Peter’s Hospital Diary

And an eventful one too! However I ought to tell you about the main event of Christmas afternoon, the ceremonial harvesting of the first lemon from the lemon tree! We have been looking at this particular lemon, which formed soon after we bought the plant last February, as a favourite for the Christmas G+T, and so it was carefully selected and plucked! And as you can see, it was a beauty. Now the observant among you might ask why it is GREEN? Well the answer is that this particular tree is a hybrid cross between a lemon and a lime, and the fruit is supposed to have an excelent flavour! Not wrong! The peel definitely has a lime tang to it, but the flesh is a very juicy and tangy lemon flavour! Well worth waiting for! There are about another dozen in various stages of development, with another 10 or so embryonic lemons from the recent flowering. Next harvest may be Easter! For the horticulturely minded, the variety is “La Valette” and it came from Crocus although the one they have listed now looks slightly different!

Sadly, as far as health went, Cristmas Day was about as good as it got! You saw me enjoying the one glass of alcohol that I had over the week, as my mouth became sorer, and I seemed to become steadily weaker. I did manage Christmas lunch, but the bit I really enjoy, the cold meats and pickles on boxing day, were completely lost to me, and my appetite just drained away.

Thursday was expected to be my neutropenic nadir, but I felt very weak that morning, to the extent that I don’t think I would have made it if Felicity hadn’t come with me. I saw the boss himself, Dr Kazmi, and I was fully expecting to get a blood transfusion, and possibly some platelets, as I had been getting some slight nose bleeds. However I was surprised to find that my Hb was just over 9 (It felt as if should be 7!) and platelets were OK too. (50, as opposed to 150-400) but still OK) However, my neutrophil count was way down, to the stage that if I had been in hospital, I would probably have been in isolation! And this accounts for the general feeling of lethargy and the mouth sores. So it was down to the pharmacy to get some GCSF injections (my poor shiny new bone marrow must be wondering what sort of host it has come to) and then home. However concern was noted at my ongoing weight loss, and the dreaded naso-gastric tube was mentioned again, so I have started the hi-calorie milk shake mix, which actually tastes better than it sounds!

I don’t have to go back to Guys until next year - well, Tuesday to be precise - where my blood will be checked again, and if I am recovering well, I should get another dose of chemo later that week! However I expect the GCSF will do its stuff, and my neutrophils should bounce back, and the mouth ulcers clear up. At least then eating will be a bit more of a pleasure! While I was up at the clinic, I saw Rob (SPR) and the Lovely Linny, who seemed to have had a good Christmas. I think they deserve it!

And finally, some good news! Those who remember the comments I made about earliest sunset being on 13 December, will need no reminder that today and tomorrow are the latest sunrise, and as from the weekend, the mornings start getting lighter, although with the weather forecast as it is, don’t expect much just yet!

Onwards and Upwards!

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And what more need I say than

A HAPPY AND PEACEFUL CHRISTMAS TO YOU ALL!

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A quick pre-Christmas update and some results of food research, thanks to Mark (fellow blogmaster) and Sue who hosted a pre-Christmas Dinner Party last night! I am delighted to report that Smoked Salmon and Prawns, washed down with Champagne, tasted absolutely marvellous! Sadly more aromatic hot foods and wine were less good for the taste buds, although vegetables are fine, so I will be enjoying my sprouts tomorrow!

On the pudding front, Caroline’s treacle sponge was heavenly. Cheese was mixed, again aromatic soft cheeses were less successful, especially Camembert, but Stilton was surprisingly good, as was Brie! However, good though the food was, it was the company that made it, so thank you Mark & Sue, a great evening!

I seem to be taking a leaf out of John’s blog with this emphasis on food, but I do normally enjoy my food, so the assault on my taste and smell is particularly galling. However I’m sure it won’t stop me enjoying the day.

I will post tomorrow, but I know it is a busy family day, so may I take this opportunity of thanking you all for your support in the last year, and can I wish you all…

A Very Happy and Peaceful Christmas

Onwards and upwards!

