Hello and welcome.  I am sorry your dad appears to be moving towards the end of his life.  We know logically that this is going to happen but it doesn't make it easier when we are faced with a loved one gradually dying.  In my (admittedly limited) experience of cancer deaths this can vary greatly from one person to another.  My son's father died in his sleep after a relatively painless decline and being fairly alert until the end was very close.  A neighbour for whom I helped care had a very gradual decline during which he stopped eating and his breathing deteriorated.  I believe this is not uncommon but the time involved can vary a great deal from person to person.   I hope you have palliative care nurses with whom you can discuss what is happening. 

I am attaching a link to some information from this website which is about the final days and weeks.

www.cancerresearchuk.org/.../last-few-weeks-and-days

I would say now is the time to ensure that things that want to be said are said, wills settled and any requests for funeral services.  Not at all easy but important to all concerned.  My best wishes to you. Annie

Hi,

I’m so sorry to read about your dad, I have lost 3 people to cancer in the last year and their end was all fairly similar. 

My beloved mum was most recently and I am struggling so much. She was only diagnosed with a Glioblastoma Multiforme stage 4 in December 2017, she fought so hard and had chemo several times but at the end of May she was admitted to hospital with sepsis. She perked up for a few days but after a week her confusion was returning and she was transferred to a hospice. Due to the nature of the tumour and her being confused she had tonhace sedation in the hospice because she was getting too distraught - I happened to be there that night and it was so upsetting. I didn’t have another conversation wih her, she was sedated for the next two weeks and you could slowly see her getting weaker. The last couple of days her breathing became noisier and she was making some gurgling sounds but as she was sedated she did eventually just stop breathing :-(

I will say one thing, crying as I write this. Nothing will ever prepare you for losing a parent. After mum’s diagnosis we were told it wouldn’t be long but the pain from losing her has been so immense, unbearable at times. There is a pain in my chest most days and sometimes the thoughts about mum are so consuming, I just don’t know what to do with myself. She was only 66 and had still been working in October 2017 before the diagnosis. 

Such an unfair disease :-(

x

I am so sorry to read this and my heart aches for you.  And for what I am going to endure in the next months I fear.

My mum was diagnosed with a Glio stage 4 in March 2018.  She had 2 operations to remove part of the brain tumour, but we were told it was an arachnitumour (spider like with tendrills going down the brain) So unable to remove.  Shes had 21 days radio therapy, and 3 lots of 7 days chemo tablets.  This week her platelets were too low so we hae to go back next week. then hopefully 3 more sessions.

I know the prognosis isnt good, but she's so well and positive, its hard to believe its going to happen.  She gets very fatigued, and incontinance, but over all is doing well.

She's my best friend and thats why I think im in denial a bit, and your post has made me write.

I really hope you are ok. And get the help you need.  As I'm sure I will too in the future.

Jo

Hi all.

I'm saddened by your news, I lost my dad 2 weeks ago today.

The disease hit us like a ton of bricks in February after no real indication, he struggled walking in to work one day and we initially thought it was a stroke, I really do wish it was a stroke, a month before we was playing sports together, helping each other at work and holidaying.

They operated on the tumour and removed a large mass but they couldn't get to a small section, the cancer was spider like and stage 4 so it was aggressive, after the surgery he lost a lot of use of his right side and was essentially paralyzed. This didn't get him down and he received radiotherapy and he was 1 last chemo session away from completion, and very positive and still himself. You can't guess or begin to guess what you are going to be in for, this cruel disease has no limits as it is playing with your brain, just enjoy every moment you spend with them, I hoped I would see my dad for at least 2 years and after his 6 month scan it become more realistic as the tumour was stable and showed no signs of movement, we was thrilled and inspired that he may beat this disease to some degree. 

Sadly we lost our inspiring dad, with his infectious laugh and positivity, the most heart breaking thing is it wasn't due to the tumour, or not directly due to it, he struggled to get his breathe so was taken in to hospital in which they found numerous amount of clots, it was to little too late, our only questions are as to why he wasn't given blood thinners as they had always struggled for blood from him and he was at a severe risk of getting them due to his immobility.

I hope that your loved ones beat this, we felt our dad did so well and we are broken that he has gone at such a young age of 51, this disease had no limit and no definitive answers as to what will happen next, the brain is a complex minefield that they still yet know little about. 

