looking, haven’t you?) you will see that the consequences of his GvHd are much more severe and have affected his mobility and quality of life. I’m sure he won’t mind me saying that I admire his stoicism – and I’m sure he would appreciate your comments of encouragement!

Hmm – I see the sky has clouded over and a cool breeze has appeared from somewhere – maybe that was summer…

Onwards and upwards (By the way, anyone know how to get rid of red spider mites – two have just been squashed on the keyboard – leaving red smears everywhere!

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Looking at that t+133, I think I might start counting in weeks – so today is t+19.

And a lovely sunny day it is here too – which is just as well as we have taken advantage of youngest daughter’s absence in France to make a foray into her bedroom. An interesting voyage of discovery too, once we had found somewhere to attach the string so we could find our way out again. Lots of long lost (and replaced) items surfaced from the deepest recesses of under her bed, such as her school calculator (‘lost’ and replaced some 2 years ago) and several other items. She returns this evening – she won’t recognise it.

The tidy up also produced several loads of washing, so I have had a day of washing, drying and ironing while Felicity has been at work!

There has been a bit more feedback from last Friday’s City Hospital appearance with a couple more letters/cards. It’s funny how they all seem to start with the words “I don’t usually watch daytime TV but….” It isn’t anything to be ashamed of (unless it it is Kilroy)! And thank you John for the comment (on your site) – I am very envious of the vibrating heated mattress option! (That should increase your hit counter!)

Back in the real world, the tiles for the conservatory arrived yesterday, together with the self levelling (actually self smoothing – not quite the same thing!) compound that will be used to embed the underfloor heating wires. So now I need to work out the wire layout and get that done before we have the tiles laid. (If I can ever get hold of the tiler)

Finally I have just ripped a David Gray CD to mp3 format for the music server here at home. “So what?” I hear you say. Well this particular CD has a track on it that received extensive air play just before Christmas. I particularly remember it because the day unit at Guys has Radio 2 on in the background and this particular track is very Radio 2 and it played incessantly during my visits while I was waiting for my blood count to improve for my back up stem cell harvest (the one that would have been used if the donor transplant had gone horribly wrong). You may remember the song as it has this line “Tell me something I don’t know” as a refrain. I never heard the title at the time. I was amused to discover today that the track’s title is… “Hospital Food”. I had to laugh, given my comments on hospital food at Guy’s! If only I had known at the time.

I see it is clouding over a bit, so I had better go and get the last of the washing in. A man’s work is never done…!

O&U!

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Just noticed that it is five days since I last posted 🙁 and although I would like to be able claim that it is because I have been too busy responding to my fan mail that would be untrue! That said, I did have a couple of cards from people who had seen Friday’s episode (and no – they hadn’t been alerted!)

So what have I been up to this bank holiday? I have finished laying the thermal insulating tiles in the conservatory, the next stage is to lay the heating cables and get the tiles laid – I’m not going to do the tiles myself. Sunday was a lovely sunny day here – the first for a while, so the garden was attacked, and I started my “get fit again” regime by pushing the mower up and down the lawn. Although tiring, it was something I couldn’t have done 4 weeks ago. Monday was spent chilling out (recovering!)

And I suppose that is the overiding theme – apart from the boost given by Thursday’s news, I am beginning to feel stonger. My skin isn’t as dry as it was, and the cracks on my feet are beginning to heal, so I can start exercising a little more.

The next job to do before the next check up on Thursday week is to sort out all the unused medicines that I have lying around the place and take them back to the hospital pharmacy. It will make a change taking something back!

Onwards and Upwards!

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Yesterday’s blog entry attracted record numbers of comments and almost record number of ‘hits’ on the pagees – thank you!

Well I had my 5 minutes of fame this morning although I didn’t see the programme live (I was out talking to the work medics about my future employment – looking good!) but I did watch it when I got home.

It seemed very odd watching 6 months of one’s life condensed into 10 minutes or so. There was so much I had forgotten but seeing it again really brought home the trials and tribulations of the last few months. Rachel and her team at City Hospital did a fantastic job of picking out the essence of it, and thinking about it for the final moments of the film reminded me just what an amazing thing a transplant is.

There is still a little way to go yet – I’m still on the fortnightly check ups in the transplant clinic for the time being, with another PET scan in two or three months time, and then at some stage I hope I will be back to the three monthly checks.