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Two days after the chemo and no obvious ill effects, other than the fact that my slowly recovering taste buds and sense of smell seem to have taken another hit! However I did have some cheese at lunch time (I used to love cheese!) and I could taste it for the first time since the radiotherapy, so maybe taste buds are battling through! I have been going to work this week, although not for very long - the run up to Christmas is always quiet, and although there have been some social events, common sense has prevailed and I have decided not to push the boundaries too far!

It has been cold and frosty too, and like the rest of the country we have had some freezing fog, a good excuse to rack up the heating, power on the underfloor heating in the conservatory (so gald I did that - just don’t think about the meter!) and watch the world go by!

And I can’t let the fact that it is 11 months since the transplant go without comment! I’m not sure I would have expected to be having chemo again - so annoying after the summer when we must have been close to beating it, but we have a plan - just need it to come to fruition!

No news on the baby front - things seem to have quietened down and Vicki was released from hospital for bed rest at home - every day that goes by is a bonus for the baby’s development, so fingers crossed there too.

I have changed the theme of the blog again, while the other one was good, it had some incompatabilities with some versions of Internet Explorer - this one seems a bit better, although there may be a little more tweaking to do!

So on a positive note, we will continue onwards and upwards!

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And it has been a busy couple of days too!

I went up to the day unit at Guy’s yesterday, as planned (lovely to see Orla and her team in the day unit again) and discussed the cunning plan with Rob (SPR). As all the best plans remain flexible, we decided to test this, and so I was admitted to Samaritan ward that afternoon to start the chemo regime with the Rituximab. However I had a treat first as Kim, the Dimbleby Cancer Care Aromatherapist, was on the ward - my feet felt wonderful!

I seem to be well known on the ward, and the first person I saw was Sister Nicky who is the (and I’m sorry if I get this title wrong!) the Deputy Ward Sister, working with another old friend, Liz, who is the Ward Sister. I have to say that Nicky is a bundle of super-efficient energy - she is everywhere - always in the right place at the right time, and never stops! Watching the banter with Liz, you can tell they are a great team - and you can tell just by being on the ward that it buzzes! They enforce high standards from everyone, and it is a joy to watch them at work! (And woe betide a Junior House Officer who steps out of line!) All the other ‘old hands’ from my transplant were there, including Debbie, Tom, Mick, Adam and Paul and it was good to see them too! And a special thank you to Rachel, the dietician, who stopped by to discuss my weight loss! (And had some practical help that didn’t involve a naso-gastric tube!)

Rituximab administration can cause a mild allergic reaction when it is first given, and although I have had it before, and it was well tolerated, this is the first time I have had it with the new immune system, so the team wanted to be cautious - and just as well because half way through the administration I started to feel a little ‘woozy’ and we had to slow the infusion down again.

The plan was to try and get the rest of the chemo in that evening, before I was given ‘night leave’ but we ran out of time, so I got home at about 10pm last night, and then set off again this morning for the rest of the drugs.

This went very smoothly, administered by Myra, and it was all all done and dusted by 11am. then it was time to wish Rob and Melissa (you remember Melissa - The delightful American SHO working over here) Happy Christmas and depart. There was just time to have a chat with Viki, the haematology Specialist Nurse before I left - which always perks me up, then it was off to get the train home! My next visit will be on the 28th, which is when I should be at my neutropenic nadir, and after that, probably one more cycle of R-CHOP before another PET scan, and (we hope) a re-start of the donor lymphocytes. Rob gave me a summary letter to take to a local hospital should I feel unwell during the Christmas period. It makes stark reading when the last seven years are reduced to the bare clinical facts, but it did make me realise just what a lot of treatment I have had!

The weekend was busy in other ways too. You may recall that Vicki (eldest daughter) is expecting a baby in about 6 weeks. Well, on Sunday she felt some contractions, and was taken to hospital for observation. She has been given some drugs to stop them, as the baby would be a little premature, but she was kept in for a couple of days. This rather put paid to a quiet weekend though and threw plans out of the window - which brings me to my next topic (which doesn’t affect all of you) - Christmas cards!

Those of you for whom I have an up-to-date address on the Christmas card list should have had your cards posted by now - because this was Christmas card week-end. (Yes, I know, it was a bit late, but there has been a lot going on!) Most of them have been posted, but some have not, so I have posted the 2006 Christmas letter under pages. I will try and E mail those of you who would have got a card some time this week. Sorry!

