Sunday

Hmmm – there is more to being a blogmaster than meets the eye! I came to check the site this morning and found that it wasn’t working – so if you tried to look, you either received a cryptic message about not finding the mysql server, or my hastily put together maintenance page!

Suffice to say that it is now working again, after I installed another little patch – but why it stopped overnight when I had done nothing to the system remains a mystery!

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Saturday

A special post, nothing to do with health, but just to note that the blog is now up and running on www.boraston.net/blog – and to say a big ‘Thank You’ to Mark J for setting up the original blog back in January – it seems a long time ago!

For those that are interested in a bit of “Geek Speak” the underlying server is an AMD powered PC, running Red Hat Linux version 9. The Web Server is Apache 2, using PHP version 4.2.2. The blog software is WordPress 2.01, and the database that stores the posts is MySQL version 4.1.18. It was the MySQL database that caused the problems importing the old blog and it needed an upgrade to accomplish that. The limiting factor on speed is the ADSL uplink, which is 256Kb/s.

There is still a bit of tweaking to do behind the scenes, both to the database and to the Apache webserver, but those should be transparent to anyone viewing the blog – but it will keep me occupied during the day!

While I am posting, I can also say that work on the planned conservatory is continuing today – the completion date (apart from the flooring which can’t be done until everything has dried out) is 14th April – just in time for late Spring and the Summer!

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Friday… T+50

Yes, it really is 7 weeks yesterday since the transplant took place! I suppose the real difference is that the trees in the garden are startiing to bud, the bird life is more noticeable and the evenings are much lighter!

Another check-up yesterday and the general agreement seems to be that I am making good progress. I didn’t wait for all the blood test results, but my haemoglobin is continuing to rise (now at 10) and the basic blood chemistry seems to be heading in the right direction.

The main item of note is the stopping of the Cyclosporin; it was low dose anyway, but it is thought that this might provoke a little GvHd (a “good thing”) to encourage the Graft V Lymphoma Effect (a “very good thing”)

The next milestones will be the PET scan on Tuesday, to see how much of the underlying lymphoma remains, and the chimerism rests, when the ratio of donor DNA to my blood DNA will be measured. This shows how the donor immune system is doing in taking over from my own. I think I said in a previous post that this is being done slightly earlier than normal, because I went into the procedure with somewhat more active disease than was desirable, so I’ll await the outcome of those tests with interest (and anxiously!)

I saw Mark and Jean yesterday – you may remember that they were fellow patients having similar procedures – and I’m delighted that both were looking well, and also seem to be making good progress!

Work on transferring the blog to my server continues. I have a working set up at www.boraston.net/blog but there are some compatability problems between the two versions of the underlying database that stores the posts so I can’t import the old data – and upgrading my version of the database (MySQL for those that are interested) is not quite as straightforward (these things never are!) as I thought. Perhaps by the end of the weekend…

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Monday

Thank you for the comments so far – I’ll certainly keep the blog going while I have anything to report, and if the hosting does change, I’ll post that too. Meanwhile thanks to Mark for continuing to host it.

We had a good weekend and ventured out to a social event on Saturday night (a birthday party) and although I was a bit of a party pooper in that we were the first to leave, I wasn’t as tired on Sunday as I expected – I hope evidence that I am getting a bit stronger! My appetite is also getting better, and I am feeling better since the Cyclosporin dose was reduced – although I am told that 25mg/day is pretty low!

So – as ever – onwards and upwards!

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Another Friday!

I haven’t been very diligent in writing the blog, but with weekly check-ups, there isn’t really a lot to report on healthwise!

However I did have another check yesterday, and also had the stitches from the Hickman line removal removed – so apart from a few (more) scars, that is all done and dusted!

Progress seems to remain good, although there is still slight concern over kidney function. They are working OK, but not quite as well as they were before I started the treatment – in particular creatinin (Sp!) clearence isn’t as good as it might be – the solution is to drink yet more water – recommended 3 litres a day (haven’t they seen there is a water shortage in the South???) and to reduce the cyclosporin dose again – a mere 25mg/day.

