So here is the begining...Having searched through the cancerbackup site there didn't seem to be any synovial sarcoma links. I was diagnosed on friday and as this is the start of my journey, for my own sanity and possibly helping others I thought I would make a little blog of things in my head and the treament that I receive. I would love to hear from anyone else, for a chat or whatever.This is all a bit scary and I'm sure that it hasn't sunk in yet!
FormerMember
I really hope your blog helps. I was too tired to keep up my usual paper diary but I made a "Visual Diary" during my chemo, and found that it did help as I could make fun of things that had scared me before. I am so sorry about your diagnosis. I have had to get my falling-to-pieces (see it's mine, it's just like me!) dictionary and look up "synovial" - it says "an unctuous fluid in the joints" - so that meant another look at the word "unctuous" as I'd always thought it just meant suave and smug (mind you my cancer seems pretty smug). In fact it also means oily. Goodness - you have got a rare one there, Kerryann! I would add that the unusual ones do get a lot of A1 attention from the doctors as they are something special (not like me with the boring sort). Well, you keep us posted. What I hope is that in a few months your blog really will be historical, and you will be fit and well again. Take care. Big hug xxx Penny
I know how you feel - I was diagnosed with angiosarcoma in my right breast 2 weeks ago. I was referred to a specialist who said the results were "inconclusive" and repeated the biopsy. I'm now waiting for these results. So it may or may not be cancer . . . . I have all the symptons except (1) I haven't had any previous radiotherapy (2) there are no "distinct" signs of cancerous cells - whatever than means. There are vascular lesions but I don't know if that is good or bad.
I spent a week hardly breathing I was so scared, but chatting on this sight helped as everyone understands how you feel each day and there is so much support.
Once the specialist had said to wait I was fine for the first few days, then the panic set in again, I think it was seeing my daughters that set me off. Just because they are now in their thirties doesn't stop them being my babies.
The one thing I have found out is that the rarer the type of cancer the more the specialists fight to treat you, so at least you get the best.
Anyway, I'm thinking of you and I'll keep in touch
Hi Kerryann, my names Deborah and I was diagnosed last Thursday with adrenal gland cancer, with a secondary tumour in my right hip bone. Feeling very hopeless, wish i could find some of this 'inner strength' people talk about. Adrenal gland cancer is very rare, are there enough specialists in this field? That's whats worrying me. (along with everything else). We have moved into a different world, haven't we?
I think your right you know this whole inner strength thing doesn't always come easy... I'm generally in a bit of a pickle about it all and when i'm with other people its all ok, living on my own is the tricky bit! All i can say to you is that the inner strength will come, I think once it all starts moving forward you will be fine.I think its all the witing and the unknown that makes it harder.
So, the end of a week of having to tell people the 'news', its funny really as i dont almost feel like it is me that i'm talking about?! And after an exhausting week swinging from being ok...to being really not ok, the dreaded weekend appeared!
Saturday night arrived and we went into reading to celebrate a friends birthday, why the problem i hear you say?? Well they are not people that i see very often but my beloved and worried girlfriend has already told them all 'the news' and so the evening went on... lots of half smiles and woeful looks
'are you ok?' 'were all thinking of you'
Now i really dont mean to sound ungreatful but BLIMEY!!! I'm still kerry, the kerry i was a few weeks ago, cut all the sad little faces and lets have a a bloody party!!
Is this really the way it has to be? I dont need sympathy, far from it, lets have some drinks, laugh and be merry because surely this should be a wake up call that life truly is a funny thing, you never EVER know what is around the corner, and quite frankly I'm not going out quietly and not only that I'm not going anywhereat all!!!!!
