Peter's Hospital Diary

I mentioned recently that I had another check-up, this time at the eye clinic at St Thomas’s. This happened on Monday, although I almost missed it because I was convinced that it was scheduled for Wednesday. As it happened, I was planning to go into Portsmouth by train, so when I got the reminder, (15 minutes before the start of the clinic!) it was ‘just’ a matter of getting the train in the opposite direction, and letting the clinic know I would be 90 minutes late!”

Anyway, not a problem, and I duly arrived and went more or less straight in to see the consultant. The result was that I still have some damage to my cornea, caused by the dry eyes, and so I have to continue with the eye drops, but more serious is that the cataracts that were noticed last time are getting more noticeable, so at some point in the not so distant future, I will need to have my eye lenses replaced. At least that will cure the short sightedness!

There isn’t a pressing need at the moment, but I suspect it will have to be done sooner rather than later.

Other than that, all seems OK. I haven’t had my blood test results from King’s, but on the basis that no news is good news, and if there was anything untoward, they would have called, I am not unduly concerned.

The deadline for my dissertation draws closer, so this is where most of my effort is directed, I shall be glad to get it done and handed in!

So on that note, very much onwards and upwards!

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I had almost forgotten the original purpose of the blog, with all the recent activity, but this month sees two important anniversaries. The first is six years since my bone marrow transplant (BMT) and the second is the fifth anniversary since my relapse and the long shot of the donor lymphocyte infusion that has kept me in remission. The post I made at the time is , together with other posts around that time.

Back to the present. The are certain periods of time when remissions seem to statistically occur, and one of those is at five years; so it was with some trepidation that I set off for my check-up. Trepidation not only because of the five year milestone, but also becvause it was my first visit to the new combined transplant unit at King’s, which has combined the transplant units of Guy’s and St Thomas’s (GSST) into one bigger unit.

I had appeared on the patient consultative committee prior to the amalgation, and one of my concerns was that Denmark Hill is not as easy to get to (for me) as London Bridge. This proved to be true, with an additional change (at London Bridge) and an extra 30 minutes or so travelling time. However, the hospital itself was easy to find.

I have a new, somewhat thinner file than before, with the documents from my old file scanned into King’s. No clever IT stuff allowing them to be transferred electronically, and neither were the all the historical clinical results on the GSST system available on the King’s system. Joined up? I think not!

The first impression of the unit was one of chaos! The outpatient clinic at Guy’s was in a quiet room, away from the day unit treatment centre. At King’s, the two are together. As a ‘new’ patient, blood tests hadn’t been ordered, so I was seen before bloods were taken, so I don’t have the results yet. However the physical examination showed no untoward lumps or bumps.

i’m sure the routine at King’s will sort itself out in time, but I was delighted to see a familiar face in the form of Viki, who was the nurse specialist at GSST when I was being treated. The last time I saw her was five years ago when, on her last day at work, she came and sat with me in the PET centre while I was waiting for the scan that would see how serious my relapse was (and showed that I was in remission from the chemo, and gave the green light for the lymphocyte transfusion – see the the related posts to the link above).

We had a brief chat when I arrived, and we were planning to have a longer one later, but she was with a patient, and although I waited for a while, it was clear she was going to be some time, so I had to leave to get the train home.

The journey back was a bit fraught, I missed the train to London Bridge by a few minutes, and that meant I missed the train home. Fortunately they run more frequently in the evening, but it still took over two hours to get back. On the plus side, it was lovely to walk the 15 minutes from the station to my home!

So, pending the blood test results, I am pleased that at this important milestone all appears well!

One of the wonders of the internet is the global coverage, and I must say hello to ‘Honoury Auntie’ Eileen in New Zealand who I know follows the blog (not that there has been much to follow lately… sorry). However I did send you an e mail late last year, but it seems it got lost in cyberspace! However it is lovely to know that you are following the blog.

I am also grateful to all my other followers, especially those who post comments (first comments are moderated until I read them, they then appear automatically) they are very much appreciated!

So, a good day, and one justifying “Onwards and Upwards”

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Happy New Year to all my reader(s!)

It has been over a month since I last posted, and a very busy month it has been too!

I left the last post frantically sorting out stuff and packing boxes, while trying to arrange the completion and move into my new home. At one point I was told through my solicitor that the seller was quite happy to wait until the new year. That position soon changed!

Matters were not helped by BT doing something to my ‘phone line six days before the move which removed my internet access, so all I had was e-mail through my mobile ‘phone. I also had problems booking the removal firm, but they came on Monday afternoon and took the bulk of my things, and completed the move out on Tuesday morning. I finally left the house at 2pm, absolutely exhausted, and I was very grateful to many friends who helped with the move out, and particularly to Mark who took me back to his home and fed me while I recovered.

