My darling husband was diagnosed with Epithelioid Haemangeoendothelioma in his peritoneum in Sept 08. In December 08 he had a peritonectomy with 'hot chemo' at St George hospital in Sydney. As we live on the NSW QLD border, it was a mission to get him down there, have the op and get him back here. Follow up visits have been difficult with two young (2 and 4y.o) children. Right now though, we have been told that he has tumour still on his liver- as to what they can do for it- no one knows.... Did I mention that he is the third reported case in the world? While there are about 240 people in Australia with EHE, Bob's is the only one in his peritoneum.
He struggles daily with pain, and as a 37 year old musician, the fact that he can no longer work, or drive a car, is almost as bad as the disease itself.
BUT! With no prognosis- we feel that we are the lucky ones.....
It doesn't make it any easier when he has been in bed for a week and the kids just want dad and dinner is burning on the stove and and and.....
I guess I am just putting it out there to the world of cyber land that you are not alone.....there are others who look to the skies and wonder "why?". and then get on with the job.
Cancer is a crazy trip....and then some. But thank god for family, friends, fine wine and fabulous chocolate!
Thanks for listening!
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.