We Talk Brain Tumours

Hi Martyn, sorry for being a bit thick but where do i find friend requests?

MollieX

If it isn't on the top right hand side of your home page, check your emails.

XXXX

still have'nt a clue, my sister is popping down later and she's a whizz on FB i'll get her to have a look for me,  speak to you later.

MollieX

Come on, you can do it.  Have you checked your emails?  If you have a friend request just follow the link.

XXXX

hi Martyn, just a another look nothing there, did you send it to the one above the pussy? DOB 20.04.77

MollieX

Mollie, I've just looked for you - I presume from what I've read you don't want to be known so don't have a picture - the DOB may not be able to be seen depending on your settings, I'd be surprised if they can though - the person above the pussy is a Mollie Kay Smith born 1932 on my search - I'll email you on this site and give you more instructions - so you will now have to look at your emails here - that ok?

Mollie, I didn't realise you we weren't friends, you will have to accept me as a friend before I can email you x

Hi Mandy, just accepted you as friend i've just put on my picture a photo of our Labrador see if that makes it a bit easier. X

Yeah i've got a friend on FB thanks Mandy!  How do i join the group. X

Hi Lorriann

Sorry to hear about your husband.  My Mum is currently in remission from a central nervous system lymphoma and had debaulk at Queen's and chemo and RT at City.  Because my experience of brain tumours is a bit different to yours, I don't really know about the side effects of the debaulk on its own.

What I would say though, is keep pestering the City for another appointment to discuss what is going on.  I felt that sometimes the consultants focussed so strongly on the tumour and the treatment of it, that they forgot that there was a person attached (!)  I don't mean this in a derogatory way, the consultants we dealt with were so wonderful at their jobs, but at times their bedside manner was a little abrupt.  I had/have every faith in them that they do the best with the knowledge they have, but they are not always forthcoming with keeping us up to speed with what's happening and I think you're perfectly within your rights to ask for a follow up meeting.

I would ring oncology outpatients directly, should be on one of the appointment letters, or ask for them through the switchboard and request an appointment.  You could also try going to your GP- sometimes this can open up another link to the hospital which could prove useful.

love Ali xx