My moving in date was set for the 21st, so I was grateful to David and Frances who put up with me for a week! It was a good week, time to catch up on sleep, do a bit of shopping and gather my strength for the move in.

My parents came down to help me move in. Unloading the removal lorry (and trailer!) took about 3 hours, and just as they left, leaving a mound of boxes, a delivery van with some domestic apliances (cooker, washing machine, dishwasher) turned up, so we had to find space through for them to be dropped off in the kitchen. Fortunately all the plumbing and electrical connections were in place, so it didn’t take long to get them working, after doing the essentials like putting beds back together!. I think we got to bed at 2am that morning!

I spent a couple more days sorting things out before going to my sister’s home for Christmas; a lovely time thank you!

I came back to continue sorting stuff out ready for visitors, and after exploring the attic, some of my things have gone up there – with more help lifting and shifting! Although there is still a garage full of stuff to be sorted, the house is liveable in, and feels very homely. The week gap proved expensive as it essentially meant two moves, from old house to store, and then from store to new house, (with storage costs) but that couldn’t really be helped under the circumstances.

There were some frustrations! The seller hadn’t told BT that they were moving, so the earliest they would provide a line was 28th December, which also meant that there would be no internet until then. This was intensley frustrating as I had a working line when I moved in, but then lost all service (except for a dial tone!!) until eventually a lovely lady at BT pulled out all the stops and managed to get the service working on the 23rd. I didn’t get broadband until the 28th though.

New year was quiet, and spent with a friend (who helped with lots of the sorting out!) and I am now settling in, meeting neighbours, getting the house straight, and looking to finish my dissertation!

So in the finest traditions of the blog… Onwards and Upwards!

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No, not with a hangover, just at the prospect that is all that is left to do! Moving out date is next week, but I am still busy sorting out the stuff accumulated over 20 years. Lots of emotion there too, having extended and modified the house into what we wanted, there are more emotional ties to what is really ‘just bricks and mortar’.

And apart from the physical aspects if moving, there is the administration side too, notifying changes of address being just one if them, as well as monitoring the progress of my prospective purchase.

However, there is a bit if me that is excited at a new start. I have fought cancer and I can overcome this setback in my life.

This will probably be the last post until after the move, I haven’t mentioned my recent trip to Istanbul (!)but once installed in my new home, I’ll add some photos and an update!

Onwards and upwards!

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Things move on! Just after writing my last post, I had pretty much decided that I was going to rent a house for six months, and even got as far as paying the (non-returnable) administration fee to a letting agency to take up a tenancy. However, I still wasn’t sold on the idea, and two days later I had an e-mail from an estate agency with details of two houses. I went to look at them, decided one was suitable, and after a bit of negotiation agreed a price.

It is possibly the smallest house I will have ever lived in, but it has three bedrooms, one I can use as a study, a garage and en-suite bathroom.. Sadly no conservatory, which I will miss. But the runninmg costs will be lower, and I will only need a very small loan to purchase it, and so it will do for two or three years while I re-assess things and decide what to do next.

Meanwhile the division of our possessions and the dismantling of what has been my home here, and more significantly, the last 21 years of my life, continues. A lot of stuff is being got rid of, but the task seems never ending, but slowly and surely progress is being made, and with it the emotional detachment from this house.

Time scales are fairly tight, but I hope to be in before Christmas!

So, on a new path, Onwards and Upwards!

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It has been a long time since I last posted on here, and I suppose now is as good a time to explain as any.

It is a fact that couples that have been through some trauma are statistically more likely to separate after the event. The trauma either pulls people together, or exposes weaknesses in a relationship.

Sadly the latter seems to be the case for us. This all started coming to a head nearly two years ago, when Felicity said that she thought that divorce might be better for us. During the following months I tried to find an alternative way forward, but in October 2010 it became clear that there wasn’t one. We have stayed cohabiting in our house since then, but it was put up for sale in June, and a buyer has been found, and we are moving out in December. The divorce and all the paraphernalia still isn’t sorted, but I will probably move into rented accommodation for a few months to get my breath back and gain some sort of perspective on my new life, before looking for somewhere more permanent to live.

I am incredibly indebted to my parents and the few close friends who knew about this for their support and encouragement over what has been a difficult time. I will say that Felicity and I are still on amicable terms, and I hope that will remain the case.

Healthwise, there is little to report. I have been worried about the the inevitable raised stress levels on my health, but generally all seems to be OK. This January will be the sixth anniversary of the transplant, and five years since the donor lymphocyte infusion, and the scare and side effects that went with that.