And on a final note, we did get a Christmas tree for the conservatory - and here it is!

Onwards and Upwards!

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With all the news about my treatment plan yesterday, I rather forgot to mention any other bits of news! The main one was that middle daughter Katie has returned home from her first term at University, so we are back to having a near houseful again. Life will not be dull, although I see she has wasted no time in going back to her old job on a temporary basis to earn some sheckels for the next term. She will be home for a month and it is good to have her here (and her lodger, Indie)

We also started getting into the Christmas mood by putting up the tree and decorating it. We did think about putting it in the conservatory, but we found it was just a bit too big, so in a fit of Christmas spirit we will probaly get another, smaller tree to go in there. We did think about decorating the Lemon tree (might be a lemon ready for a Christmas G&T) but it (the tree) isn’t quite big enough!

Finally, just to carry on the botanical theme, the Vincristine chemo agent I will be given next week, is derived from the periwinkle (vinca) family of plants - but I don’t think I will be making my own!

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Well, I didn’t have to wait until next Thursday for the results, as yesterday afternoon (just before six, I was most impressed, having bunked off for the weekend about 3 hours earlier) I had a call from Rob, the SPR, to say that they had had the preliminary results through from the PET team.

You might think that this would be bad news, and you would be right - and wrong!

First the good news. There was no sign of the lymphoma in my neck where I had the radiotherapy, so it is definitely radio-sensitive, however the bad news is that the nodes in my chest and abdomen are larger, and really confirming what we suspected, that the disease is more aggressive and is advancing quicker than the Graft v Lymphoma effect can hit it. These are difficult areas to treat with radiotherapy as the risk of damage to other organs is much higher, especially as I have had total body irradiation in the past. There also appears to be some fluid on my lung and in my abdomen. As it happens I have had a chesty cough for a couple of weeks, which I had put down to a bug, but if the lymph system isn’t draining my lungs as efficiently as it might, then that would explain it - and also the breathlessness I have been suffering from.

However - we have a plan! It involves chemotherapy, and is intended to get the lymphoma back under control before we continue with the donor lymphocytes. I have had a fair bit of chemo in the past, but more aggressive lymphomas and leukaemias are more susceptible to chemo (because the cells are dividing quicker). The problem is that we know we have also bred in resistance to some drugs. Anyway, the regime I am having is called R-CHOP, Rituximab, Vincristine, Doxorubicin,Cyclophosphamide and Prednisolone. I have had some of these before (but I don’t think Vincristine or Doxorubicin although I may have had some of the same family) but not in this combination. The other bit of good news is that in my extensive drug collection, I did find some prednisolone, so I was able to start that this morning.

So on Monday I am off to Guy’s to have blood and other tests, (mainly kidney function) and then all being well, I will have the rest of the regime all day Tuesday. It will be a long day! There is a risk of adverse side effects with Rituximab, although I have had it twice before without any problems, but then I do have a new immune system now. That will be given first. Then back home for Christmas, with, I hope, the lymphoma reeling a bit! It looks as if I will lose my hair - again! Oh well, it will grow back!

I don’t know if I will have more courses before we restart the DLI. I guess that depends on the result, but it will be a safe bet that I will be seeing my friends in the PET centre again! Talking of which, I will say that while the Oromorph only helped a little with pain control during the PET scan, I did have a remarkably good sleep that night!

Finally, and much to my surprise, I discovered that there is a link from a blog in “The New Statesman” to this blog (and John’s ‘Disabled Rants’). The link to The New Statesman page is here and also included in the sidebar. If you click on the link, I am in the blogroll. I shall watch watch my future web stats with interest!

O&U!

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As I reported yesterday, I rang St Thomas’s to see about my appointment - to discover that it had been scheduled for this afternoon! I had a long chat with Sally - one of the lovely radiologists on the PET unit - about the pain problem when I am lying down, and the thoughts were that I could have a strong pain killer, or if that didn’t work, I could have diazepam (Valium) which would also work, but leave me feeling woozy - but in either event, they recommended that I should be accompanied so they were free to use whatever method was appropriate.

