Peter's Hospital Diary

My hope that Friday’s ECP would be equally uneventful was not entirely fulfilled! The kits come in two versions, one, the 125 ml kit takes 125 ml of blood , centrifuges it, stores the lymphocytes and returns the centrifuged blood back. This happens over 6 cycles. The large kit takes 250ml of blood, does the same, but takes only 3 cycles. The end result is that 750ml of blood is processed, but the large kit is slightly faster.

The machines are prepped in advance (they take about 25 minutes to set up, and I generally have a small kit. However on Friday, the machine had been set up with a large one. Not a problem, had that before… but on Friday morning my blood pressure was slightly lower than normal (it always is a bit low anyway).

This caused great consternation, with frequent blood pressure checks, a saline infusion (to increase BP) which meant the saline bag emptied during the procedure, and constant checking to see if I felt OK (I did!). So it was all a bit of a faff, and took a bit longer than expected. However I can’t fault the nursing staff, who were only being careful!

The entrance to St Thomas’s has been re-vamped, with quite a good shopping/food area – including an M “This is not just (hospital) food” & S Simply food outlet. Unfortunately the staff wouldn’t let me nip down (while the lymphocytes were being irradiated with UV light) but the wife of another patient very kindly went and got my BLT for me! The entrance does look very good – I hope the same effort is going into re-furbishing the treatment areas and wards!

After the session finished, I nipped over to Waterloo to get the train down to Bournemouth where I was met by the rest of the family. A browse round Christchurch (lovely town) and then a meal in a restaurant on Bournemouth sea front (near Boscombe Pier).

The rest of the weekend was fairly uneventful, apart from a vist by an old school friend, Ian, and his wife, Carolyn. Good to see you both!

So – onwards and upwards!

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I’m writing this from my little room in Gassiot House, the hostel for patients staying for consecutive days of treatment – and it is a bit warmer than I have known it in the past! So this afternoon was the first of the two sessions of the ECP – and as usual, it passed uneventfully. The second session is tomorrow morning, so I hope that will go uneventfully too.

My cold seems to be getting better, and I don’t feel quite as breathless as I did. I still have a bit of a cough, but nowhere near as bad as it was.

I had a good week last week, with the final push to complete the coursework. Once I had got into the correct mindset’ it seemed to flow well – and the program (or – to be strictly accurate – script) ran as I hoped it would and did what was required of it. The weekend was spent writing up the reports on the design, and it was submitted electronically on Sunday, with the hard copy in the post on Monday!

So with spring round the corner, and the clocks going forward in two weeks, very much a case of “Onwards and Upwards”!

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Things have been a bit calmer at work, just as well as I have still been fighting off the bad cold and cough that I seem to have had for most of February! That now seems to be improving, I’m not so breathless, the runny nose is better, and while the cough is still irritating, that isn’t as bad either – although I did have to resort to a well known branded cough medicine!

I have also made some good progress on the last lot of coursework. Pressures on time meant I couldn’t devote much time to it in January, but I finally managed to put some time aside in February, after applying for an extension, and once I had adjusted to the syntax and idiosyncracies of the Python scripting language, I was able to make some good progress – just a case of getting into the the right frame of mind. So the program (or to be accurate, script) is complete and does what it is expected to do, so there is just the design detail and description to finish and I can submit it.

I have some more ECP next week (seems ages since the last session) and it is hard to believe that February is almost over. The lighter mornings and evenings are very welcome, and in just over three weeks the clocks go forward to Summer time – so all we need then is some warm weather!

Onwards and Upwards!

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I was just looking at the blog and realised it is ten days since I last posted!

The cold seemed to stay stable for the rest of that week, and at the weekend, I went up with University friend Faith to Harrogate, where we stayed with Dina (Faith’s flatmate) and had dinner with the other girls from her flat (Barbara and Barbara, and their other halves, John and Rod. A really good evening, fantastic food (thank you Dina and Chris) and once again I was struck by how fortunate I am to have such enduring and deep friendships. I was reflecting on that in the sense that we went off to University to get a degree and to ‘grow up’ a bit – no-one really explained that it would be a time when such long-lasting friendships would be formed. We talked about it and we all hoped that our children will be as fortunate in their University experience.

