An eventful day in Bristol

As expected, today's consultation was anything but routine. I'll try to summarise as briefly as possible:

• The current chemo regime appears to be achieving the opposite of what was intended, which was to reduce pain. Based on two cycles, it seems to be responsible for a substantial increase, but no-one is able to explain why
• Whether or not it is helping to control spread of the disease elsewhere, the increase in pain is not acceptable, and could get worse with further cycles. We have therefore decided to discontinue it for the time being
• Xrays of my chest and leg taken today suggest that it is progressing very slowly in other areas (ie chest), but more quickly in my leg
• We decided to check progress in the other areas (head, trunk) by having MRI and CT scans in the next two weeks
• In parallel with these scans I have been referred to the Bristol Orthopaedic team to review what may be causing the increase in pain in my leg (loose pin?) and to review what options they may be able to offer as a solution
• When we have an up-to-date picture of overall disease progress, and the input of the orthopods, we should be in a better position to decide a way forward
• If the disease is progressing slowly then one option I have been asked to consider is amputation of my right leg above the knee. Apparently melanoma has been known to be particularly active in a primary location, whilst developing much more slowly elsewhere. Removing the primary area of activity can further reduce development in other locations, although this is not guaranteed.

We don't know enough about the amputation option yet, but the decision is clearly influenced by how much good quality time I am likely to have left after the rehabilitation process. If, say, it takes six months to recover from leg removal, and I only have a couple of months thereafter, it would not be worth the trauma and recovery associated with amputation. If the period could be a year or more it may be worth considering.

I'm sorry for the length of this post, and the amount of detail. As you can imagine, I'm trying to come to terms with what feels like a very big decision; writing this is helping to clarify my thoughts. If anyone has any knowledge or experience of this area, I would love to hear from you!

To end on a lighter note, we did make it to the Banksy exhibition and it was well worth going. After all, where else will you see a chicken nugget hatching from its egg, or a fish finger swimming around a goldfish bowl? Furthermore, the picture of MP's in the House of Commons is so timely one could almost imagine Banksy has second sight! Go and see it - you won't be disappointed.

Off to Bristol

Woke up this morning in considerable pain, and am mystified why this has happened. Yesterday was a very quiet day, with church at 5. Even Alastair quoting the Archbishop of Canterbury shouldn't cause an allergic reaction of this magnitude! I did sweep and weed the front path in the afternoon, but I did this in my wheelchair and definitely didn't put any weight on my leg. I'm not one to anthropomorphise but I do wonder if said limb knows where it's going and what's going to happen tomorrow - it does get poked and pulled about a bit.

We had hoped to make a bit of a jaunt out of the trip to Bristol, by arranging to meet our youngest for lunch, and then going to see the Banksy exhibition at the museum. If you have five minutes spare, do have a look at the website for this event - amazing, isn't it!

Tomorrow is quite a big day, because we should get the results of my x-ray and, more importantly, hear whether the consultant thinks the current treatment is showing promise or not; perversely, I hope it is, despite the side-effects. The prospect of trying different combinations, or of trundling around the country looking for relevant clinical trials, seem rather daunting by comparison. Anyway, I know you all wish me luck, and now seems like a good time to thank everyone for the positive comments about the blog; it certainly makes our life easier than trying to remember who we've spoken to on a daily basis!

I'm also pleased to report that I can end this post on a positive note - before I started writing I took a large dose of Oromorph, and backed it up with a quick 'glove anaesthesia' session - both of which seem to have worked! So, TTFN...

Back from the brink...

Evenin' all,

As you can see I've clawed my way back from the brink of technology oblivion (Windows 7, loss of data, backup not working quite as it should have) to be with you tonight. In fact this may be something of an exaggeration, but a little drama doesn't hurt...

Lunchtime found me in the Tuckers Arms in the company of Mike McAlpine and Gwyn Rosser, who had invited me to join them for a pint before adjourning chez Gwyn to watch the rugby on his new Sky HD set-up. I have to say the detail was amazing; when, two minutes in, a Springbok stuck his fingers in the eyes of a Lyons player you could SEE the tears exuding in appalling detail. Minutes later a fight erupted on the pitch, and blood pressures in Brook Cottage rose accordingly. I decided that it was lunchtime and repaired home before either of the others caused me further injury in their very physical expressions of support for the Reds.

Later this afternoon we held a very much more sedate and seemly cream tea under the apple tree in Michael and Sue's garden. It was by way of a 'welcome home' to him after his stay in the Wonford, and I imagine he was as pleased to be back as we were to see him!

