We Talk Brain Tumours

Lynn: My heart really goes out to you! My daughter is 24 and I keep wondering what would have happened had they discovered her tumour years ago- apparently its been there for years and years... but I console myself with the fact that at least I've seen her grow up and become a mummy, and try not to dwell on what the future holds for her 2 little kiddies.. I'm so so so sorry that you only had your lovely girl for 13 years- I'm sure she was very very very special. And I'm sure that your "one" child is too. And they both have one very brave and loving mummy xxx

Hi to all on here

I'm so sorry for those of you who have lost your loved ones... your wise experience and compassion is worth its weight in gold, so please stay on here as long as you feel you want to xxx

To IdreamofFigi-- I totally understand it when you say your grief started when your mum got ill.. I too am feeling like that.. I keep thinking of my daughters 2 little kiddies and how are they going to be when they dont have their mummy any more.. and wondering how its going to be for the rest of us when my daughter isnt here any more.. and how is she coping now being ill as she's a single parent.. I have times when I cry with frustration and the unfairness of it all, and times where I forget for a moment then remember and feel so sad.. 

And how does one cope when people bombard you with information of what they think the doctors should be doing with your loved one like they think I'm not up on this computer every night researching treatments all the time?

Susie xxx

Hi everyone,does anyone know or have experienced depression, don t know whether I should be advising GP who I would imagine would need to see Alan but he is very good at telling everyone he is fine and OK?   Should I just try and coax him out of it? Any suggestions xx

Hi JM7,

Sorry if I appear flippant, but depression is part of the package, for both carer and cared for. Some benefit from counselling, medications, but I haven't tried either for the two of us. My personal experience is just working through it, although it is at times a very deep, black hole.  Sorry I can't give you any better advice, it may be worth asking your medical and nursing support.  Martyn

Thanks Martyn, think will keep working through it xx

Hello JM7,

My husband has struggled times with both anxiety - eg i'm dying now and and won't make it till the Dr arrives in 15 minutes- and very low despondant mood. He now takes 15mg mirtazapine at night which has both an anti anxiety component as well as being an SSRI-selective serotonin re-uptake inhibitor. It works for him and and he's quite happy to take  it, although he may have forgotten that it's actually an anti depressant!

I spoke to the GP first by phone to outline quite how low and anxious his mood was - like Alan he's very good at presenting an ' I'm alright front ' !

Don't know if this helps but my personal feeling is if there's a drug with limited side effects that makes life easier for my husband then it's worth a try - it can always be stopped if it doesn't suit.

Take care

Rosskin

Hi Stephen,

so sorry that your Mum is deteriorating, it is so hard to deal with. I lost my Mum to cancer, 15 years ago. I still carry some guilt, around telling her diagnosis and prognosis, my brother did not want her to know, but she kept asking me, I felt i could not lie to her eventually i told her. she seemed to give up after that, not sure it was a coincidence or she just decided to give up. Either way we knew it was inevitable and i guess either way it would still be hard. Still feel guilty though but i tell myself she must  have had some idea to keep asking.

However today having survived cancer myself and now supportting my son through his brain tumour i believe that we all need to hope and i am not sure I or my son want to know how long. We just want to enjoy everyday as it comes.

Sending you some hugs. Suexxx

Apologies if anyone found my post about how long is left a little strong and possibly upsetting. That's not my intention. I was just wondering as others at home have asked that question too. I have since told them not to even think about it. I think the enormous financial burdon we're currently in has caused allot of stress here.

Anyhow, I have good news.

Mother comes out of hospital tomorrow and goes into a remarkable care home. She's in a very good mood and is so looking forward to it. I was really happy to see her so upbeat!!!!

There's another good side to it - the care home is a mere stone's throw from where she worked. Her co-workers can see her easily now!!!!

I'm planning a special Mother's Day to make up for not being there on the day as i'm heading on the massive motorcycle ride in respect and support of our troops which was planned lasy year after I attended the first Wootton Bassett ride. My Dad was a little annoyed when I told him that I had plans but has come round to planning something the day before.

He doesn't know how stressed i've been as I don't show it at home. If he knew, he'd understand.

Take care all.

everyone's different - some do want to know how long, like my daughter does, so she can plan for her 2 tiny children, and we are so much happier now we know its years rather than months (for the moment at least)... but I must admit I found it very hard when a friend rang me when we first got the diagnosis 2 months ago and asked me "how long" as I hadn't actually thought that it could be terminal -- I was speechless!

When my mum had cervical cancer 16 years ago I wish I knew that she was in her last few months with us, instead of which it all completely shocked me, how quickly it all happened. Then my dad had a heart attack and died 3 weeks after she did... she had always told him he wouldn't last without her, and she was  right!

We didn't get a choice. Whe Christie was diagnosed 3 weeks after her 18th birthday she was told from the onset that she had about 18 months average and that her care would not be a cure...just to try and keep her alive as long as they could. It's not just us that are different, they medics are as well.

PEABS XXX