Peter’s Hospital Diary

It was a lovely sunny weekend, not without its events, but I can’t help noticing that there is that little edge to the air that heralds the arrival of autumn. Still, there is always the chance of an Indian Summer, and a long autumn is not an unpleasant prospect - evocative of bonfires of leaves, smoky afternoons etc. I suppose I need to think about bringing the lemon tree indoors! Still, the lawn was cut (I managed all of it in one go - perhaps more evidence of increasing strength and stamina, although my weight remains about the same) but on Sunday, I was cleaning my teeth when I felt a wobble - and a crown with a large chunk of tooth fell out, leaving some sharp edges! A quick call to to the dentist, followed by an equally quick trip soon got the edges filed down. This is a tooth that was scheduled for extraction anyway, and now that I can see the junk that came out, I can see why! I wonder if that was harbouring a source of infection that has been affecting my mouth. The mouthwashes that I picked up on Friday are now kicking in, although Saturday was a bit uncomfortable.

Vicki brought Olivia over at the weekend, there are a couple of photos, which I will post later, but Vicki also has some which I will put into the gallery when I receive them!

On the computer side, the migration to a RAID array went well. I have installed an array controller, so the array appeared as another disk drive (although it is two drives, mirrored) so the process was similar to the one I went through a few months ago when I replaced the last hard drive for a bigger one - but having done it once it was much easier! the new drives are SATA2, so the system should be a little faster and more responsive. The system was down for about 30 minutes over the weekend, and then about 90 minutes last night when I physically removed the old drive and physically installed the new ones (the longest part!) so apologies to anyone who got the “server unavailable” message.

End of geek speak! On the health front, things seem to be back on track with the mouthwashes now kicking in. The next haematology check up is on the 6th, with a visit to the oral clinic on the 20th!

So - Onwards and Upwards!

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Those of you that read the comments regularly will know that there are little subtexts going on, and a couple of weeks ago Gillian (a fellow campaigner for broadband) mentined riding on bananas, which prompted comments from Richard (another campaigner) asking for photos! Gillian has obliged, although she failed to send one of herself! Thank you Gillian - it looked to be good weather for it.

And it looks to be good weather this bank holiday weekend too. A chance to beat the garden back into submission and see if there is any fruit on the trees. The fruit tress seem to have done reasonably well this year, unlike the vegetable patch that performed miserably, not helped by the plague of rabbits we had this year!

I may also do a bit of tinkering with the webserver too. In geek speak terms, I am looking at replacing the singlee hard drive with a RAID array, using two drives, one mirroring the other so that if one fails, the other can continue working. (RAID 1) This is becoming more important as the computer is acting as a general server in the house, as well as hosting the blog.

On the health side it seems as if I spoke a little too soon about my mouth, which since I finished the course of mouthwashes etc, has become sore again. I have just got some more from my GP, and I will change my toothbrush in case that was a source of re-infection. But apart from that - all is well!

And finally, congratulations to Vicki who passed her driving test today - so Olivia will be even more mobile!

Onwards and upwards!

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A few weeks ago I said that I was wondering about renaming the blog - it certainlty seems as if it should be renamed “Olivia’s blog” as she features so much - and she is so cute!
My parents were down for a visit this weekend, the first time for a few weeks, and Vicki brought Olivia over. The pictures speak for themselves - Olivia with my Mother!

The weather was pretty miserable, but we did get out for a short walk on Sunday. I actually felt quite tired during the weekend, I have been slowly putting in longer hours at work - getting in earlier, but it is a warning not to overdo things (or perhaps go to bed earlier!

Olivia and Vicki were visiting today while I was at work, but Vicki took this photo (and a couple of others, which are in The gallery in ‘The Latest Oloivia Photos”. They will be moved to the August album at the end of the month

Healthwise my mouth has continued to improve. I have now finished the various mouthwashes, so I will be checking to make sure it doesn’t become sore again. However I am finding that my jaw aches, probably because I am chewing my food more thoroughly and the muscles aren’t used to it! My appetite is better too, although I am still having a scandishake with my lunch.

So we continue… “Onwards and Upwards”!

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And here we are again, apologies for the delay in writing this up, I’m not sure where the week has gone!

