A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Support on new forum

Postby Sones » Wed Dec 05, 2012 9:35 pm

Hi I'm Sue and just wanted to reach out to anyone out there who might like to be part of this discussion forum for patients only.

It took me nearly a year following my diagnosis to access this site but I'm so pleased now that I have finally done so. When I was first diagnosed I didn't know anything about PC and I can remember saying to my chemo nurse that I didn't know anyone with this type of cancer, i desperately wanted to be able to speak to someone who truely knew what i was going through. It didnt help when she said i wouldnt know anyone as it was so rare and she was unable to put me in touch with anyone either. It's frightening and you feel totally alone or at least i did. Accessing and reading information on the internet can be daunting and even more frightening with life expectancies / statistic being extremely poor. To be honest I didn't think I would still be here and can remember asking my oncologist in Jan 2012 if I would still be here to see my son graduate from university in July 2013.. My oncologist wouldn't answer the question but said we would fight this together and we did. Thankfully I'm still here and I'm determined to make my voice heard and to get this dreadful disease highlighted as one that requires earlier diagnosis, publicity, funding not shoved under the carpet as it is at present.

If your out there, please get in touch we can support each other on/ through this journey.

Sorry if I've gone on a bit....

Sue.