It's the weekend!

Yesterday we went to Sidmouth, ostensibly for a trip out, but of course we happened on a Waitrose where we shopped. The weather on the front at Sidmouth was nothing like it was at home - cold, very breezy, and truly bracing! I forgot to mention that I'd had my hair trimmed the day before, and my poor scalp took the full force of said weather.

Today held one other unpleasant surprise, in that my morphine patches were due for changing at tea-time. Unfortunately they ran out five hours early, which apparently can happen. I have often wondered what would happen if my pain relief ran out completely, and now I know. That will not be allowed to happen again. It was absolutely excruciating, but fortunately the replacement patches took very little time to kick in - about twenty minutes or so.

Thursday: a step forward or back?

We've had what feels like a roller-coaster day today; we changed over from morphine tablets to skin patches last night, in an effort to better control the pain in my leg. It certainly seems to have helped with pain control, but when I attempted to get in the shower I apparently passed out. I'm taking it very easy today, just to be sure. I'm also adjusting the dose for another painkiller to see if that helps. No damage was done to either me or the shower apart from a small loss of face on my part:-(.

Thanks to those who have already offered to provide lifts, or patient-sitting (me). I can already see that your offers will be well-used.

Wednesay Evening update

Sorry to have been quiet for a few days, although some of you may prefer it that way. In fact we have been having somewhat of a battle with the pain in my leg recently. We and our Hospiscare nurse have revised the pain control medication, but the pain has been increasingly intolerable, to the point where we finally met her today and switched the morphine delivery to skin patches, and we have added local control of the skin pain using gel. It will take a day or so to switch over and judge the effectiveness of the changes.

We have also been giving some thought to how we can make use of the numerous kind offers of assistance that keep arriving. For example, our youngest son, who has no transport and lives in Glastonbury, is doing his best to visit weekly. This taking up about four hours of Chris's time per week (two trips times two hours). It would be really helpful if folk could step in and help with this. It would also be good if people could help with drug pickup from the pharmacy when theyare in Axminster. Offers on either front are welcome.

On the treatment issue, we now have an appointment next Tuesday evening in London with a consultant oncologist specialising in early clinical trials for melanoma. We have no idea whetherthis holds any promise for my situation, but it seems worthwhile checking out, even though it is unlikely to change the end game.

Sunday, a day of rest?

Yesterday we went to Lyme Regis and took a leisurely stroll along the front, which took in an ice cream each. This is becoming a bit of a habit, but the problem is we know the road and its various potholes, whereas other places are not so familiar; of anyone knows the roads to other locations such as Bere or Branscombe and can vouch for their paving, please let us know and we can branch out.

Today we both seem to have been thrown by the clock change, and neither of us can keep our eyes open at 7 o'clock (was eight). Never mind, we've done some heavyweight Christmas shopping online. From a standing start we seem to have moved into an almost finished position on the Xmas present front! Scary or what?!

Tomorrow is busy too; we are off to Taunton to meet my sister and nephew at Brazz for lunch, and to collect our youngest in passing. Hopefully things will calm down somewhat after that. We are waiting for a medical appointment with another oncologist, but this may take a couple of days to filter through.

Thursday:- What have I been doing since Monday?

Tuesday went as planned - a heavy shopping day! Yesterday started early but slowly with Communion at 0930 - believe me, the Church is cooling down for the winter - must take a coat next time. The afternoon was taken up with PC stuff for various folk so I will spare you the detail.

Today was a BIG day, though I don't suppose that most of you noticed? Yes, it's true, Windows 7 was released on time, and my three copies arrived on schedule, despite the post strike. You really have to hand it to Amazon for meeting deadlines and generally running a tight ship. Unfortunately attempts to install any of the copies have been forestalled by 'stuff'; better luck tomorrow.

On the medical front, it has been suggested that I ask for and obtain a referral to a further oncologist in London who is doing clinical trials; I am very unsure about the wisdom of extending the treatment scope further as there must come a point where enough is enough; I continue to pray about it and to turn it over in my mind.

Monday off!

Just in case you thought I was taking it too easy...we met our youngest in Taunton today and had lunch at Brazz, the brasserie in the Castle Hotel. Unfortunately the main restaurant isn't open on Mondays, so we had to make do with the brasserie. That, however, wasn't at all bad - we had chicken liver parfait, goat's cheese with grilled vegetables, and smoked salmon with mixed vegetables, followed by pasta with mushrooms, burger, and Greek salad. We didn't look at the wine list, but I've no doubt it was acceptable.