We had another family gathering last weekend, organised by Vicki, to the Bristol Balloon Fiesta. This was in memory of Felicity’s father who took the children there some 10 years ago. We started off with another pub lunch (The White Hart, Wrington, highly recommended!) before going on to the festival.
As you can see, Olivia also enjoyed her outing, resplendant in her new high chair! It is hard to believe that she is 7 months old! Soon she will be walking, and then the fun will start!

So off we went to The Balloon Fiesta! I had never been before, but it seems that it has changed a little in the last ten years. It was very busy, and the car parking was well organised, but the layout of the event wasn’t very good. There was a large funfair there, but many of the stalls were around the arena, so you couldn’t see some of the smaller events - it almost seemed as if the balloons were incidental to the day. However we had our picnic and the balloons were good when they eventually took off.
It was a good day out, and well done Vicki for organising it. (There are some more pictures in the photo gallery)

I said that it was hard to believe that Olivia is seven months old, and of course seven months ago I was in Southampton Hospital recovering from the chemo. The last few months have had their moments, but I can say that the improvement in my mouth in the last 3 weeks has been amazing. It is so nice not to have to worry so much about what I am going to eat, and to be able to eat food with some seasoning in! This week we had a (mild) Chilli con Carne which I managed quite easily. I think it is going to just take time as I work up to ‘full strength’ chilli! However I am going out for a curry at lunchtime.

Fellow LeukaemiaCARE volunteer, Elspeth, has also had some excellent news this week - the details are in her blog.

Finally, there is some more news about PatientLine - details at The PaytientCrime Forum.

So on all fronts - Onwards and Upwards!

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In fact I am tempted to use the stock answer to Parliamentary questions “I refer the reader to my previous post of…” as today followed the standard pattern of up early, Arrive at Guy’s, donate an armful of blood etc!

There was a slight delay though as I was supposed to have blood taken for a chimerism test, and that hadn’t been ordered, so rather than stick two needles in my arm, I waited until the order was done, then in to see Dr Kazmi. He was delighted at the news that my mouth is better, and thinks that it might be because the GvHd is settling down. As to what that means longer term he cannot say. It has gone on for a while, and I was technically in remission when I had the last DLI and so there is a possibility that the donor lymphocytes have cleared out residual disease, and that they will continue to act at a subclinical level as I should be producing them myself as required. However it is early days! Still he was pleased with the progress - and needless to say, so am I! - especially when you consider the conversations we were having last January, not a good time.

My blood counts are good, apart from haemoglobin, which is a little low, possibly caused by on of the antibiotics, but my CD4 count is a little low (CD4 is a protein expressed on the surface of white blood cells known collectively as T cells) so I cannot stop it yet. I also remain on other antibiotics as my immune system is still not fully recovered. So we continue to monitor things - next check up in a month, and perhaps another PET scan in two months or so.

Then it was in to see Rachel, the dietician! My weight was actually down a pound or so since last time, but that isn’t really significant - lighter clothes perhaps! More importantly my strength is improved, and she thought I looked generally ‘better’. Now my mouth is less sore, my food intake might improve too!

It was good to see two fellow patients - Sarah of like2like fame and a newcomer to this blog, Kieren. I didn’t get a chance to talk to Sarah, but she was looking well! Kieren had a transplant some years ago, and the last time I saw him was 5 years ago when we both appeared on “City Hospital” interviewed by Mathew Kelly. Kieren has been in remission for seven years after a second sibling donated transplant so it was good to swap experiences! He is back at work as a builder, in Kent, so anyone in North Kent needing building work doing, drop me a note and I’ll send you his details!

One of the side effects of the improvement in my mouth is that can eat ‘proper’ bacon sarnies! That is with a top and bottom to them - and tomato sauce no longer causes a problem! I am still drinking the food supplements at lunchtime, but as my sense of taste returns, I am finding that they are quite pleasant!

So very much.. “Onwards and Upwards!

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Somewhat busier than I expected too! You may have noticed that the blog was down for most of yesterday!

It started last week after we returned from France, when I bought a new Voice-over-IP (VOIP) phone. We do use VOIP, but the new phone has a cordless handset and can interface both to VOIP accounts and to the standard BT line, so saves having two separate phones. Anyway, installation went well and the IP side burst into life during the middle of last week. Anyway, I was doing a little system maintenace (that is on the home network etc) requiring a reboot of the VOIP phone. And that is where the problem started as it wouldn’t re-register with the VOIP provider, Sipgate.

