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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’m so sorry for your loss. 51 is no age. My dad was 52. Your right though, nothing at all can ever prepare you. Amazing that you spent so much quality time with your dad when you could, you will cherish those memories forever.

    please can I ask you, does this pain ease with time ? at the moment, I just feel lost, heartbroken and cannot stop crying xxx 

  • Hi

    In answer to your question I can only describe how I feel which my or may not be the same on your side. My dad was my best friend as well as dad so the relationship between us was great but it was a double blow when all this happened, I had to arrange the funeral more so myself and take a lead as it was a great struggle for my mum, more to the answer is your memory seems more inclined to hold on to those last moments when in truth they arent the ones it should be holding on to, I still think about him every day and some days it makes me tear up, but others it makes me proud and lucky to have what we did have, I still wish he was here of course but as time goes on some of those better memories start to take over and not the dark last few months you may have had, I have a lovely wife who had just lost her grandma shortly after the diagnosis of my dad and we dealt with it together, some days you would be instantly angry at the world but other days you are just grateful that you was able to enjoy a life with such great parents. That guy feeling of lost inside will stay but you will begin to look back and smile, opposed to shedding buckets out your eyes.

    As I say, unfortunately that's life. 

  • Firstly, may I say well done for being brave and coming out the other side from your own battle with cancer. I can relate to how you are feeling, this is such an isolated disease and it is so hard for anyone to truly understand how we are feeling. I too feel like my dad was in denial a lot of the time, I don’t think any of us, including him, really understood actually how aggressive this tumour really was and how quick it would take him.  My dads symptoms were mainly deep fatigue and confusion towards the end. The only comfort I have and that I hope I can give you, is that this seems a relatively pain free disease, my dad always just looked extremely tired, until he just didn’t wake up. It was so difficult to watch. I always felt totally helpless. Like there was nothing I could do. I would give anything to have him back, just to speak to him one more time. I wish this cruel disease didn’t exist or that at least a cure would have been found by now. If I can answer any of your questions please message me. I have found talking about it to people on here does help a little :) My thoughts are with you during this painful time, keep strong and be brave, for your husband xxx 

  • I’m so sorry to hear all the sad comments on this post. My husband had a bleed 6 weeks ago , we were told he had a large tumour and small ones in all parts of his brain with only weeks to live . No treatment was offered as it had progressed to quickly. Only 7 weeks ago we were a normal family, enjoying and planning our life’s . My husband is only 67 it’s to quick we feel we can’t get our heads around it . It’s such a cruel way to die. It truly tests your faith he knows what’s wrong and how it will end . He’s the bravest person I’ve every met and I don’t know what to do 

  • Hi All

    I have been reading these very sad posts and I just wanted to say how sorry I am for the pain and suffering you are all experiencing  I have some understanding of what it feels like and I have so much empatjy for you all. I lost my lovely mum to glioblastoma last August, just 2 days before my birthday. Like many people’s experiences, my mum’s health deteriorated so quickly and she died 15 weeks after diagnosis. And like so many of you have said, there really was no obvious sign in the months/weeks leading up to her diagnosis. I ask myself often how we could missed the signs but then who really would expect a brain tumour. My mum was told repeatedly that she had sinusitis and her doctors missed it numerous times.  

    Even though we knew she would die nothing could prepare us for losing her. I think losing losing a parent or a loved one is the hardest thing we will ever experience in life and losing someone to a brain tumour is so traumatic. 10 months on and I’m still traumatised and still shocked that she’s actually gone. My mum was also young, just 63, and with the rest of her life ahead of her. She was also my best friend  

    The final days of her life were peaceful and pain free and that helped us enormously. I know that everyone’s experience is different but it seems from reading these posts that for most of us, our loved ones passed away peacefully. And I am so so glad that I was able to spend those final weeks with her, just talking, watching TV, taking her to cafes for a drink, taking her shopping. She loved that. And so for those of you whose loved ones are coming to the end of their life, if I could offer just one bit of advice, it would be to make the most of your time you have left with them. Just doing as much ‘normal’ stuff as you can in such horrendously difficult circumstances. And although I am only in the early stages of grief, I have learned that we need to be kind to ourselves during these dark and painful times. I’ve learned there is no hard and fast rule for dealing with loss, but support from others is really important. 

    I’m thinking of you all xx 

  • My sister was diagnosed in March with GBM Grade 4 inoperable, gas had radiation/chemotherapy. Is due to see oncologist again in a couple of weeks to talk about more treatment, she is very positive and coping well at the moment, so sad reading how fast all your loved ones passed, how quickly this cancer can change lives

  • So sorry to here about your news tell her to stay positive if I’m honest I think that’s what’s keeping my mum goin all of the docters said they have never seen someone so strong and so positive...

    if we go by what the docters have said mum shouldn’t be here anymore but she is still staying strong and holding on I have notice she is more tied now than before and getting very forgetful..

    Thinking of you and your family at this time

    Xxxx

  • Hi im so sorry for your loss , my husband is 49 was diagnosed with glioblastoma grade 4, 31 January this year im devastated he ia so positive and fighting hard , yesterday we were told its back and grew two cm , he had a big op in February , only residue was left , 6 weeks of radiation therapy and chemotherapy tablets didn't work , was a kick in the teeth , im at a loss how to help him , is ther alternative treatment we could try do u know ,thanks

  • I would try anything at tgis stage , we got married in September past I feel robbed hes my life I cant let him go , we are so close , the fight is back on , [[ ]]

  • aww that’s amazing we started my mum on cbd oil some people say no what’s the point but I believe it does help and the fact my mum was told a about 4 month ago that she would only have a few months left and she is still here 2 months on from when they said she wouldn’t be and doin so well ok she can’t walk and hasn’t let done for a long time now due to her brain tumour but she still here laughing having days out and making the most of I believe anyone should try this we got ours sent from Spain and now from someone closer to us anything is worth a try xxx