We Talk Brain Tumours

hello my fellow train passengers. I have not posted for some time but do still read and think about you all. It is now 8 months since my Dad passed away and I don't always like being reminded of the ins and outs of life caring for a loved one with a brain tumour. It is still a very raw and emotional area as I'm sure some of you will understand.

Anyway I am here to ask for your opinion. I am getting married in a few months and we are asking people to donate to brain tumour research in memeroy of my wonderful father, in luei (sp?) of gifts. I want to set up a just giving page and can't decide between the SDBTT or brain tumour Uk as the charity. I think they both do equally good work really but need to choose one for the page and funds to go to. I am particularly keen to support research this time (I have raised a lot for my dad's hospice in the past) Do you have an opinion about which is better to give money to or which gives more of their donation towards research?

thank you in advance,

Rona

I have decided to go with SDBTT - sorry for not waiting for replies!

R

Hi there

Funny we have just set up a Friends of SDBTT in tribute to my sister who lost her fight to GBM4 in September 2010. I think they are the largest single charity raising funds into brain tumours. Good luck and congratulations for your wedding day X

Hi all,

Ann thank you for the invite to this thread.

I am just reading older posts at the moment and catching up, what a lovely bunch you all are. 

It is my dad who has cancer, it is in his ear, jaw, skin and brain. It started last March, got much worse in September and now we are starting to see his deteriation even more and it has been such a big relief reading some of these threads that I am not alone in the struggle of emotions and in the frustration that comes with care and coping with getting the right things to make my dads last journey as comfortable as I can.

Today has been a good day, he has been in good spirits.

Jan

Hi Greentree, nice to see you back. What a lovely idea to donate your wedding money! 

Just  quickie for advice really. I get a feeling I know the responses I will get 'it's her choice etc' which is true, but I still worry.

Basically my mum's bed is now downstairs (she decided she was scared to come up/down) and we have a wall mounted support on the 2/3 steps that go up into our living room, but mum is refusing any other aids and I'm worried about her safety. (she is in terminal stages of GBM4) 

I know it is her choice and we have to respect her opinions, I certainly wouldn't want to rush anything or upset her, however her right side is so weak now it is nerve wracking seeing up go up and down even the 2 steps.  I would really like for them to fix a support next the toilet just to help mum steady herself and also a thing alongside the bed incase she falls (she has once, and is is so very weak she'd never be able to get herself out of bed now, but I'm worried she might try as sometimes she gets confused.) 

I have never actually broached the subject with mum (scared of upsetting her), but I've voiced my concerns to dad, but he wants all decisions passed by her (this is reasonable, she should be included) but if she says no (which she pretty much does to most things) he won't go against it. I am just os scared that if she falls and hurts herself she will end up in hospital which is exactly where she doesn't want to be. 

Am I being over-concerned? I don't want to go against mum, and I definitely want to include her in decision making, but is it wrong to 'over-rule' her decision to keep her safe? Or do I have to trust that dad will make a decision if and when she really needs it? (He's not normally in charge if you know what I mean)

She has also asked my dad and a nurse friend to kill her, so it's not been a great time, can't say I blame her though, watching her body and mind failing her is breaking her (and our hearts)

Not short, sorry, I don't do short do i?

Hello idreaoffiji

I am sorry that you are having this dilemma about your mother.

I know exactly where you are coming from when you fear your mam falling, my dad has fallen a few times but he didnt see the danger as we did.

We asked the macmillan nurse to suggest it to him as an idea for him to think about as a 'just in case he might need them' precaution.  This meant that we didnt have to ask him and he didnt know that we had already discussed it.

It worked for us,  Jan X .

Idreamoffiji

I think you are being very realistic and I personally think that you yourself could suggest it directly to your mum just to say that its only a just incase she needs to use it. Or you could like Janice has suggested, get the Macmillian Nurse to approach the idea. She doesn't have to use just because the handle is there. It reminds me of when my father, who was really independant, didn't want to have a second hand rail down the stairs, but we did manage to persuade him saying it would be in case he needed it, and he began using it straight away.

It sounds very much as though she is very frightened as to what is happening, particulary if she is the main decision maker in the house. Thinking of you very much as a family.

Rona ( greentree)   You can specify to SDBTT in which area you wish your donations to go to. Ie- research, patient support etc.. I personally do clarify when sending monies what area I wish to support.  I appreciate that charities have obvious salaries and admin costs, but i do like to know where my money goes and think research into brain tumour cures is imperative.

Best wishes to all

Bringing back up, love to all.

Martyn XXXX

thanks Martyn for the nod on moving to this site, did have some responses on the other forums too. haven't the energy to stay up any longer 2night so will check back 2moro. xxxxxx  please feel free to check out my bio x