We Talk Brain Tumours

Sorry to hear your story Amanda- just looked at your profile, hope is difficult when faced with something so devastating as this, but my daughters story I think offers some hope, she is nearly 18 after being diagnosed witha grade three anaplastic astrocytoma, poor prognosis as it re-ocurred so quickly- well it is now almost three years and last scan was clear, obviously still some problems and need for regular scans but hopeful we are ! take care Love to all Dianne J x

Evening all.

Sorry I haven't been around recently, not been feeling very positive and not wanting to bring everyone down on here!

I saw my dad yesterday for the first time in ten days. I can't lie, I was shocked at how much further he has deteoriorated. Mum brought him over while five of my children were at school and it was just the baby at home. Dad was visibly upset when he got here and just kept repeating that he wanted to go home. He tried to get up and leave so he could get a bus and when mum told him he had to stay here til she drove him home he was in tears. I got him a cup of tea and settled him in a chair and he had a seizure. He was making a sort of low droning noise and was rocking slightly. It went on for about a minute and afterwards he crashed out fast asleep for about an hour. What shocked me most was how mum carried on as normal during his seizure, just reassuring him every so often that she was still there.

When he awoke he was convinced that he'd lost £30 and made mum take him out to their car where he spent ages looking for it. He was cross with the children and when my 11 month old baby put his hands out to him, dad pushed him away. This is a man who lived for his grandchildren, who was fun and silly and everything a grandad should be. My baby picked up dad's shoe to discover it and dad snatched it away and shouted at him.

The rational side of me tells me this isn't dad, it's the bloody tumour but the heartbroken side of me is already grieving for the dad I used to know.

He continues to decline physically. He is still losing weight (he has never once gained any, even when on high doses of Dex), his left leg has been swollen for months and his hospice team seem unperturbed by it and he has started to slump to one side and appears to find it hard to hold his head up? Does that sound familiar?

Love to all on this journey.xx

Amanda,

I've just read your posts and profile. You are an amazing woman. Keep going and keep fighting.xx

Evening all,

Gosh Amanda you are so brave, I have read your story and admire your strength and that of your daughter I am so sorry to hear your story.   You are right though, kids can get you through anything they just don't seem to be affected like us adults and seem to bounce back s0 quickly and wonderfully.

Martin I have checked the american treatments and somehow just don't trust it all.  I think the suggestions you have been given by the many others with sticking to the NHS and seeing what European treatments they suggest is the best idea.  And I would go for it, marriage, children the lot, as everyone says, they never know what is going to happen with this illness and if your partner can cope, I wouldn't waste a second.  I broke my neck last year, fully recovered now, but the kids saw it happen and they were upset and then over it, only came to visit me in hospital for the snack machine and didn't stay after that! bless them!

You are all so brave on here, I often feel like a fraud as its my mum and not my partner etc. it just helps so much reading your stories on here and asking questions of you all and I dunno, with this help, I can kinda deal with it better as I have some insight into what is coming or not maybe.

thank you and love to you all xx

Hi all,

As you can tell from my posts I am also new on here,  been searching through all the forums etc and came across this thread which relates far more to my situation.

My husband was diagnosed in march with a diffuse astrocytoma (non operable due to location),  he had 2 biopsys, the first he bounced back within a day and was his usual self however he has never fully recovered from the 2nd.  He has been on the dreaded dex since march and they have caused alot of muscle weakness and that joined with the affects of his tumour have resulted in virtually any coordination and strength and he is now in a wheelchair and needs 24/7 assistance with the basic everyday tasks that we all take for granted.

He is only 36 and has always been a very fit, active individual so finding out about his condition and seeing the impact that this has had on his life in such a short period of time is soul destroying.  I feel like my whole world has been ripped apart and upto now have been coping but the last few days I have ended up an emotional wreck.

We have an 1 year old daughter who bless her is taking this all in her stride and appears to be handling this better than I am.  Someone said earlier in this chain that kids are resilient, the surely are she is an inspiration and keeps me going. 

