That's me, okay at the moment. Technically there is "no evidence of disease", but it came back in May, less that a year since the primary and has a high incidence of recurrence. Some days I'm grateful not to have chemo cos it sucks, some days I get really depressed and wish I could cos I want the reassurance, but I know it has no effect on my type of cancer (angiosarcoma).
This week I'm worrying about the bowels, every little change, a bit looser - is this it? Last week it was the lungs, a slight cough is the first sign. As time passes I sometimes go whole minutes without worrying.
What frightens me is that yesterday I was doing a reply to a blog "waiting for the axe to fall" just to say I knew where they were coming from, and suddenly found I had written the above. Looks like I'm more screwed up than I thought!
Despite that I'm enjoying my life, manage to work without falling apart (my boss is a superstar) and carry on as normal. Its only inside my head its scary. This site is the only place I can express my fears, as everyone in the real world expects me to be upbeat now I'm okay at the moment!
love and gentle hugs
Sharry xx
FormerMember
Sharry & everyone else here,
I so understand as you know from my email to you about my craziness. It is so lovely to have this to come here and read other people are in our shoes. by the way.. what does NED mean?
there are times where i want to just run away screaming why me....looking at my girls thinking they might not grow up with their mother... that is the killer one...
on the outside i try to be stronger and positive cause it keeps the people areound me up with me. my mom is struggling with this.. after all i am her daughter. i truly can't imagine what she is going through that feeling of helplessness for her baby girl...
its sad there are no support groups here for our type of cancer.... this is so scarey... i got pain in my back and i gotta call to get it checked out.. and a cyst on my ovary that didn't go away this time.. arrgghhhh!!!!!!!!!!!!!!!!!!!!!....
i gotta run one of my beauties just woke up... i wish youallllll the best.. in my thoughts and prayers always.... love, lauren
NED stands for No Evidence of Disease. I believe it replaces the word remission but it means what it says: at the time of your check-up there is no evidence of disease. This is not a cast-iron assurance that it will never come back but it at least gives us hope. After around five years of having repeated NED diagnosis the doctors will assume that it is unlikely to reoccur and you go back to having the same chances as anyone who has not had cancer before. Again this is no absolute guarantee - you may develop another primary cancer in another part of your body. Dear me, I am sounding negative... I don't mean to be all doom and gloom, I am simply reporting what I believe are the facts.
