Half an update

Hmm, another annoying Prof visit.

Got there at 11.25 for the 11.30 appointment and got to see him at 12.35 – yet again, not a sniff of an 'i'm sorry for the delay' but that's par for the course there.

Had a weird and rushed conversation as I had to be in the other Parkside building for an MRI scan at 1pm.

He was basically saying that the two CT's don't cover the same parts of my body so not able to do a proper comparison – why the hell he wouldn't have known that already I don't know. So I am now booked for the PET CT on Monday morning and seeing him again on Tuesday for the next happy chat.

He saying though that he is 'almost certain' that there will be bone deterioration since the other scan was done in Dec 14, to the one that will be done on Monday (does make you wonder if he has;t already made up his mind about trying to get me on treatment, hey?)

I asked how much change would necessitate going back onto treatment – a 10% change? 30%? Change in significant bones? All good questions I thought – but he said that 'any change' would be enough reason. Sounds ridiculous to me – if it was a case of taking a tablet then yes maybe I'd be open to treatment to reduce bone damage – but he wants the full 4-5 months of chemo and a bloody transplant. 

He also again said that 'we need to forget the chest pain and go ahead on the basis of any bone deterioration' – but if I hadn't come in with the chest pain there had been no mention of bone damage or the need for a PET CT comparison, so that feels rather like 'why the sudden massive rush' when if I'd never mentioned it, then we wouldn't be in this sorry situation.

And then he totally contradicted himself saying 'well, if we get 3-4 weeks into treatment and the chest pain vanishes, then we can have a different conversation (Ie maybe not need full treatment) which is entirely the opposite of 'forget the chest pain and lets treat the bone damage with the full works'. So both H and I are left full of questions and I'm not feeling that he is open to any alternative approaches apart from the full monty.

Shag it. 

Will update again after Tuesday (want to start placing bets on how long we have to sweat it out, waiting outside his door that day??) once I know more.

In the meantime I am seeing the heart guy tomorrow as the latest ECHO test shows damage to 4/17 LV segments. This seems to be ischaemia – and the internet says you can take tablets to resolve that. So let's see if he wants to add more rattly little buggers to my pill pot. A preferable solution all round and – who know – maybe even one that might work! God forbid I suggest such a radical outcome… Will see tomorrow.

I'd like to then give it at least 2-3 weeks to see if the heart treatment works and if in doing so it reduces the chest pain at all. And if it does, if there is any way I can put Prof's plan off for as long as possible. This might be me being a bit of a wishful thinker, but equally I'm not going to blindly say yes to a terrible 6 months – and using up one of my valuable stem cell transplants – unless I am physically falling apart. 

I can feel a stressful Tuesday appointment and a second opinion coming on. 

In the meantime, it's up to Manchester this weekend to see Lydia, then Chris Cowburn's 50th birthday bash and overnight with Rach & Roger. A much more fun way to spend time until the shit and fan start their merry dance again next week.

Thanks for the supportive texts kind people – I don't really want to talk about it much as this is pretty much all there is to report for now – I'll keep you posted on here.

Keep your fingers crossed the spinning ball lands on black, not red.

x