And when I say we - I mean us, on here, cancer patients, carers and families.
I had an appointment yesterday with the Prof of Endocrinology to find out the results of last week's scan. My last scan was in May 09, after 6 months of chemo, and it showed some shrinkage which was good. But what had happened since then? I have been getting increasingly nervous as the time drew near, and for me that means chronic insomnia. And although I'd tried to put it to the back of my mind over Xmas etc, it never completely goes away, does it? So I was on the train going to London, and I tried to get myself in some sort of order by thinking 'Whatever they tell me today is NOT going to be as bad as when they told me last year that my son had obviously inherited the SDHB gene, as he also had a tumour' . I was also scared because the pains I get from my liver area on the right side had got worse in October last year.
But - the best news I can ever hope for - no change from last scan, in fact, if anything, a bit more shrinkage. So everything stable at the moment. Breathe out slowly. Good old bloody Temozolomide!!!! Now, I know I'm a lot better off than a lot of people on here, as my type of cancer is slow-growing, and not very aggressive. But, I do have to fight on more than one front, as they say, because it's not just my results that I have to worry over, but my son's check-up scans as well. And the strain does get to you - wouldn't be human if it didn't. Although I felt really relieved last night, when I tried to read a bit of my book in bed, my hands were shaking badly.
So now, I have appt with oncologist in early Feb, who will discuss when I'll be scanned and checked again - then next appt with Endocrinology team in May. And they are going to see me and my son together, which is good as he doesn't always ask enough questions (hey! I'm a pushy mum when it comes to his health - who wouldn't be!) And of course - although things are stable at moment doesn't mean they will always be. But it's the best I can hope for now. My son will be scanned again in the summer (date to be arranged) and if that one's ok, he'll then be scanned annually.
But I couldn't stop thinking last night that the first hospital and team I was under in London (mention no names) when I mentioned I had read about Temodar/Temozolomide being used to treat Pheochromocytomas on an American website - the oncologist attached to that hospital dismissed it completely, saying that the results 'weren't encouraging'. thank goodness I changed teams! And I think the increase in pain that I had last year could've been down to getting shingles?
Lots of love, Jeanie x
