Peter’s Hospital Diary

It has been another busy week, with time ticking down until I leave my current job. However the years rolled back last week-end as we went up for the birthday party of one of my University friends, Tom, shown here on the left.
In fact there were four of us that shared halls of Residence, a University flat, and then a house during our time at Leeds University: Tom, Martin, Jon and myself. Sadly Jon and his wife Elaine couldn’t be with us, but Martin and Stephanie came down the next day for lunch – the first time we had met up in some 15 years. A great party (thanks to Tom’s children, who organised it, and Carol, Tom’s wife, who did the catering!)

It was the first time we had been to Nantwich and we stayed at a very old and picturesque Hotel, The Crown. Not a right angle in the place, and over 300 hundred years old. Our room had stunning rooftop views, and here are the stunning rooftops over which we had a view! However it was very quiet.
We also took the opportunity to stay with my parents in Birmingham, so all round we had a good week-end.

The rest of the week went quite quickly. I am on holiday at the moment, although I did have to go up to Bristol for a meeting, and then back for a dinner – my dining out – on Thursday night. I went into the office on Friday, for formal goodbyes, but there are still one or two loose ends to tidy up, so I will be in once more this week before I finally leave on September 23rd. My search for further gainful employment is making slow but steady progress, with the help of some recruitment firms, so a bit of finger crossing for that too.

And to round off a good week, we went to Sue and Mark’s last night for beer and chilli! The chilli was hotter than I expected – but not so hot that I couldn’t manage most of it – another sign that my taste buds are recovering and the mucositis is a receding memory!

And finally, today is Vicki’s Birthday – happy Birthday!

So on that note… Onwards and Upwards!

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A quick update on the week, most of which was spent up at St Thomas’s, having the next course of ECP. However the monotony was broken as Felicity and Rachael came up for the afternoon and we went out for a pizza in the evening – with my ‘Joe Cool’ 🙂 sunglasses on, which made reading the menu difficult! (I have to wear them for about six hours after each session to protect my eyes from UV radiation).

The pictures are of the two cars involved in the incident last week. Mine is above left, with damage to the rear bumper. It still isn’t back, the garage is waiting for the replacement moulding. The other one is the car that hit it. Don’t think I need say more!

This weekend we are off to a birthday party, calling in at my parents on the way. More of that next week!

Onwards and upwards!

Tags: ECP

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In fact it was quite warm and sunny today, unlike most of the week which has been mixed! However I have been at home, preparing CVs and the like, and arranging car repairs after someone collided with the rear of my car. As it is still in the hands of the Insurance Companies, I’ll say little about it, except that the damage to the other car was considerably greater than to mine!

Vicky and Olivia and Tom have been over, and Olivia seems to have made a step change in her speech – almost forming sentences, and much clearer words. Katie has been home too, and Rachael has been at the Reading music festival – and comes home tomorrow. Shower and washing machine primed ready for action.

We were out with Mark, Sue, Caroline and Gabor last night – ending up playing ten pin bowling – on a Nintedo Wii. I haven’t been much of a games console fan, but this was excellent – on my wish list!

Next week I am back in London for more ECP. I have also spoken to the diving medicine specialist – it seems that some drugs (particularly bleomycin) can increase susceptibility to lung fibrosis under high partial pressures of oxygen. Bleomycin isn’t a drug I have had, so unless one of the myriad I have taken causes a problem, I am cautiously optimistic!

So – Onwards and Upwards!

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There are some significant changes in my life happening soon, including a job change, but as part of the completion of my current occupation, I needed a medical examination! Actually a formal review of my medical history over the last few years. However, while I was doing that, I applied to retake my diving medical – you may recall that I tried that over a year ago, and failed it, which was a bit disappointing. However, I am delighted to say that I passed it this time, with quite a good result in the fitness test – the main thing I failed last time. (If anyone is interested, it is the Harvard Step Test) so another little psychological boost. However it isn’t all good news as the Doctor is reluctant to pass me as fit to dive because of all the treatment, but my notes are being passed to a diving medicine specialist for examination.

Other than that, this week was an ECP week, so I had my two days at St Thomas’s. I have also had a bit of a sniffle, so I dutifully took myself to the haemotology department at Guy’s for another NPA, and came away with some anti-biotics “Just in case”. It seems to be clearing up, but whether that is spontaneous or the result of the anti-biotics, I don’t know. maybe the results of the NPA will show something.

Olivia came over on Friday – quite a toddler, and very determined! If she wants to show you something, it’s a firm grip on your finger, and off you go. I must take some more photos of her!

So a good week overall, and another step Onwards and Upwards!

Tags: Diving, ECP, Olivia

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Well I might not have needed the chicken pox immunoglobilin, but there is a chance I might have got something else from the day unit – a respiratory infection! Over the weekend I developed a runny nose and a sore throat – bit like the one I developed at Christmas and the New Year.

So after the ECP yesterday and today, popped back to the day unit at Guy’s for another NPA and for a prescription for Augmentin, another anti-biotic. The cold (if that is what it is) seems to be getting better anyway, but given the situation, better to be safe than sorry!

As for the ECP, that all went well, and is now pretty routine, veins are good so it was a good couple of days! So… Onwards and Upwards!

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Our friend Marian came round for dinner last night so I was a tad tired when I set off for London this morning for my Immunoglobulin to mitigate the risk of catching chicken pox. However I arrived at the day unit only to be told that I wasn’t on the list! It appears that by the time I arrived at the clinic last week, the infected patient had gone, so the risk is considered so small that I didn’t need it! So I turned round and came home again!

