Peter’s Hospital Diary

Where is the time going? Half way through the year already and it doesn’t seem 5 minutes since I was gingerly driving up snow covered roads on the way to work, and now we aew swltering in the heat!

Must be the heat confusing me as the next ECP isn’t for another 2 weeks because the six weekly regime has started. I’m really not looking forward to London in this heat – if the heat wave continues

Last weekend was busy – crossing the border into Wales for my brother-in-law’s ordination at Newport Cathedral, then back to Corsham on Sunday afternoon. I shall be back homefor the weekend, although Felicity is away at the Henley regatta, so I must start the next lot of coursework!

On another note, I expect you, like me, get a few e mails with subject lines containing “Urgent – please pass this on to all your friends immediately” or similar lines in the subject line. The e mail then goes on to describe something that “happened to friend” or “has been verified by Microsft/some-company/some police force” and so on.

These e mails are almost invariably hoaxes, so before forwarding them on, it is worth taking 30 seconds or so to enter the subject line as a Google search. This will usually bring up several web sites that will verify (or otherwise) the authenticity of these e mails – so far I have never seen a genuine one! They are just another variation of the old chain letters that used to circulate by post.

Onwards and upwards!

No Comments »

Life has ticked on – after the weekend away, I returned to Corsham for another week at work before going home for the weekend. That was uneventful, I did a little tinkering with the new web server (a different power supply) it is now using about 35 Watts – the previous power supply was taking 40, and the old web server was taking about 110W, so I have achieved a 2/3 reduction. Apart from that I did a bit of pottering in the wilderness that is the back garden. Actually not quite true as with some hired help, the wilderness has been beaten back into submission and it is looking quite good!

After the weekend at home I drove back to Corsham for another week. This weekend I am off to Wales for an ordination! (Not mine )

I am aware that the frequency of the posts has dropped off, but perhaps that is an indication that life is pretty much back to normal – it certainly feels good!

My next check-up isn’t for another week, and that coincides with the next session of the now six weekly ECP!

Onwards and Upwards!

3 Comments »

I can’t believe that we are half way through June already! The last ten days have been busy, with three days at work after the ECP, and then down to Devon for a wedding – Vicki and Olivia being bridesmaids for one of Vicki’s university friends. Vicki and Tom combined that with a holiday and booked a cottage for a week and we stayed there with them overnight.

The wedding itself was in Ottery St Mary, about 15 miles away, and the reception venue was the old Bishops’ Palace – with parts of it dating back to the 10th century.The village we stayed in was delightful. We had the church bells on Sunday morning, followed by a quick stroll across the road to the village pub for lunch, then we sat in the garden lazing away the afternoon! An excellent weekend.

Sunday was also Katie’s Birthday – Happy Birthday Katie!

Onwards and Upwards!

5 Comments »

Well, the last posting may have been overdue, but I was certainly under-due for my ECP appointment.

It all got a little strange when I turned up at the accommodation yesterday, and found that no room had been booked. But it was when I arrived on the ward to be greeted with “Nice to see you, what are you doing here?” that I started to get concerned! It turned out that my appointment (which I had had to move from last Monday, had been set for next Monday! Fortunately there was a spare machine and I had the treatment anyway.

However, it didn’t all run smoothly as this morning there was a problem with the machine I was connected to, and after a bit of messing about, I was put on another one, so the process was delayed by an hour!

I had expected this to be the last session, but it seems not! As it is a while since I last saw the consultant dermatologist, I had an appointment made on conclusion of yesterday’s treatment. As I have had such a good response, I am having some more sessions, at six week intervals with a review in 4 months, which will be after another three sessions.

I was delighted to see fellow transplant patient Mark on the dermatology day unit. He has had a tough time with GvHd after his second transplant, and at the moment is on steroids to damp down his immune system, along with immuno-suppressants. Not a good state of affairs, so he is having a course of ECP as a less aggressive (and more effective) alternative. We had a long chat about the treatment – it has certainly been very beneficial for me – so I hope all goes as well for him.