Tomorrow we are taking him back to Glastonbury where, I've no doubt, we will have a look around Clarks' Village and other sales emporia within half a day's driving distance. I'll let you know how I get on in my next post.

Since my sister was the only person prepared to comment on my last post, I assume that the rest of you are all too well bred to say what you think!

I'm a lumberjack...

...and it was good fun! It turns out that one of our lime trees has honey fungus, which is great because I've never liked it along with a few others that I would love to remove. However Chris demurs, and she is probably right. Of course if it spreads...

In any case it had to come down as there was a huge mass of fungus around the base of the trunk, so, armed with my trusty chain saw, we set out to deal with the offending article. So if anyone wants some infected lime wood before Ray Venn gets his hands on it, just let me know.

A BIG Thank-you to donors

There's no real news about me today, so it seems like a good opportunity to say thanks for all the donations to Cancer Research. Having set a completely arbitrary target of £500, we have reached £713 including Gift Aid. You are all very kind. If it helps to prevent further experiences such as mine it will have been very worthwhile.

Wednesday: Home at last

We've made it home today in more or less one piece - that is if you discount me tripping over and wrenching my tumorous leg this afternoon. The pain is somewhat off the scale, even after a double dose of morphine, but here's hoping that it will settle down overnight.

Chris and I have been talking about what to say about my prognosis in the light of the gamma knife treatment. Naturally we asked my consultant (I seem to have graduated to a professor); his opinion this morning was that the tumours in my brain have reduced as a mortality risk, but that tumours elsewhere mean that the overall time scale may not have changed. In any event I have a follow-up appointment with him on December 9th which will involve a further MRI scan, and should enable us to check progress in my brain.

I'm told that I will feel exceptionally tired over the next few days, so apologies in advance if the blog goes quiet for a while. A bientot.

Gamma Knife surgery - what a breeze!

A breeze, that is, apart from getting up at 0530 to get to the hospital. After that and the usual messing around to give them the same personal details for the umpteenth time, the donning of the usual reverse robe which anyone except the wearer can tie,and the screwing of the metal frame to the skull. Ah, this last bit is different - the professor used four steel pins preceded by an ampoule of local anaesthetic per pin. Each one was screwed into the skull with considerable force, and much local anaesthetic was needed. The adjunct 'this will sting a bit' was never so true, but the frame once fixed was not going anywhere. Still, when the man was intent on frying my brain in seven locations, I was not about to complain. For those interested, the pins in question are just visible at the top of each vertical post on my forehead.

The planning MRI was done with me wearing the cradle, so that they could plot the co-ordinates precisely, shortly after which I was loaded into the linear accelerometer and treatment began. To my shame I can recall very little of the entire process, as I fell soundly asleep!

After treatment, I had to wait three hours on the ward before being discharged back to the hotel, where we relaxed for a another couple of hours before eating what for me was a healthy-sized supper of sausage and mash with a side salad. Needless to say, we were rather the talk of the kitchen, and had cause to meet most of the waiting staff during the course of the evening. On reflection, it did sound rather odd to have had brain surgery that afternoon, with nothing to show for it but a huge, relieved grin!

Monday 12th: Gamma Knife go-ahead

Had the MRI scan today, and saw the consultant. He confirmed seven tumours, widely spread, but of a manageable size. We discussed the risks of radio surgery which include potential loss of right-side peripheral vision and epileptic fits - but this is unusual. On the other hand although its not a cure it may serve to damp things down in the brain, so we decided to go ahead. I have to be at the hospital tomorrow at 06.30 for a procedure that will take the best part of the day. Hopefully I'll be back home on Wednesday.

Quite a weekend

Well, this is the weekend we go to London for my MRI scan at the Cromwell. They do something called 'Three phase contrast', which I suppose is superior to what we do down in the West Country. All I know is that there seem to be a lot of parking charges and hotel costs associated with it:-). We've decided to drive because we can take the wheelchair, although the leg support has just broken, and it should have been more comfortable whilst there.

