Peter’s Hospital Diary

It has been another busy week – one where I haven’t been at home much!

It started on Sunday when I flew up to Manchester with Neil (another LeukaemiaCARE trainer) to stay with Suzanne (another LeukaemiaCARE trainer!) and her husband before we all drove up to Glasgow on Monday morning for Elspeth’s Funeral.

The funeral itself was a true celebration of a life well lived, and although it inevitably had its sad moments, it was not the mourneful occasion that it might have been. We drove back to Manchester on Monday afternoon, and Neil and I flew back to Southampton on Tuesday morning.

I was up at St Thomas’s on Wednesday and Thursday for more ECP. Uneventful – no dizzy spells or fainting, and I left in good time to get the train back home!

The sun is again shining as I type – although it is getting cold, and don’t forget that the clocks go back one hour to GMT on Sunday morning! Time to put the heating on! (and get out the Winter Pimms!)

Onwards and upwards!

Tags: Snow

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And indeed it is a lovely morning – the sun is streaming in through my study window as I take a quick break from my next piece of coursework. However it has been a few months since I last posted a picture of Olivia – now 21 mionths old! One of the problems is that she is so lively it is difficult to get a good photograph of her, but here are a couple I took earlier this week, on Monday, just after Felicity returned from her trip to Uganda.
The week has been tinged with sadness after the news of Elspeth’s death last weekend, but I have been keeping her blog up to date and I will be going up to the funeral on Monday.
I have finally succumbed and created a Facebook account – interesting technology, although I’m not sure that for the majority of my use it will replace the telephone or e mail – still, got to keep up with things!

No news from the hospital about the PET scan, so on the basis of ‘no news is good news’ I am cautiously optimistic.

I am once again pondering the future of this blog. While I still enjoy writing it, it has moved away from its original purpose of keeping everyone updated about my treatment and the subsequent recovery, in recent months. Does it still have a purpose? I’m not sure, although I’m receptive to any comments!

Onwards and Upwards!

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As I look out of my window this morning, the mist is just gently drifting in the trees at the bottom of the garden! Not sure if there is much mellow fruitfulness left though, as we seem to have had a few deer getting in from the fields behind.

It has been a quiet week although one tinged with sadness. I had been planning to go up to Glasgow on Saturday to see Elspeth, a good friend from LeukaemiaCare, and one of the training team. Sadly she died on Saturday morning, about eight hours before my flight was due to leave. She had been ill for some time, but it was only 10 datys ago that we had had a very lively conversation on the ‘phone. The link takes you to Elspeth’s blog, and the many comments that have been posted there.

Felicity returns from Uganda tomorrow. She has been out there with her brother who is involved with supporting a school there. Meanwhile neither Rachael nor myself have starved, and Felicity’s mother is settling into her new home about 20 minutes away.

So although a week with sadness in it, there have been some good and positive aspects too.

Onwards and upwards.

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I can’t believe another week has gone by, however the time has flown by. Felicity went off to Uganda on Friday, and her mother completed her move into her new house on Monday. I went up to St Thomas’s for my next session of ECP on Monday, and also had a check up at the dermatology clinic.

Monday’s session of ECP was OK, apart from the last collection cycle. I am on a ‘large kit’ which means that the machine takes 3 lots of 250ml of blood for processing, but during the third cycle I felt really faint and woozy, and my blood pressure dropped! It had been low to start with, perhaps because I was a bit dehydrated. Anyway, I soon recovered and went off to the clinic.

The feeling is that I have responded well, my mobility is a bit better and so after the next session I will be going up monthly. The feeling is that the progression of the GvHd has stopped and that further treatment will keep it under control and may reverse some of the damage done – so I may get more mobility back. I can certainly stretch much further.

Tuesday’s session was uneventful, except that I was back on a small kit – six lots of 125ml blood, so it took a bit longer to process.

No news from the PET scan, so on the basis of no news is good news…

Onwards and Upwards!

Tags: Diving, ECP

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Off for PET scan number 22! (I had to go back over some previous posts to check – and they were interesting – and scary – reading!) Sadly Margaret, the centre manager, was away, but the procedure is pretty routine – injection of the tracer, rest for 90 minutes, then under the scanner. One thing I did notice was that I was unable to lift my arms up over my head which is the usual ‘pose’ for the scan. This was tangible proof of some loss of mobility, however having my arms by my side was a lot more comfortable.

I have been suffering from a bit of a cold and a sore throat, so before the scan I rang the day unit at Guy’s to see if I should go over. However my notes are at St Thomas’s at the moment, so I was advised to go up to the day unit at St Thomas’s. It was quite pleasant going back as all my initial treatment was there, and I saw Debbie, one of the nurses who looked after me on Samaritan ward. Sadly all haemotolgy is moving to Guy’s and the day unit will be closing. It isn’t in a very good location as it is surrounded by laboratories, and the consulting facilities are limited – but the views are good! I was seen by a new (to me) Doctor, Jenny, who pronounced my lungs clear, but prescribed some Co-Amoxiclav (an antibiotic) as a precaution.

So a quick trip to pharmacy and I was on my way home. Now I have left the Navy, I pay all my travel and prescription costs – so first thing this morning I was buying a railcard, and I am looking at the pre-payment certificates for medicines!

