Peter’s Hospital Diary

However, although we did have some torrential rain over the weekend (and a couple of short duration powercuts on Friday (one long enough to cause the web server to shut down)) we don’t seem to have had the problems that have beset West and South Yorkshire. At least the sun is shining this morning, but a quick stroll round the garden showed that it is very bedraggled. With a bit of luck the rain will hold off for a couple of days and all will recover.

Felicity came home on Saturday evening, after her week at Royal Ascot. Next event is the Henley regatta in a couple of weeks!

On a more serious note, I was reading the latest post in John’s blog where he describes his fears at finding a strange lump. I recognise those fears! There is always the feeling of continuously ‘looking over your shoulder’ in case something happens again. I am certainly (having had several relapses) very aware of strange lumps, and in fact about three weeks ago, I found one in my chest. Now I was pretty sure it was where I had bumped into the corner of the car door, and it felt different from the lymphoma lumps, and it was where there are no lymph nodes, so logically it probably wasn’t anything to worry about…. but…. those little ‘what if?’ gremlins still whispered in the small hours of the morning! By the time I went for my last check up, it had gone, although I did mention it to the team, but it was nothing to worry about! And I wasn’t worried, really!

Olivia came for a visit on Sunday, and here is one of the latest photos. There are some more here in the gallery (to return to the blog, go to the gallery home page and click on ‘Return to blog’ link.)

Finally, on the mouth front, things seem to be getting a little better. I have been very careful about what I eat, soft food, especially in the morning, and making sure I have a scandishake every day. I have also been very careful about applying the ointment (Adcortyl) to the affected spots. I have switched bacon brands for a less salty variety as a consequence I have managed a couple of bacon sarnies! (after a week of abstinence!) I am also trying to drink more (water!) as helps prevent sticky spit, which makes food less appetising and harder to chew and swallow. However my waist size is now 30″ - this time two years ago I was a 36! Last time I was that size was when I was 14!

Onwards and upwards (and perhaps outwards by a couple of inches!)

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Another week nearly gone, and I have survived being home alone! It actually ends on Saturday, but I am over halfway! Sadly I haven’t been able to survive on a diet of bacon sarnies - my mouth seems to have been worse this week, and eating has not been a pleasure! Breakfast has been limited to porridge (nice and soft) and my scandishake intake has been pretty high (in fact I have had to order some more). Evening meals have been OK (lots left in the freezer from last time) but eating them has been tricky. However I am applying the ointments (although I cannot use one because of the vaccination program) so I hope the situation will improve soon - particularly for next week when I would like to take part in the Leukaemiacare training programme again!

In the last post I mentioned that I was migrating PatientCrime to a message board format, but had some issues with password notification. This has been an interesting challenge, but eventually came down to the configuration of a program called sendmail. Sendmail is a Message Transfer Agent, a low level program that moves e mail from one machine to another. It is widely used on the internet and has been around for some years. However the advent of SPAM means that it has to be very carefully used, and I needed to configure it to send system generated mail to my ISP for them to forward to the end user. (Anti-spam precautions really preclude me from sending e mail out directly - few ISPs would accept it) Anyway, it has taken a while, but I think I have finally cracked it and did some final testing last night and today, so I think I will migrate PaytientLine this weekend. (The issue with system generated mail is different from that generated using clients such as Outlook or Thunderbird). There was (to get really tekkie) a problem with DNS lookups, which I never fully solved, but found a workaround instead!

Oh yes - and today is of course midsummer’s day, and the longest day! But as I pointed out last December (what a long time ago that seems) it is not necessarily the latest sunset or the earliest sunrise! (I can post more if you wish!!)

Other than that, all seems to be OK, so…

Onwards and Upwards!

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I think you get the picture, and it has been like that most of the weekend! However it was a good one - out for lunch on Saturday with Mark, (fellow blogmaster), Gabor (podcaster) and Mike (the fourth member of the gang) for Mike’s Birthday. I have discovered that as long as I drink beer before food, I am OK, but food irritates my mouth too much to drink afterwards! Still, I managed most of my meal and then headed back to cook a BBQ for Katie’s (middle daughter) birthday. I couldn’t eat anything though, after my meal out (partly because I was full, and partly because of mouth) although I did eventually manage a small Pimms!

