Back to "business as usual", in more ways than one

So, back at home and work for a week now. If things go to plan in the coming week, we are going to be extremely busy getting my main project to a milestone at the end of the year.

I say "project", but I really mean at least 4 projects. So, from being relatively quiet for the first six months of this year (which has obviously been very beneficial given the road I have travelled), the last three months could well be manic. I hope so - it's been over 4 years getting to this point on this scheme and it's about time that we were in a position to be able to move things forward. It's a difficult time for our partners, though, so we need to be mindful of their plight as we move forward.

It's also back to business with the treatment. Whilst I still haven't heard from the consultant - nothing since I spoke with him back in August - I will be seeing him on Wednesday. Before that, tomorrow in fact, I have another CT scan. I ought to count them up via the entries into this diary, but I reckon that this must be at least the sixth scan now, plus the PET scan. If every CT is worth 400 chest x-rays, I'm now looking at 2,400 chest x-rays, plus the PET scan, in the last 15 months. That can't be very good for you in itself, but the scans are needed to check on progress with everything, so "hey ho".

I should be able to find out about the funding for the maintenance, or not as the case maybe. Given the doubt about even the licensing of the Rituximab for maintenance, I am less hopeful than I was before. Some good news is that an EC committee has approved it for this use only last week. While this has no direct bearing on policy by NICE over here, given that they are to consider it for this use over the next 9 months, this must be a positive sign. All the people I have spoken with in the NHS and NICE about this have been most helpful, so I am very grateful to them. At least I can find out some of what is going on with this treatment in the wider context, even if my consultant isn't the one who is telling me...

I will do an update after Wednesday.

Skye is now fading into memory, but I have had some fun over the last few days either processing the last of the film, or scanning the Hasselblad slides that came back from the processor at the end of the week. A 6x6cm slide is really something else (4x5 inches is the next step up :-) ) and there are a couple that I have been pleased with. They are on my website if anyone wants to have a look.

Next thing is Venice in just under 3 week's time. Should be a good do - we have 22 confirmed for dinner, so it's getting to be nearly as popular as the Berlin meeting three years ago. Will have to go through my old slides from Venice and see what's a likely candidate for a re-shoot!

Then, autumn and winter set in. But, the tour round France/Italy/Switzerland/Germany/ Luxembourg/France won't organise itself. That's going to be pretty tricky to get everything sorted. There's a lot of ground to cover, and we don't want to spend an entire fortnight in the car, so rather than visit a lot of different towns during the time we have, it might be better to find 3 or 4 bases, where we can spend a couple of days in each, before moving on. Lots more work needed there, I think. But, it needs sorting as small hotels, such as the ones we have been looking at, get full very quickly.

So, an early night is in order. I think it's "nil by mouth" before the scan tomorrow morning, but I'm sure a cup of tea won't hurt...

More on Wednesday - if there's anything to report.

And finally, our thoughts are with Jan W, who has had some surgery for breast cancer this last week. Let's hope that there's very good news on it's way to Jan very soon.

Skye

Got back from Skye yesterday evening. 9 hours in the car, 8 of them driving. It's quicker to go to the US.

Proper update later in the week.

No news is..

... no news.

Still no word from my haematologist, despite almost daily emails, phone calls and me sending him information regarding the PCT, NICE, etc.

The project manager at NICE, responsible for guiding through the approval of Rituximab as maintenance for people like me wasn't very encouraging yesterday (but at least he DID phone back). He was suggesting that the drug isn't even licenced for this use, let alone approved. Approval will take until next Summer, if everything goes according to plan and NICE approve it - that's by no means certain.

All in all, very frustrating and not satisfactory.

I have a meeting with my GP later this afternoon, and will start to explore alternative consultants, including seeing whether a transfer to Christies in Manchester would be possible. They are a large teaching hospital with the biggest and best oncology department in the North of England. Maybe they would be more able to access these new treatments.

Who knows. I certainly wouldn't be any worse off than I am now.