Well, not immediately, I did call in for a chat with Tammy, the transplant scientist, who still has a few of my stem cells in her stem cell bank, and then on my way out of the hospital, I bumped into Dr Carr – the consultant who first treated me and supervised the first two self donated transplants.

I haven’t seen Robert for about 18 months – in fact the last chance encounter was when I was having the radiotherapy 21 months ago, so we had a chat – his comment being that “You don’t really want the Immunoglobulin if you don’t have to, its a bit painful – stick with the acyclovir” – acyclovir is an anti viral drug I am taking anyway to protect against chickenpox. Anyway, it was good to see him for a chat, and that, with the chat to Tammy, made the trip worthwhile!

The journey back was Ok, although I had to change at Winchester, where the police were out in force with a drug detecting dog. Marvellous to watch, and while I was there, detected about five people. Lucky I’m not on the cocaine mouthwash!

More ECP next week – onwards and upwards!

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Where did it go? I have been on holiday since last Friday, with the intention of knuckling down and finishing the last piece of coursework for this module – with some success – its about 75% done, but in going back over it, I found a few additional things to put in, so that was useful. However, it has been a lazyish week, not least because the weather at the weekend was so bad. However yesterday I went to see an old friend, Nikki, with whom I had lost touch, but now lives about 40 minutes away (great lemon drizzle cake!) and last night we were out for dinner at friends Peter and Lin and Janet.

But it seems that when I had my checkup last Thursday, there was a patient there who has subsequently developed chicken pox. The herpes zoster virus can be very nasty for people with impaired immune systems (like me) so I had a phone call from Guy’s on Wednesday evening asking me to go for some immunoglobin as a precaution, either today (Thursday) or tomorrow. As today as a bit short notice, I shall be going tomorrow!

So – onwards and upwards!

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Unbelievably, I have been back a week, but it has been fairly eventful one. After the weekend of BBQs, I was back at work for a day, and then up to London for another round of ECP. All getting routine now and no problems. I got home on Wednesday in time to go out for a few leaving drinks with some people from the office. I did stay out rather later than I anticipated, but it was a good evening.

This morning I was off to London again for my delayed haematology appointment. It should have been two weeks ago. I saw Dr Kazmi who was pleased with the way things are going. My weight is up by another pound at 10st 3lbs, steady progress! No lumps found, and we discussed having a PET scan (it is 12 months since the last!!) sometime in September. And luckily I had bloods checked on Tuesday, so I didn’t need to have them taken again today – just as well after last night! They are much the same as before – kidney function is about the same with creatinine levels much the same as last time. Liver seems OK too!

I also asked a couple of general questions – about my overall progress, given that it is nine years since I was first diagnosed and that Mantle Cell Lymphoma is a particularly ‘difficult’ disease. The answer though was as I expected – some patients do better than others – and there may be lots of factors involved – although he did say that he was worried 18 months ago (he wasn’t the only one!).

So perhaps it is better not to question why – but just be grateful that so far things are going well. 🙂

May that continue – Onwards and Upwards!

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Hard to believe that this time last week I was 7,000 miles away, looking at snow covered hills! I have pretty much got over the time zone change – I always find travelling forwards across time zones more tiring, but I have had a few fairly restful days. I am back at work tomorrow, although I shall be in London for three days having the next session of ECP and also a haematology check up. However the feeling of well being induced by the trip has continued!

The weather down here has been hot – we had a BBQ yesterday and this afternoon – almost too hot sitting out in the sun!

If you looked at the blog this afternoon, it was down for a while while I did a disk change. (One of the disks in the RAID array was reporting a fault) so I have installed a new drive (and a cable which looked a bit suspect) and I will test the disk later. I think it is probably OK and it was the cable at fault. (It took a bit longer than expexcted – because I was called to do the BBQ just as I had started taking it apart!)

Still, all back online now – time to take a backup!

Onwards and Upwards!

Tags: Computing, ECP

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I have ‘cheated’ a little with the last few entries – although the notes were written at the time, I have spent the last couple of days recovering from the flight (I always find going forward in time zones more tiring than going backwards) and writing the blog, editing the photographs, and reviewing some of the ones I took in 2000/2001 for inclusion!

I will be loading the pictures up to the gallery later today and I will also create a section for some of the older ones – but as there are over a thousand, that might take a while to sort! There is also a small computer snag (a disk drive) I need to sort out sometime, and a blog software update to apply. And I’m sorry the blog wasn’t available while I was away – there was a power cut at home and they all shut down!

It was a great trip on many levels. It was first discussed in Starbucks over 12 months ago, wen Angela met me in London after a check up. It nearly happened in May, but it finally came together and I am very grateful to Angela for arranging things and providing a room. On another level, I was delighted (professionally) to see how things had moved on, and the projects had developed. On the health front, I was very pleased to have made a 14,000 mile round trip, without difficulty – something I might not have contemplated 18 months ago. Better still, I was able to get about on two legs, repeating walks that I had done before – when I was really fit – in much the same time. And finally it was a renewal of many happy memories of places and people from previous visits – including Anya and Migs. And if anyone is interested this link goes to a couple of live webcams from Stanley.

I did have a tremendous appetite while I was down there – a combination of exercise, fresh air and good cooking – so I jumped on the scales when I arrived home – I have put on 1 1/2 lbs! – now just over 10 stone!

Next week it is back to St Thomas’s for some more ECP, but it is very much “Onwards and Upwards”

Tags: Falklands, Holiday

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