Providing all continues to go well, I may be going back to work in August, which will give a chance to start getting physically fit again and pass recreational diving medical so that I can go on the trip to Cyprus, and start getting back to normal. I also have some work to do for Leukaemia Care including some training material and an article for their magazine “Focus” as a follow up to one I wrote last Autumn. There is a PDF version of that edition in the “About… LeukaemiaCare” page.

This is not the end of the blog of course, as it isn’t the end of the journey, so I will be writing it for a while yet!

Once again – thank you all for your support!

Onwards and Upwards!

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Good news! The scan showed that while there is still a little bit of activity, the amount is much less than the last scan, showing that the incoming immune system is continuing to fight the good fight!

Although I did have a warm feeling about the result, I’m sure that you can imagine how enormously relieved I feel to get confirmation! I saw the pictures and there is just a small dot adjacent to my spine, where previously there had been a realatively large mass leading up alongside – absolutely tremendous!

So what now? Well, I will probably have another PET scan in a few months time, and I still have the residual GvHd (a small price to pay) but at last I feel I can really start thinking about the future. Although I have been making some plans (the diving in October for example) I now feel that they are a distinct robability, rather than a hopeful possibility, and I may be able to return to work in August. This has important consequences for the actual job that is being held open for, as it is likely that could have fallen through if the scan result had not been as good. So at last I feel that I might be getting my life back. I only wish my anonymous donor could share in it!

Meanwhile back in the clinic I saw my fellow patient Mark, who you will recall had his transplant at about the same time as me. He was looking well, but his transplant has not been quite so successful so he may have to have another in September. Mark, we all on your side – hang on in there and enjoy the holiday you have planned.

City Hospital were on hand to film the news – that film is being edited this afternoon to form the final bit of the ‘feature’ which will be shown tomorrow morning.

It has been a long journey (7 years and 3 transplants since diagnosis) but there really is the prospect that the lymphoma might be beaten. I don’t want to count chickens before they have hatched – mantle cell lymphoma is notoriously difficult to erradicate – but…

Onwards and Upwards!

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A brief post today as I have to continue laying the thermal insulating boards in the conservatory in preparation for the underfloor heating and the final tiling!

I did start it yesterday, but I underestimated the amount of tile adhesive I would need (expensive stuff too – almost as much as the tiles it is sticking down) and I must remember to wear gloves today as the adhesive is cement based and alkaline – which dosn’t do the already sensitive skin on my hands any good at all! It was surprisingly tiring too – I must remember that I am not (yet) as strong as I was!

All this is useful mind distraction for the big event of my week, which is of course getting the PET scan results fom my consultant tomorrow! I will post the results tomorrow evening so that any of you with crossed appendages (especially Richard!) can (I hope) uncross them!

I will also be doing the final taped interview for City Hospital, for the ‘featurette’ about my transplant. That should be transmitted on Friday morning.

I’m not sure if the weather is supposed to be “Sunny with occasional showers” or “Wet with occasional sunny spells” – I think the catch-all of “changeable” just about sums it up! Oh well, at least I shall be working indoors!

Until tomorrow then… O&U!

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Not a lot to report really although it was good to see the team from the PET centre again. The scan itself was much like all the others (with two notable differences) but the ‘exciting’ bit will be the results next Thursday. However I have a warm feeling about that!

But I said that there were differences in the procedure! One was that I was filmed by City Hospital for more footage for the ‘feature’ they have been doing over the last few months. This should be screened next Friday – the last in the current series. I went up to the City Hospital offices during my visit, where apart from seeing Rachel, I bumped into (name dropping here) Nadia Sawalha who is presenting the current series and who interviewed me a couple of years ago.

The second difference was that the PET centre seems to have had a new delivery of up-to-the-minute, latest chic, catwalk-hot hospital gowns. You may know the sort I mean – the shapeless ones that are oversize with lots of tie tapes that tie at the back (usually missing) and stamped “For hospital use only” (to prevent the removal of these high fashion items by patients!) Anyway – these were new, had all the ties, so I could walk down the coridoors and be filmed with some semblance of modesty – although after three transplants, there isn’t much modesty left!

Other than that it was an uneventful day, although it was pretty cold up in London – but then come to think of it, it isn’t that much better at home – where it is raining too!

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