Peter’s Hospital Diary

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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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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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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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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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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Back home again after the check up in London. I’m delighted to report that blood chemistry is slowly getting back to normal - haemoglobin is creeping up (just under 10) and the enzymes that were giving concern about my liver and kidney function are slowly reducing, and the Cyclosporin levels seem to be OK - so all in all, progress is being maintained!

London itself was OK - we are lucky to have use of a flat, which made the logistics a lot easier as I have been advised not to drive just yet, and not to use public transport - so my role was as navigator for Felicity! We didn’t get lost!

Next check up is on Thursday - so onwards and upwards in the hope that progress will continue! I am feeling a little tired after the trip up, so I’ll write more tomorrrow!

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I woke up this morning (after another lovely night of deep sleep!) to an unusual sound - rain! I dont think it rained at all while I was in hospital, or maybe the double glazing in the room was so efficient that I didn’t ntice! Fortunately it stopped in time for Tom & Mike to carry on with the ground work for the conservatory - the footings are now in place!

We are off to London later this afternoon, to stay in our friend’s flat ready for the outpatient appointment tomorrow. This will be to establish the levels of Cyclosporin in my blood and to make adjustments to the dose as required. I expect the usual armful of blood will be taken, but as I still have the Hickman line in place, this isn’t a big deal!

We expect to be back late tomorrow evening, when I will make the next post.

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Phew its good to be home, although as I woke from a deep sleep this morning, I did wonder where I was - because coming in from outside was the noise of a concrete breaker! Was it a dream? No - it was the ongoing work by Tom & Mike in preparation for the conservatory we are having built on the back of the kitchen; but I had to smile after my comments about the hospital car park work!

But I digress… I finally got away at just before 1 yesterday afternoon. Needless to say I was packed well before then so I was ready and rareing to go. I dozed most of the way back, and was home about 2 hours later. It was sooooo nice to be back - my own things, peace and quiet, and above all, good food!

It is a cold frosty morning here in Hampshire - the temperature is hovering around freezing point - but so what - it is lovely and warm inside!

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Fittingly, it is another crystal clear day over St Pauls, but today is the day… 30 days after admission I am on my way out! It was a bit touch and go, because although the ultrasound showed nothing apparently wrong with my liver, there is still a marker showing up in the blood chemistry which is causing concern, so I have to return on Monday to the day unit to check Cyclosporin levels and to see if the marker is still there. But it will be so nice to spend the weekend at home, sleeping in my own bed, and no observations.

Now is the time to thank all those who have looked after and supported me in the last month. It is always dangerous to mention names, because there will be some I will miss, out, but on the nursing side there is Liz, the ward manager and her team, including Nicky, Sinead, Aili, Ellen, Grace, Johanna, Tom, Louise, Gary, Mick, Steve, Tom, Michelle, Raj, Clemmy, Thelma, Eric, and many more who were just shadowy figures doing the observations at night.

The nurse specialists, Viki, Liz and Karen; Rachel, the dietician, who took up the food battle; the unsung heroes on the cleaning staff..

The medical staff, including the transplant team, Drs Kazmi, Smith and Yeung, and their team of registrars and house officers, including Sala, Sally, Shabeena, Alice and several others whose name I didn’t catch, and of course Robert, in whose care I have been for the last 7 years since I was first diagnosed.

And then there are all of you who have visited me, or read the blog and commented or sent me emails of support - it really has made a difference! And last but not least, my parents and family who have visited and supported me in the darker moments. (Yes, there were some).

The blog will continue, although perhaps not so frequently. I will probably start a category on ‘Post Hospital’ and update as and when required - it has been great fun writing it - I hope reading it has been equally good. Interestingly the statistics indicate over 150 individuals reading it (based on IP addresses) And thanks to Mark for hosting it - I will move it onto my own server in the near future, but I’ll post when that happens.

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It looks a gin clear day outside - not a cloud in the sky, and the sun shining strongly, but it also looks very cold - even the temperature in my room has dropped - to just over 25C!

I’m feeling good this morning; we have had the usual start to the day, Obs, bloods etc. Breakfast was hot when it arrived, and all the indications are that tomorrow will be the day. There is still a little concern over liver function, one of the blood markers is abnormal, but the other one is OK, so I am drafting this while I am waiting for a porter to take me down to ultrasound for a quick examination.

I think the deciding factor on whether I go home or not will be how my Cyclosporin levels are falling off - definitely a question for the ward round!

I still can’t quite believe that it is over a month since I was admitted - I feel more than ready to go!

…Just returned from the ultrasound on my liver - all looking normal, so another tick in the box!

Yesterday afternoon passed quietly - I went back to the chair outside the room to sit in the sun and read a book. I had a reduced does of IV Cyclosporin, part of the weaning process! I had one visitor in the evening, a friend from Bristol who happened to be in London working, and then a reasonably early night, and another good night’s sleep. The 2 o’clock Obs seem to have been dropped, so apart from getting up to get rid of excess liquid, I slept really well

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