Peter’s Hospital Diary

I was looking back at the archives for last year and again this week was pretty significant! It was this week a year ago that the good news arrived following the PET scan, and the decision was made to go with another Donor Lymphocyte Infusion, which took place on the February 1st. And here I am, a year on, still alive and kicking! As Dr Raj said at the last check-up “A good example of successful DLI” A masterful understatement (as far as I am concerned) but one to which I will raise a glass!

This is probably the longest period I have been in remission for about 5 years, and there is, inevitably, that feeling of always ‘looking over your shoulder’, but I have to say that I am feeling well, and although eating some foods still causes problems, that is easing off and I have managed a couple of (very) mild curries in that last couple of days. However I think it will be a while before I can manage ‘Tex Mex’ or fajitas! I am also still underweight, and not as physically strong as I was, but I have just renewed my dive club subscription for another year, so I must work on the fitness to see if I can get fit enough to pass my diving medical.

I also heard from Simon (BT) yesterday, via a comment on yesterday’s post. You can read it for yourself here but basically he is well, with his new PICC line. However his blood counts are low, and he was going for a blood transfusion today. Good luck Simon! As for your questions about the Mac, I don’t have a lot of Mac experience, but I have posted a couple of links in the comments that may be useful.

I see that I have almost returned to daily blogging this week - maybe ‘a post a day keeps the doctor away’!

So on that note - Onwards and Upwards!

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Just a brief post to congratulate Rachael, who passed her driving test on the first attempt this morning!

O&U!

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If any of you tried to look at the blog last night, you will have received an error message as the server was down for about 4 hours from 7pm.. In fact we had a power cut, just as we were about to go out for the evening. We do get brief interruptions to our electricity supply, usually caused by a sensitive main circuit breaker in the house, and we initiallythought that was the case yesterday - by the time we realised it was a local outage, the batteries on the Uninterruptable Power Supplies (UPS) that feed the server were running low and I had no option but to shut it down before firing up the generator - yes, the one I bought last year for just this eventuality!

Anyway, it started easily and operated the lights, central heating, as I wished, but because we were going out and leaving Rachael on her own, I didn’t want to risk loading it up more than I needed to, just in case something caused the generator breaker to trip, so the webserver remained off until we arrived home 3 hours later, when mains power was again available.

But it all performed exactly as I had planned, and as it had on test, so I was very pleased!

Incidentally, I notice from the statistics that I have made 100 posts in the “Getting my Life Back” category!

Onwards and upwards!

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Firstly, a moment we have been waiting for - Olivia has now gained the confidence to take a few steps on her own! She took the first ones last week, but we went round this week and I got this photograph. She is best when she doesn’t realise what she is doing - when she does, she usually sits down with a bump - and when she wants to get somewhere fast (or somewhere she shouldn’t, its back to all fours, but I don’t expect that will last long!)

Onto other news - I know that many of you who read this also follow John’s Blog and will have noticed that the posts have been fairly sparse lately. Margaret, John’s Mum, posted a comment on my Wednesday update post saying that he is still in hospital, where he has been since New Year, and not very well. So please cross all digits for John, and if you would like to post any comments on his blog, Margaret says that she will print them off for him. Keep fighting John.

I must close here ready to do Taxi duty for Rachael who is going to a party in Grately Village Hall this evening - a venue that will be familiar to one reader!

Onwards and Upwards!

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Not about me particularly - but more for those that know Simon (maybe I ought to start ‘Simon’s Blog’…)

Two weeks ago I mentioned that he was having a problem common to chemo patients - shrinking veins - and was going to have a central line inserted. Well that was done yesterday (he tells me) and we spoke this morning while he was having his next cycle of chemo. He sounded in good spirits and said the line insertiion procedure was uneventful (apart from the anaethetist who was a bit of a comedian!). He also said that it has made his chemo administration a lot easier. And of course it will give him bragging rights down at the gym in the future with a few more scars to display!!

Onwards and Upwards!

Incidentally, for some reason I never included a link about Central lines - now remedied

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It has been a while since I posted something with the ‘More Treatment’ tag, but today saw me back at St Thomas’s at the St John’s Dermatology clinic (originally founded in 1868 - and the only postgraduate dermatology teaching facility in the country) to look at the remaining GvHd. Now I must say that in the grand scale of things, my GvHd is pretty mild - and certainly nowhere near as bad as fellow blogger John but although the majority of my skin is OK, the mucous membranes are affected, and it does flare up a bit from time to time, hence the referral.

Anyway, after a brief wait I saw the consultant, recounted my history and had an examination. The result is that there are two treatment options. The first is an ointment, Tacrolymus, which I had been prescribed before (for my mouth - but never used) which I can apply to the affected areas. If that doesn’t work, there is another, somewhat more invasive procedure, called photo pheresis. In this procedure, a canula is inserted into my vein and my blood ‘on-line’ centrifuged (a bit like the stem cell collection) and the white cells separated out. They are then treated with a photo-activated drug, then exposed to UV radiation to activate the drug, and then returned to my body. This occurs twice in two successive days, either monthly or fortnightly for up to 12 months! Hmmm! My concern is that while the GvHd is present, it shows that my immune system is fighting, but if you damp it down, does that increase the risk of the lymphoma returning? The answer was “no - there no evidence from studies to show that patients having this treatment are more likely to relapse than those that don’t”. Anyway, I don’t need to make a decision yet, and the ointment might do the trick.

