Peter's Hospital Diary

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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Just realised (to my shame) that I haven’t posted here for a while, perhaps indicative that health things are going well! And they seem to be. I have had a number of minor checks to do with the symptoms of GvHd and the consensus seems to be that I am reaching an equilibrium with the new immune system. I also had a lung function check last week, which showed that my lung performance is pretty much as it was seven years ago, There is a slight deterioration, but mostly explained by the fact that I am seven years older. So that means diving is definitely OK!

I also had a haematology check up (new consultant on the team, Dr MCann) which also went well. My bone marrow biopsy result showed no abnormalities, and the chimerism test showed that I am 99.7% donor – and the margin of error on the test is 0.5%! The opinion is that it is unlikely that the chimerism will slip back, and that possibility declines with the passage of time.

My next check-up is in four months, and it is possible that by then the transplant unit will have moved to King’s College Hospital where a new transplant centre is being established, amalgamating the existing Guy’s and King’s facilities. I did post about this last year, as I was invited to participate in a patient consultation panel. Overall, it will probably be a ‘good thing’. The transplant ward at Guy’s was pretty old and the building is in poor condition (and I think earmarked for demolition) so a new facility, creating a centre of expertise will be good, once the start-up pains are overcome. From a personal point of view, it is not quite so good as it is a bit further to travel!

My contract ended at the end of March, with little work in hand. However I have been out to Switzerland again. One of the highlights was a weekend at Loeche-les-Bains, visiting the thermal spa I went to at New Year. This time I stayed in a little village called Albinen, more details in another post. From there I did a little bit of walking up in the lower levels of the Alps (along well marked tracks climbing about 200 metres from a start point 1,400 metres ASL) including an interesting crossing on a suspension bridge over a deep gorge on the River Dala. I did this before the lung function test!

I did go the the thermal baths at Loeche, and was rewarded with snow, which fortunately didn’t stick!

Not much diving at the moment, although the seal on my drysuit has been changed, but I need to build up a bit more sheltered water experience before I start doing deeper ocean dives.

There are a few other things going on at the moment (one of the reasons I haven’t blogged for a while, but details of those will have to wait.

So in general, Onwards and Upwards.

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It has been a long gap since my last post, mainly because there has been a lot going on!

I started my contract in March but for two weeks I stayed in a holiday cottage not far from where I was working. It was set in lovely surroundings and I was fortunate enough to be there at the start of Spring with the emerging daffodils. It was lovely to be self contained rather than staying in a B&B.

Sadly the contract ended at the start of April, and while there is the possibility of more work later in the year, there is nothing much (apart from a little private client work) in the offing. However that has enabled me to start my MSc dissertation, which has slipped by a couple of months.

I have been doing a little plumbing too. The hot water cylinder started leaking a few weeks ago, not a lot, but enough to know that it wouldn’t get better on its own! The tank is quite tall, but small diameter to fit in a confined space, so I had to find one the same size. That was no problem… except that the insulation standards have improved, so while the tank dimensions and capacities are the same, the external dimensions are bigger. The various connectors are in different places too. However it was all done, apart from the replacement of a tiny valve on the hot water outlet fitting which draws water for the shower from a lower level. I was fitting it – when it slipped and fell to the bottom of the tank! So it all had to be drained, removed and refitted! Much quicker second time round! The pictures show the top of the tank before and after. The fitting at the top (removed in the first picture) is where the little valve fitted! Next job is to box it in again!

I also had a day out in the dive boat last week Note the words carefully! It was a day out to test the boat and equipment, rather than a spectacular sight seeing dive (yes, there are some in The Solent!) The boat performed well, and we kitted up, me in my newly serviced and refurbished dry suit. Into the water, and after 30 seconds my buddy commented that his suit was leaking, so out we came. Twenty minutes later, back in the water with another buddy. We descended to the bottom (only about four metres – it was a check dive) when I noticed a wet and soggy feeling, so up we went after three minutes. It seems that the neck seal is too large for my neck, so the suit will have to go back to have that changed! Very irritating! However, I was supposed to be on an expedition this week, (it was postponed) so I would have been even more annoyed if I had gone away with it! What was pleasing though was that my upper body strength was sufficient to allow me to get out of the water into the boat (it is a RIB) with little difficulty.

So the week was spent on dissertation, and corporation tax returns – deep joy!

Last weekend we had a visitor, Melinda, who I have known for a long time, but haven’t seem since my transplant five years ago. It was good to catch up on news and stuff.

And that leads me onto health, which seems OK! I have a dermatology check up on Tuesday, to see how I am getting on without ECP, and then towards the end of May I have a haematology check up, a lung function test, a bone density scan and a few other clinics monitoring the after effects of GvHd! I am glad that they are all on the same day! A busy day, but only one trip to London. And in between times, I have another trip to Lausanne booked.

The only other thing I need to get done is a little bit of outstanding dentistry (another crown).

So on that note I will end with the customary “Onwards and Upwards”

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But not been in blogging mode I fear – partly because there has been a lot going on.

I returned from my break in Lausanne for a few days to get myself prepared to start work back at Corsham, where I was working last year. I had a trip up to London to see the opthalmic department at St Thomas’s – the good news is that my eyes are getting slightly better, the bad is that I still can’t wear contact lenses – very frustrating!

After some fairly swift contract stuff, I was able to go up to Corsham, for an induction (!) and get passes and so on sorted out, ready to start work on the 28th. But before then I had a dentist visit to have the root canal work (started in January) completed and a crown fitted. I have to say I was impressed. The crown was made in the surgery after being machined out of a block of ceramic material, using Computer Aided Design/Computer Aided Manufacture (CAD/CAM) techniques. Basically the tooth is prepared, photographed to produce a 3D image which is then adjusted by the dentist, digitised and sent to the machine.

