We Talk Brain Tumours

Just been reading the last few posts and Ann b, something you said struck a cord. My parents did similar, worked til their sixties with the plan of spending a happy retirement on the money they'd carefully saved. They were meant to be going to New Zealand - somewhere they'd wanted to go since they got married in the early 1970s but couldn't afford then, and now they can't go. They had to cancel the holiday and it's so sad as my mum had looked forwards to it for so long, she has a room full of plans and things she bought with that holiday in mind. She feels cheated and we feel she's been cheated. 

I totally agree with what you said, of course we need to make sure we're comfortable for our old age, etc, but living for now is so crucial. I sometimes think to myself 'you hate your job, you're bored and lonely yet despite having several thousand pounds in the bank that you'd love to spend seeing a bit of the world, you know you'll do the sensible thing and buy a sofa, or that kind of thing. Why?' People seem to frown upon being reckless and enjoying your time while you have it. But what if being sensible means you miss out? It's such a double edged sword. Anyway. Rambling. Thinking of you all. xox 

Hi IDOF

Thank you for replying - I think it is our conditioning - not blaming her but my Mum's words were - make sure you keep that money in the bank made me take the sensible route.

Hind site - we wish we had it beforehand!

Rambling - we love rambling cos we know we can do it on here!

Take care

Ann x

I would like to thank ann b for taking the time to reply to my slightly misplaced post from a few days ago regarding my newly diagnosed meningioma and Cll ( both given to me at the same consultation ( a huge shock to say the least)

I had prepared myself for the CLL as this was what they where looking for, but after having been told 5 months ago i did not have a BT it was a bit of a shock when this was confirmed at the same time.

As my husband is disabeled (although he is working as a security gaurd at the moment) this was a double shock as up untill now i have been acting as his carer for the last 23 yrs.

He has been taking the news particularly hard (he also has clinical depression and chronic pain syndrome) and is having a hard time coming to terms with the changes this will mean for us both for the future and his health as well as my own.

We are very much in the early stages of trying to fine out exactly what stage both of these cancers are at at the moment and what (if any treatment) will be offered in the months ahead. At the moment i am facing being laid off from my job due to prolonged time off work while the diagnosese where being made and and am not sure wether any other employer will take me on with 2 types of cancer.

any help and advice from anyone would be gratefully recieved

Sending you all my love and thoughts at this very difficult time

Take care

Ann xx

Hi Everyone

Just been 'using up' a bit of time and have just remembered that there is a site called BT Buddies which is a forum site - I have seen Debs on there but not many others.

It has a forum called Fundraising and Awareness Events which needs more support.

It would be really great if some of us could try to support this forum/events

Let me know what you think/feel

Take care

Ann x

Thats me Ann the proverbial 'bad penny' of the BT world LOL  I get everywhere in my thirst to understand this beast better and garner as much info on research and treatments as I can.

hi everyone, im sorry i havent been around lately but so much has happened i wouldnt know where to start, even my blog isnt 100%, its rushed and missing some major things.

i thought id update you all that Dad passed away on wednesday morning at 2 minutes past midnight, I was by his side holding him and im kinda lost right now.

my dad had fought a brainstem glioblastoma for 2 and a half years (which is amazing and well over the odds) and he never complained once about how much pain he was in, i dont quite know how things will be bearable again, he was my hero.

i will pop back when i have got myself back together - i feel like someone has taken everything from me and im empty.

i hope you all are well and your christmas's were good. love to you all, extra love to Martyn and Doreen. xxx

signing off for a while now as tears starting again :(

Dear FJC. My thoughts and prayers are with you. It is lovely that you were there holding your dad's hand. It's hard, so very hard to accept what has happened, and the loss you feel is imeasurable. Please look after yourself, and take each day slowly.

with love to you and yours

PEABS XXXXXXX

FJC, so very sorry to read your post.  I just read your last post on your blog, it touched me very much. It's just over a year since my brother died and today would have been his birthday and he was my hero so I understand what you are going through.

Your father did so well and was lucky to have a daughter  who loved him so very much.

As PEABS said take each day slowly.

Big hug for you at this very sad time xxxxxx