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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Saturday… The sun shines!

I’m afraid I haven’t been in the right frame of mind for blogging in the last month or so. The background activities to the divorce have kept me busy too – I am amazed by the mountain of paperwork that it generates. The bad weather doesn’t do much to lift the spirits either.

BUT – today the sun is shining, a court hearing on Tuesday went fairly well, and not as daunting as I feared, and there are a few things to report!

After my Birthday weekend, things settled down a bit, but the highlight of April was a week of diving down on the Lizard peninsula in Cornwall. The weather wasn’t particularly kind to us (I was with my diving club) in that there were gales which gave a high sea state, but in the five days we were there, I did six dives. These were the first real and prolonged ocean dives I have done for nearly seven years, (discounting a 2 minute dive last year when my suit leaked) so it was quite an achievement. I was a little apprehensive, but once in the water I settled down and really enjoyed it. The training and practice sessions I had done in sheltered water had helped immensely, but it was great to be in the sea again. Another step in getting my life back.

Health wise, little seems to have changed. I had a clinic last week for one of the side effects of GvHd, but that has stabilised and I was discharged from it. The next major check up at the haematology department is next Wednesday, so another trip up to London and out to King’s College Hospital. The only caiuse for concern is my eyesight and the cataract problem. My next visit to St Thomas’s is approaching, and I think the time has come to ask about getting this sorted before it gets any worse.

The house is gradually getting into shape. My parents visited last weekend whichs good, and today I have been cutting the grass (I bought a lawn mower three weeks ago) and pricking out some germinating seeds, and setting some runner beans to germinate. I am fairly sure where I am going to put the beans, but I need to cut out some lawn (less to mow!) to make a bed for them.

So all things considered, not too bad, and justifying “Onwards and Upwards”!

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Saturday… Yes, I am still here!

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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Thursday… Chilly June!

Pity about the weather – too good to last! ECP went well, although the early Sunday morning start meant that I had to travel up on Saturday evening for two nights in Gassiot Hpouse at St Thomas’s. Not too bad although the street noise on a Saturday is pretty bad, and of couirse I lost an evening at home! But we did clean up BBQ for a bit of al fresco cooking! The ECP itself was uneventful, and on completion I nipped downstairs to the eye clinic.

The considered opinion is that I don’t have conjunctivitis in the infectious sense, but I am suffereing from mechanical abrasion caused by the dry eyes, another GvHd symptom. I have upped the artificial tear regime, and I also got a prescription for another artificial tear – eyelube which, I’m told, “stings a bit”. I’ll find out tomorrow when I collect the prescription from my GP, but the more frequent use of the artificial ears has helped. I have another appointment with my optician tomorro, so we’ll find out if there has been an improvement.

I was at a trade exhibition yesterday looking at shiny web applications – which was interesting, and back in the office today, and back home again tomorrow afternoon.

And I need to find a dentist. I seem to have lost a filling – but finding one is not easy :(.

Still – Onwards and upwards!

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Thursday… Polling day!

I started this entry on Tuesday with a tag line of “So that was the Bank Holiday weekend!”, but I didn’t quite get round to finishing it, and I was away in London yesterday.

It was a good Bank holiday though. On Saturday we nipped up the road to Odiham for a friend’s Birthday Party – great to see Sheila and Philip – friends from our Plymouth days – along with other mutual friends from that era.

Sunday was a bit damp and was spent at home, trying to do my tax online – which wasn’t a success! Monday was a bit brighter, but I spent some time configuring a client’s fileserver (part of an ongoing project. I also had a minor accident with a cup of coffee and an open filing cabinet! Fortunately not too much paperwork was affected and of that, a lot was fairly old and needed a sift through anyway.

I returned to Corsham on Tuesday morning, and went back home on Tuesday evening, ready for an appointment at Guys on Wednesday.

I also had some end of year paperwork to return to HMRCS, so I made a start on that on Tuesday evening, although not helped by a bit of ‘flaky’ software (supplied by HMRCS!) that prevented me from completing the return, although on Wednesday morning I discovered a ‘patch’ for it, and manged to complete it. One job completed, before it was time to nip down to the station and get the train.