Apart from the weekly trips up to Guy’s I have been keeping gently busy round the house – the odd (easy) job, a bit of computer stuff (continuing my self training programme on Linux) although having said that, I have just foobar-ed one computer (now un-foobar-ed) which wasn’t very clever.

I am also considering the future of the blog. At some point soon I want to transfer it to one of my servers, but I am wondering how much longer it will continue to be useful… comments please!

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Friday – 2 weeks since discharge!!

Can’t quite believe that 2 weeks have passed since I was released! It is a cold grey morning here in Hampshire – with a dusting of snow on the shed roof. I see the squirrels have attacked the bird feeder and there is a pile of bird seed on the lawn – it won’t be there for long!

I had another check up at Guy’s yesterday – travelling up by train as my counts have recovered sufficiently to allow limited mixing in public spaces! I did go off peak so there were fewer people about and a corresponding reduction in the risk of infection. Progress has been maintained and my blood chemistry is continuing to move in the right direction! I am still anaemic, haemoglobin is just below 10, but is improving, and the other markers that indicated possible liver/kidney function problems are reducing – although I did get a severe telling off for not drinking enough water!

One cause for concern is the weight loss I have experienced since discharge – about 4Kg. My appetite still isn’t that good – I suspect my stomach shrank while I was in isolation and inactive, and the various drugs aren’t helping my digestive system, so the solution is probably to eat little and often… Longer term it will be to get to a gym and start replacing the muscle that I have lost in the last 6 weeks. Need to get fit for that diving expedition in October!

The good news was the removal of the Hickman line – just over six weeks since it was inserted. I will have another scar where the cuff that held it in place was cut out, but as my scars have scars, that won’t matter too much! The stitches for that will come out next Thursday at the next check up.

I mentioned in one of the recent posts that the medical team are anxious to see how the underlying disease is progressing (or hopefully – regressing) and the need to wean me off the immuno-suppressants to allow the incoming immune system a free hand, while not encouraging chronic graft versus host disease (GvHd). My cylosporin levels are lower after we reduced the dose last week, and I am now booked in for a PET scan on 14 March. I think I said that the wait for the results will be a bit tense, but it has been arranged that the PET scan wil take place on the Tuesday, so the results will go to the case meeting on the Wednesday, for me to get them on Thursday 16th (well, that’s the plan!) I have been warned that there may be some active disease – the mode of operation of the immunological approach is slower than the chemotherapy, so I suppose we are looking for a continued reduction in activity. That said, my leg is swelling much less than before, possibly because I am more active, but I hope because whatever was causing the obstruction on the lymphatic drainage in my leg is reduced in size.

Now to go and find a calorie dense breakfast – bacon sandwiches sound appealing!

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Tuesday

It has been a quiet few days over the weekend. My parents came down to look after me at the weekend while Felicity was away, and a little more work was done on the conservatory footings, but Sunday was really wet down here, so not much progress was made! However yesterday was brighter and the base wall up to ground level is almost finished!

I was looking back through my diary yesterday – this time last year I had just returned from my first trip to the US for 2005 – and the first for some six months after the last self donated stem cell transplant in October 2004. I was at a meeting in London – little did I know then that 12 months on I would have been through another major procedure to ‘lick the lymphoma!’ I went on to do another 5 trips to the US up until July, when that particular project came to an end for me – a shame – I like Washington DC and made some good friends over there!

Talking of friends, I’m not sure if I have ever said how much I have valued the support I have been given over the last 6 years while I have been fighting the lymphoma. I have been particulary fortunate – one friend in particular visited me most days during my hospital stay in October 2004 when I was ging through a tough time after the radiotherapy (a change in personal circumstances meant that they weren’t able do the same this time – but I remain very grateful!) but the support I had this time was fantastic – and it really did make a difference to my recovery!

Where is this leading? Well, it became clear to me very early on that not everyone in my situation is as fortunate in having such a wide support network. A cancer diagnosis is a great shock, and emotional support both immediately after diagnosis and during the treatment phases is very important. Fortunately there is a charity, Leukaemia Care, that does provide emotional suport for patients and their carers; there is a link on the blogroll to their website. The reason I mention it is because I am a volunteer worker for the charity, and the support and strength I have received from all of you who have helped me, re-enforces my belief in the importance of charities like Leukaemia Care. Please take a moment to look at the site, and can I ask you to consider supporting it when you review your charitable donations for the year?

