Peter’s Hospital Diary

Phew - busy week! First thing on the agenda was to complete my coursework. which should have been submitted last Sunday. However I was given a week’s extension while I was in hospital, and I finished it this evening. The other activity has been the preparations for the new job, which I hope will be starting on Wednesday. I have been sorting out the last few details, and now just need to sign the contract (initially three months) and I am hot to trot! I shall be commuting daily initially, but as it is a 150 mile round trip, I shall be looking for some short term accommodation.

Tomorrow I am up in London for two days of ECP, and also to have my cold monitored. I am still a bit snuffly, but I hope it isn’t anything serious - don’t need any show stoppers at the moment!

So lots of changes and new things to do - very much Onwards and Upwards!

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Back home again, and in fact I was actually discharged on Monday, and arrived home in the evening, but yesterday seemed to go in a haze of catching up on the last week, and I felt surprisingly weak, so I didn’t get round to the blog!

Many thanks to Mark for posting the update, I was looking for available wireless networks, but couldn’t find any!

The stay itself was uneventful - a bit of hydration, a couple of big doses of imunoglobulin to give my immune system a boost, and three lots of drug given by a nebuliser (lasting 2 hours a time) a day to actively fight the virus!

It felt really strange being back as an in-patient. I was in a side room on Hedly-Atkins ward - opposite Samaritan where I had the transplants. I suppose it felt odd because the last time I was in hospital for anything like this was the trip to Southampton - nearly two years ago - and all that happened around that time, and I suppose psychologically I have placed all that in my ‘old life’ and with new beginnings on the job front etc, it was a bit of a reminder! However it all passed uneventfully- the only worrying bit being that the staff came into the room wearing respirators and goggles to protect them against the nebuliser fumes that I was breathing directly!!

The nurses where great - it is always invidious to name names, but Ahmed and Suzy were great fun - but thank you all!

One other thing I noted was the food. I have been fulsome in my criticism of the hospital food system, but I noticed a dramatic improvement in the quality! Food now appears to be supplied in bulk and plated up on the ward, so it doesn’t sit there drying out on plates in transit. Much better!

While I was in hospital, I had a phone call offering me a job on the basis of the interview I attended last Monday (2nd) which I have accepted and I start next week!

So on all fronts - Onwards and Upwards!

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Talked to Peter this afternoon and he is in good form. He dictated the following:

Feeling well, expect to be in for another 2-4 days. Tests tomorrow to see how well the treatment is going. Biggest problem is boredom. But the good news is that the food seems to have improved.

Treatment - nebuliser three times a day. Immunoglobulin to support the immune system while the nebuliser attack the bugs!

Unfortunately no internet access but I will respond when I am back home!

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Hmm - looks like I spoke too soon - just had Guy’s on the phone - I have a potentially nasty viral infection that needs urgent treatment - 5 days in hospital. Will post more when I know more or when I get back!

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I didn’t stay up for the US election (not something I had a stake in) but the predicted landslide happened, so we will see what the next few months brings!

On the domestic front. tme seems to be flying by at the moment - with quite a lot happening. Socially we had a lovely evening on Saturday - thank you Tim and Ingrid, although since then we seem to have caught some cold (possibly from Vicki, who has been suffering along with Olivia and Tom (although if course in my case it will be man ‘flu - another reason for not staying up!). I also spent some hours up in the attic fixing an overflow pipe, which triggered a few aches and pains working in the confined space!

Things on the employment front looked up at the end of last week, with an e mail on Friday saying that a prospective client would like to interview me on Monday. That seemed to go reasonably well, aklthough I haven’t heard anything since. However the big event was the trip to Guy’s yesterday for the check-up and the results of the PET scan - which was clear! Big sigh of relief, although I was telling myself that if it hadn’t been, I would have heard by now!

The cold/’flu was noted with concern, so I had the by now familiar NPA and an anti-biotic prescription. It also seems that my immunoglobulin levels are still low. Immunoglobulin is made by B lymphocytes, and while I have plenty of those, they don’t seem to be working that efficiently. They should pick up over time, but in the meantime I am going to have a transfusion of them to ‘tide me over the winter’. The transfusion takes about 5 hours and the effects last about 10 weeks, so I am going up next Tuesday. I wasn’t too keen on the idea initially, but I think that is a psychological thing - I am keen to get on with new things and this is a reminder that I am still not quite recovered! On the other hand, liver function markers were all good and generally I am considered to be in good shape!

I also saw Rachel, the dietician, (briefly) who was pleased to note my slow weight gain!

So all in all - Onwards and Upwards!

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Well it was certainly snowing on the M1 last night as we made our way back from Bletchley Park, home of the wartime code and cypher breakers. A really fascinating and enjoyable day out although it was bitterly cold. We spent the day there, but still lots to see, so we will have to make another trip. The photographs show the front and back of the reconstructed ‘Bombe’ - the large electromechanical calculator that enabled the initial settings of the enigma machine to be determined - by trial and error! What is now termed a ‘brute force’ attack.We also saw the re-constructed Colossus machine - really the first ‘proper’ computer used to break some of the other codes. This was in the museum of computing, which also held many examples of early computers, ranging from main frames, through to the famous DEC PDP series to the PC - including the Sinclair spectrum!

The journey back was pretty grim, lots of snow and heavy traffic, so it took nearly 90 minutes longer than expected, but just in time to watch “Spooks” - entertaining (but not very plausible) - but far removed from Bletchley Park!

On a sadder note, I got back to find an e-mail saying that my Godfather had died in New Zealand. He won’t be known to any of you, but a very kind and good humoured man that I remember clearly from childhood. He, together with my father, were probably the influences that got me interested in electronics and electrical engineering, so he had a significant effect on my life. He and his wife Eileen (and son Richard) emigrated to New Zealand when I was about ten, but he came back to visit in 1994 - coincidentally during a period when I was confirmed, and I was delighted that he could attend the confirmation service which pleased him greatly. He had been ill for sometime, but still very sad news.

I heard from Guy’s this morning - slightly alarming as it was the haemotology department, but it was only to tell me that the clinic days have changed, so my next visit is now on Tuesday, not Thursday!

So Onwards and Upwards!

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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!

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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!

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