We Talk Brain Tumours

Hi all.

We would like some help if you can assist in any way. I've started to contact as many charities/organisations as possible to ask them to contact SDBTT, so that they can join forces to raise awareness of BT to present something to 10 Downing Street. Would as many of you as possible also ask any organisations if they could do this by emailing etc, if you are able to, as surely the bigger the LOBBY the better it will be highlighted. MARCH is BT awareness month!!

Love to you all, Thanks DianneJ for setting this in motion.

PEABS XXXXX

Bunk up.

XXXX

I haven't been here for a while and offer my deepest sympathies to those of you who have lost your loved ones since I last posted.

My mum lost her battle too on 11th January, she died at home with us all around her.  As she died she opened her eyes (for the first time in two weeks) and smiled at my dad, the smile remained on her face right up until I last saw her in the chapel of rest just before her funeral on 27th January.

I hope to God that a cure is found one day for Glioblastoma and of course all brain tumours and cancers, it's a terrible disease and my heart and love goes out to all that are coping with it in one way or another.  I found the site www.brainhospice.com so helpful and accurate in its timeline and it also seemed to offer a strange sort of reassurance as knowledge (no matter how grim) is power.

Love to you all and I will try and pop by and offer help to others once I get my head around the fact that my mum has gone.

Fee xx

Fee, so sorry to read of the loss of your Mum. Your account of her passing was so moving.

Daisie, thinking of you both. Hope Graham is comfortable.

Love to all.

xxxx

Hello Fee,

My condolences at the loss of your Mum. She had a very short illness didn't she? You must still be in shock from the diagnosis.

As Sue said your description is very moving. I'm glad you found support here and on the time-line website. Having that information helped me too.

I hope  you feel like posting again. Seats are reserved on this train for everyone who writes here.

Best wishes,
Miggins (CH as was) xx

Fee, I am also sending my condolences at your sad loss.  I hope you find comfort in that last smile as that is a lovely image to have been left with.  Take care xx

Fee So sorry to read of the loss of your Mum but what a lovely memory for you & your Dad to have & cherish. 

As for me I've been feeling sad & sorry for myself. Last night I was watching Dancing on Ice which I very much enjoy normally. However during the ad breaks the sponsors MacCleans show a variety of happy couples laughing & kissing. It made me envious & I realised that me & Pete will never share those kind of moments again.Pete was never romantic in public  but we had our moments in private.  I've been with him since 1971 so he must have been doing something right eh!  Now with Pete paralysed & the effect that the BT has had on him generally the chance of a cuddle from him has gone completely. It seems that in some cases couples remain close throughout the illness but in our case Pete has withdrawn & shows no emotion, possibly because he was never very demonstrative in the first place. Don't get me wrong I always knew he loved me & that he still does deep down but I seem to be just a carer to him always on call to help but nothing else.  Whilst I can kiss & cuddle him (& I do despite the practical diificulties with his hospital bed & special armchair that he needs to sit in)  it is not the same when there is no responding gesture. Hence me being sad & blue. I love him dearly & always will but times are bad when you feel envious of TV couples!!  There now I've put it down in writing I'll  hopefully be able to get over it & next week I'll try & remember to make a cuppa each time the breaks come on. By the way for those that also watch the programme my favourite is Hayley followed closely by Danny. Amazing how all the contestants improve so quickly even Dr Hilary looked much steadier on his feet/ice this week, I never got past holding on to the handrail whilst going round the ice rink when I was younger but then again I can't ride a bike or do anything that involves balancing either. My knees are testomy to that as they have so many scars on them from when I used to fall over all the time, my mother said that I could trip over a sixpence!!!!!

Take care everyone

Sue xxxx                                                                                                                                                               

Suetoy-just saw your post and had to respond. It is heartbreaking going from wife to carer as happens in so many cases. This bloody illness just locks our loved ones away from us. Cant say much more as I lost my darling hubby 5 weeks ago and I dont know what else to say(for once). My posts are renowned to be long. x

Hello all,

Just thought i would pop on and say hello to everyone.  Its been some time since i was last on.

