Hello @KayB55,
After being diagnosed in February this year and having a different treatment path to yours, I am unable to comment on your query.
As @youngdogmum said, people do 'mean well', but goodness at times I don't know if they have thought through what they are saying. I am a registered nurse and even other RN's have said some gobsmacking things, thinking they are being 'helpful'.
If you can, try and surround yourself with supportive and helpful people, and know that all of us on this site, even though we do not 'know' each other, have your best interests at heart and there is always someone to 'talk' to.
All the very best to you!