Hmm. Not impressed today. J has his PET scan last Thursday. Our hospital doesn't have a PET scanner so he had to go to Preston. They told him there that the results would be on his consultant's desk for Friday. Fine we thought.
We went today to see him. And yes surprise surprise no results. That would have been bad enough. But then the conultant told us he'd had his meeting about John with the team he works with in Newcastle and they had decided his back wasn't cancerous and he's a grade 3. We were over the moon for a couple of minutes before the little voice in my head said What? How can that be? I asked how come the MRI people told us it WAS cancerous so he opened the MRI report and then got all stressed as he read it. It turns out he DOES have a big 5cm x 9cm tumour on his spine and there are concerns about an area on his ribs. He immediately prescribed steroids for 4 days, banned us from going on holiday (we weren't going anyway) and said sorry but it won't change anything with the ABVD treatment plan - but if back pain gets worse - or John loses any feeling in his legs (WTF!!) he might have to have a bit of radiotherapy during chemo.
We came out utterly shell shocked. How had they had the team meeting without looking at the MRI? How can we trust them? Everything else in the meeting was as chaotic as the last time - late. no nurse present, no offer of macmillan support, j's got to organise his own blood tests before his appointments. We are bewildered about it all.
Have heard of a lot of people round here going over to Newcastle for treatment, We are now looking into it. This is scary....