Mandy & CH  - im glad you liked the poem, though i should rightly point out that we are not using three verses :) instead three or four lines.  Mum found it in the book Sheila Hancock wrote after the death of John Thaw, she's actually read it three times xx

Martyn - how are you and Doreen? I do hope you are well and Doreen is keeping you on your toes as usual ;o) xxx

Suetoy - Not that i can comprehend what it is like to change from wife to carer... i do get angry and jealous when i see couples of my parents age just strolling along and with grandkids or on holidays, realising that my mum will never have that. (still find it all too easy to be consumed by anger)  love and lots of hugs xxx

To everyone else on this horrific journey i wish you lots of strength and send you lots of love x x x

We are now 8 months down the line....8 months? you think just how can that be....  But i guess we are keeping occupied, we have my sisters wedding in July and i am chief bridesmaid ( i will perform this role three times this year eeek) it is good to have something to look forward to but sad at the same time.  But a place will be set for dad and candles lit in his honour.  We have found flowers which are fondly called 'sweet williams' which will decorate each table.  Fraser will give Rachael away and do dad proud.

In March the local firebrigade will hold their annual firemans ball, this year they have asked us to nominate a charity and we have decided that all proceeds will go to Brain Tumour UK, which is wonderful.

Dads headstone is now ready, and should be coming home to Maybole in the next week.  We managed to get an image of table mountain lasered on to it along with the scottish ambulance service and boys brigade icons.  Its been a long time coming but we wanted to get it right ...we just hope he isn't looking down and thinking 'in the name o god...wits all the hassle' :)

Rachael and i took mum to Paris last weekend, we had a good laugh..and never cried once which is rare, but perhaps a sign that we are doing ok.

I moved in with my boyfriend towards the end of last year, if i am honest i find it very difficult to go back to Maybole and stay in the house that dad and all of us grew up in, the garden seat where he used to have his smuggled cigarettes sits vacant and its roof has been torn in the bad weather. But im sure it will get easier.

As always our biggest concern is mum, think in some ways she is fed up with us and the constant barrage of e-mails and phonecalls from us wherever we may be...we barely give her a moments peace(we dont expect this to end anytime soon)  She is on a different footing from us now, she finds it very hard to be motivated about anything.  But regardless.. she is amazing and wonderful.

Jeez i dont half go on do i!?

Anyway, forgive me my selfish waffling but i just miss my lovely dad more and more each day  and this is the one place that i have found where i can say so freely.

Love to everyone always

Becca xx

Hi Everyone

Suetoy, I think we'd all agree you've every right to feel sorry for yourself, don't beat yourself up for that x.  I know that when I was caring for Peter there were moments when I wondered about our relationship but then something would happen and I would see how much I meant to him still.  Your Pete's inability to show emotion is more to do with the effects of BT and surgery I'm sure and I know you know he can't help it but it does make it harder doesn't it?  I know my Peter would appear to ignore what was going on around him, even when we were trying to talk to him directly, I would have to prompt him into some kind of response but he too was withdrawn from everything - it made me very sad to see him like this and for all of us to live like this.  He would say he didn't love the children, he loved me, yes, but not the children - I found this upsetting as we had, together, brought the 3 children up and to hear that said by their dad was horrible really.  I knew he didn't mean it and there were times when I gave him a 'good talking to' as it wasn't the kids fault they were teenagers and that was the root of the problem, they were too fast for him and he felt excluded and often I felt he deliberately excluded himself to prove a point - but in reality I knew he couldn't help it.  I just felt piggy in the middle.  Good to read you're a fan of skating on ice too - I said the same about Dr Hilary too!

Becca, lovely to hear from you!  I thought three verses was pushing it - I think CH has read or has a copy of Sheila Hancock's book, I keep saying I shall, but haven't yet, my concentration on TV or books isn't there yet.

Becca, the rest of your post has given me a mixture of sadness and smiles - you know your comments on going back to Maybole is much like my eldest daughter.  She skuttled off the day after the funeral and has hardly been home since and says she doesn't want to - it's hard but I have to let her do this her own way.  I'm here when necessary as mum's are hey?

Then as for your mum, I can relate to that too - I decided that 'disinterested' best describes the way I feel about life these days.  I get through each day, doing whatever pointless task I have to, but done without joy nor interest so I completely understand you saying your mum is not motivated to do anything - I think that somewhere down the line we become restless and are able to find the energy to do something, whatever that may be, and maybe that's the sign we are ready for another part of the journey.  Like I say, lovely to hear from you, take care xxx

I visited the hospice today - they tell me I've done well to go back so soon - maybe because Peter didn't actually die there has made a difference, I don't know.  Actually I felt a need to see the people who were so heavily involved in Peter's care and the support that gave us - both me and the hospice feel cheated Peter didn't pass away with them after all the years he had gone there.  After all this time to just turn away from all those people is too difficult, they have become part of my life so since they always offer me a milky coffee or two I will probably go back often and have a general chat.

Thinking of so many you xxx