On Sunday we went over to visit Jane (and dental student from those far off days, who is suffering from a bit of ill-health. Another group of remembered faces, reminiscences and relaxing company – and a superb tea prepared by Jane’s husband, Paul. Faith and I drove back late Sunday evening, feeling decidedly stuffed, and then I went back to Corsham!

I was at Shrivenham last Monday for a ‘project day’ when we were discussing the final year project for the MSc. I am still undecided about a project so I might defer for a year while I think about it. It also partially depends on my contract – it expires in March, and if it isn’t renewed I will have more spare time, if it is, then I think the dissertation might be difficult to fit in. Then it was back to Chippenham where I met a crowd from the office for a Chinese.

The rest of the week was busy. A silly o’clock start on Tuesday for a day trip up to the wilds of Lincolnshire – not much fun as we had sleet and then sun glare off the roads on the way back, with roadworks throwing up muddy spray.

Wednesday was in office, as was Thursday morning, but then it was another trip down to Feltham for more meetings. I arrived back in time to nip out for a curry with another group from work! I think I might have slightly overdone things though as the cold seemed to come back and I felt quite rough on Friday morning.

But the weekend was good. I cooked on Saturday evening (pre-valentines day!), and after a couple of days relaxing, I felt better for my return trip. So I hope that the cold is on its way out!

I have been having problems with e mail. My e mail provider for my main e mail name has had a few short sharp ‘phone calls from me. It still isn’t resolved, caused by their installation of a ‘new, improved’ server which I think is severely mis-configured.. I’m still reviewing my options – self hosting is one of them, but I need to investigate spam filtering first.

So on that note… Onwards and upwards!

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It has been a funny week! Just after I wrote the last entry, I started developing a pain in the left side of my chest. It was so bad that unless I lay still in one position in bed, it was impossible to sleep. Had it been going down my arm, I would have been seriously worried. As it was, I was concerned enough to log a call back with NHS Direct who confirmed that it wasn’t a heart attack, and suggested it might be a chest infection or some random bug.

I went out on Wednesday night to see friend Faith, and her husband – lovely meal – thank you! However I felt quite shivery when I left, although that went once I had the car heating on high. But I booked an appointment with my GP for Friday.

My GP ruled out pneumonia, and probably pleurisy, but thought it could have been some ‘flu bug, or the residual effects of a previous bug.

Anyway, I had a course of ‘horse pills’ and whether they made a difference, or it has just burned itself out, I feel a lot better now!

The other activitiy of the week was a visit to the opthalmology department at St Thomas’s for the monthly review. All had been going well until this other snag, but generally the consultant was satisfied that things are going well, and my next visit will be in four months!

So on that note, Onwards and Upwards!

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Never let it be said that we are not a nation of Tea drinkers! This bag was picked up at Makro at the weekend, and is my contribution towards the tea and coffee fund in the office!

Apart from that little excursion it was a quiet weekend – I drove back on Friday, did the shopping on Saturday and then had another quiet day on Sunday before driving back. I was in Bristol yesterday and today – a very early start this morning – not helped by the noticeably colder weather. It was freezing as I drove back to the flat, so I hope there isn’t too much of a frost on the car tomorrow.

I have felt a little under the weather for the last couple of days, nothing serious, and probably because I was quite cold on Sunday evening. Although I leave the heating on at a low level while I am away, the flat still feels chilly on my return. I think I might leave the heating on this evening.

But generally things are ticking over, so… Onwards and Upwards!

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The snow was pretty much washed away by the rain on Friday night and Saturday morning, but Sunday was quite a pleasant dry day – time to get out and do a bit of outside stuff.