After machining it is glazed (in the surgery) and fitted. One afternoon’s work. Not cheap but very effective. There is a little more dental work to be done. One item is a crown I had fitted when I was 16 (following an unfortunate incident on a bike!). It has served me well, but as my gums have receded slightly (age and chemo) it probably needs replacing, so I think I shall have that done with the same technique.

The weekend was spent on coursework, and then I was off on Monday morning to start work. It felt strange living in a B&B again, but it was a busy week, getting back into the project, some visits and so on. At the moment it is only until the end of the month, but there is a possibility that it might be extended, and as yet I have heard nothing about the Belgian job that my CV has been submitted for. But it was good to be back at work, and in a brand new building!

So while it has been busy, and a while since I posted, I’m still very much around!

Onwards and upwards!

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It has been a while since I last updated the blog – a busy couple of weeks, although this week I find myself back in Lausanne visiting friends again.

All is quiet on the health front – my next check-up is at the opthalmic clinic next week, but life has been far from quiet!

In addition to my ongoing coursework for the last module of my PgDip, I have been to a study day to discuss the dissertation to take the PgDip to an MSc – and exciting but daunting prospect! I have also been doing some more work locally for a client, but the exciting news is that I have had approaches from two agencies about some more contracting work. One is short term back at Corsham, the other longer term in Belgium.

Both are still in negotiation stage, and until contracts are signed anything can happen, but still exciting prospects. The Corsham contract has been a possibility for a couple of weeks, but the Belgian one came out of the blue last Sunday!

My trip to Lausanne had been booked a while back, so although it looked as if I might have had to postpone (or curtail) it, the contract negotiations are still ongoing – thank you mobile phones and internet.

So exciting times ahead – very much onwards and upwards!

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No, not the sort that you eat with Nachos, but another major milestone in “getting my life back” – my first open water dive for over five years!

The dive was proposed last week at a sheltered site close to Portsmouth Harbour, and I spent some time getting my kit ready last night. It has been carefully stored, and I had checked it earlier, but it was still a little painstaking simply because I haven’t had to prepare it for a long time.

It was very cold this morning – air temperature at about 1C, and the water at an estimated 4C, so it was drysuits and a good assortment of thermal clothing.

There were one or two kit problems, but I eventually jumped in, together with buddy Dave. It was very strange at first. In some respects it was like being a novice diver again, worrying about the techniques of buoyancy, and controlling breathing, and remembering where all the bits were, but after about 15 minutes, everything settled down and I started to relax as earlier training came back to me.

I was in the water for about 30 minutes, 27 of which were submerged. On exit, my hands were blue under the wet gloves, and I used a lot of air (a function of the cold water and my nervousness) even though the deepest we went was 6 metres but… it was great to be back in the water.

I still need to do some pool self training to refresh the drills, but I think if I can get back in under challenging (in terms of the cold) conditions, I should be OK to progress to deeper dives this summer.

And a big thank you to all at the dive club for their encouragement and patience!

Onwards, and upwards (and downwards!)

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Yesterday saw me returning to Guy’s for my check up at Guys. It is 5 years sin ce the donor transplant, and the protocol dictates that I should have a bone marrow biopsy, and on Tuesday I received a phone call saying that one had been booked for me in the Haematology Day Centre.

So I duly travelled up a little earlier to go to the Day Centre – first surprise, it had moved, and a is now located round the corner in a much enlarged and very smart facility. However, while the location and facilities are new, there were some familiar faces, particularly Orla, who used to run the unit (and has moved on, but was back yesterday to help out), Karen, whio helped look after me during my various visits to Samaritan ward, Debbie and Grace, also from Samaritan ward, and finally, as I was leaving the unit, Yvonne, who used to run the day centre at St Thomas’s, where I first started treatment many years ago! It was wonderful to see you all and to catch up with all your news.

But is was strange being back in that environment. The site of the little canulas (or should that be canulae?), the red boxes marked “Danger – Cytotoxic drugs”, and the sound of the infusion pumps brought back many memories and mixed emotions. Having been so much a part of my life, I did feel like a visitor. The new unit seemed slightly less cosy than the old, but there is no doubt that it is an improvement. I was talking about these feelings with Orla, it is almost like being part of a family, and while the circumstances were not ones to be wished for, there were some good times during the various visits.

Orla did the biopsy (a new development – previously they have been done by a doctor. Lovely job too, almost painless and today no twinges at all. She did remark that my pelvis (to be accurate, the iliac crest) was particularly tough! I also had my armful of blood removed for analysis!

I was delighted to have a long chat with Michael, about two years into his treatment – so if you are reading this, good luck with the remainder of your treatment!

After leaving the unit, I went down to the Haematology 2 clinic where I had a check up. Nothing untoward found, but the protocol dictates that I have to have a bone density scan – ironic after Orla’s comments! I am also having another lung function test which will be useful with the diving!

I finished the day with a chat with Dr Raj, before heading for the train home. It was a bit of a dash and in my hurry I dashed for the wrong train, so by the time I had backtracked, I was an hour or so later than I expected getting home.

But it was a good day, lots of memories, catching up with old friends.

Tomorrow I am going diving (sheltered water, but it will be outside, so it will be a ‘chilly dip’ – perhaps I ought to take some nachos!

Onwards and Upwards!

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