Feeling blue

Hi Everyone, I haven't been very active so far on this site - but find myself logging on more and more. Also, have shied away from writing blogs etc, too shy. But now I need to talk about things, or fear I'll crack up. I have very rare cancer called 'phaeochromocytoma', which is a tumour arising in the adrenal gland.It's linked to another type of tumour called paraganglioma, which usually starts in head and neck, but can start anywhere. It's also hereditary. My sister had neck tumour 10 years ago, (before hereditary link was known about) and I was diagnosed last year. 'It's notoriously difficult to treat' one doctor said to me. Surgery first, but if it's spread, no cure. Best you can hope for is control rather than cure. But the usual treatment that shrinks and controls tumours was ineffective on mine. (I have secondaries in liver, lymph nodes and small nodule in lung. I also had large secondary tumour removed from my pelvis last year). I'm now on a mild chemo drug called Temodar, used to treat brain paragangliomas. But only 33% of 'phaeo' patients respond to it. So I have no idea if it's doing anything yet. All I know is I have weird pains everywhere. I just seem to swop one pain for another. I've had pains in my side for about 7 months now, and suddenly, in the last week or so, my right hip (where I had tumour removed) has swung back into action too. I've had no pain there for months, and now I'm getting funny shooting pains all over the place. Saw my Prof in London yesterday, told him pains were increasing, freaking me out. He said they'll probably scan me after 6 cycles (I'm on 5th now). But worse than that, worst of all, my son, who is 24 (he's our only child), has been having pain as well. He's waiting for genetic testing, but his GP did some bloods/urine tests, and his hormone level was raised (first sign). He's now waiting to see my Professor at St Bart's and I'm terrified. I had about 1 hours sleep last night thinking I don't know if I can bear it if he has tumours too. And then I think I'm so selfish and weak, I have to bear it, for his sake, and other people do. But I'm fed up today with putting brave face on, trying to live 'normal' life. I'm worried sick, pains are getting me down and I feel like crawling into a hole and not coming out for a while. Thanks for listening xx