Daniel 

Hello, I lost my mum in 2014 I was just 14 years old when we found out about this awful disease. She passed away within 5 weeks and in the last week became unconscious. We had a private room for five days we slept with her and held her hand a lot comforting her. She didn’t wake up she struggled to breathe at times but on the last day her last breaths were peaceful. I’m 19 now and it never gets easier you just learn to live with it, if you have someone you love on their last days pray it goes peacefully and get all the hugs you can x

My brother Bill died from GBM4 back in Sept of 2018.    It was crazy he passed out while painting was taken to the hospital they thought he had a stroke but that was not the case.   They did a Cat scan and then MRI saw the mass.   That was a tuesday then they did surgery they said they got 86% it was a mess doing the analysis to see if it was cancerous or not.   Before they could even find out he passed away from a brain bleed coming from the sugery.   It was crazy.   After sugery within the same day he was up and walking going to the bathroom on his own.   THey told him he might even be able to go home in a day or so but he failed a few coordnation excersies they then said he could not go home.   That upset him and I think that caused the brain bleed.   The docs said not really I still say it was the case.   After the brain bleed he was pretty much brain dead and we took him off life support he died one day later.    I am still dealing with this and feel that the hospital was at fault for trying to get him up and moving so quickly.    After his passing the bioposy came back and he did in fact have GBM4 very advanced so his life was not going to be good anyhow but I would like to have had a little more time.  

Hello Karlieanne; your post reminded me of my mum's cancer death (some years ago now).  You are already in a state of stress and crazy things can happen until you don't know which way is up!  You want to do the right thing for your loved one but it leaves you theartbroken, frightened and worn out.  It is something we all have to go through and there appears to be no way of easing the situation becuase you know what the end is going to be.  Best wishes.  Annie

Hi My name is Lauren,

This time last year my mum age 57 was on holiday and had seizureand was taken to hospital and they first though she had a bleed on the brain but when they went in and looked she had a tumourthey they couldnt take much as it was just stuck to the brain they said to look at the biopsy was saying it was a stade 2 but when they looked at it on the MRI scan it was saying diffrent so it was more like a stage 3 bits a 4 so i then i got the worst phone call anyone would want i got on the next pane out to America and stayed with my mum and her partner till we could bring my mum home.

My mum has done so well she has done 21 days of Radiotheroay and 3 loads of chemco tablets about 6 weeks ago we was told that it had got bigger and now aggressive so there wasnt nothing more they could do for my mum ,so my mum ask how long they think she has left we was told a few moths,

I am just heart broken she is my best friendmy absualt world and im finding it so hard i stay strong for my mum and i dont let her see me upset alos dont liek to cry at home becasue i wont wamt my girls to get upset as they already are with whats goin on,

i dont know whats oin to happen next she seems ok at the moment she cant do much for her self as she lost all feeing down her let side when it happend but she is so strong ,i just wanted ask if anyone knows whats goin to happen next i know everyone is diffrent i just feel lost alone at the mo with falling out woth my broters its so hard,

Thank you xxxxxx

Dear Lauren,

I am so sorry to read about your dear Mum. 

I lost my Dad to GBM stage 4 and it was the fourth anniversary of his death yesterday . I came across your post because I regularly look online for updates and advances in GBM treatment (and hope to one day read about cures...) and your post broke my heart. Although Dad has been gone a while now, I still hope to find stories online about how scientists and doctors will one day cure this awful awful disease.

Like you and your dear Mum, me and Dad were best friends. We didn't go a day without speaking and when Dad was diagnosed, I felt my world was ending. But even though I cannot offer many words of comfort, or tell you that everything will be OK... I wanted to share our story in the hope that it will help you through these last weeks and months. I was given so much information by Doctors and nurses about palliative care in the final days, information that scared the life out of me. Everyone's end of life treatment is different and I hope you have a good medical support team around you? 

Dad was able to stay at home, right until the end. We had Sue Ryder nurses visiting twice a day and his doctor on occasions also. The nurses would administer morphine, Dad was comfortable and slept most of the time. I had heard horror stories, but I wanted you to hear our family's story because our Dad (55 at the time) would talk to us, right until the last moment and was very peaceful throughout. His personality, his love, nothing changed in those last days. He told everyone he loved them, moments before he passed. 

I don't mean to upset anybody, because I understand that families go through hell and not everyone's loved ones passed in this way. But when I read your message, I wanted to respond and ask you to try and not worry about what will happen in the last days and weeks and to instead try to make the most of the time you have left with your dear Mum. Make as many happy memories as you can. My Dad would always say he just wanted "normality" (as much as could be expected) and to be surrounded by those he loved. We did so much together in the last months and I try to remember those days, when I'm feeling sad.

I hope you have support already from Sue Ryder and your Mum's GP. But also, you need your family and I hope you and your brother are able to repair your relationship very soon.

Although we are complete strangers, I will be thinking of you, your Mum and all your loved ones. Take care of eachother xxx

Thank you for you lovely post it means so much to me for your reply and telling me about your story...

I spend every evening  with my mum after work my mum is in a home as she couldn’t cope anymore at home it’s a lovely place and I’m so happy she is happy there of cause it’s not the same as her being at home but as long as she is comfortable that’s all that matter mums had really bad headaches past few days not sure if that’s something todo with it as she not really had problems before..

i do everything with my mum that I can we do painting play games watch films and sometimes just sit and look at each other she really is my best friend and makes me so happy..

there was a lady in the room next to mum who had the same thing and past away 2 days ago just broke my mums heart but she is so strong and still smiles a lot and like you said every day is a new day 

xxxx