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