George's Funeral

Thank you to everyone who has sent cards, emails and comments. It is lovely to know how much you all cared for George.

George's funeral will be on Monday 14th December at 2pm in Dalwood Church. He is being cremated, but he wanted the whole service to be completed at Dalwood, including the committal - he didn't want anyone to go to the crematorium. His ashes will be buried in the churchyard later, privately.

No flowers please, but if you would like to make a donation in George's memory please do so to either the Cancer Research UK project on malignant melanoma:

http://myprojects.cancerresearchuk.org/projects/skin-cancer 

or to Hospiscare, who looked after George with such care, in both the in-patient unit and at home:

http://www.hospiscare.co.uk/Support_us/single_donation_form.htm 

(There will also be an opportunity to donate to Hospiscare at the Church).

I'm so very sorry to be posting this. George died yesterday, very peacefully, in the Hospice in Exeter. We went in there in the morning after his condition deteriorated, and I was with him.

Alex and Theo (and Jo) had visited the day before, and Anne also came round for a private communion.

I will post again in a few days.

Christine

I'm afraid I'm still not feeling very well, and I missed another day yesterday. However, I'm a bit brighter today, which was good because the Hospiscare nurse and the District Nurse came round this afternoon and talked about whether we need extra help. Someone is going to come round in the mornings, which is good, and I'm getting more toys including a rope ladder to fit to the bed (me Tarzan)!

I've also been given some food supplement things which are horribly sweet, but said to be ok mixed with yogurt. Many thanks to Ray B for fetching the yogurt at a moments notice.

Once again Christine is typing this for me.

Wednesday 25th:a belated update

I am sorry not to have blogged for a while, but I haven't been too well for a few days. On Monday we had a pretty full day at the hospital, where I met my new consultant. We had a very full discussion about chemo, a lot of which I didn't follow! Basically there is an option which sometimes knocks the tumours back a bit, but it has very serious potential side effects for people with brain mets. It is also heavy duty chemo rather than the pills the previous Doctor talked about (which are not likely to be effective either). So I need to think about this chemo option, but it is difficult to focus on at the moment because I am feeling ill and the pain in my leg is bad again. It might be because we had a full day on Monday, but I actually missed yesterday, beyond having a vague idea that the Hospiscare nurse visited and said that I should just be allowed to sleep, and would feel better tomorrow (ie today)!

I do feel better today, and Alex visited which was nice, but I still feel pretty lousy and the involuntary jerks are annoying. They are trying an anti-convulsent for this, so fingers crossed.

That's about it. I'll keep you posted.

Thursday evening: an update

Evening all; for those that have been wondering what I have been up to after my recent new treatment, the answer is sleeping practically all the time. They did say I might suffer from flu-like symptoms but made no mention of sleepiness. I'm also finding it difficult to concentrate, so Christine is typing this for me. And there was something else, but I forget what it is - oh yes, forgetfulness!

Yesterday we went to Otter Nurseries, as Hilary mentioned on Sunday that they had a lot of helpful disability aids. New toys include a clever stick to pick things up, a fluffy neck pillow, a magnifying glass and a special LED reading light. Should keep me happy.

The wheelchair technician came yesterday to fit the new leg rest, and says that the lightweight wheelchair should be here soon. A man from Social Services came to measure for a bigger shower step this morning, and the District Nurse popped in to change the dressing on my leg. We are truly grateful to have these wonderful organisations - it all works so well.

Theo is visiting today and tomorrow, and has moved heroic piles of logs into the house for us.

Sunday, and then a day at the hospice

Yesterday we went to the service in St Peter's, at which Morris from the Tuckers Arms was christened in front of his proud parents and family. He played his part perfectly until right near the end, when he made it clear that getting wet was not his favourite past-time.

We spent a day at the hospice today, mainly for an infusion of a drug called Zometa. This replaces the previous drug called Pamidronate, and is far more effective in causing bones to absorb calcium more effectively, and hence may be better at helping to control pain in my leg.

We also talked to the consultant about how to recognise the progress of the disease, and she said that the most likely scenario would be increased tiredness, and more prolonged periods of sleep. She felt that it would be possible to manage pain levels so that they did not become a problem.

Thursday - Alex's birthday

Yesterday was very special, in that some friends in the village had organised an informal prayer meeting which took place in the morning in the village church. Anne Mills led about twenty-five of us for about an hour, and both Christine and I felt really uplifted. Thank you to all who could attend, and to those who were unable to be there but support us from a distance

Today is Alex's birthday (our eldest son) and he popped down for lunch in River Coffee Canteen, which was lovely.

There is no news on the medical front, but a lightweight wheelchair is on order.

Remembrance Sunday

Our Hospiscare nurse Mary came on Friday, primarily with a view to correcting the fluid retention problem which seems to have developed as a side effect of the other medication. I now have to keep both legs elevated as much as possible. It has resulted in two more tablets to take each day! I have also acquired a very comfortable pair of slippers from Trinity House (a shop n Axminster); since shop was heaving on Saturday and the menswear department is upstairs the assistant came out to the car and we did the trial fitting in the square. Full marks to him for good service!

The consultant in Bristol is making enquiries about the suitability of low dose oral chemotherapy, and which consultant in Exeter would be responsible for arranging administration, which would hopefully be done at home.

We have also acquired more information about the clinical trial mentioned by Professor Dalgliesh; it now looks as if I may be ineligible on the basis of the number of brain metastases and possibly the presence of bone mets.

The physiotherapist came on Friday to review my mobility, and the the occupational therapist is coming on Monday to look at improving access to the shower. We will also see Mary from Hospiscare to check on overall medication yet again; it will be a busy week here yet again!

A bit of a hiccup!

I'm afraid I suffered a hiccup yesterday in that I tipped a glass of orange juice over my portable laptop keyboard, thereby rendering me unable to post or email.

In summary, we saw a new oncologist who specialises in immunology, with a particular emphasis on new compounds which are going through the early stage approval process. He gave us some advice on over the counter vitamin supplements which help with some types of cancer.

He also identified a compound which is far more effective on bone pain than the one I have been taking via infusion at the hospice.

Lastly, he identified a compound which could well be effective on the skin lesions of my disease, and for which he is waiting for trial go-ahead in the next month; if it does proceed he sees me as an ideal candidate.

Overall the situation has not changed, as nothing mentioned can be regarded as a cure. Nevertheless they should have a positive effect on my quality of life, which is important.

The new week

The new week is starting on an up after a visit at lunchtime by my Hospiscare nurse, during which we revised the medication levels and added two further drugs. I have had a pain-free afternoon, which has been wonderful!

Tomorrow we are off to London by train for my next appointment with a new oncologist. I am not expecting much out of this appointment as the chap specialises in very early clinical trials, for many of which I may not be suitable; however, there's so harm in asking.

We are staying at our usual hotel in Jermyn Street, and seeing some friends on Wednesday before travelling home.

I'm taking the PC so will probably post whilst there. TTFN

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!