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Friday

I’m sorry I didn’t get to update this yesterday – we got back from London late afternoon to get several visitors – including my parents who will be looking after me this weekend while Felicity is away. I was also setting up a new broadband router in the evening, which took a bit of time to get just so!

However, yesterday’s check up went well. We arrived at Guy’s nice and early, and did the usual armful of blood from the Hickman line in the haemotolgy day unit. Then it was just a question of waiting for the analysis before seeing the consultant and discussing progress.

The enzymes in my blood that indicated kidney/liver problems are reducing, and the haemoglobin count is slowly increasing – hovering just below 10 (which explains why anything more energetic than climbing a flight of stairs is exhausting!) and the overall feeling is that I am recovering well from the transplant. However, the transplant is only a means to an end, and the reason for doing it is to provide me with a brand new immune system to fight the underlying lymphoma, so attention is now starting to shift to that aspect. Normally this wouldn’t be a concern until about 3 months after the transplant, but because I went into the procedure with rather more active disease than we would have liked, it is likely that I will have a PET scan in about a month’s time.

This also means that there is a drive to reduce the level of immuno-suppression so that the incoming graft can do its stuff and start being aggressive in getting to grip with the lymphoma cells. Therefore the Cyclosporin dose has been reduced, accepting the fact that this increases the risk of graft versus host disease (although a little acute GvHd is regarded as a good thing – it is the chronic form that is bad) There will also be DNA tests in the next month to see what proportion of ‘my’ blood cells remain in comparison with the donor’s. If the donor cells aren’t making sufficient progress, they can be helped by a white cell infusion (already in store) from the donor, but that is not an option while I am taking high doses of Cyclosporin – which is another reason for reducing the dose. I suppose the fact that I don’t have to go for another check up until next Thursday is also a sign that things are going well! I should have the Hickman line removed then too!

On a practical side, the swelling in my leg seems less pronounced. This (you may recall) first became noticeable last Ocober (yes – it really was that long ago!) after the biopsy, when it seemed that an enlarged lymph node was affecting the drainage from my right leg. This went after each session of chemo (in November and December) but slowly returned in between the sessions. After the conditioning treatment in hospital the swelling went down overnight, but returned gradually during the day, but this effect seems less pronounced now – so intuitively this would seem to be a positive sign! That said, the ultrasound scans of my kidney and liver didn’t pick up any obviously enlarged lymph nodes… I guess the PET scan will be the definitive test!

But overall I feel in good shape, although I still tire very easily. My appetite is getting better, my digestive system seems to be settling down, the drugs seem to be tolerated, and considering the battering my body has had from the various drugs in the last 4 years, I seem to be in remarkably good shape! So… onwards and upwards!

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Wednesday

Another quiet day at home! Not really a lot happening at the moment apart from taking my medicine and relaxing! However Felicity and I are off to London in a moment for my next check up at Guy’s tomorrow. I hope that this will soon be a weekly occurrence, with the mid week check ups taking place at Southampton. I will also be asking when I can drive again – I hope that will be soon if the Cyclosporin levels have stabilised. (High Cyclosporin can have a temporary effect on vision – as I noticed once while I was in hospital!)

Other than that, I feel well (though slightly frustrated at not being able to go out – but I must be patient!).

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Tuesday

Bit late posting today – mainly because it has been very quiet! I have felt quite tired – the trip up to London over the last couple of days was more tiring than I expected. I also had some aching legs from the brisk walk to the hospital (only 15 minutes each way too 🙁 ) so I guess I have a long way to go to get fit again!

On a positive note, I had a call from Guy’s today confirming that the Cyclosporin levels seem to be Ok, and stable, but I will be back up to London again tomorrow evening for an appointment in the transplant clinic for another check. After that I hope I will get in the alternating routine of Guys/Southampton, which will make life a little easier!

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