The schedule is rather a whirl - we have the scan on Monday at 1430, then go next door to hear what, if anything, they can do. We think it will be rather sudden, but as the treatment is next day and takes most of the day including fitting a cradle to my head, there's no time for messing around!

It hasn't all been so frantic; yesterday we were invited to Michael and Sue's for a crab lunch with champagne - some excuse about being my birthday a while back! Still, who's counting when the food, wine and company are so elevated?

Full, Tired, Windswept and full of social history!

One of my over-riding impressions is how small the hotel and it's facilities were. Whether this is due to the limited land available, or the relatively smaller size of the Edwardian frame, or both, I'll never know. Nevertheless, this did nothing to reduce the pleasure we derived from it in the slightest: the baths were deep and hot, the food was ample and good and the room we had sported an easterly view where we could watch numerous brave souls kite surfing in what I can only describe as life-risking encounters with the elements.

I wasn't allowed to use the sea tractor and was confined to using the Land Rover for transport across, but to be honest this was probably more comfortable than a John Deere on stilts.

Dinner sported suitably pink beef and duck for yours truly, and an ample selection of things vegetarian for madam, who looked as beautiful as ever in a period-evoking Droopy and Brown evening dress. I, in a moment of weakness, had surrendered to black tie and tails despite a previous vow never to dress as a penguin again.

Even the negative points had their virtues; hotel sourcing policy specifies Free Trade, Organic, Local all appear on the menu. Unfortunately this means that Darjeeling tea doesn't make it (no, not because of 'local', sillies; they just can't find a Free Trade version. We ended up drinking an Assam-based mix, which is very dark and 'in the face'!

Today was another kettle of fish altogether; the weather for the return journey was completely awful; since we've been home we have hunkered down and drunk our sort of tea! (Darjeeling, mild). I've also managed to spoil the paragraph formatting, but I'm tired, so it will have to stay as it is...

It's our wedding anniversary...

...and we've just confirmed a reservation for dinner at the Burgh Island hotel. It is really on an island, which can only be reached at low tide or, if one is feeling extravagant, by helicopter! At other times one can use the sea tractor or a land rover.

Those of you of a certain age and above may recognise the architechture as the art deco background to much of the 'Poirot' detective series, starring David Suchet. It is a program that we watch to chill out some evenings, feeling it to be cleverly acted and wryly amusing.

This trip is a precursor to the visit next week to the Cromwell Hospital in London, where I will have another MRI scan and decide whether or not to have the Gamma Knife radiosurgery.

On a purely local note I am pleased to say that the Major/Owen team have finally managed to repair the church light half-way down the drive, with the generous assistance of many others along the way. We narrowly avoided defeat at the last minute by a long-life light bulb which had failed to live up to its name.

Update Friday 2nd October

It is with profound relief that I can confirm that the answer is indeed 42; no, not the answer to life, the Universe, and everything; the fact that I did indeed pass my driving test 42 year ago today :-)

Anyway, with that out of the way, I can tell you the outcome of my appointment with the oncology consultant today. In essence, he had in front on him the scans from Bristol, together with the recent CT scan done in Exeter. In comparing the two he could tell that there are been no rapid change in activity within the brain; equally, there is quite a lot of oedema present, and this would account for my recent period of unwell-ness and its control by steroids. It then becomes a question of deciding which are the most active areas of cancer, and focusing treatment on those. It is true to say that my right leg is most troublesome pain-wise, but this is manageable with drugs and by limiting activity. I asked the consultant how he saw the disease developing within my brain, and he surmised that at the present rate of development I would expect to experience function loss (mental capacity/movement/sight/taste) possibly leading to drowsiness and coma, and that this could take place over the next two to four months. Like other consultants he was keen to emphasise that this estimate could be spectacularly wrong in either direction.

We asked his opinion about the Gamma Knife option at the Cromwell and he would not commit himself except to imply that he would probably decline the procedure were he in my position, subject of course to the fact that I haven't been there and had the specific diagnostic MRI that they use prior to surgery.

Year end

The turn of year seems like a good target to have completed any handover of responsibilities that I have on behalf of the village, so if you think you are aware of anything that I'm doing for the community please let me know in plenty of time. I'm aware that the website needs a handover to Ian Wallace, but other tasks are fairly small.

I hope you will understand that Christine and I will increasingly turn our attention inwards, so apologies if we seem less than usually responsive.

Ta-ta for now.

George