So this morning, and feeling hungry (I was supposed to fast from 8am, but in practice it was from last night) we set off for London for the 2:15 appointment. Once again greeted like a long lost friend, and after chats with Margaret, the unit manager, I went into the prep room for the tracer injection and to discuss the pain relief. The option chosen was Oromorph - an oral morphine preparation, which was planned for about an hour before the scan. (The tracer needs to be given 90 minutes beforehand).

So time ticked by, and eventually I had 10mg of the Oromorph, but probably less than an hour beforehand, then into the scanner room to lie on the bench. The team were lovely and had arranged to reduce the scan times by concentrating on the bits of interest, but even so the scan was scheduled for 20 minutes. Alas, I had only been lying down for about 3 or 4 minutes when the deep, dull, throbbing ache started just below my left shoulder blade.

Again the team were wonderful, and came to talk to me to take my mind off it, put on some music, and gave me a countdown. They did offer to stop the scan for a break, but having started, it seemed a pity to stop the sequence, so with a bit of gritted teeth and some careful pressure relief, I got through the 20 minutes. My concern was that I might have wriggled too much and impaired the quality of the scan, but I was assured that technically it was good. I say technically, because there was no medical opinion given, although I did look at the scans and I thought I could see a couple of hotspots (not surprising) but then I am not an expert, so my interpretation isn’t worth much. All I could tell was that it didn’t look as if I was lighting up like a Christmas tree!

I did feel pretty weak on the way up - the result of the fasting, and my blood sugar was pretty low (4.7mmol/l - where the normal range is 4-8mmol/l) but I had a bite to eat on the way home and felt quite perky by the time we got back.

So a slightly out-of-the-ordinary scan, but the team were great (as usual) and put up with me being a wuss without complaint!

My next appointment is next Thursday when I should get the results - from a tutored and knowledgeable eye, so until then, Onwards and Upwards!

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And with that in mind, I thought I would bring a little festive decoration to the blog! I hope you like it.

There is some other good news too - yesterday was the earliest sunset of the year, and from today, the evenings start getting lighter! Yes it is true! Although the shortest day is December 22nd, the combination of the elliptical orbit of the earth round the sun and the 23 1/2 degree tilt of the earth’s plane of rotation with the orbital plane mean that earliest sunset and latest sunrise do not coincide on the shortest day. However the bad news is that although the evenings start getting lighter, the mornings continue to get darker at a faster rate until around the shortest day. Sunrise contines to be later until the end of December when sunrise starts getting earlier again.

A similar effect occurs in June at the longest day, but because the earth is further from the sun, the effect is less pronounced and latest sunset/earliest sunrise are much closer to the longest day.

Education lesson over for the day! I am still waiting to hear when the PET scan will be, and I suspect I may need sedation or a strong pain killer so I can lie in the machine. I am still suffering from various aches and pains, and sleeping sitting upright doesn’t make for a good night’s sleep. I think I have caught a bit of a cold too - there have been a couple of nasty bugs going round, but I hope I can shake that off by Christmas.

No visible signs of the GvHd yet, but it is still a bit early, but there are some more donor lymphocytes waiting, if required!

So onwards and upwards!

(Just heard - the PET scan is tomorrow, and we a looking at ways of overcoming the pain problem)

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This was the view that greeted me this morning, although during the day the weather has got progressively wetter! In fact it was equally frosty yesterday so we decided to have the first open fire (in the fireplace!) of the season.

My parents were visiting this weekend, so I had some assisitance with the remainder of the ‘little plumbing job’ that I started last weekend, the final bit of installation of the power shower in the main bathroom. All went well. and it is now fitted and working. There is another little modification I need to do later (replace one of the push fit joints with a solder fitting) but that isn’t urgent.

However the highlight of the weekend was the Christmas Dance at work, when we took Katie and Rachael along for the first time - and stunning they looked too. And just so you can all share the moment, here is a photo! We all had an excellent evening!

Not much to report health-wise. I still get sundry aches and pains - mainly when I am lying down, which makes sleeping tricky - in fact I have been sleeping sitting up in bed. I’m not sure how I will get on with the PET scan, because that entails lying down - and still - for about 30 minutes, and the aches start getting pretty painful after about 5 minutes - still, we’ll cross that bridge when we come to it! I should get notification of the appointment early this week, as the intention is to do it soon.

So that is it so far - onwards and upwards!

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