A bit of diagnostic work showed that it was a DNS issue. DNS (Domain Name System) is the clever bit that converts an easily remembered domain name (like boraston.net) into a numerical IP address like 206.12.34.249. There are servers dotted around the internet and everytime you look up a web page, a request goes to a DNS server to get the real address. (Think of it as looking up your house name and getting the street address that it corresponds to). If you connect to the internet with a router, the router acts as a DNS relay, and forwards the DNS server address to the computer making the request. (All clear? )

I have had some suspicions for some time there had been DNS problems, but as it only affected a little used Windows machine, and I had applied a workaround, I hadn’t bothered to find the root cause of the problem. Now it was getting more important! Eventually I tracked it down to my router - which was a relatively new model when I bought it and had early firmware (the internal program that controls it) So time to upgrade the firmware - which I did, and the DNS problems seem to be solved. The responsiveness of the system seems to be slightly improved too.

We were out yesterday (details later) and when I came back I found that the blog was down. To cut a long story short, the firmware upgrade also changed the way internal IP addresses (those on my network) are allocated (using something called DHCP - Dynamic Host Control Protocol) and the blog server’s internal IP address had been re-allocated at 5am that morning so that the mapping from external (public IP address) to internal address was incorrect. That was eventually fixed so the server has a fixed IP address, and all is now back to normal!

I said that we were away yesterday. This was for a family gathering long postponed since Felicity’s birthday in June. We had a trip up to North Somerset (on the A303 - past the little village of Grately!) for the gatering at Felicity’s mother’s house, then on to an extended pub lunch. The photograph shows Olivia in the clothes we brought back from France! Hard to believe that she is now seven months old, and I don’t think it will be long before she is walking!

On the health front, my mouth seems a lot better. I don’t know if was the shock of the very spicy prawn dish on Thursday, the various mouthwashes that the dentist gave me last week, or the GvHd is dying down, but certainly my tongue is a lot less sore, as are the insides of my cheeks. I now need to teach myself not to eat ‘defensively’ (ie, in a way that protected my cheeks and tongue) and chew food properly. I tend to talk through clenched teeth too as that protects my tongue, so another habit to be unlearned.

While I am pleased at the improvement, if it is as a result of the GvHd abating, it raises another question - what about the underlying disease? have all the rogue cells been eliminated? Is my (new) immune ssystem still going to be on the look out?I guess there are no answers to those questions (although I will pose them at this Thursday’s check-up) so it will be a case of carry on watching. Still, I mustn’t get obsessed with it, but continue….

Onwards and Upwards!

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The only problem with going away is the return to work! Actually it isn’t that bad! I did pop in briefly on Tuesday afternoon, and then returned properly on Wednesday morning. However it is the holiday period so all is pretty quiet.

Last night a few of us went for a ‘quiet drink’ in Old Portsmouth. It was lovely and sunny - to start with, then the clouds gathered as the picture shows. The dark sky made a dramatic backdrop to the Spinnaker Tower. After a few beers (which I managed quite happily - a good draught beer - not too fizzy!), we ended up at a Chinese restaurant (rather than the traditional curry - thinking of my mouth!) It was very good - but unfortunately the first thing I took from the selection was a VERY hot prawn - hot as in cooked in chilli, which was painful and rather took the edge off the rest of the meal. However the company was excellent - Chris, Sheila, Julie (aka Jayne - of bacon and egg sarnie fame!) and Claire, Rory, Dave and Alfie.

It has been a busy week at home too. A slight plumbing emergency on Wednesday saw water coming through the bathroom ceiling - a joint had sprung a leak, but as they were push-fit couplings, it was easy to repair. Olivia has been under the weather too, with a rash - diagnosed as ‘a virus’ by the doctor.

On the health front, I had a letter from Guy’s waiting for me saying that I had a mild mouth infection and recommending that I started using a specific mouthwash - which luckily I had ‘in stock’. I also saw the dentist yesterday, and have some more mouthwashes and a double strength fluoride toothpaste! However they seem to be working as my mouth seems less sore - apart from when eating chilli marinaded prawns!

So a good week, and some more steps in getting my life back!

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