December I had my kidney and Urether removed
I was told last week, very rare, incurable and never seen a cancer move so quickly
what can I expect next
So sorry that you have been told this. It must be a lot to take in. But there are people on this forum who have been here for a long time and maybe able to help you.
We are all on a journey and are taking it each day as it comes. Your care team will guide you through. I didn't like to ask too many questions but that's changed. I do ask questions now.
I know what you mean about it being 'surreal' I think we all feel like that when we told it's incurable. But continue to be in touch, you will get a lot of support here.
Sending lots of hugs
Thank you Judy
Welcome to the incurables group. We are sorry to meet you here but you will find lots of friendly support. If you feel up to it, you may want to write your profile. If you click on your username then profile and save. It's your cancer story, it helps members in their replies to you and saves you repeating yourself. You can read mine if you click on my username.
As you say, it feels surreal to be told these things. I can empathise to some extent. I was told that I didn't fit the profile for my type of cancer, it behaved unexpectedly etc. My cancer is stable after treatment, have you been referred to an oncologist, can they treat it? We prefer to say that we are incurable but treatable rather than terminal. A lot of the members of this group will say that they are 'past their sell by date' which means that they are outliving their prognosis. Don't lose hope yet and keep posting, we know where you are coming from.
I am a Macmillan volunteer.
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Hi Marciasnowy, Welcome to the group. I have just replied to another new member called "Loony" Her post Headline is "Living on a Time Line"!
Please read that post and the replies, as I would have written a similar reply to you. If you can't find it, let me know and I will copy and paste it for you! The only thing I would add for you and Loony is to get a notebook and write all your questions down and take the notebook to appointments,smo you don't forget to ask. At the beginning I'm sure we all came out of the oncologist's office and could hardly remember what was said. This way, jot down words to remind you of the answers, then you can read them over once you get home.
I have gone through several notebooks and still take one to every appointment!
Love Annette x