Peter’s Hospital Diary

Certainly the weather forecast is not very good, and we have had some strong winds both this afternoon and last night – with more to come! I expect the blossom on this tree may be gone by morning! However, no power cuts (yet?) so we will see what the evening brings.

However the main reason for this post is just to pop up another photo of Olivia. It is a couple of weeks since I last posted one, and even in a couple of weeks I think you will see some change in her! She isn’t always quite as placid as the photograph might indicate, although as I write this, she has been asleep for about 3 hours!

We had a visit from university friend Tom, and his wife Carol, yesterday! Good to seee them again, we shared a flat and house for 3 years, and still remain friends (as with the two medics that we shared with. Somehow (?) Tom is of the opinion that I am eating lots of bacon at the moment (can’t think why) so he kindly brought a get well present of bacon and sausages! They were delicious for brunch today! Tom also remarked that I looked a lot better than when he last saw me, about a month ago, so it must be true!

Richard started a trend a couple of weeks ago with his sock images, so I thought I’d add mine to the collection – and here they are!

Finally, remember that the blog is best viewed using something like Opera or Firefox. You can download Firefox with the Google task bar from the button at the top of the page, or get Opera and basic Firefox from the links on the right. Both are excellent (free) alternatives to Internet Explorer.

Onwards and Upwards – and Happy Mothering Sunday to all mothers!

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As Richard has pointed out, it is a week since I last posted, but the major event was the trip to Guy’s yesterday.

It was a chilly and misty morning when I set out at the early (for me) hour of 7am to catch the train to London. Inevitably we were slightly delayed (fog on the line?) but I arrived only a few minutes late just after 9:30.

After having the customary armful of blood removed (which included blood for another chimerism test) I saw Orla, who is filling the role of Clinical Nurse Specialist in the clinic. I have known Orla a long time from her time in the day unit, so I was delighted when she thrust a hand at me with the announcement that she had become engaged at the weekend! Congratulations Orla! She had a look at some rough and dry patches of skin, but was uncertain whether it is GvHd or not, although the changes in my mouth might be indicative that something is happening.

My next stop was to see Rachel, the dietician, who was delighted to note that I had put on a couple of Kg since last time, however she did remark that while my diet seemed good, I could still do with a few more calories, so I have a new range of dietary supplements which add protein as well as carbohydrates. These are a new Fortisip range, and (to quote) “Not as gloopy”. I will try one today, although I feel rather full after my bacon, mushroom and tomato sandwich. (A little snack after a bowl of Special K.) Rachel also repeated the strength test on my hands (you squeeze a machine that tells you the power of your grip) and that had increased from about 25kg to 35kg on my weaker hand, which is further indication that my strength and stamina are improving. I had also noted that my walking pace was much faster while I was walking from Waterloo to Waterloo East, and I had taken the stairs at Guy’s, rather than the lift. That said I was pretty tired when I arrived home!

Finally I saw Dr Kazmi, accompanied by his two year old daughter, Sofia (he had problems with the nanny that morning!) He again was ambivalent about the evidence of GvHd, however his examination could not find any enlarged lymph nodes, so he thinks that the disease is under control, and as he said “We must keep our nerve and wait for the donor lymphocytes”. He sounded reasonably optimistic because we know that the disease is sensitive to the immune system because of last year’s response, so it remains a case of wait and see. However my next scheduled appointment is in four weeks, by when a firm reaction should have started. He is also going to book another PET scan for about six weeks time.

As I was leaving I saw some more familiar faces. First was the lovely Linny, who is leaving next week… to have a baby in May! I had suspected that she was expecting for a while, but hadn’t liked to say anything! Linny, if you read this, thank you for all that you have done and hope all goes well. I was one of Linny’s first patients at Guy’s – she started here about 2 weeks before I was discharged after my transplant.

I also saw fellow transplant patients Sarah and Jean. Sarah (of like2like fame) looked really well and I was delighted to see her. Jean also looked well, although her journey post transplant has been less smooth. Her chimerism tests showed that she was reverting back to her own immune system, and she has had donor lymphocytes which triggered GvHd which then went on to affect her liver. But as Isaid, she too looked really well, although she claims that it is the steroids she is taking to help control the GvHd!

I suppose it is a timely reminder that GvHd is not a trivial matter (although preferable to the alternative!) and of course John’s Blog is another reminder.

And talking of John’s blog, I note from his latest posting that he attended a “Question Time” recording in Newport! I didn’t see the programme (I had an early night after my London trip) but I shall look forward to reading about it!