Finally… I have always been interested in finding out about the various risks that have been likely to affect me, and one has been the CMV infection. One of the requirememts for my blood transfusions is that it should be CMV negative. CMV (or Cytomegalovirus) is a relatively common infection, that usually only causes problems in people that have impaired immune systems. I found an article about it in Monday’s Daily Telegraph, and with a bit of Googling, found this article which I have also added as a link.

While on the subject of common infections, another is the Epstein-Barr Virus, associated with glandular fever and possibly linked to some lymphomas. There is more information here. Although I am CMV negative, I am EBV positive, along with the majority of the population!

End of cytology discussion… Off to Chippenham this evening!

Onwards and upwards! (and I’ve just noticed – this is the 400th post!)

15 Comments »

An update is long overdue, but first, as it has been quite a while since I posted a picture of Olivia, here is one taken a couple of weeks ago. She is very much a little girl, now aged 21/2 years old, and very mobile, very determined and quite able to make herself understood, with a vocabulary that is increasing daily!

I have had a busy two weeks since I last posted, finishing off some coursework for the last University module I completed, and last week, back at Cranfield for another module, with an exam at the end of it. I have also had some results from last year’s work, and while one result from coursework was disappointing, I had made up for it in the exam, so I passed it, and I think I have enough credits for the PgCert, so I am now working towards the PgDip.

Last week’s course was quite intensive, but the exam seemed to go well, and I should get some results in about six weeks. I am now waiting for the coursework!

I have also been doing some computer stuff at home, and I have built a new server for the blog, one that will use less power and be a bit quieter. I moved the webserver onto it this morning, and it all seems to be working well! The pictures show the internals as I was building it, the main feature being nodedicated processor cooling fan, and only one small case fan that just switches on when required. The other picture shows the two disc drives (2.5″) in a RAID 1 configuration, which also consume less power.

Healthwise things have been a bit mixed. While I have been feeling well, and putting on a bit more weight, I have had an occurrence of the sore mouth, coinciding with a meal out with some very tasty chilli nachos about 3 weeks ago. I have been taking some medication that I have used before, and it is much better, but yesterday I had a letter from Guy’s confirming what I had thought, that I had a slight infection, and suggesting some other treatment to clear it up properly.

And there is another milestone tomorrow when I go up to St Thomas’s for the last planned session of ECP. It has certainly made a big difference to my health, and the GvHd seems to be under control. However if it does flare up again, there is always the option to have another course of the treatment.

So really on all fronts, it is ‘Onwards and Upwards’!

8 Comments »

Not so much today, but it is ten years ago today that I first had an inkling that things were not quite right – little did I know then that life would never be quite the same again!

I was in America on a business trip, and when the business activities had finished, I stayed on to take a holiday, joined by my family. We were staying with friends in North Carolina and I developed a rash and itchy palms. Eventually I went to the local health centre and had one of the most comprehensive check ups ever – including blood tests and x-rays. The eventual diagnosis was that I had an enlarged spleen, indicative of several things, including (in passing) leukaemia. Whatever it was, I was advised to get it investigated, but I went away with a prescription for anti-biotics. (I wonder if he thought I had Lyme’s disease)

On the basis that rare things are rare, I took the anti-biotics, paid the bill (so glad I had medical insurance for the holiday!) and returned to the UK three weeks later and (because I was based in London at the time) I ended up at St Thomas’s for investigation and an eventual diagnosis of Non-Hodgkins Lymphoma – two years later re-diagnosed as mantle cell lymphoma.

And here, 10 years, two self donated transplants and one unrelated donor transplants later, I am! A journey not without its moments of suspense and drama! – And here thanks to the advances in medical science and the team at Guy’s and St Thomas’s, and also Southampton General Hospital! (And I did ring up that Doctor in the US to thank him!)

So to all those and those who have supported me over the years, a very big THANK YOU!

Onwards and upwards!

3 Comments »

I have just realised that it is over a week since I last posted, and I really don’t know where that week has gone! I suppose it has been quite busy work wise, and the weekend was quite eventful, catching up with things and taking Felicity off to the station on Sunday for a week at the Chelsea flower show, running one of the restaurants there.