This appointment was for for one of the minor check-ups by a specialist looking at specific GvHd areas. No problems – a 90 minute journey up to Guy’s, a 30 minute wait for a 15 minute appointment, and a 90 minute trip back – next appointment in six months! It was also an confirm my next haematology appointment – which is next Tuesday.

I had a bit of time at home before driving back to Corsham, so I completed another little job, a Companies House return, then it was back to Corsham for another couple of days before going back home tomorrow for an eye check and a weekend in Cornwall for a family wedding (a cousin).

So a busyish week, but generally onwards and upwards!

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Friday… wet and gloomy!

The weather that is, not me! I have just realised (looking at the large number of comments) that it is nearly ten days since I last posted – fresh from the check up! I have continued to be busy at work, and weekends have been taken up with those jobs that tend to accumulate while away from home (either working or on holiday

I had another check up at Guy’s earlier this week, where GvHd is causing a minor specific problem, but it seems as if a topical immuno-suppressant should sort it out, with a review in a month’s time. However, while I was buying my lunch in M&S on Wednesday, I bumped into Dr Kazmi, so although I hadn’t seen him at the haematology check up, we had a quick chat as we walked back to Guy’s.

Autumn seems well and truly upon us, the mornings are dark when I get up, and the heating in both my flat and at home has been switched on, and I suppose it is only two weeks until the clocks go back on Sunday 25th! Ah well, lighter mornings, darker evenings!

So that is pretty much it for the moment. Just looked at the clock and decided that it is time to pack up for the drive home!

Onwards and upwards!

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Tuesday…woops!

Well, the last posting may have been overdue, but I was certainly under-due for my ECP appointment.

It all got a little strange when I turned up at the accommodation yesterday, and found that no room had been booked. But it was when I arrived on the ward to be greeted with “Nice to see you, what are you doing here?” that I started to get concerned! It turned out that my appointment (which I had had to move from last Monday, had been set for next Monday! Fortunately there was a spare machine and I had the treatment anyway.

However, it didn’t all run smoothly as this morning there was a problem with the machine I was connected to, and after a bit of messing about, I was put on another one, so the process was delayed by an hour!

I had expected this to be the last session, but it seems not! As it is a while since I last saw the consultant dermatologist, I had an appointment made on conclusion of yesterday’s treatment. As I have had such a good response, I am having some more sessions, at six week intervals with a review in 4 months, which will be after another three sessions.

I was delighted to see fellow transplant patient Mark on the dermatology day unit. He has had a tough time with GvHd after his second transplant, and at the moment is on steroids to damp down his immune system, along with immuno-suppressants. Not a good state of affairs, so he is having a course of ECP as a less aggressive (and more effective) alternative. We had a long chat about the treatment – it has certainly been very beneficial for me – so I hope all goes as well for him.

Finally… I have always been interested in finding out about the various risks that have been likely to affect me, and one has been the CMV infection. One of the requirememts for my blood transfusions is that it should be CMV negative. CMV (or Cytomegalovirus) is a relatively common infection, that usually only causes problems in people that have impaired immune systems. I found an article about it in Monday’s Daily Telegraph, and with a bit of Googling, found this article which I have also added as a link.

While on the subject of common infections, another is the Epstein-Barr Virus, associated with glandular fever and possibly linked to some lymphomas. There is more information here. Although I am CMV negative, I am EBV positive, along with the majority of the population!

End of cytology discussion… Off to Chippenham this evening!

Onwards and upwards! (and I’ve just noticed – this is the 400th post!)

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Tuesday… check up and ECP day 1

As the title says, today was a day of checks and ECP, but I did say that I would write about the Bank Holiday weekend.

Saturday was a lovely sunny day, so I got a few outside jobs done, starting with a climb up onto the roof to refix the TV aerial to the chimney. Its a long way up and it was quite odd trying to pass lashing straps round the chimney stack, but it all went without a hitch and while I was putting the ladders away, it was an opportunity to sweep out the garage, and also run up the generator for a test. Those who don’t know about the generator, I described it here and here. Anyway, it started and operated without any problems!

We had a visit from Jon and Elaine in the afternoon. Jon was the other flatmate at University, and although we are in contact, e mail, Christmas cards, it is over 20 years since we last met up, so it was good to see him and catch up. There is a photograph, somewhere, so Jon, if you are reading this in Spain, please send it!