However Monday brought a trip up to London for another round of ECP, which went well, and the bonus was meeting up with Simon for a few long over-due beers and a chat. A great evening, Simon looking well (but bald and – well – polished ).

It seems the rooms in the hospital ‘hostel’ have two heat settings – off and full blast. Last night was full blast, although I managed a reasonable night’s sleep, in spite of the sirens and traffic noise.

The second session of ECP was uneventful, and on completion I grabbed my notes to nip over to the haematology clinic for my 4 monthly check-up. (It should have been next week, but I moved it to coincide with the ECP)..For about the first time ever – no bloods! They had been taken the day before by the ECP team).

I had a quick chat with Rachel (dietician) who was pleased to see that my weight had increased to just under 11 1/2 stone (73Kg), but my grip strength was much lower, which is probably the result of the infection I had over Christmas. We did have a chat about diet – it seems that chemo/transplants may have a long term effect on metabolism, although there is little data on it. These things are coming to light now as survival rates are improving. So it looks as if I shall be having some cholesterol checks as part of the long term follow up!

My next stop was with the Doctor, and an old friend, Matthew, who helped look after me during my second (self donated) transplant in 2004. He had been away doing research and other things, but now back at Guy’s. It was good to see him, and hie seemed equally pleased to see me after yet another transplant.

I have had some concerns in the last few weeks. I had the bad cold over Christmas, with aches and at one point I was a bit concerned about my glands. I have also been waking up at night feeling very hot “night sweats” which is also worrying, although with the cold weather, I have had the heating on higher than normal.

But I had a very thorough check up, nothing abnormal physically, and the blood results (including LDH – a cancer marker) were all normal – in fact it looked as if my kidney function might be a bit better). The conclusion was that it was all linked with a viral infection – possibly mild swine ‘flu (even though I had the vaccine) So I was quite relieved!

Still, I need to remain vigilant, and he pointed out that it is easy to arrange a scan if required if I am concerned. So I will see if the night overheating subsides once I get back to my routine.

So… Onwards and upwards!

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It did seem as if the cold weather heralded the end of the world – local shops ran out of milk, bread and vegetables – fortunately I was OK as I had stocked up earlier! (Only joking ) But the snow was quite pretty, and the children built this large snowman in the back garden. However the thaw was starting as I drove back to Corsham – only to be lulled into a false sense of security as the second wave of snow fell on Tuesday night, which made driving the two miles to work ‘interesting’ in the morning. However that has now all but gone, although the warm wet Atlantic air is causing quite dense fog patches as it meets the cold air from the ground, so the drive home was interesting.

However, perhaps the most significant items of the week are the fourth anniversary of my transplant (last Sunday) and Olivia’s third birthday today! Happy Birthday Olivia!

Onwards and Upwards!

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The snow fell, although not in the same quantities as other parts of the country, but enough to cause panic buying of milk and bread at the local supermarket, and getting to work a little tricky. If anything, this morning was harder as the temperature was -7 when I eventually got into the car, and a colleague reported -14 at his house about 8 miles away. However the countryside did look pretty!

It was getting cold again tonight as I left work (and it has been clear skies all day) so I hope the roads are OK for my trip back home tomorrow. Still, a pair of boots, a couple of fleeces and other warm clothes – just in case – and I hope I’ll be OK!

Onwards and upwards!

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I an back at work again after a couple of check-ups at St Thomas’s yesterday. The opthalmologists diagnosed dry eyes (and a very low level infection) so I have to artificila tears for use when needed. The dermatologists are very pleased with my progress, and I will carry on with the ECP at six weekly intervals. And that, as they say, was that!

I drove back to Corsham last night – it was -6C when I left home, rose to -3C on the journey, but wqas back at -6C when I arrived! I was very glad I left the heating on (at a low level) while I was away – the flat wasn’t too cold! And the air is quite dry now, so the car was pretty much free from frost this morning.

Today has seen a few flurries of snow, and the sky is looking quite leaden (and it has just started snowing again) so we shall see what tomorrow brings!

Onwards and Upwards!

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