Martin, I would certainly not let your diagnosis stop you from planning your future with the person that you love and having children together.  None of us know what is round the corner so grasp hapiness with both hands and make the most of it.  Do not look at the statistics, you have age on your side and that is what I am grasping at with my husband as he was very strong physically before all this and hopefully will be able to fight more.

I don't really know what else to say,  I have found it difficult putting this into words as I would not usually comment in forums etc but I have found so many comments touching and inspiring and I feel that I have finally found somewhere where people do actually understand as unfortunately they are on the same rollercoaster ride.  Sad to be talking to you all under the circumstances we are in.

Liz   x

sorry daughters age should have said 11 years!

Thanks for the message Dianne x...your daughter sounds truly incredible, her resilience must never cease to amaze you? You've had a much longer journey than us so far almost 3 years versus 3 months and already to me it feels long!!! its been a wierd thing having our whole existance turned upside down , sometimes I wonder how long I can cope for just feeling so sad inside all the time??? I feel cheated almost...and you re evaluate everything don't you?... the smallest things almost seem magical at times.

Your story definitely inspires hope...and that is all I have now! the hope that there are always exceptions and she can make something amazing happen...eventhough those bloody statistics speak for themselves!!

I have a card that my sister gave me... 'now faith is being sure of what we hope for and certain of what we do not see'...kind of apt I think and becoming some sort of mantra for me!!...stranger things have happened and amazing things occur everyday.

Where there is love there is hope! Take care Amanda

Liz, I know exactly where you are coming from, in my case I'm perfectly fine and able-bodied (at present). At times it feels as if I'm looking at it from the perspective of a family member rather than the patient himself.

I didn't have too many problems with the Dex myself, apart from the non-stop eating, insomnia (was getting up at 4:30 am most mornings) and a little bit of weakness and tiredness when coming back off of the steroids. I was only on them for around 6-7 weeks including the weaning off period. I was up on my feet about 15 minutes after my biopsy and haven't suffered any ill effects from the surgery.

What is the grade and location of his particular tumour if you don't mind me asking? Why did they biopsy the tumour twice?

Stay strong for him Liz, you won't know it but just being around to occupy his mind and provide a brief distraction in his thoughts every now and then is a massive help. I'm trying to surround myself with as many people as I can at the minute and it is really helping me give it a different perspective and continue as normal.

Hang in there and please do keep posting and keep us all updated, I'm not one for forums myself but it's a really good release and therapeutic in a way, stick with it.

Thanks Deli x

Amazing?...no I don't think so , perhaps bloody unlucky is more the word!! ...as are all of us who have to watch our nearest and dearest reduced by these evil tumours.

I'm so sorry about your father and seeing him acting so totally out of character must be horrendous...I know exactly how you feel, my daughter even at 6 years old is already changed to me.I miss her 'well' self so badly she was always so kind and loving and at times she still is, but her personality is changed with traits of frustration and anger and they become more unpredictable... so in a way I've already lost that part of her, I think I've grieved it already and the girl/woman she may never become, so its kind of a double whammy. But she's here !!! and my only job is to love and keep her smiling for as long as possible...well the half of her face that still moves , that is :))...she has some nerve damage.

It sucks..it really does ..try to still see him and remember him at his best...thats what I do with Abbie and when something happens that upsets me I just remind myself as you say.. that its the disease..hard I know x

All the best Amanda

Hi Martin

He has a grade 2 diffuse astrocytoma, it is embedded deep within his brain just at the top of the brain stem and is the size of a satsuma. It is in the right side so has taken the left side of his body. Due to the location,  that has affected his co-ordination and strength.  Oncologist cannot confirm if his mobility will return after treatment,  it is just a waiting game now.

The first biopsy was inconclusive so they had to go in much deeper the second time.

He has never been one to talk about his feelings so I have no idea what is going on inside his head,  he says he doesn't think about it but he must because it is all I do think about wondering what lies ahead.

The only thing that he does repeatedly ask is am I here for him, he must be so scared and cannot believe he asks that.  We have a great relationship and have been together for 15 years, married 13 in August and I have no intention of going anywhere.  Love him to bits,  he is my world and my soul mate.  I just want him back.

Please keep me upto date with how you get on and I wish you all the best

x