The weekend was good, Saturday was another milestone birthday for the last of our ‘gang of four’ (this was Gabor’s of Electrical Language Podcast fame) so we gathered in the pub for lunch, followed by an afternoon in front of a DVD and then an evening with friends Sue and Mark.

But this all seems very normal, for which I am very grateful, and another indication that I am getting my life back!

Onwards and upwards!

3 Comments »

First of all, the photograph promised last week has arrived and shows (on the right) Elaine and Jon (Jon from University days) on our drive Saturday week ago. He hasn’t changed very much!

The week since I last posted has been fairly uneventful – uneventful that is until the weekend when another Wedding Fair organised by Felicity was held at The Royal Navy Submarine Museum at Gosport. Like the one held recently, this was a great success with over 320 visitors through the door to see over 40 exhibitors!

After that event on Sunday, I drove back to the flat for another week at work!

On a personal note, I have categorised all the recent posts as “Getting my life back” and reading the last few posts it really does feel as if life is slowly getting back to normal – hence the title. Of course ithat normailty isn’t the same as it was, but a new normality, so I am very grateful for that. So on that note, I am hopeful that I will continue “Onwards and Upwards”!

7 Comments »

Yesterday morning’s ECP went uneventfully, as usual and I now only have one more double session left! I was on a small kit again, but the time seemed to pass quickly and I caught an early train back home (complete with sunglasses) but as the sun set, I left to return back to the flat – only getting halfway there when I remembered that I had intended to go to the dive club – by then it was a little late!

So it was back to work today, and then I’ll be going back home tomorrow for the weekend, but it has a been a good and upbeat week, so we continue Onwards and Upwards!

8 Comments »

As the title says, today was a day of checks and ECP, but I did say that I would write about the Bank Holiday weekend.

Saturday was a lovely sunny day, so I got a few outside jobs done, starting with a climb up onto the roof to refix the TV aerial to the chimney. Its a long way up and it was quite odd trying to pass lashing straps round the chimney stack, but it all went without a hitch and while I was putting the ladders away, it was an opportunity to sweep out the garage, and also run up the generator for a test. Those who don’t know about the generator, I described it here and here. Anyway, it started and operated without any problems!

We had a visit from Jon and Elaine in the afternoon. Jon was the other flatmate at University, and although we are in contact, e mail, Christmas cards, it is over 20 years since we last met up, so it was good to see him and catch up. There is a photograph, somewhere, so Jon, if you are reading this in Spain, please send it!

We had a reasonably leisurely Sunday, but in the late afternoon drove up to Oxford for a birthday party, given by another friend from University, Faith. A great evening at it was really good to meet up with some other friends from University, Tom, Barbara and Dina and their spouses. We have seen each other from time to time over the years, (and I was at Tom’s birthday bash last year) but we again had a catch up. It is true that the friends you meet at University where you share the ups and downs remain friends for life. They all rallied round when things were tough over the last few years, and I guess their influence when we were younger has helped shape me – so a heartfelt thank you is in order.

We went back to the flat, and then met up again at Faith’s on Monday. A slightly smaller gathering, but the time flew by in very convivial company. So thank you Faith – a very good ‘bash’!

Today I was up bright and early for two days’ of hospital. It started in the lung function laboratory – no results yet, but it seemed to be OK. Then down for the haematology check up with Dr Kazmi. Nothing untoward apart from a slightly elevated platelet count, attributable to the recent cold. I also saw Rachel, the dietician. I have put on a little more weight (67Kg) and my grip strength at 38.8 Kg is only 200gr lower than average, so that is good too. Perhaps time to start a little gentle training, and who knows, perhaps diving might be back on the agenda …

I took my notes over to St Thomas’s, using that as an excuse to travel on the staff bus, where I happened to bump into my original consultant, Robert. We had a long chat on the trip across London – it has been a while since I saw him.

ECP was uneventful, day one today, with the second session tomorrow morning. But this is the penultimate session, the last one is next month and then it is just monitoring, although if the GvHd does flair up again, I can have more – but the important thing is that it is under control – and I must say I do feel good!

So… Onwards and Upwards!

3 Comments »