Hi there!
My husband has a very rare form of cancer- there are about 240 people in Australia with the same type, but he is only the third reported case world wide to have it in his peritoneum. There is a fabulous website for EHE sufferers, but no face to face as such.
We are lucky that there Is a 'generic' cancer support group here at Tweed (although he has never been well enough to attend)..... That is available should he need it.
Have you found a social worker attached to the hospital yet? Ours here at Tweed is FABULOUS!!! She has been there since the day of diagnosis three years ago, full of advice, calmness, a MASSIVE shoulder try cry on- I have been stopped on the side of the highway several times on my way to work bawling my eyes out to her on the phone.......and she runs the support group.
We also have the volunteer organization up here Tweed Palliative Support who have also been amazing.
I went through the phone book and took down all the numbers of vaguely cancer related groups in my area until. Found one that could help.
It could also be worth a phone call to your local council.....silly I know, but that is how I got onto the Palliative Care support group up here.....and it is not just for people who are dying.....they specifically state that their services may be used for as long, or as short as you need.
I had a lady for example, who used to come in the afternoons after I had finished work, and while I cooked dinner and sorted out the house/ my husband, she took the kids for a walk, or in the pool, or put them in the bath for me, folded washing, just for two hours a couple of days a week- a massive help. (my kids are now 4 and 6).
Good luck and hope this helps!!
PA