Sunday went well - some new (smaller) clothes as a present from the girls, and more variable weather, and also doing a bit more converting Paytientcrime from a blog to a bulletin board. The importing of the data is complete, but in order to post anything on the BB, users need to be registered, and there is a snag with the mechanism that sends the user registration data out to new users. However if you want to look at the new board, yopu can find it here. You can register, but I may need to send out a password manually.

This week I am ‘home alone’ again as Felicity is now at Royal Ascot, running one of the hospitatlity suites!

Onwards and Upwards!

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It was another trip up to Guy’s yesterday for the routine check-up, and it was just that - routine! Not quite as much blood taken as normal (only half an armful) and nothing unexpected in the results. Haemoglobin hovering around 11.5, creatanine still slightly up, but not much different from last time, similarly with liver function. Next check up in 4 weeks.

However we did discuss the condition of my mouth, and the feeling is that the GvHd is borderin g on the chronic phase, rather than the acute, which may be why it is taking so long to clear up. While chronic GvHd can be a serious condition (see John’s Blog for just how it can be) it is still mild, but needs keeping an eye on. Of couirse while GVHd is present it is an indication that my donor lymphocytes are still active, and while they are active, they are on their ’search and destroy’ mission! Crack on lads!

While I was at Guy’s, I discovered that the lovely Linny (who lefyt 2 months ago had a baby boy last month. Congratulation! And congratulations to Clare (one of the nurses from Stanley Ward and the vday unit) who is expecting a baby next month!

I mentioned the PaytientCrime blog last time and how I wasn’t sure if a blog was the right format. I am in the process of setting up a Bulletin Board/Forum style site to see if that is any better. It is still in the early stages, migrating the data and posts across is quite time consuming, and in the process I discovered a bug in the theme for this blog - comments made in response to pages (those posts that appear top right) can’t be accessed. Not my mistake, but something I will try to fix.

I hope the new forum will be set up by the end of the weekend.

Looking out of the window, I see that we are getting the heavy rain that hit Yorkshire yesterday, it doesn’t look good for the BBQ we have planned tomorrow for Kt’s birthday.

Onwards and Upwards!

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Not much to report on domestically - we did some work in the garden on Saturday and Sunday morning (I say we - mine was very light work! 0 and enjoyed it on Sunday afternoon when the sun shone! Olivia came over on Saturday (with Vicki!) but she was a bit tired and fractious so no photo opportunities. I have done a bit more re-arrangement of the gallery, starting to subdivide the Olivia Album into month by month sub-albums. I’m not sure if it is an improvement though, as it makes scanning all the thumbnails a bit time-consuming, so I may go back to the previous style (comments please!)

Just after I wrote the last post, I went to John’s Blog which rather put my woes about my mouth into perspective. John’s problems were mainly caused by Chronic GvHd (with one or two other complications) and is a reminder of just how debilitating it can be (warnings that the team at Guy’s did make). However I initially found John’s last post a little disquieting as John has always been a fighter, and at first I thought that he was giving up the fight! However on re-reading it, I realised that I had mis-interpreted the spirit of it, as it took me back to my dark couple of weeks in January, and my feelings then. With hindsight I can see the difference between ‘acceptance’ and ‘resignation’. It is a fine line, but I see acceptance as being accepting of things as they are, it does NOT imply giving up, while resignation (to me) implies giving up! So I know that while John may accept his situation, (and so will move forward) I know he won’t be giving up the fight! We are all behind you! (Behiiiiind you…. - sorry - it isn’t panto season yet!)
So crack on John - and apologies for (briefly) doubting you!

Meanwhile there has been some activity on PaytientCrime with two comments from a PatientLine employee. they were attached to one of the earlier posts, but I have moved them under my latest post. He/she makes some interesting points. On the subject of paytient crime, I’m not sure that a blog is the best format for it, a message board/forum might be better, so I will be experimenting with that when I get a moment; the problem will be migrating the data across.

I have finally received my appointment with the oral team at Guy’s! It popped through the door this morning - and is scheduled for 12 July! My mouth seems a bit better today, but I have been treating it gently. This has paid off as I enjoyed a bacon sarnie this morning!

I’m still undecided about re-naming the blog - ‘Peter’s Diary’ is probably my favourite contender at the moment!

Onwards and Upwards!

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I had a good couple of days back down in Plymouth - it was good to return, although the reason was work related, but even the meeting went well, and I left on time to get back home in the early evening. As travel goes, it wasn’t that glamorous, but it is another small step in ‘getting my life back’! And it looks as if the lemon tree is also picking up again after its earlier hissy fit. It has lost some branches, but the new leaves look healthier. I’m not sure that we will get any lemons this year though…

I rather glossed over last weekend, but I happened to mention smoked food in the comments, and provoked several other food related comments, so as this blog has never shied away from talking about food…!