Finally (at last??) I saw an interesting article about fruit juices in yesterday’s “Daily Telegraph”. No mention of Acai berries, but looks like more common fruit juices have a beneficial effect. Now if only the quality of Acai berry extracts could be guaranteed, (or the price dropped) I might be tempted – meanwhile, mine’s a Gin and Cloudy Apple Juice, or perhaps a Vodka and Cranberry!

Other than yesterday, the week was quiet. Garage tidying has finished, at last. It is frustrating though when a job that would normally take a day spreads out over nearly 3 weeks. I have also cleaned up the BBQ in preparation for the summer (OK, so it is going to snow on Sunday…) another job that took about 3 hours over three days rather than two hours in one go, but at least it is done!

So on that note….

Onwards and Upwards!

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On a serious note, those of you that live in the south may have seen a news item on Wednesday about Keiton Knight. an 8 year old boy who died on 1st march from leukaemia after a 4 year fight. Keiton was waiting for a bone marrow transplant, but being of Afro-Caribbean descent, donors are hard to find, and mixed races are greatly under-represented on the registers of bone marrow donors. Sadly he was unsuccessful, although his story raised awareness and many new mixed race donors were found through his story. Keiton is featured on like2like, a web site set up by a fellow transplant patient, Sarah, who is also of mixed race, but was fortunate in finding a suitable donor and is now in remission from acute myloid leukaemia. For those that are interested, here is a link to The Afro-Caribbean Leukaemia Trust which promotes awareness of the problems that mixed race patients have in finding donors and has more information about Keiton. And if anyone (whether mixed race or not) would like to become a donor, details can be found from The Anthony Nolan Trust website.

My apologies to those who were briefly barred from the blog during the week! As part of my campaign against spammers, I loaded a number of IP addresses into the site blacklist. However I was using a different method of extracting them (taking them directly from the blog database) and I took one or two legitimate IP addresses! I will be repeating the exercise again (there are currently 250 spam comments that have been caught by the filter waiting to be ‘dealt with’) so should it happen again, please e-mail me and let me know (you had better note that now because if you are locked out of the site, you won’t see the e mail address!)

Other than that, nothing else to report healthwise. My next check up is on Thursday, and that will be six weeks after the DLI! However on the food front, I have re-discovered something even better than bacon sandwiches… Bacon & Mushroom sandwiches! Bring on the Calories!

Onwards and Upwards!

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Really because there is not a lot happening on the health front at the moment! I keep thinking that there are signs of GvHd, but I can’t be certain! Certainly my sense of taste is changing slightly, but there is no sign of the thickening of skin that heralded GvHd last time – but it is only 5 weeks since the infusion!

My weight is slowly creeping up – I’m about 3lbs heavier, which equates to about a pound a week, a target Rachel the dietician said I should aim for. Other than that my stamina is getting better, and I am feeling stronger – although not quite ready for weight training!

It has been a while since I posted a photo of Olivia, not because I haven’t seen her, but there hasn’t been a lot of change (or perhaps seeing her nearly every day, I don’t notice it). However Vicki took a lovely one of her recently, and here it is! The feet aren’t hers, they belong to ‘Albert le blanc’.

And talking of feet, you may have seen comments by Richard, and I am indebted to him for this image… which also appeared here,

The new theme has generally received favourable comments. There were a few criticisms about the colour scheme and lettering, but these have been tweaked. However since it is a sheep motif, I thought these two images were particularly apposite. They are of course reproduced with due acknowledgement to the BBC, Arrdman Productions and anyone else who may hold copyright or intellectual property rights to them, but they amuse me and I hope they amuse you too! I like the one of Shaun loitering within tent!

Onwards and Upwards!

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Yes, I know that Spring doesn’t officially start until the equinox on 21 March (unless you are the Met Office, who start Spring weather records from today) but it has been a lovely sunny day here – in between rain showers – that it feels like April, so I am hunting down a Spring theme for the blog. I have found this one, but it may need a little more tweaking, and I haven’t seen what it looks like with IE yet, but it seems to display OK with open standards compliant browsers such as Opera and Firefox – and if you haven’t yet got round to downloading them yet from www.mozilla.com or www.opera.com I urge you to do so!

Not much change healthwise since Tuesday, apart from a slight change in taste, so we will see what next week brings! Meanwhile I must blacklist a few more spammer IP addresses – last week I accumulated over 1000 spam comments on the blog. None of them were published, the spam filter saw to that, but they take up bandwidth and distort the statistics, so I prefer to block them before they get to the system!

Still – Onwards and Upwards!

