Peter’s Hospital Diary

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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Sunday was fairly quiet, partly because the weather wasn’t that good and partly because we wanted to take things easy before the drive up to Caen for the ferry. However we did go to Segour Le Chateau, a tiny medieval village not far from the house. It was very picturesque, although it had an air of neglect about it. The chateau itself was partly ruined, and I suppose as the village existed to service the chateau, when it fell into decline, the village did too. However once a week it has an open air farmers’ market, where you can buy stuff – then have it BBQ’d on the spot. We didn’t go – it was too wet on the first Monday we were there, and yesterday we left. Maybe next time!

The journey back was fairly uneventful. We seemed to go a long way round, diverting up to Orleans and about 40 miles West of Paris, but although it wasn’t the most direct route, it was about 20 to 30 minutes faster, being mostly motorway. However I’m not sure the time saved was worth it in terms of fuel and tolls, so next time we will use the most direct route!

We arrived at the ferry in good time, had a bite to eat and embarked for the longer trip home – we arrived at the front door at about 11pm last night. We had a lie in this morning, but I am popping into work this afternoon.

I said that Mark and Sue’s house is a work in progress – evidence is here – while we were with them, they half painted the back – it looks much better! More paint is being brought out by the next set of visitors who arrived yesterday! (Paint is expensive in France!)

So an excellent week – many thanks again to our hosts!

Onwards and Upwards!

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It was a rather overcast day yesterday, so we went down the road (about 20 miles) to see the Chateau at Hauteforte. It is a splendid building, parts dating from the 16th century, although modernised and renovated over the centuries, the most extensive being the demolition of much of the old keep and baily to form the basis of a ‘modern’ chateau. The most recent forced renovation was in 1968 when a fire destroyed part of the building which has since been rebuilt and restored. It is a very imposing building, dominating the countrysidee, although I thought the older bits were the most impressive. The gallery shows more photographs, including the interior of a magnificent cupula on one of the remaining older towers. Photography was forbidden in the main parts, but the gardens were also very impressive, in a French formal style.

After visiting the chateau, we came back to the house for lunch, with some frinds of Sue and Mark who were travelling through on there way to the South of France. After they left, Mark and I went to the “Brico-Depot” – French B&Q (and owned by the same group!) for a few bits and pieces! Last night we went out for dinner!

Today is overcast, but it looks like brightening up, so we may go to another nearby medieval village this afternoon.

I mentioned that I had had some more photos of Olivia! Here are two of them! The rocking horse was mine when I was a little boy!

We leave early tomorrow morning for the drive back up to Caen to get the ferry at 5pm. It has a been a terrific holiday – thank you Sue and Mark.

Onwards and upwards!

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It was indeed a scorcher today! Mark and Sue had some work they wanted to do on the house, so Felicity and I drove down to Sarlat, a medieval town about 90 minutes drive away. The pictures are in The Gallery but there are a couple shown here. This one is of the interior of the Cathedral in the town, with Felicity in the foreground!
The Perigord region is famed for its distilled fruit alcohols, and we were surprised to find the mobile still outside one of the shops in Sarlat. It used to travel round to the farms in the area – distilling the fermented fruit juices! Sounds like a good job to me! Sadly we didn’t get a chance to sample the products – strong alcohol still affects my throat, although I had little difficulty with a beer with the meal in one of the street restaurants!
We continued wandering round, with a bit of shopping (some sun glasses for me and a few other bits and pieces) before we headed back to the house and a welcome dip in the pool – up another degree today at 25C! That was followed by a BBQ in the warm evening! I’m delighted to report that my appetite is still good, and the improvement in my mouth condition seems to be holding up – although the sausages we had on the BBQ were a bit too spicy for me!
Vicki has also sent me some photos of Olivia and Max! Space precludes their inclusion here this time – (although they are in The Gallery) I will post them here when I get home. And talking of Olivia, she has just cut her first tooth!

O&U!

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Another hot day today, and we were up earlier than normal for a run to the boulangerie for some croissants and pain-au-chocolat (no bacon sarnies though) and then after breakfast we went off to the picturesque town of Brantome – known as the Venice of France. Well, it did have a rather pretty river (which surrounds the town) but hardly Venice. However it was very pretty and we spent four or five hours there, looking round and having lunch. The photographs, as always, are in The Gallery. However the picture at the top shows our group, looking out over the river (apart from Mark – who is photographing the photographer!)

We stayed for lunch in the town – I really enjoyed Moules et Frites – Mussels and chips – with a beer and some Frech bread. Delicious!! We contined with a wander around the town, taking in an ice cream, before heading back to the house where we spent the remainder of the afternoon round (and in) the pool! (Taking care, in my case, to avoid to much sun!)

So another good day – Onwards and Upwards!

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And today has indeed been hot and sunny!

Yesterday was another wet day, in the morning we went to the local town (St Yrieix) to complete a shopping trip we started on Monday (but had to abandon because the shop didn’t open until the afternoon) and then in the afternoon, Mark and I went to the Bricolage (DiY) shop in Pompadour – dodging the rain showers.

However the weather cleared overnight, and although it was misty this morning, that soon burnt off and we went back to Pompadour for the local market. There are some more pictures on the gallery. Pompadour is the home of the French National Stud, and the Chateaux is a grace-and-favour home for the National Stud President.

After the trip to Pompadour we returned back to the house and uncovered the pool and spent the afternoon sitting round with a Pimms or two and taking the occasional dip. The weather got warmer as the afternoon went on and the pool warmed up by a couple of degrees – by the end ofthe day it was up to 24C – a bit cool for my liking, but still pleasant!

One other diversion was a bit of grass cutting – this picture shows Mark on his tractor – I had a drive later (pictures in the gallery).

My appetite is getting better, and more importantly, my mouth seems less sensitive. I don’t know if it the French air, the food, the folic acid supplements, the company, the steroid mouth washes or a combination of all these – but it is a welcome development!

So, as always, Onwards and Upwards!

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Well, we have arrived in France after an interesting journey yesterday! We arrived at the ferry terminal in good time, but on the way we noticed that the cigarette lighter wasn’t working. Not normally a problem as we don’t smoke, but we were using the socket for the GPS, and we needed that in France.

Anyway, we arrived in France and went off to fill up with fuel (diesel at 70p/litre!!) and at the same time have a look at the socket problem – which I thought was probably a blown fuse! First problem was that the fusebox bore no resemblance to the one in the handbook. However we persevered and took out what we thought was the right fuse – and the radio stopped working! So we put the fuse back – and the radio asked for a code – which we eventually found and re-entered. The fuse hunt went on, and eventually we found the right fuse, which had blown and we changed. We went to move off – and found that none of the instruments worked! We stopped again, and I discovered that I had removed a fuse and replaced it in the wrong place. Once that was sorted out we went off for a long but fairly uneventful trip. The weather was quite good, and on the way we had the roof down on the car and we arrived at Sue and Marks at about 8:30 last night. We would have been there an hour or so earlier, but for the faffing about with the fuse – and a few unexpected detours!

We ate outside last night – pleasantly warm. but it poured down overnight and it was torrential this morning when we went into the local towns of Pesac and St Yrieix. So it was a supermarket run only.

However the house is lovely – the top [photograph is the back of the house with the (covered) pool in the foreground. The bottom photo is the front. There are some more details here on Mark’s website. Restoration is a mammoth job – lots more to do, but an amazing amount accomplished!

And it so good to be on a proper holiday!

Onwards and Upwards!

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