The GvHd seems to be controlled, there are still one or two lingering side effects, but they are not serious, and seem to be stable, so that is some good news.

I don’t know what I will do with the blog – not because I don’t want to continue with it, but because internet access for the server might be a bit limited for a while. I will try and keep the server running somehow though! Perhaps I ought to change the tag line from “Getting my life back” to “Forging a New Life”!

I’m sorry this isn’t a very cheerful post, but sadly these things happen. Again I need to concentrate on the future, so as always “Onwards and Upwards”!

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Yesterday saw me going up to Guy’s for my four monthly check-up at the late effects clinic for transplant patients. I was delighted to see Mark, who had his transplant at the same time as me (and looking very tanned!), Ian, another patient I have seen over the years, ans well as meeting one person who had her transplant in 1996, and at the other end of the spectrum, someone who has an indolent leukaemia who might have a transplant sometime in the next 5 years. Good luck everyone!

I saw Dr Raj, who remarked that I was looking well, but noticed that I was overdue for a lung function test (and had missed an appointment in August!) Now, I knew that I had rescheduled that for last May, to coincide with the last check-up, but the results weren’t ‘on the system’. So after the clinic, I did a quick trip to the lung function clinic, where I discovered they had got the results, so a second test wasn’t required.

And why the farewell? Well, the donor transplant clinics are all being centralised at King’s College Hospital at Denmark Hill, where a larger unit being created, so my next appointment will be there. The staff will be the same, but it will be new surroundings. But my next appointment will be in the New Year. However I will still have some clinics at Guy’s associated with the GvHd which still rumbles on in the background.

Other than that, I have been doing a bit more video production with fellow blogmaster, Mark, and working on my dissertation for my Master’s degree. It is challenging but enjoyable. We have presentations to give next week, so this weekend will be spent preparing for that.

So, generally, things go pretty much “Onwards and Upwards”

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Time has flown by, at the end of August already. Nothing much to report on the health front, all seems to be ticking along OK, with my next haematology check up in September. Much of my time has been taken up with my MSc dissertation, and helping out fellow blogmaster Mark with his new venture ttfntv. Go and have a look! I have also been playing with twitter, so I may end up having a twitter account linking to this blog. Maybe more next time, but the idea is to be able to press a button to tweet the content or to follow it. Still working twitter out!

I went diving again a few weeks ago – a much better experience and I think I have got my weighting about right. Still one or two kit problems (leak round the neck seal of my dry suit) but they are easily remedied.

So still busy and very much onwards and upwards!

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Yes, still here, but a lot going on at the moment! However I had one of my infrequent check ups last week, at the eye department at St Thomas’s. All seem to be OK, and there seems to have been an improvement in the dryness of my eyes, although they have not recovered sufficiently to let me resume wearing contact lenses. Slightly worrying is evidence of a small cataract on one eye, but the opinion is that it was caused by the past use of topical steroids, and therefore not likely to progress. That said, the radiotherapy and chemotherapy I have had in the past does increase the likelihood of developing cataracts in future, and is something to be aware of.

That apart, I have done a little more diving, including some practice dives at an inland site. Not the best of dives as I think I over-estimated my capabilities and ended up doing a faster than normal ascent, fortunately without coming to any harm, but I am planning to go back next week to do some more training to regain my skills.

Not much else to report at the moment. My dissertation is taking up quite a lot of time, as is job searching, but I do intend to continue blogging!

On the subject of blogs, it was great to hear from John’s Mum. John, you may remember, was another cancer patient blogger, and he was inspirational to me. He also suffered from GvHd which ultimately contributed to his death three years ago, and it was his experiences that swayed my decision to undergo ECP. Not forgotten John!

The last few weeks have also seen the passage of a year since my friend Jane died after a long and courageous fight against bowel and secondary liver cancer, and Simon from lung and secondary brain cancer. All missed but not forgotten, and remain an important part of my life.

Onwards and upwards!

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I mentioned in the last blog that I had an appointment with the dermatologists to see how I am getting on without the regular ECP. I suppose really it was a progress report, and as my mobility is much better (and hasn’t got worse) and skin is fine, the overall opinion is that I am doing well, so no more ECP and I have been discharged from the clinic!

I did take a short walk up to the ECP unit to say “Thank you and Good-bye” to the staff there, Alison the receptionist, and Suky and Belma, two of the staff nurses. They were both pleased to see me, and delighted to hear the news.

So another fairly significant step forwards – long may it continue “Onwards and Upwards”!

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