We Talk Brain Tumours

JMS - I am so sorry to read about Alan. My heart goes out to you and your children.

Naomi.xx

Ah, I'm having one of those heartache evenings where I keep being reminded of what life was like before all of this happened.  Next to Ali's bed, there's a wedding photo of us both looking so happy (as we have been ever since we first met).  It literally hurts my heart to look at it and think of how things were.

She's stayed in bed now almost all of the time since she's been back from hospital, apart from a couple of hours on the sofa on Saturday.  She seems quite happy to stay there and sleep, even when being given the option.

Pete - sorry to hear you're feeling low this evening. Try to take comfort in the thought that you make Ali feel all relaxed and cosy and she can fall asleep easily safe in the knowledge you'll still be there when she wakes up.

Right, well here goes. My sister has been told and this is how it is.

Since my dad's last MRI a couple of months ago his tumour has doubled in size and is now almost 7cm. This combined with his rapid deteorioration means his oncologist has given him at best six weeks but more probably four. I actually felt the world stop for a moment when I heard that news.

The beast is now in both his left temporal and frontal lobe which is why all his faculties - speech, memory, balance, mobility - have been affected.

As soon as a bed becomes free in the Hospice dad is moving in until the end. I feel so relieved about it as I am so worried about mum dealing with him. His seizures are back, and they're big ones too, but he is on the maximum dose of epiliepsy medication and as his seizures are not caused by epilepsy there isn't a lot that can be done to control them now.

Had a lovely cuddle with dad, told him everything I need to tell him and even though I'm scared out of my mind, I feel strangely calm and accepting and at peace. He has been fighting this for 11 months and now it's time for him to let go. I have nothing but admiration for him and they way he has handled his illness, I'm not sure I could have done the same.

His oncologist told him he almost certainly has diabetes but sort of glossed over treating him for it now that his prognosis is so dire. He chokes even when sipping liquids now so it's hard when he has this unquenchable thirst.

Bizarrely, they offered him a one month course of chemo to try and halt its rapid spread but we all agree that dad doesn't want that. The gold star treatment of six weeks combined RT/Chemo back in Nov/Dec last year did its job and gave him six months of reasonably good quality of life but enough is enough.

Anyway, I'm rambling now so I will end it here. I love my dad. I always will. When there has been no-one else there has always been my dad. I'm going to make him proud of me and as he asked me to, I will do the best I can for mum.

Love to all.xx

Dear All,

I've been following the posts over the past few days. I don't feel I have the words to express what I want to or need to say at present. There's so much anger and hurt and love we are all experiencing and coping with. 

Just reflecting on what I have been reading, and dealing with personally, and letting you know I am thinking about you all, and for what it's worth, send my love and the thought that each of us will have the courage and strength to live through what is happening to us and the people we love.

Elaine B.K. 

Evening all,

As Elaine says, it's difficult to know what to say to you all, when so many of you are going through so much heartache but just wanted you to know that you're all in my thoughts and prayers, even though there are so many of you that I've forgotten most of your names.

Bless you all & keep fighting the fight.

Love & (((((((((((hugs))))))))))))))

Sue xxxxxx

Dear All

So much sadness recently. Love to you all and strength to cope with each new morning.

Cathi x

Naomi I am sorry for your news, it is dreadful watching them go downhill, this must be one of the worst damn things to be dealt

Hugs to all today xx

Thanks for all the support as always, we all seem to be having a bad time of it at the moment, on this bloody awful train.  Cannot really express what I want to say to each and everyone of you but be sure I really am feeling for you all, keep strong and love to you all xxx

Naomi, so sorry to hear your news. Don;t really know what else I can say :((