We Talk Brain Tumours

i've not been on here for a while as the last few months have been pretty tough to say the least!

Pete & Martyn,  so so sorry to hear you have both lost your loved ones.  You were both rock's to your wonderful wifes and a real inspiration.

I have read that many posts I cannot remember who has arranged the walk over saddleworth moor but if the situation allows I would also like to take part in that so please can you keep me posted with the relevant info?  I am from Royton originally and down near heaton park now so still fairly local.

I cannot believe that so many people have joined this train since I was last on here,  in a way its good that people can take comfort and support from the site but it is so sad that so many people are affected by this vile disease.

Thoughts and strength go out to all of you

x

Morning

Martyn so so sorry to hear of your loss, our journey has just began, my husband was diagnosed in Sept.

We also live nearby and would be keen to do the walk ..

 We have just finished the 6 weeks chemo and radiotherapy, but have now lost some spacial awareness on the left (tumour on the right) walking quiet unsteady etc sleeping a lot so he had a early MRI yesterday and given the news that the tumour growth has slowed down so we are really pleased, start chemo again first week of Jan,

Love and strength to you all

xx

Hi Guys

Hubby was diagnosed with inoperable GBM IV in May this year. He lost all use of the left side of his body almost immediately and it has never recovered. He has had four week radiotherapy/chemo in and has now just completed his fifth cycle of temozolomide.

He is currently driving the whole family to distraction with his obsessions, e.g a fish aquarium, surround sound, a speedboat and now a racehorse (we are not rich by the way!!). As a family, we are starting to get into a rhythm with it all and slowly slowly we are learning how to cope with that aspect although we all find it extremely traumatic and exhausting at times. 

As some of you may have read from my previous posts he is also prone to some fairly nasty emotional outbursts which are increasing in frequency I have noticed. But again, we're learning to take this all in our stride.

He is also showing the fairly typical signs of confusion and word mixing that I've read about very frequently on here. He is completely aware of it and mentions it himself.

But today he mentioned that he feels like he is really having to put in a lot of effort to speak. He says he thinks there is something wrong with his throat and it is taking an enormous amount of his energy just to get his words out. This is very worrying for me. I have read of other sufferers who lose the ability to speak. I know if this happens to him it will be absolute torture (as it would be for anyone of course). He never stops talking from the moment I get up to the moment I go to bed so I don't think he will react very well (Lord only knows how I'd react in his position to be honest) I was wondering if anybody else has experience of this and, if so, is this a first sign that this may be happening to Tony? I'd rather be prepared so that I can read up on support tools and mechanisms and be up to speed  for if/when.

With much love to all.

Pam

x

Dearest Martyn, sorry it's taken me so long to get on-line and reply.  Still shocked at the news despite Doreen's longevity with the disease.  Sending you lots of hugs and best wishes x

Dear Martyn.......may deepest sympathy to you and your girls, Doreen is now at peace wishing you all the strength and love during your next part of the journey on this devastating train, your love and devotion shone through your posts and I would like to take this opportunity of thanking you for the much appreicated support you have given to me. Huge Huge hugs Julie xxxxxxxx

Hi Pam

This happened to Paul.  His BT was in the left parietal region and although his first CT showed tumour reduction he started to struggle with speech and mobility so was treated as progression TMZ was s topped and he started on PCV.  We contacted the speech therapy team who reviewed and provided booklets to help.  He continued to have difficulty with words and lost speech completely but somehow remained cheerful and we coped.  Even writing became difficult as he knew what he wanted but it didnt come through properly.

He also wanted a racehorse so i joined Elite racing for him - you get part ownership and lots of literature and information each week.  He wanted many things and when possible I let him.

Keep smiling, deep breaths and rant on here - we can listen

Joanna xx

Dear Martyn

Im so sorry to hear about Doreen

My thoughts are with you and your family at this hard time.

Dear all.

The cremation is next Thursday at 1115. Everyone has been absolutely wonderful. We will be playing Abide With Me by The Grimethorpe Colliery Band on entrance and we will be leaving to Three Little Birds (Don't worry about a thing)  by Bob Marley. Doreen loved them both. We are still very calm and collected. Thank's again to you all. Lots of love and good wishes. Martyn XXXX

Dear Martyn,

Love and strength to you and your girls, What a fighter Doreen was and you were both such an inspiration to us when we started our journey, over 5 years ago now. I like to think of all of our loved ones now sitting in a new carriage, tumour free and swapping stories, what a one Doreen is going to have to tell!

Thoughts with you all.

Ange xx

Page 7 tsk tsk!

I just wanted to pop by while all my kids are sleeping, as are the dogs and hubby is out karate training - some ME time!  

Martyn, I am a big fan of Bob Marley and love Three Little Birds, may well be played at my cremation, Doreen had good taste!  Glad to hear all is still calm with you and yours but I still send extra love & strength to you, you can store it if you like for later use :) xx

All that is left for me is to wish everyone the best Christmas they can have in their circumstances and that 2012 is a Happy, Healthy and Kind year to us all.......a cure is what I wish for every year!!!!!!!!!

Lots of love & strength to those who want or need it xxx