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Well after last week’s hectic round of visitors – and it was lovely to see you all – and Elspeth, thank you for the gifts – this week is rather quieter! The garage tidying remains a ‘work in progress’ – I can spend about an hour out there before I get tired, although the weather is so wet and miserable today that I think I will forgo that pleasure! The problem is that just as I think I am making inroads, I find another little glory hole that I can’t ignore!

Healthwise things seem a bit strange, particularly my sense of taste and smell. Unfortunately not for the better, and food smells a little less appetising than a couple of weeks ago. My mouth also seems more sensitive and while I enjoyed a pickled onion two weeks ago, I tried one last night and the vinegar irritated my mouth. On the plus side, I did enjoy a G&T at the weekend (thank you Elspeth for the gin!) but only after the tonic had gone a little flat. I think the newly opened tonic was too fizzy, and perhaps too acidic (carbon dioxide dissolved in water forms carbonic acid) for me.

The only thing I can think of that could be causing this would be the onset of GvHd. The same thing happened last year when I developed GvHd after the transplant. However I haven’t seen any changes in skin texture (yet) and it is only just 4 weeks this week since the DLI. Still, we shall see!

I was looking back over last year’s blog entries again and reminding myself about the GvHd. While it is to be welcomed as an attacking force against the lymphoma, it is not a trivial matter. My skin was pretty painful, and itched like mad, and those of you that follow John’s Blog will know that many of his current health problems are caused by chronic GvHd following a stem cell transplant to treat leukaemia. Still, better than the alternative!

So we continue to watch and wait, always remembering…. “Onwards and upwards”!!

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And I have just been looking back at the archives, this time last year I had also been to Guy’s – two weeks after I had been discharged – and I note that I had referred to bacon sandwiches again.

However, we are a year on, and so it was the well worn path again. I went up on my own by train, just to prove that I can, and I had no problems – in fact I even managed a little dash (about 20 yards!) to the train at Waterloo East. (In fact the station staff are so keen to get the trains away from there, I’m surprised they bother to let them stop at all.)

But I digress – how did the visit go?

Well it was a small clinic – I arrived at 9:15 for my appointment, and I was the first person there – the next didn’t arrive for about half an hour. The (only) doctor on duty was Rob (the specialist registrar) Linny is on holiday, the others were away, so Rob promoted himself to consultant for the day! It was good to see him, it’s been a while since we had a chat.

Anyway, the news was both good and bad. First the good news… Rob couldn’t find any enlarged lymph nodes, and as he put it, “with my current weight, they wouldn’t be hard to find”, he also remarked that my mouth mucosa looked a lot better, and that the delay in the healing of that little ulcer was probably due to the radiotherapy, but it should continue to heal, although it is slow. No sign of GvHd, but it is only 3 weeks, the average is about 6, and in some cases it can take up to ten weeks to appear, so back to ‘watch and wait’.

And talking of weight, after seeing Rob, I went to see Orla who weighed me, and this is the bad news, I have lost about 1.7Kg, so I had a chat with Rachel, the dietician. Fortunately she didn’t suggest a naso-gastric tube (this time) although she thinks I should have had one before the radiotherapy as she thinks most of the problems were caused by that. She does approve of my diet, but thinks that while I have enough calories to keep me going, as I become more energetic and active, I’m not eating enough to start putting on body weight, and for my height, I should be at least 69Kg, and preferably up in the high 70s. So her recommendation is to continue the supplements (scandishake – which gives 600 Calories) and try another one called Calgen, which gives an additional 400 a day.

The Calogen is described as “a long chain triglyceridefat emulsion” – mmmm sounds appetising, and comes in butterscotch, banana and plain varieties. The plain one can be mixed with other foods, the flavoured ones can be mixed with milk, the scandishake or drunk neat! 90ml gives the required 400 Calories.

I haven’t tried it yet, but as start, I supplemented my M ‘this is not just food’ &S lunch of a Duck in Hoisin sauce wrap with a toasted cheese and ham sandwich when I got home. Tonight we have cassoulet which is pretty calorie dense, so I’ll try the supplements tomorrow.

Back at the ranch, Olivia is visiting, and was in fractious mode again, although she eventually settled as is now asleep. Actually I fell asleep while I was rocking her pram, so perhaps my gentle snores sent her off!

So that is it for today – overall good news, so …. Onwards and Upwards!

(PS – Forgot to mention – another little step – I enjoyed a chinese take-away last night (but too soon for a curry!)

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And no obvious comments please about all being perfect tossers! However I have just enjoyed my pancakes!

I’m afraid no photos this time, although Olivia has been over a couple of times, but in fractious mode. (Poor thing!) However she is putting on weight rapidly and now weighs 10lbs!

