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End of life with Glioblastoma stage 4

My dad is a 53 year old, diagnosed with Glioblastoma in May 2017. He received radiotherapy and then chemotherapy which all treatment was stopped in February as nothing was doing anything for his tumour at all. He wasn’t able to be operated on as the tumour was so deep into his brain. He also had many other little “satelite” tumours over his brain caused by the GBM. 

 

He was told that he would have 1-2 years life expectancy and he has good days and bad days. Currently, he is in hospital for severe abdo pain caused by constipation but it is more of a blockage in his Intestine.

 

My dad is bed bound now and has been since February and also paralysed down his left side.

 

My question really is, what can I expect to happen at the end?

  • HI I am just going through the same - my mum is a little older and had a stroke first which she was given various medications including Clipdogrel which is a blood thinner, her tumor has grown 1cm in a month from one MRI scan to the next and the first thing we have been told to stop is her blood thinners, and not to give aspirin either. I believe this is because blood thinners make the tumor grow quicker.

  • My husband is about the same age of your father, as he left this world. I’m sorry~truly, I feel your loss. Your father sounds like a similar personality as my husband. We were medically evacuated to UK two weeks ago from a country in the a Middle East where we worked and lived. Long story, but during a round of ultimate frisbee with our daughters and friends my husband hit a tree. Which led to a concussion and stitches, to an MRI, to a brain tumor, to an emergency tumor removal surgery (in a 3rd world country), to me literally carrying his tumor to the local pathologist, to glioblastoma diagnosis, to his rapid decline, to an emergency air med evac to a UK for proper care. And I’m sitting in a foreign country for almost 2 weeks, watching my husband fight well I might add, to regain his walk, his talk, and thinking. He was a brilliant lawyer in the states for over 20 years, and he is fighting to read and compensate for losing his higher cognitive thinking and vision. So now, I’m trying to learn more about this evil GBM.  And as you know too well, quite overwhelmed as the shock of the last few weeks settle in. We have five daughters. And reading your story has pierced my heart, knowing from a son’s perspective. Thank you for sharing your dad’s life, humour, and fight! I’m confident he is proud of you and you will carry on his example too. I cannot imagine the pain, grief, and depth of loss you feel. There really aren’t adequate words. But thank you thank you for sharing his story. 

  • Hi, I’m so sorry to hear about your mum.

    this is the most cruel evil type of cancer. My dad  was diagnosed April 2018, we lost him at 7am this morning. He was 52. He fought so hard. this time last month we were having a normal conversation. I still cannot process it all. I am numb. He was fine until 5 weeks ago when he was told his platelets were to low for anymore chemotherapy. Then he had his first seizure, then another. That’s when it began. For the past 2 weeks, he has just slept, until he slipped away this morning. If I can answer any of your questions, please just message me. All I can say is the only comfort we got out of all this is that my dad never seemed in pain, just extremely tired, until he left us xxx 

  • I’m am so sorry for your loss this made me cry this morning reading this I just feel so heartbroken for you I k so I don’t know you but k owing we have gone thought the same is just so sad I know I still have my mum here and I spend everyone moment I can with her but you just don’t know when this is goin to happen and I think that’s what I’m finding hard like your dad my mum was told April last year she has her ups and downs she has just got over shingles she seems to be a lot more tired than she was and I don’t no if this is how it goes or what’s goin to happen next I just can imagine my life with out her or how I’m even goin to cope..

    Im sending you so much love thank you for your message xxx

  • Please Keep talking to your mum, she can still hear you, hold her hand, cherish every second. It was only Tuesday I said to my dad “il see you later on dad, love you” and he managed to reply “you shall” and squeezed my hand. Then from Tuesday night he has just looked like he has been in a permanent deep sleep. No pain, no suffering, just asleep. I’m only on day 1, but god I’m struggling, I never knew I had this many tears and I never knew pain like this existed. At 31, I never thought I’d lose my dad, he was only 52, not ready to leave this world yet. The only comfort I get out of this whole nightmare is that this was a pain free death and he always looked comfortable and peaceful. He has now gone to a kinder place. My thoughts are with you and your family at this very difficult time and thankyou for listening to me droan on, I just wanted to share my story with someone who understands and answer questions for people that I never knew the answer to, until now x x x