We had a reasonably leisurely Sunday, but in the late afternoon drove up to Oxford for a birthday party, given by another friend from University, Faith. A great evening at it was really good to meet up with some other friends from University, Tom, Barbara and Dina and their spouses. We have seen each other from time to time over the years, (and I was at Tom’s birthday bash last year) but we again had a catch up. It is true that the friends you meet at University where you share the ups and downs remain friends for life. They all rallied round when things were tough over the last few years, and I guess their influence when we were younger has helped shape me – so a heartfelt thank you is in order.

We went back to the flat, and then met up again at Faith’s on Monday. A slightly smaller gathering, but the time flew by in very convivial company. So thank you Faith – a very good ‘bash’!

Today I was up bright and early for two days’ of hospital. It started in the lung function laboratory – no results yet, but it seemed to be OK. Then down for the haematology check up with Dr Kazmi. Nothing untoward apart from a slightly elevated platelet count, attributable to the recent cold. I also saw Rachel, the dietician. I have put on a little more weight (67Kg) and my grip strength at 38.8 Kg is only 200gr lower than average, so that is good too. Perhaps time to start a little gentle training, and who knows, perhaps diving might be back on the agenda … 🙂

I took my notes over to St Thomas’s, using that as an excuse to travel on the staff bus, where I happened to bump into my original consultant, Robert. We had a long chat on the trip across London – it has been a while since I saw him.

ECP was uneventful, day one today, with the second session tomorrow morning. But this is the penultimate session, the last one is next month and then it is just monitoring, although if the GvHd does flair up again, I can have more – but the important thing is that it is under control – and I must say I do feel good!

So… Onwards and Upwards!

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Wednesday… back from the fang farrier

Well strictly speaking, the oral surgery department. The good news is that saliva production is better than last year, so there has been some recovery of the salivary glands that were affected by the radiotherapy (over three years ago!) – whether or not there will be any further recovery is hard to say, but the problem isn’t nearly as bad as it was. I came away with a prescription for a high fluoride toothpaste (there is a risk of tooth demineralisation with a dry mouth) and some Saliva stimulating tablets (they taste a bit like citric aid drops, but contain other minerals to prevent enamel erosion). However I was given the go ahead to eat lemons – provided they are diluted with tonic water (and gin!) 🙂

So that was the day – this evening I had been planning to go down to the dive club for the first time in some months. As my strength has improved, my thoughts are turning once again to the underwater world, although there may still be a few hurdles to overcome before I get there. Still, it will be another significant step in ‘Getting my life back’. As it was, we ate rather later than planned, so I have postponed the visit to next week.

One other thing – the computer threw a hissy fit sometime today, which is why the blog was unavailable. It all seems OK now – it had been running for about 90 days non-stop, so perhaps it just needed a rest!

Still, Onwards and Upwards!

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Wednesday… post ECP

And nothing untoward to report – the ECP on Monday and Tuesday went smoothly and that was followed by a haemotology check up. Again uneventful, although I did give up another 5 tubes of blood – on top of the little bit that gets lost after each ECP treatment session!

After the trip over to Guy’s, I saw Dr Kazmi, the consultant. It was the first time for some months, and his report was that all seems to be fine. The creatinine levels (a measure of kidney function) are still high, (although a bit lower than they were two years ago) but stable, so it is not a cause for concern. I did mention the cold, but as that seems to be going, there was no requirement for action, and it seems that I can stop the anti-fungal drug that I started when my mouth was particularly sore. I also mentioned that I do get a bit breathless, and although that might be the result of the cold, I will probably have a lung function test in the next few months. Finally I saw Rachel (dietician) – I have lost a little weight since I las saw her, but it is up on the last time I was at the clinic, another good sign.

On the domestic front, I hope to be taking over the tenancy on the flat I looked at last week (I had better – nowhere to stay tonight if I don’t!) I am looking forward to having a bit more space and being able to cook for myself, rather than do the round of the four local take-aways week after week. This should improve my diet in both quantity and quality. I have my camera so I’ll post a couple of photos next time.

So on that note, what more can I say but “Onwards and Upwards”!

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