Peter’s Hospital Diary

I’m sorry I haven’t posted for a while. There was a milestone on Thursday, which was t+51, but also the anniversay of my admission to Guy’s for the procedure. I suppose If I had known what 12 months later would be like, I would have been disappointed, but hey-ho – I have survived another year!

So to this week – I went into work for the first three days of the week, but as the week progressed, my mouth became very sore (imagine eating stinging nettles!) and I took Thursday and Friday off – and spent most of the days in bed. (I am in bed now good old trusty laptop!)

One of the problems with the sore mouth is that it makes eating almost impossible. I do have the high calorie milk shake drinks, so I am getting some nourishment.

I am off to Guy’s again on Monday, blood checks and an echocardiogram. With a bit of luck I might get some oxygen too! I hope the GCSF will start having an effect – certainly once the neutrophils start increasing, the mucositis goes quite quickly/

So – through gritted teeth – onwards and upwards!!

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And with the holiday well and truly over, it was back to work yesterday! However not without its trials and tribulations!

I had a good weekend, appetite back, feeding up a bit (helped no doubt by the steroids that are part of the treatment) but yesterday evening the other side effects of the chemo started kicking in – the tiredness, sore mouth and throat etc, and my sense of taste has taken the expected nose dive. I did go into work again today, but not for too long – enough to read e mails and to prepare for a meeting tomorrow, then it was back home to sleep for about 3 hours!

However, I have started the GCSF injections – earlier than last time – so I hope that the neutropenia nadir will be less deep and shorter lived. I did have a call from Liz at Guy’s yesterday, saying that the echocardiogram has been moved from this Thursday to next Monday, which is when I am due to have the next set of blood tests, so I don’t have to go up to London this week!

Anyway, I know what to expect from the first cycle of chemo, so I guess I shall just have to grin and bear it!

Onwards and upwards!

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It was an early start to get up to the Day Unit for just after 9am, for what promised (and turned out to be) a long day!

I was feeling a bit tired when I got there – to the extent that it was remarked on, and the observations showed that my blood pressure was low, and my oxygen saturation was also a bit low – next thing I was attached to an oxygen cylinder! I must say oxygen does act as a quick pick-you-up – I ought to get a bottle for home! (As an aside, I am a qualified oxygen administrator – but only for diving related conditions)

I then saw Natasha (haematology registrar) who taught me a new medical term – that I was looking “slightly grottier” than last time she saw me – on Monday! (In turn, I am delighted to report that Natasha looked as delightful as ever :)) She also had a listen to my chest, and decided that a chest X-ray was required just to check that there was no infection present, so a porter was summoned to take me down in a wheel chair, and a smaller portable O2 cylinder tracked down, and off we trundled for the X-ray.

All this shenanigan took most of the morning, then it was a quick check with Rob (Specialist Transplant Registrar) to discuss the options. Apart from having a prescription for more antibiotics just in case there is a low level infection – although the chest X-ray was clear) we went ahead with the chemo. There has a been a response, although Rob could still feel a few nodes, so I might yet have a third cycle, although the final decision will rest on the response from this next cycle.

Once we started the chemo, it all went well. No nasties from the Rituximab, and the rest of the chemo (Vincristine, Doxyrubicin and cyclophosphamide) were all administered by Liz – one of the haematology specialist support nurses. I also had a litre of saline to make sure I was hydrated and to bring my blood pressure up.

You may remember that Liz joined the team last year, just before my transplant, and one of her projects has been to work work with other Liz (Ward Manager) to get Samaritan Ward refurbished. That is at last going ahead, starting in May, and will consist of 16 positive pressure, en-suite isolation rooms, and 3 negative pressure en-suite isolation rooms. (The negative pressure rooms are for patients with injections – the negative pressure ensures that the bugs aren’t pumped out into the atmosphere) There will also be a dedicated minor treatment area. The whole set up looks very exciting and will take about 6 months. There is an overall reduction in the number of beds, but coinciding with that, and to complement the trend towards day patient care, the day unit is likely to be expanded too!

I final escaped from the day unit at just after 4 (and thanks to Emma, who looked after me in the morning – during my ‘Grotty’ phase! – and to Louise, who made numerous cups of tea!) then it was a quick call to the pharmacy to pick up another small medicine cabinet of drugs to go with the ones to support the chemo, then home for 6:30, with, if not exactly a spring in my step, certainly feeling better than I had been that morning!

So get to work you toxic little chemicals – onwards and upwards!

(Oh yes – 12th night tomorrow – new theme on the way!)

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A short post today, just to say that I heard from Rob (SPR) this morning, and we are going ahead with the chemo tomorrow. The plan is to get it all done in one day, although if I get a reaction to the Rituximab like last time, it may well be a long day! So I suppose I had better make the most of my returning taste buds (bacon was good this morning – as was Christmas cake!) before the chemo blats them again!

Onwards and Upwards!

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And the first visit to Guy’s of the New Year – and I’m sure it won’t be the last!

However it was really good news on the blood counts, the GCSF has done its stuff and the neutrophils were up, as were the platelets. I am still anaemic at 9.5Hb, but I am certainly feeling stronger than I was last Thursday.

So with that in mind, it looks as of I am all set for the next cycle of chemo to start it all off again! I was expecting to get the chemo this Thursday, but just after I arrived home, I had a ‘phonecall from Debbie on the Day Unit saying that it should be a 21 day cycle, which means I should start on Monday. However Dr Kazmi did mention that this week would be good (and I echo that – hit it hard and fast – don’t give the little b******s get a chance to regroup) but they are going to check and give me a call later today or tomorrow! I suppose a couple of days doesn’t make that much difference, and if I am a bit stronger…

And finally, just as I thought I might escape that particular side effect, I noticed my hair starting to fall out this morning! Oh well, woolly hat to the rescue!

Onwards and Upwards!

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And I’m delighted to say that for me, the New Year is starting well! What a difference three days and some GCSF injections make! I guess that my neutrophil count is back up as the sores in my mouth have all but disappeared, my appetite is returning, and while my energy levels aren’t exactly high (I’m not planning a 3 mile, or even 300 yard run), they are improving, so I feel a whole lot better than I did on Friday! I’m sleeping better too, and my mouth isn’t as dry.

We had a quiet New Year – we were planning on having our friends round, but it would probably have been a bit much for me, so we cancelled that and had a quiet evening in. However thanks to Mark and Mike for popping round yesterday with a bottle of bubbly – we did it justice!

Off to Guy’s tomorrow, and if the counts are up, then I should be ready for the next cycle of chemo. I should start GCSF injections sooner, so the neutrophil nadir shouldn’t be as deep or as prolonged, and with a bit of luck and a following wind, I shouldn’t feel so bad! Now to start eating and putting on a few pounds in preparation!

Onwards and Upwards!

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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

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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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