We Talk Brain Tumours

Hi Graham

Good to see you posting!  Hope you are doing ok.  How are the dogs? 

Love Ali xxx

Hello everyone. I used to post on glioblastoma why why why before this site changed. I'm struggling to get to grips with the new one and there isn't much happening on the other thread just now. I have posted on this one before and hope you don't mind me popping back. I'm sorry to hear of the sad news on here recently. I haven't had a chance to read this thread for a while.

My Dad was diagnosed with GBM in December 2008. We found out last week that there was a recurrence. A new tumour has grown at a different site. He had a second operation yesterday. It was a nerve wracking day and he was away form the ward for 7 hours. We were fully expecting that the tumour would have been removed but today received the bad news that once they saw it they realsied it was inoperable. It was too close to major blood vessels and a very vascular tumour. I'm gutted and don't know what to think. I feel awful that he's been through this major surgery and we're no better off than before. It breaks my heart to see him looking unwell in his hospital bed and I hope he recovers quickly so we can take him home. He has some weakness on his left side post op and his speech is a bit difficult. The surgeon seems confident this will resolve - I hope he's right.

The plan is for further chemo and maybe radiotherapy but he needs to recover from the op first. I feel now that we can't wait too long as this big tumour is still in there with nothing keeping it at bay. On discharge he is going to live with us as he is alone usually. We're arranging a transfer to the royal marsden as we live near there and are hoping they can offer further treatment which will give us all more time together.

Thanks for listening xx

Green Tree (Rona?),

I'm really sorry to here about the disappointment of you Dads operation. The Royal Marsden is a centre for the European Avastin trials, coordinated by a Prof. Mike Brada. It should be a good place for your Dad.

Thinking of you all

Martin,

Thanks Martin. I have read about it being a centre for these trials and I understand the professor you mention is a leading expert in GBM. I can't help but think my Dad will be offered more there than at his local centre.

Rona

Hi Green Tree,

You know you are more than welcome on this thread. It isn't as active as before, but we'll keep it functioning come hell or high water despite it's lack of user friendliness.

So Sorry to learn of your dear Dad's current situation, but hopefully he will make a speedy recovery and complete his transfer to the RM.  I have nil experience of there, but everything I've heard has been positive.

Best wishes and keep popping in.

Martyn XXXX

Martin how is Becky doing now? Hope you and your family are as well as can be.

Hi Green Tree

Sorry to hear about your father but from what you say the RM sounds like the best place for him where he will get the best possible treatment and care.

I'm glad you found your way back here as I found it full of caring people and it is a place where you can talk about things and people understand what you are talking about.

It will be a comfort for you father knowing that you will be close by and have you to care for him.

I am sending you love and positive vibs to get through this awful time you are going through and wish your father all the best xxxxxxxx

Hi Green Tree, Sorry you are having such a tough time at the mo. It must be devastating to think that after the shock of recurrence what seemed like a hope has now been dashed. Hopefully the Marsden will be able to offer some treatment to help. Its like living with a timebomb isnt it. My hubby having a slight blip at the mo, sleepy,headaches and slightly unstable on his feet. They think its down to oedema around the tumour and have increased his steroids to 1mg daily( it was 0.5mcgs every other day). His next scan is in January but may be brought forward if steroids show no improvement. Sending you lots of strength to get througth next few weeks. Good luck  to you and your Dad x

Marianne  (Dot) asked me to pass the following message on to her friends from Mac:


"Roger's funeral is at 4.30 p.m. this Friday. I am doing final reading/poem:

"You can shed tears that he has gone
Or you can smile because he has lived.

You can close your eyes and pray that he'll come back
Or you can open your eyes and see all that he has left.

Your heart can be empty because you can't see him
Or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday.

You can remember him and only that he's gone
Or you can cherish his memory and let it live on.

You can cry and close your mind, be empty and turn your back
Or you can do what he'd want: smile, open your eyes, love and go on."

Please copy and paste this to other people who mean the world to me on this BT journey, Sue - it is the sentiment that Roger had about his entire existence under this BT curse. To him, this would have been the message that he wanted to convey to us who are feeling such immense and overwhelming loss.

Love to everyone - I will post individually to everyone after this funeral stuff is over."

Sue
(Too sad to say any more tonight)

thinking of everyone on this thread :(

lots of love from Ali xxxxxxxx