  • Thank you..I have so many questions but I don’t no where to start I do talk to mum all the time and always tell her I love her she really is my best friend..

    my mum did last a few weeks ago that she thinks this is the start of the end now and that she does feel different she isn’t in any pain and I’m so happy that she isn’t I find that when I’m with my mum she looks and  stares at me a lot  And I always ask her if she is ok and does she want anything but she just says no I’m fine I’m just looking at you..did you dad do things like this I know everyone is different and I’m sorry if I have upset you asking I just do t really have anyone else to talk to about things as me and my brothers have fallen out so things aren’t great here xx

  • My dads final 10 days were mainly of sleep. He could still suck bits of water from a straw and turn over himself, until the day before he passed. In fact on Tuesday, I said to him “I bet you’re loving these nurses coming in and moisturising your feet hey dad” and he replied “yer” and smiled. I remember that he would randomly open his eyes and stare at me, then close them again. I feel like he knew it was me and I also feel like he wanted to speak to me but just couldn’t? If that makes sense ? It’s all so surreal. It’s just heartbreaking that there is so much scum on this earth and it’s our lovely parents that get struck with the worst imaginable type of cancer. How is that even fair? ? ? It sounds like your mum is very peaceful and not in any pain. Is she on steroids? Vicky xxx

  • Hey Vicky omg I completely understand and so agree with you how can loving people go through this when there is people who don’t deserve to live makes me so angry my mum and your dad and everyone else should be livening there life..she most definitely is she is in a home as could stay at home anymore but she is very happy there it breaks my heart leaveing her and I hate it but I always phone her everyone morning her eye site is starting to go now and nothing on her left side works at all Yh Shen is on so many meds her skin is so thin and just bleeds so much if it get cought they wanted to take the steroids down but can’t as she will have seizures the last scan mum had was about 2&half months ago and was told it’s grown and aggressive now they gave mum a few months from then so really the end of this month she just looks so well that I can’t see it coming and I think that’s what I’m finding hard..I try to stay strong for everyone and my 3 girls but it’s so hard xxx

  • Of course it will break your heart leaving her, she is your mum, the amazing lady who raised you to be the beautiful person you are today. The one who cuddled you when you were upset, made your tea for you every night, tucked you into bed. That love will always remain and I bet you have the most amazing memories and stories to tell of her. Please remember she is safe and comfortable and receiving the care she needs, care that unfortunately, we just can’t always provide, that is the most important thing right now. My dads skin also went like this, any knock or bang he had these red blood blister type bruises, his skin went so sensitive. He was also on steroids until the end which I think must have kept the swelling around the tumour down, keeping the pain away. Nothing can ever prepare you for this. All I do is cry. It’s so easy for people to tell you to remember the good times, when right now I can’t get this image of my poor helpless dad out of my head:(. My kids keep me distracted from thinking about everything, but only for so long, then it’s back and won’t leave my head? Now, I am looking for songs for his funeral and thinking of what stories I can tell about him. I wonder what we’ve all done to deserve this. I wish we had more answers, but I fear we never will and we have no choice but to just accept what is happening.

    Hold your mums hand, snuggle her in, keep her comfy, I am confident she will slip away peacefully when she is ready to and there will be no suffering or pain. She will go to a kinder place, like my dad. 

    It is all so surreal. Sometimes I think I’m going to wake up from this nightmare and things will go back to normal, but I still haven’t.

    Sending all my love and hugs and thinking of you at this extremely hard time xxxxx

  • Hi there, I'm sorry to hear that you are both are going through such a tough time, and anyone else who has dealt with this hideous disease that takes you by surprise, it was October just gone that I lost my dad who had just turned 51 and I was only just 25.

    In truth nothing does prepare you for the worst, the real thing that gave me happiness was spending as much time as possible with my best friend, if I didn't want to go to work to spend more precious time with my dad that's just what I did as i knew it could come to an end at any point, and now I look back and I am more relieved that I did, unfortunately for my dad it wasnt the tumour that got him in the end, he had sustained clots in his legs in which travelled due to being paralysed on one side and the lack of exercise, our time was shorter shorter than we ever expected as his last scan had been very positive as his tumour had not grown at all, but who knows, on the flip side it could have been for the best as this cancer does all sorts of strange stuff.  

    I'd love to say everything will be fine, and there are miracle cases but just enjoy every day to its fullest.