I expect to get the results on my next routine visit – unless there is anything untoward, when I expect i will get a phone call!

But in the best traditions… Onwards and Upwards!

Tags: PET Scans

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Well I had thought that things would be quite quiet – but far from it! The main focus has been on looking for some gainful employment, and I have had a couple of commissions for some computer stuff. Small beer, but its a start, although at the moment I am really looking for some short term contract work in the IT field. I have also had a touch of laryngitis and a bit of a cold, which now seems to be subsiding!

I spent a short weekend with my parents, and went to a school reunion dinner. My year was under-represented (just me!) but there were several people from other years that I know, so it was a pleasant evening, and good to see Mum and Dad.

And that is it! Tomorrow I am off to London for the PET scan, I think number 22! If time allows, I may pop into the haematology day centre just to tell them about the cold, but I think it is clearing up on its own.

So – Onwards and upwards!

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Today is the last day of my terminal leave from the Royal Navy. Strange to think that tomorrow I will be a civilian! But is has been great fun, and as one door or chapter closes, another one will open!

On the more mundane, I also had another two days of ECP, much faster than the earlier sessions as I am now on the ‘large’ kits that take more blood per cycle, with fewer cycles. However again my trip home was delayed – this time rather tragically by a fatality on the line at Earlsfield station, on the main line back down to Winchester. However I did eventually get a train out, and Rachael was able to collect me from the station (payback after years of ferrying her to and fro!)

The weekend was quiet(ish). I did lend some moral support to Caroline and Gabor at a local fund raising function (for a youth football team) but it was a bit dire, so having bought the obligatory raffle tickets, we bailed out to our local pub, met up with mark and Sue and had more nachos! I am getting better with spicy food, lots of jalapeno chillies, which I managed without too much difficulty. I used to be very fond of Tex-Mex, particularly fajitas, but I doubt that I could have managed them over the last three years. Perhaps it is time to try again.

So, on many levels this time, … Onwards and Upwards!

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Well it is certainly sunny down here,although there is that autumnal chill in the air!

I have been at home most of the week, although quite busy with one thing and another. The insurance claim from the accident three weeks ago is still rumbling on, and theere have been one or two other projects to work on. These include new ventures after my retirement date – next Tuesday – and include setting up a company as a vehicle for IT consulting and also some training activities. Still early days yet though. However I did go to a Breakfast meeting of Business Networking International On Wednesday – very interesting concept.

I went out for lunch with Mark on Friday – good to get out for a breath of fresh air and to relax a bit, and the garden lawn has been scalped – it must be over a month since it was last cut – it has just been too wet.

Felicity is away this weekend, helping her mother prepare to move house, and then on Monday I am off to London for some more ECP. I have also had the date for my next PET scan – 1st October, so lots happening – except on the job front!

Amnd for those that like the esoteric, yesterday was International Talk like a Pirate Day – Me ‘arties! (or the Bristish HQ – here)

Still, Onwards and Upwards!

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Friday was quite quiet, but we went out as a family to a local restaurant to celebrate Rachael’s birthday. Somewhere we haven’t been before. but if anyone is interested, try The Hurdles – it was very good! The younger members of the group went into Southampton afterwards while we went home!

Saturday was quiet, but in the evening friends Mark and Sue, Caroline and Gabor came round for a relaxed supper. (Gabor is the driving force behind The Electrical Language Podcast which you can also download via I-tunes. Give iit a listen!) But I digress, last night we we had an Italian theme, lots of antipasta – which I mention only because some of it was quite spicy but caused me no problems at all. I have to say we had a smashing time! (Gabor – it was an Italian theme, not a Greek one!) 🙂

Onwards and Upwards!

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Hot on the heels of Vicki’s Birthday last Sunday, youngest daughter, Rachael, celebrated her 18th Birthday yesterday!

However before that I was up in London for another two days of ECP. A slight change in procedure on the second day because as my weight is creeping up (10st 4lb) I have a greater blood volume, so I have a slightly different ‘set’ for the collection. The enables the machine to collect 3 lots of 250ml of blood, rather than 6 lots of 125ml so the procedure is slightly quicker, and supposed to be more efficient as the centrifuge is bigger. It certainly seemed to be about 30 minutes faster.

Yesterday I went into the office for the last time to clear my desk, and to hand in identity cards and so on. I still have another couple of weeks of paid leave to go, but to all intents and purposes, I have now finished!

Today I was back up at Guy’s for another check up. All seems well, no lumps or bumps, liver working well, however it does seem that my kidney function is impaired, and that will probably be permanent. No cause for alarm as it is only slight damage, but probably the result of the chemo and possibly from when my blood pressure was low. It also seems that my overall immunoglobulin levels are low – again no immediate cause for concern – but something to be monitored, and it looks as if I will need another pneumococcal immunisation as those anti-bodies are still quite low.

However the highlight of the visit was seeing fellow patients, Jean and Andy. Jean, you may remember, had her transplant at the same time as me back in January 2006. She has had her trial and tribulations over the last two years, but she was looking really well – it was great to see her! I see she has posted a comment on the previous blog entry – thank you Jean! Andy, who had his transplant after me and who I got to know through the blog, was also looking well and was on good form! And both of them had news of our other transplant patient, Mark, who is also doing well! Great news all round!

So… Onwards and Upwards!

Tags: ECP

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