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

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

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

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.

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. 

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