Most of my weekend was spent building a newer, faster computer for Felicity – it isn’t the hardware building that takes the time, it is loading the software, and the updating it all. No ‘bleeding edge’ stuff here – I’m still using Windows 2000 – but my disk is an original, so there were several hundred megabytes of service packs to get, then the set up and migration of the data from the old computer. Funny to think that downloading all those upgrades can be done relatively quickly now, thanks to broadband connections. It was only 6 years ago that I was downloading a 24 megabyte file over a dial up connection which then went via a satellite link and it took nearly 8 hours! The satellite link itself had less bandwidth than my broadband connection today! I think I had a connection speed of about 26Kb/s, 100 times slower than my broadband connection!

Still, Felicity’s computer is now complete. I then repeated process (which took another day) on the old one and gave it to Vicki to replace her very old and slow one. It is so slow that there is visible lag between moving the mouse and the the movement of the mouse pointer!

This week is a visitor week. Yesterday I received some financial advice about my pension arrangements and general finances. He is totally independant, so no hard sell, and he left me reassured that my financial arrangements are fairly sound.

This morning I had a visit from an old childhood friend, Gill whom, along with David (who has been mentioned in the past) I have known since I was five years old! Tomorrow my sister, niece and nephew are visiting, and on Thursday Elspeth from Leukaemia Care is visiting for a couple of days. She is arriving in the evening as I have the appointment at Guy’s on Thursday morning.

I was reading John’s Blog earlier – he remarked that he hadn’t mentioned his health for a while (although he has made several other interesting observations about health issues in general) and I am in a similar situation – nothing to report. However I did have my first shave for about six or seven weeks at the weekend!

So on that note…. a rousing chorus please of “Onwards and Upwards”!

(Hmm – I feel the need for another pancake…)

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…in which case the crowd must be pretty bored! However thank you for the accolade, and apologies for the delay – I seem to have been very busy this week! However as way of appeasement, here is a photo of the other side of the generator, with the connection panel above it. The plugs at the end of the blue lead plug into the generator and the house, with an RCCB (left) and a padlocked isolator (right). This means that It requires a deliberate act (removing the padlock) to use the cable, so reducing the chances of an accidents with one plug put into a live socket, making the pins at the other end live.

It has been a busy week, with several visitors, mostly local friends. In between visitors I have been making room for the generator in the garage, and sorting out some rubbish. It was a slow process because of my condition, and it still isn’t complete, but I have made a start. The problem is that after a couple of hours of sorting things, I need another two hours rest – still, I console myself with the thought that it is building up my strength. Over the last couple of days I have been building a new computer for Felicity. Building the hardware is the easy and quick bit – the time consuming bit is loading and configuring the software, but it keeps the brain cell(s) ticking over. It is more or less complete now, I just need to copy over the data.

By the time Wednesday arrived, I was ready to conduct a test to see what the generator would power in the house. It passed the acceptance criteria of powering the two fridges, two freezers, central heating and essential lights, and in addition it was also powering (via UPS) two computers. It then went on to power the microwave as well, although by that time it was struggling, and the lights were dimming. In practice the computers wouldn’t be a priority (although after the comments, maybe the blog hosting computer might be…).

We spent Valentine’s Day in, and I had the first steak for some months – delicious – eaten with a red wine and mushroom sauce, side salad and chips! I enjoyed a glass of red wine too – again the first for some months.

I was supposed to go to Guy’s on Thursday, but as nothing much has happened health wise, I postponed it until next Thursday. However we did have a visit from Helen, a MacMillan nurse. This was arranged about 3 weeks ago, when things were looking bleaker, but it was a useful chat. This morning I had another visitor from Andrew, another friend of ours.

Although I said that nothing much is happening on the health front, in the last 24 hours I have noticed that my mouth seems to have become a little more sensitive. We had a mild chilli – so mild that Felicity said she couldn’t taste it, but my mouth could sense it! The same was true with worcester sauce on cheese on toast. I have also noticed that my hands seem to have become very dry. Now that could be because I have been outside a lot, or it could possibly be the start of a hint of GvHd – although it is only two weeks since the DLI, so it is a bit early. I shall be examining my palms daily!

And to finish off, a couple of recent photos of Olivia! I haven’t taken any more video yet, mainly because at the moment she is either sleeping or a bit squawky, but I will do some more at an opportune moment!

So to conclude, thank you for your comments and concern, and … Onwards and Upwards!

Tags: GvHd

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I’ve just realised that it has been a few days since I last posted – just shows that I have been keeping busy! However first things first, and here is a recent picture of Olivia on her playmat! I have also been experimenting with some video, and my first attempt is here. It needs either Windows Media Player or any application that will play .avi files. The feet at the end are NOT Olivia’s!