While I was out at lunchtime Chris had been catching up on medical news on the various cancer research and related sites, and had unearthed a potential treatment that I'm trying hard not to get excited about. It's not a cure, but rather a palliative treatment for bone tumours which is aimed at substantially reducing pain and increasing mobility levels. Basically, it involves injecting some kind of epoxy resin into the affected bones. This is allowed to harden, and then provides structural support instead of the current metal pin, which I think has become loose due to tumour activity around the fixing points. I won't bore you further by posting the relevant paper, but using a 'standard' pain scale of 1-10, it seems to bring a score of 8-9 (typical deep bone pain) down to 1 or 2; now that would be worth having! I'm looking forward to raising this with the consultant on Tuesday.

Famous last words!

Yesterday is the last time I post smugly about the need to switch off routers to protect equipment against the weather. I did of course follow my own advice, but that didn't stop my PC from refusing to play this morning. I've spent most of the day recovering my data from a disk that seems to have failed spontaneously, and the process still isn't finished:-( I may get round to reading my emails before bedtime, but it's doubtful.

On the other hand, I did have a very enjoyable and fruitful hypnotherapy session this afternoon. I'm learning a technique called 'glove anaesthesia', which involves deadening the hand through concentrated effort, and then transferring the feeling to other parts of the body which are less comfortable. Today is the first time I managed to overcome the soreness in my leg using this method, so now it's a question of practising so I can do it to order, and in a wakeful state.

I'll keep you posted. In the meantime, if you come across me in the village, watching my right hand sink slowly in the air, eyes closed and head drooping, you'll know that I'm still practising...

Have you heard the weather forecast?

I hope you haven't already gone to bed this evening? If so, you will of course have turned off and unplugged your routers, modems etc. Every time we get thunderstorms here I have to replace at least two or three of these through lightning strikes;-)

Not much to report today; the house is now fitted with ramps to enable me to get around in the wheelchair - from the garden room to the dishwasher, as Chris has smugly pointed out!

Dave's PC is now back with him and working, so the next issue of the Parish Mag is now safe, I'm sure you are all relieved to hear. And now I must go - things to unplug...

A mixed day

The day started really well, with me making it to Communion at 0930 - I think it's OK to be proud of that?! The main reason, apart from wanting to go, is that I had a leg x-ray booked at 1030 in Axminster. The rebuilt department there has only been open for three weeks, and it looks very spacious and welcoming. I did manage a peek at the pictures, but the screen was not really big enough to check anything other than that they were correctly positioned and exposed. They are immediately upload to Exeter for reporting back via my GP, but Bristol will also have access to them so I expect to hear the result next Tuesday at my regular pre-chemotherapy appointment.

Pain hasn't been too much of a problem today as I've spent most of the time sitting down trying to work out why Dave W's PC won't boot. Those in the know will realise that this is the machine that is used to produce the Parish magazine, and hence is priceless. Unfortunately the software on it is also complex and expensive, and has previously proved prone to problems. It is all backed up in accordance with the way I recommended earlier this week, but even restoring from that takes a lot of time and is best avoided if possible. Fortunately, I remembered late this afternoon that I had installed some software to back up the Registry (aka Windows brain). I've never had to rely on this before, but I took a risk and tried it - and it worked! By trial and error I figured out that something unpleasant had happened on 21st June, so rolling the machine back to 20th did the trick. This little piece of (free) software will appear in future on all my PC rebuilds!

The day ended so warm and fine that I decided to cut the grass with our tractor mower. This was not a smart idea, as it definitely upset my leg. I suppose the trick is to learn to live within the bounds of what I can now do, but this does require a certain amount of trial and error.

OK, so not all of it was true...!

I hope you enjoyed yesterday's piece about the information Google collects on us all. I'm afraid that the last bit about being able to see you on Skype was a wind-up - well, one must have a little fun:-). The remainder was real data from the blog.

I thought we had solved the pain problem yesterday, but it has continued to break through, so I'm having an x-ray in Axminster tomorrow just to check that it isn't broken.

Little else to report of note today, except lunch at River Cottage cafe. It's very pleasant and good value too; I did manage to smuggle home a small piece of Stinking Bishop cheese, so if you think the Lawrence pigs are out over this way, you may just be mistaken! I rang Michael Bradbury to invite him and Sue, only to find that I'd missed a text this morning say that he was in the Wonford for investigation into his back problem. As if that's not bad enough, their broadband connection is broken. He is able to send and receive texts, so those of you who know him pile in and help cheer him up please!