Peter’s Hospital Diary

It seemed a long way to go for a 20 minute consultation, but then its always a pleasure to see Linny! Progress seems to be continuing, and the creatinin level from my last visit was 123, still slightly above the upper ‘normal’ limit, but much lower than it has been! The next check up is in 4 weeks, which will roughly coincide with the next PET scan. There was a bit of tooth sucking when I discussed getting dive fit again, but the suggestion that I might go back to work in August passed without (too much) comment!

The next check up will include some additional blood tests - one for chimerism, to test the ratio of donor cells to mine (it was 100% last time, so I’m not quite sure why that is being re-done - I must ask) and a CD4 cell count. CD4 cells are a particular type of lymphocyte characterised by a type of protein on their suface, and have an important role to play in fighting infections. There is more information here.

So I got back home failrly early to find that the conservatory is now tiled and grouted! I am very pleased with the final result, there is some furniture on order, but that won’t arrive until August.

The hot weather is back again today, the tomatoes and cucumbers were wilting a bit, but they perked up with some water, and the lemon tree (bush) looks as if it is having another growth spurt. Perhaps it objects to being called a bush!

So lets hope the weather holds up for the weekend!

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I have just realised that it has been a week since I last posted which I think is probably the longest interval since I started the blog back in early January, leading me to wonder how much longer the blog will serve any useful purpose!

However, it has been a busy week with lots of visitors at the weekend helping us celebrate Felicity’s birthday (yesterday). Both sets of parents were here, plus various cousins etc, so we were glad the weather held up for a couple of BBQs! Not so on Monday when we had very heavy rain, but then the garden needed it! Yesterday and today are somewhat drier!

The conservatory tiling is being completed this week, not without little dramas on the way! You may recall that I am putting in underfloor heating and I ordered the matting some weeks ago. However, I ordered it by the total area, forgetting that it arrives in a 500mm width, and as the conservatory dimensions are not multiples of 500mm, I ended up with too much! It can’t be cut, so I had to order a shorter length. Anyone who needs 4 square meteres of underfloor heating mat Screwfix part number 34893, please let me know! (I have a spare thermostat too). The tiler then discovered we needed some additional self levelling compound, and I have just been to get some more tile cement and another box of tiles! It should grouted and finished tomorrow, although I won’t be here for that!

And the reason that I won’t be here is that it is three weeks since I last saw the lovely Linny, and it is time for another check up! The next PET scan (number 15!) has been ordered, and although I haven’t had the appointment yet I expect it to be in about 4 weeks’ time. I will post the results from tomorrow (the blood tests) when I get back.

Please don’t forget to look at Elspeth’s and John’s blogs. Elspeth has just started her treatment and John has some challenging developments that he describes in his latest posts! John - fingers crossed - Onwards and Upwards!

Now I have a bit of plumbing to do, before I go and tend the crops!

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A brief post this morning, really to draw your attention to a new blog - Elspeth’s Blog, which you can access from the links under the blog roll. I won’t say to much here as Elspeth’s blog will speak for itself, but many of you will know that Elspeth has commented on my blog and been a supporter during my cancer journey. She is a fellow volunteer for Leukaemia Care. Please visit her blog and give her the support and encoragement that she will need. Onwards and upwards Elspeth!

On a completely unrelated note, the CD trick seems to be working and the blackcurrants have so far survived - so thanks to AOL, Freeserve etc that used to send out those free CD’s ad nauseam - and what a good job I didn’t throw them all away! (I should also mention - thanks Mum - that you hang them up from string - not try to play them! - although having listened to some of youngest daughter’s music…)

Also on the horticultural front, the lemon tree (bush?) now has some embryonic lemons on it, and looks poised for another growth spurt! I must go and water the cucumbers and tomatoes which are also starting to bear fruit!

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Seems a while since Iast posted, although I see Thursday’s post generated a relatively large number of comments!

It was a busy weekend - we went down to Cornwall for a family wedding (on Felicity’s side of the family). The wedding itself was held in the tiny village of St Winnow, near Lostwithiel, and by coincidence very near my Uncle, ho lives in the next major village down at Lerryn.

The weather on the Friday for the drive down and the Saturday for the wedding was excellent - really hot, and the reception and wedding breakfast were in a marquee with views down over the upper reaches of the River Fowey. We had a good day, and drove back on Sunday to get back in the early evening.

I was going to post something yesterday, but by the time the photographs had been sorted, processed and posted on the family web site, and the washing and ironing done… well you know how it is! However the weekend confirmed that although my taste for champagne has returned, it was a bit of a shock to find myself out of breath after only 5 minutes on the bouncy castle…

I have suffered a little bit with the skin - my own fault as I didn’t take all the creams etc (so many decisions, do you put the steroids on before the moisturiser and the sun block, or should the sun block go on first…) but I did keep out of the sun as much as possible and when I couldn’t avoid it I used plenty of factor 25. Things have improved since I got back with loads of the Diprobase and Dermovate!

Changing the subject, I have just discovered a load of old AOL CD’s, so I must go and string them up over the beans and the soft fruit. The birds may have had all the cherries off the cherry tree, but they won’t get (any more of) the blackcurrants!

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Twenty-one today! (21 weeks since the transplant that is…) I can’t quite believe it - it seems such a long time ago!

My skin is still itchy - and bizarrely my forearms are really red and blotchy - not all the time, but occasionally - it looks like exzema, but I think it is caused by pressure when I lean on things such as the laptop when I lean round it to get at the mouse for the linux computer that hosts this blog - too much information - but I really must sort my desktop out! (The mouse is behind the laptop - the screen on the left is for the linux computer hosting this.) However to return to the topic, other than the itches and blotches, I am feeling pretty good!

The weather is hot again here, after a rather cold and miserable day yesterday - which meant we had to abandon a BBQ for Kt’s birthday. However we had dinner indoors with a little celebration for her.

Right - off to view the garden and chase the rabbits off the runner beans!

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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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