And the final one of Olivia is this one, with Felicity.

So what have we been doing for the last four days? Well a lot of it has been to do with Felicity’s new venture, Wedding and Event Planning, and the current project which is organising a wedding fair for our church (on a ‘no fee’ basis) to get some experience and publicity. There have been some links on this blog for a while, but the main web site is here.

Although I am getting more active as each day passes, every so often something happens to remind me that I have a long way to go. I am certainly stronger in mind, and I can do more than I could four weeks ago – such as push round the vacuum cleaner, but every so often, something acts as a reminder that I am still physically quite weak. The obvious sign is my weight and physical appearances. The fact thatot a problem, and we carried it between us off the van. Easy because it was at least 12 1/2 is a bit of a give away, and looking at my arms and legs, it is clear how much muscle wasatge there has been. Then trying to run up stairs is a no no, although I can now walk up reasonably quickly, I know that I have done it! And that shouldn’t really be a surprise given that my haemoglobin was only 9.5 at the last blood count – better than the 7 that I was admitted with at Southampton, but still below the normal range of 12-18. (My haemoglobin always was at the low end of the scale though, in the days when I was a blood donor – I think I am severely overdrawn at the blood bank these days) So gently does it!

Another reminder came on Friday. We live in a rural area and our electricity distribution is via overhead cables. These are prone to failure, particularly in bad weather and we we get about two power cuts a year with the last one during the gales in January. With two freezers and two fridges, it is always a bit tense, and so on Wednesday I ordered a generator to act as a stand-by for the house. It is only a small one, about 4KW, and will run off propane or petrol, and provides enough power to run the fridges and freezers, lights and the central heating pump. I have included the photo for the boys to look at – the girls have Olivia!

Anyway, fantastic service from Edge Technology when I ordered it on Wednesday morning. They beat their advertised price, got it from the manufacturer, did the propane conversion, and got it to me within 48 hours! So it arrived on Friday morning in the back of a white van. Now by coincidence, it weighs almost the same as me, so the driver needed a hand. Not a problem, and we carried it between us off the van. Easy because it was eleveated. But once it had been lowered to the ground, could I pick it a couple of inches to move it? Not at all – I just don’t have the upper arm strength. We did eventually move by placing it on wood skids, but it was a bit scary to have another demonstration of physical weakness.

On Saturday afternoon our friend and vicar, Peter popped round, and then it was generator commissioning time. It works well, and the only bit left to do is sort out how it connects to the various appliances.

The big event of the weekend was Olivia staying with us on Saturday night! We decided that it would give Tom and Vicki a break if we looked after Olivia for a night, so they could catch up on their sleep – so she came round yesterday afternoon. She was as good as gold – she slept for three hours at a time between feeds overnight, and settled well. It brought back some memories, and while it was fun for one night, I wouldn’t like to have to do it every night! Parenting is a young person’s game – why some women want to become mothers at the age of 50 plus beats me – you need stamina – lots of stamina!

Now for a quick rant! (taking a leaf out of John’s Blog! This concerns a drug called Erythropoietin – or EPO. EPO is a hormone manufactured by the kidneys, and encourages red blood cell production – just what is needed to combat anaemia! It can now gbe synthesised in the lab, and if injected into patients, stimulates red blood cell production. “Perfect”, you might think. Unfortunately, the not-so-nice people at NICE don’t gree, and have declined to approve it for treating anaemia in cancer patients. True, it isn’t cheap, and many cancer patients become anaemic as a result of their treatment. But let’s look at the alternative, which is a whole blood transfusion. Blood isn’t cheap either. Quite a lot of blood is imported (usually from the USA) which is an expense in its own right. Once bought, it has to be screened, stored (and whole blood has a limited shelf life) and processed. More significantly, there are some conditions for which whole blood is the only possibility, surgery, acute conditions, trauma, to think of three, and using whole blood in ‘non-emergency’ situations when an alternative is available, seems ludicrous.

The blame cannot be laid totally at NICE’s door though, as their remit does not include “Quality of life” issues, and while the administration of EPO would considerably improve the quality of life of anaemic cancer patients, NICE cannot take this into account – hence their verdict of “Not clinically cost effective”.

There are several cancer charities – including LeukaemiaCare – actively campaigning for this to be changed. You could help by supporting them. Here is a link with a little more information about EPO and fatigue in cancer patients.

Right – rant over! I was out in the conservatory this morning, and I spotted this. A tub of spring flowers that has burst into life, and a welcome reminder that spring is round the corner! So on that note, Onwards and Upwards!

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