The occasion was a party at my next-door-neighbour’s house to celebrate their daughter’s 18th birthday. Like us, they like a BBQ (in fact they are far more prolific BBQers than I) but while I am all in favour of gas BBQs, Chris prefers a proper charcoal fire! (In truth I do too, but preferably in half a 45 gallon oil drum cut in half, top to bottom, but that makes it a bit big for a domestic event).

Anyway, to get on with the story, Chris has just a bought a smoker and having BBQ’d during the party, he decided to carry out his first ’smoking’ on some chicken pieces. I have to say that at the end of 2 hours, they smelled delicious, although as I had already eaten quite a lot, and my mouth was sore, I didn’t try it. However it did lead onto discussions about what else could be smoked. The obvious candidates are gammon, beef, and oily fish such as salmon, trout and mackerel. But cheese is also a contender, so I am looking forward to his next experiments!

I have to add that talk of food is still a mixed pleasure at the moment. My sense of smell is slowly returning, and my sense of taste is also improving slightly, but I still have to careful about what I eat as my mouth is still sore. It is slightly worse today after my stay away, because I had less control over what I was eating, so while I managed a pretty much normal diet, some of the rougher texture food has irritated my tongue again. Chairing a meeting (lots of chat!0 didn’t help either! I am also conscious of the fact that I am now a very slow eater, mainly because I need to cut food up into very small portions to make chewing easier. It is very frustrating! However, in the grand scheme of things, it is a small frustration and minor inconvenience.

This morning I managed porridge, but a ham sandwich for lunch was tricky, and I am half way through a scandishake (brought to work in a flask) However I do seem to be putting on a little weight and some of my clothes fit slightly better than they did four weeks ago.

I haven’t taken any new photos of Olivia, but I have got some that Vicki has taken. They have been added to the gallery. Incidentally, it is possible to jump straight back to the blog by clicking on the ‘Return to Blog’ link (in blue) underneath the description on the gallery main page.

I haven’t come up with any ideas for renaming the blog. I could (as Neil G suggested) drop hospital from the title, but as this blog was initionaly about my hospital and health experiences, perhaps not. Maybe just change the description - which was last changed in August 2006!

Onwards and upwards!

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The pictures of the garden looked so nice, I thought I would post another one! In fact there were a number and this spurred me on to add some more photographs to the gallery (which you can also get to from the top of the page). I have loosely categorised the topics and added some, of the photographs that have already appeared in the blog over the last 18 months (!) and in same cases added a few more. I will continue to add to it. Some of the photograph dates are wrong, but I’ll correct those in time.

And as the title sys, it is a sunny but windy morning down here. I have another vaccination later this morning, then into work for the rest of the day. I may be off to Plymouth tomorrow - work related and not quite as exciting as Washington (DC, that is, not Tyne and Wear!) - but it is a bit of travel!

Olivia is coming over this morning so I might just wait a bit and see if I can get another photo!

Next check up at Guy’s is a week on Thursday 14th so it is all pretty quiet! However, as Neil G pointed out, I spend so little time at Guy’s that the blog title is becoming incorrect! There have been some suggestions, any others would be welcome, although as it has chronicled my hospital and post-hospital experiences, I’m not sure I want to make too many radical changes! I suppose it depends on the direction the blog takes!

Onwards and upwards!

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And where has the week gone? Good question, answers on a post card please (or a comment!). I did have the Monday and Tuesday off, and spent the days pottering doing minor jobs round the house and a bit of light gardening - including cutting the grass. Then it was back to work for the rest of the week. And talking of gardening, here are some of the tubs I planted out a couple of weeks ago.

It seems I might have been a little optimistic about my mouth, which has become sore again. I think I might have just been too adventurous with some food, and my cheeks have become sensitive again! So it is back to the scandishakes and soft food for a while.

Other than that, there is nothing to report healthwise which I suppose is reflected in the lack of posting, and that raises the question I posed last July (before the relapse) of “Where does the blog go from here?” However I’m not going to ask that (no point in tempting fate) as I am not out of the woods yet! However in the absence of medical news, I might just comment on things that are occupying me or of general interest! And of course, pictures of Olivia!

So onwards and upwards!

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