As you might have guessed, I have done a little research since I came home and this link gives a little more information about GvHd and is part of a site that describes photopheresis. This link describes the photophoresis procedure.

After seeing the unit, and the obligatory wait at the hospital pharmacy, I am pleased to say that my train journey home was a lot less eventful than the last time!

Onwards and Upwards!

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Hard to believe, but today is the second most important anniversary of the week - it is 104 weeks since I had the transplant (the actual annual anniversary is on the 19th - but today it is a whole number of weeks) so it was fitting that I should have a check up today!

It all started routinely with the usual armful of blood, and a chat with one of Dr Kazmi’s team. However I did get a ticking off for not ringing in about the cold that I had over Christmas and told that if I develop another bad one, I should let them know (but not go into the clinic so I don’t spread it about!) It seems that they had quite an epidemic over the Christmas period! Anyway, it was decided that I should have a ‘Nasal Pharangeal Aspiration” - basically suck some gunge out of my nose to check for infection. If you recall the scene from “Harry Potter and the Philosopher’s Stone” where Harry sticks his wand up the nose of the Mountain Troll, you’ll get the general idea.

However that was delayed as the day unit was very busy so I went off to have my lung function test. Volumes were OK, gas transfer function still a bit down, so another test in two months! Then back to the Day Unit where Nicky (who was the Staff Nurse on Samaritan ward) carried out the procedure. No fellow transplant patients in the Clinic today (although lots of recently transplanted patients!)

The journey home was a pain. I just missed a direct train, but a helpful (or not-so-helpful) member of SouthWest Trains advised me to get an alternative train and change at Havant. Unfortunately he told me the wrong station and I should have changed at Fratton, so I missed the connection, had to go on to Portsmouth, where I received a load of grief from another member of staff about being ‘off route’ - just before the train I wanted was cancelled! At that point I had a sense of humour failure and (to their credit) SW Trains laid on a taxi to take me to my destination station where I could collect the car. A 90 minute journey took just over three hours. (And don’t get me started on the StageCoach Bus Adverts, while Stagecoach are cutting local services! - Stagecoach own SW Trains)

Anyway, the good news from the day is that my bloods counts are pretty much back to normal and I can stop one of the anti-biotics. Kidney function tests at the last visit showed creatinine levels were up slightly but they will see what today’s are like when they come back from the lab. Next check-up is in two months time - in March!

Onwards and Upwards!

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…who is one year old today, and has the most important anniversary of the week!

She had a Birthday Party at her tots group today, with a cake that Felicity made (a hedgehog cake - no, NOT take one fresh hedgehog… a hedgehog chocolate cake) and then this afternoon we had a small family celebration. I think the event passed Olivia by, as at Christmas, the wrapping paper was more attractive than the contents, but enough to say that she has a few outfits for the summer! There are a few more photos in the gallery, and I will put some more there when I get them from Vicki.

It has been another very wet and windy day down here - as I think it has been over most of the country. Very reminiscent of last year, although then I was at the back end of Southampton Hospital, looking out over the regional blood transfusion centre, and listening to the rain and wind lashing against the windows. Today’s weather was quite evocative!

I have also heard from Simon who is in good spirits and (I think!) heeding advice to take things easy in his week off from chemo!

Onwards & Upwards Simon!

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Not one perhaps to celebrate - except for the outcome, as it was a year ago today (but of course on Sunday) that I was an emergency admission to Southampton General for a week of “intensive maintenance”. (The full details are in the archive here.)

However, that was last year, and things are a lot better this time! Yesterday we were at a family gathering for a few birthdays (Felicity’s brother and niece), which apart from the dreadful weather which at one point we thought would close the Severn Bridge, was an enjoyable occasion! (Felicity’s brother and niece are at the far end of the table)

A few more things to celebrate this week, so watch this space!

O&U!

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It was two years ago this week (it was Saturday 7th January 2006) that I was admitted to Guy’s for the donor transplant! Hard to believe, but good to be still alive and kicking. That also means that it is the blog’s second anniversary too - the first post was made on Sunday the 8th of January - little did I think that it would still be running two years on! If you want to look at those early posts, they are in the archives which you can access from the sidebar. There are some more notable events next week too, but they can wait their turn!

I was delighted to get a call from Simon yesterday and we had a long chat about treatments etc. He is good spirits and halfway through the current cycle of chemo. However he is having a common problem faced by chemo patients - his veins have turned cowardly and are running away from the needles. He did text me today to say that he is having a central line put in to overcome the problem - another scar for the collection Simon!

We also discussed a book “The Enduring Melody” by Michael Mayne. There is a review here but is the autobiography of a patient with cancer of the jaw, decsribing his journey into ‘Cancer Country’. Not light reading, but another map for those of us that find ourselves there. Sadly for the author, his condition is terminal, but not all travellers into ‘Cancer Country’ stay there, although (as Simon and I discussed) once you have been there, life is never quite the same again.

But meanwhile, we continue Onwards and Upwards!

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