Thank you so much for sharing your story Hopeful22 I am so sorry about your dad and I am sure that your account of what he went through after his glioblastoma diagnosis will be very helpful to others who are in a similar situation or looking after a loved one who has been diagnosed with glioblastoma. Thank you also for your kinds thoughts I am sure that our others members who have been affected by glioblastoma will very much appreciate knowing that they are not alone going through this.

Best wishes, 

Lucie, Cancer Chat Moderator

Hi,

I'm new to this and desperate to gain as much information as I can. 

My Dad has a thematic glioblastoma, we noticed for around a month odd behaviour, such as forgetting to close the fridge to trying to open the front door with a car fob etc. He had blood tests with showed nothing. Knowing that something was clearly wrong and being fobbed off we had no choice but to then wait a week. In this time confusion got worse, cognitive skills weakend and mobility impaired such as miss judging things and bumping into walls etc. My mother took him back to the doctors who then put him on anti depressants?!. The following day my mother informed me of this and I demanded a second opinion. Long story but we went, he was referred to the hospital that day. Which was less than 2 weeks ago now, as this particular tumor is so rare and aggressive I feel he looses a little more each day. He cannot remember that he has a tumour, which in a way is a blessing as everytime he heard the news via the doctors was the first time and his little heart broke and terrified him. We have now been told that they could try to gain a tissue sample through a needle however it is inoperable, potential radio but not chemo. its been agreed by all in the MTD meeting it is a thematic GTM. So we feel that there is no need to put him through the trauma of the op to confirm this aswel as speaking with the oncology nurse whom has advised that even if they do the op for tissue doesn't mean by the time he could have radio they would actually give it. 

He is restless and not sleeping, he looks as though he is asleep but is not and listens to everything you say. He struggles to be bothered to talk however will respond simple answers to questions asked. He is saying he is tired as hes not sleeping and he is constantly having vivid dreams. I dont know if these are symptoms that all have? No nausea he is now saying though his head feels tight. (Was on mass steroids for a week to reduce the swelling). He doesn't feel hungry but is eating as he feels he has too as he should. Mum says hes breathing is different and his voice has sounded a little different like a sore throat. 

I just want to be prepared for him, is there anything we can do? Anything to try? Thankyou. 

Hi

I really feel for you. Yes it's quite alarming how swift the decline is. My dad had a biopsy, but it did make him worse and there really was nothing to gain from it.

He was too weak or immobile for treatment and he made the choice to have his last weeks at home. It was only 9 weeks from diagnosis, to the end. All you can do is be with them and talk to them like usual and we never spoke about dying, we just spoke about our day, our news etc etc, to not upset him..as it really is out of their control and didnt want him to feel scared. Spend as much time as you can with him, because with no treatment, apparently the timeframe is maximum 3 months. Make them cosy, comfortable and full of love, I believe they are not in pain and the end was peaceful. I'm so sorry...I know how you feel xx

Thankyou for sharing I really do appreciate it I know it must be hard to relive it. 

I am still doubting the decision we have made to not have the biopsy, but you have confirmed the reasons as to why so thankyou. I'm worried as even if we put him through it bless him it may all be for nothing and to scared to take the chance to postpone him in a place where he may be scared and not my Dad. It will be his 60th birthday this December. But either way I will make sure he has a Christmas and his birthday. 

I know he only now has weeks but I've put everything I can into place to make sure everything is taken care of in the last 2 day since gaining the prognosis. As we want him home with us safe and comfortable. 

Taking each day as it comes. Thankyou again xxx 

My thoughts are with you. I can only speak from my experience, that my dad was my dad, right up until he went unresponsive (approximately 17 hours). Enjoy your celebrations and help him to be distracted from what he is going through.  With my dad, it was peaceful and they know you're with them. Sending my love to you and your family xx

Thank you x

I am so sorry to hear about your dad's diagnosis Hopeful22 and HelenJM. This disease really hits hard.

my partner (42) was diagnosed with a GBM 6 weeks ago and it still feels surreal. The doctors say at the moment it's inoperable and he will be starting on chemotherapy and radiotherapy in the next two weeks. The diagnosis hit him hard but he seemed to be symptom free on a low dose of steroids until he was weaned off of them a week ago, the very next day his symptoms returned (confusion, disorientation and poor spacial awareness). He started back on the steroids and he is now on a higher dose but this does not seem to be helping him with his memory. 
my partner is a teacher and is so intelligent but due to his confusion and memory problems he finds it difficult to find the right words and think clearly. This has caused him to spiral into depression and he is becoming more emotional and preoccupied with his thoughts. He gets angry because he can't think straight. I try to distract him from his thoughts but it's so difficult. It's so heartbreaking to see my amazing, confident, intelligent partner become like this. We have 5 children between us and the youngest is 4. They see their fathers cognitive decline and he isn't able to do the things he use to do with them, like homework, Reading, etc. 
we are so hoping that once treatment starts his memory will improve and this lifts his confidence and mood. 
I just can't believe this is happening and I'm praying the diagnosis is wrong and he gets better. 

 

Hi, I completely understand how everyone who has experienced GBM feels. My dad was diagnosed 8 weeks ago, on day playi g with my kids in the garden, the next day confused, disorientated and unable to walk unaided. It's inoperable, he's had 3 weeks of chemo and radiotherapy to placate him because he wanted to try something. We were told he has months, don't know really what that means, but I don't want to ask. He's had chest infections, UTIs and he's gained so much weight from the steroids, his feet and legs are huge and he's depressed. Not much help out there to deal with this. I sleep on the sofa whilst he's on a reclining chair, he can't go upstairs. His hand trembles and I read this could be mini seisure. Our lives have been turned upside down. I'm his main carer and I feel completely helpless although I'm doing everything I can to be there for him and my mother. It's resurring to hear that some don't experience pain and I'm hoping for that more than anything. 

hi x 

just wanted to get in touch as our stories seem so similar.. my husband who is 52 has a glimoblastoma... after suffering a seizure he was told the tumour was benign in 4 weeks it turned to stage 4 ... I’m totally overwhelmed by it all . We have 3 kids and I just don’t know what I need to be telling them.. they know he has a tumour and needed radiotherapy but I’ve not mentioned cancer. 

Im trying to keep everything together but now I’m not at work ( I’m a teacher ) I’m finding it hard to cope with it ( talking helps so much - but now I’m home I don’t get the chance to ) 

I’ve gone on enough now.. if you want to message back that would be good x 

I just want to send everyone in this thread so much love. What a horrific and devastating disease. I initially thought my mum (64) had severe depression, never in a million years did I think she had a brain tumour. Even when we first found out, we were hopeful they could do something. However, they won't do anything, no surgery and no radio or chemo. It's too big and too advanced. Totally hopeless. Right now I feel totally numb about it all, I can't even begin to imagine what my life will be like without my mum. 

I admire all of you for your strength and I'm so sorry you have to go through this. I can't imagine how hard it must be when you have children too. Try and talk to your friends or other family as much as you possibly can, even if its just a short chat every day or so. Its so important to have a network of support. Even if it's just to chat about something else to take your mind off things temporarily.