For all those ladies and gentlemen I found a web page that explains why some people with PPC sometimes feel a little alienated sometimes, and find it difficult why their is really only a small amount ofinformation under its own name.
Below is the email.
targetovariancancer.org.uk/.../primary-peritoneal-cancer
The link didn't quite work .. So here it is ..
targetovariancancer.org.uk/...
Thanks so much. Xx
Thanks Tina
I haven't quite got the nack of copying from one wen page to another on my iPhone so just typed it in.
Hugs Ellsey xx
Target Ovarian are a wonderful organisation. They have so much info available. I've been fundraising for them and also helping review info for their revised publications. The team there are great. I have PPC and they really helped me when I was first diagnosed and been an ongoing support since X
Julie
I really felt very uplifted after being on their page and also the understanding of how PPC sufferers often feel due to this decease being rare
Hugs Ellsey xx
They are great source of info and removes the need to go into the deep dark depths of the Internet because PPC isn't pretty when you do that xo
Dear Ellsey
Thank you so much for pointing out the website and to Tina and Julie for their help and comments. I never heard of this dreadful disease until I was diagnosed. I had of course heard of OC and its status as the silent killer.i realised fairly quickly that PPC is also a silent killer but it has an extra layer of silence around it and that is the silence of being unmentionable. Very quickly you are told to see it as OC as symptoms and treatment are the same. I have no idea if any research is bring done or do we wait for a breakthrough on OC. I suspect not. Last year I met a man with PPC at the Aviva Cancer day. As far as I recall his came via his appendix. Yes it is isolating and difficult to explain to loved ones and friends. It is great that the OC ladies are so understanding and helpful and that they give us an opportunity to meet other PPC women on their platform. Being rare should not mean being ignored .
XXX
Apologies my fingers got carried away on keyboard and have some spelling mistakes on my reply.
Ellsey xx
Molly's
You are so right about explains to your family, my sister in-law telephoned last night to let me know the family are doing the race for life and should she put abdominal cancer awareness on their Tshirts. I asked her to put on PPC so we can make more people are aware of this rear cancer.
Ellsey xx
Your welcome
I have just been reading about it, thank-you ellseybellsey for sending the link. As this is a very rare type, it doesn't get the information out like breast cancer. And yes I think we do feel isolated, I found out last year that I had ppc grade four, . I wish that there was some type of test you could have before it gets this far, maybe hopefully in the future there might be. Xxx
Mum told surgery is not an option today - PPC
