Thursday… More good news!

Yesterday was the annual trip up to King’s College Hospital for my annual check-up. You may recall that all stem cell transplant activity moved from Guy’s to King’s about 18 months ago. I’m pleased to say that all seems well, although the King’s outpatient department seems rather more chaotic than Guy’s! There still seems to be a little residual GvHd (which is probably good!) and I may be slightly iron deficient, but as my blood results hadn’t been reported by the time I left, I can’t be certain yet, however I will be notified if I am anaemic or if there is anything else of concern.

I had a long chat with Dr Kazmi, not just about the illness, but about developments at King’s and Guy’s in general, and plans for a new cancer centre at Guy’s hospital. I also saw Orla, who used to run the day centre at Guy’s and has just moved to King’s, so she has a challenge to get it running as well as the unit at Guy’s! However it was lovely to catch up on news of the wonderful team that treated me – most still working in the London Hospitals area! So a good day out – although changes to the rail timetables meant that the journey out to Denmark Hill is even less straightforward than it was!

Also on the health front, I had my second cataract operation last week – this one on my left eye. The improvement is even better – with distance vision really good – better than that of the right eye. My check up for that is next Wednesday, at an early hour, so it will be another trip up to London to St Thomas’s.

And a bit more good news, my dissertation was accepted, so I should be graduating with my MSc in July!

Back here, the sun is shining, and I am slowly getting the garden back into shape, although the weather has been a bit chilly for the last week – but overall, definitely “Onwards and Upwards”! 🙂

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Thursday… Good news!

Yesterday saw me getting the train up to Kings College Hospital for my four monthly haematology check up. This was the second time I have been to Kings since the Bone Marrow Transplant unit co-located there. There was a little more organisation, although blood samples (a regular armful!) are taken elsewhere in the hospital first.

I saw Dr Kazmi, the consultant, and we had a long chat. He confirmed that the after five years in remission, although there is always some risk of relapse, the statistcs take a sharp turn in my favour! He confirmed that my blood counts were good, and although my immunoglobulin levels are still slightly low, they are not that far outside the normal ranges. There were no physical abnormalities, so I am now on annual check-ups! We had a chat about the GvHd, and how good the ECP treatment was in improving my quality of life.

Good news! Next check up is at the eye clinic when I need to discuss getting my cataract operation done.

I have an old friend, Melinda, who is a consultant at King’s, so we were able to meet up for lunch (thank you!) before hand, and catch up on things, and I also saw one of the nurses (Debbie) who looked after me during my various stays on Samaritan ward at Guy’s! Small world!

I got home safely, ready go to sub-aqua club, when I received an e-mail about my dissertation result. Not completely good news as I didn’t quite get the required marks, but not a complete failure as I can revise and re-submit. I am waiting for a list of things that I need to address for the re-submission. A bit disappointing, as it means I won’t graduate until next year, but not a total disaster.

So onwards and upwards! (even though I am going diving this weekend!) 🙂

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Wednesday… Of cabbages and King’s (College Hospital)

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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Friday… A reunion of sorts – and a farewell!

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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Saturday…mid July!

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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Monday… not blogging much :(

MountainJust 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!

MountainI 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.

GorgeMy 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!

GorgeMy 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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Friday… Late Effects Clinic and a trip down memory lane!

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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Tuesday… haematology clinic

It seems ages since I was last at the clinic – probably because it is! All went well, with nothing abnormal found apart from a single liver enzyme taken from my ECP blood test that is 20 times normal value! No explanation especially as everything else was fine. So it is either a false reading forom the lab or someting unexplained. I had blood taken today, so if the same result is observed I may have an ultrasound scan to see if I have a gall stone.

We discussed immunoglobulin again, without any conclusion, and we also talked about a lung function test, which will be useful if I am going to start diving again next year.

So all in all, progress continues and as I left I wished the staff a Happy Christmas as my next appointment isn’t until January!

So O&U!

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