Hi Everyone,
Just thought I would introduce myself. My name is Rosie, diagnosed with stage 4 TCC/Bladder cancer in the kidney back in March (more on diagnosis/history in profile) I am not sure what is happening at the moment as all treatment paths seem to be causing me further problems and not having any effect on the tumours.
i do have a positive attitude and love to laugh, however finding it really difficult when after yet another setback - I get used to them - I pick myself up, take one day at a time and look forward to what ever the day brings - then along comes pain. Pain which takes over and becomes quite disabling when I am otherwise still able bodied.
How do you all manage if you have pain that just won’t go away, this is in my back/shoulder and started after chemo, I had one immunotherapy injection - several complications and now this worsening quite severe pain.
I know this isn’t a particularly uplifting conversation, but believe me that really is what I am here for! Just wanted a bit of advice on the above. I have read a couple of the thread and you all sound wonderfully supportive and friendly.
Obviously we’d all rather be elsewhere, but I do look forward to chatting with you.
Thank you all for being there :-)
Rosie
xx
Hi Rosie, welcome,
You need to go back to your team and tell them your experience, so that they can give you something for it. And if you aren't given anything, then you need to protest!
I remember once I was in discomfort (not pain) and mentioned it. Nothing happened. I was in the next week, even more frustrated, and I really articulated it much better! I think the end line was something like ". . . and I told blah this, then I told blah, and you all did nothing about it!". 
My feedback was quite clear!
I had a phone line open during the day for concerns. They never answered it, (by design) but it went to an answering machine and they'd get back to me that day.
