Symptoms of end of life through GMBM

HI Sharklover

good question.... and right now I honestly wish I knew the answer for you. My husband was diagnosed GBM4 in Sept 2020 and we've not really been told what to expect when the time comes. Symptoms seem to very from person to person depending on which area of the brain has been impacted by the GBM4. 

I'd suggest talking to your CNS or even your GP. There may be local options available to you other than a hospital. I know locally to us there is the hospice which is a far more family friendly environment than the NHS's finest.  From previous posts on here and other groups some people choose to stay at home in familiar surroundings but that can bring its own challenges- eg practical things link space for potentially a hospital bed and medical equipment. Again you GP and/or CNS can advise you.

It’s always good to talk so please remember you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Perhaps inappropriate but talk it through with your family too and get a sense of their feelings here. I had a close relative choose to die at home but with the benefit of hindsight it perhaps wasn't the best option in the end. 

It's a very emotional personal matter that is hard to discuss with family - I get that.

This link may also help here - End of life - Macmillan Cancer Support

I hope this has been helpful. This group is very supportive so no doubt another few members will have some words of wisdom to offer.

Sending you a huge virtual hug,

love n hugs

Wee Me xx

Hi Sharklover. I hope you get to fight this hideous disease for a long time yet.

I can give you an insight into end of life as I have just been through it with my wonderful husband. Sadly he lost his battle last Monday 10 1/2 months after diagnosis.

He was told the tumour had grown back on 10th January (his 50th birthday!) and things started to get slowly worse over the next couple of months. He became more confused and forgetful and started having occasional seizures. He would tire more quickly too.

Things started to go downhill white quickly from late March. He was having multiple seizures a day and his headaches returned. He became urinary incontinent but would still strive to make it to the bathroom. He spent most of the day in bed sleeping (he admitted this was so he didn’t have to think about what was happening). He started to lose his appetite but he would occasionally join me on the sofa for something to eat and to watch a favourite tv programme or movie.
We had a few trips to A/E and he was admitted to hospital for 4 days when when we couldn’t control his pain. By this stage he was finding it increasingly difficult to communicate and was pretty much bedbound. He was also finding it hard to swallow. They eventually discharged him home where we had a hospital bed installed and carers coming in 4 times a day. He stayed at home for just over 2 weeks. His appetite became nonexistent as his swallow reflex disappeared. He became so thin from the lack of food and all the steroids he was on. He became reliant on morphine for pain control (finally having a syringe driver to administer meds). 
A week ago he was admitted to our local hospice. They told me to go home and get some sleep as they felt he was stable and unlikely to leave us that night and I would need all my strength for the days to come. I received a phone call at 06:40 on Monday morning to tell me his breathing had changed and I needed to get back over to be with him. I arrived literally minutes after he passed away. 
I am devastated but i know that he is at peace and is no longer suffering. When it happens it’s quick and heartbreaking and nothing I can say here will prepare you or your family for it.

The  hardest part is knowing that he understood everything that was happening but was just unable to get his thoughts and feelings out.

My firm belief is that he held on till he knew he was in the hospice as he didn’t want to pass away at home as he knew how hard it would be for me to go back. I also believe he waited till he knew I was almost there to let go so I wouldn’t see him taking his last breath. Bradley was a true gentleman till the very end.

His last words to me were in response to me telling him I loved him. That quiet “Love you too” will stay in my heart forever.

Stay strong. Live life to the full. Hold your family and friends close.

Xxx

HI

Unfortunately my beautiful husband died 27th Feb 2021 from this cruel illness

He wanted to die at home and that is exactly what happens. I'm grateful that we could do what he wished.

I won't say that it was easy or the best option but at the very end we (myself and my 2 sons ) were with him and it was our privilege to be with him on his last journey.

We had a hospital bed, hoist, all the kit.  It takes over your house. It is physically very very demanding even with hospice support and carers. 

On the positive side , we were in our own home and able to do as we wanted - eat, snatch some sleep, shower, whatever and when he died we didn't have that awful journey home without him

I was worried that it would be too hard for my sons (31 & 28 years old) but the eldest one told me afterwards that it has helped him to know that he cared in such a physical way for his dad and that it gave him comfort to know that we were there for him to the bitter end

I was also concerned that I won't be able to sleep in our bedroom with all those memories but actually it gives me solace

All I am trying to say is that it is different for everyone. There is no right or wrong. Whatever works for you and your family and the only one who knows the answer to that it you

Wishing you well

My husband was diagnosed on July 11, 2022 and had a craniotomy on the 13th. Looking back at photos over the last year, I see subtle symptoms, such as a smile less bright than before and a bit less energy. Several weeks before the diagnosis, his headaches were severe. We went to the doctor who said they were tension headaches, and he prescribed muscle relaxers. Then, my husband drove past our house twice, where we have lived for years. He missed the street once. He seemed to have trouble logging on to his work computer. He stuck with the tension diagnosis, but it was obvious that there was something greater going on. I finally got him to the ER on the 11th.

The tumor was large and crossed hemispheres. The surgeon said he could de-bulk it, but not remove it. My husband wanted to pursue this route and the doctors were encouraging about extending his life. Of course, I supported his decision.

Following surgery, his left side was weak, close to paralysis. He was incontinent. He could walk for short periods, but was wobbly. He was sent to rehabilitation for two weeks for physical therapy, occupational therapy, and speech therapy. They were encouraging. Then, they sent him home with me.

I put grab bars on the walls, ordered diapers, rearranged furniture, stocked the refrigerator with foods he could eat, and put a seat in the shower. I learned how to transfer my husband from the bed to the toilet, the walker, and the car. It was two weeks before I could no longer keep up with his needs. I became a nurse and our home because a care facility. I had to hire help.

I then had to make to horrifying decision to put him into a hospice facility. I found the best, more expensive one in the area. It was still awful. I had to hire private care givers to work in the facility. He was there for three weeks, where he steadily declined daily. 

In the end, he gasped for breath for two days. I begged the doctor to increase the morphine and Ativan. I only wanted peace and dignity for him in his last hours. 

He passed on September 16th. If we had addressed the symptoms I noticed a year ago, would this have been different? If he had opted out of the surgery, would his time have been less humiliating? 

Everyone has advice, and I'm sure it is all good to follow. I am not even close to being able to do that.

My husband passed away on Monday Oct 3rd at 19.46 in hospital 19 months from diagnosis March 2021. With the usual operation and chemotherapy he recovered well, and was positive. By March this year seizures came back, and he started on more medication, lost movement in his right arm and leg was going. A second operation was considered too risky, and he was given Avastin instead. That gave him thrombosis, caught just in time, but then more meds, hexparina injections, steroids, septrin, pain killers. He got very depressed and so wanted to get off the steroids. In last 3 weeks the leg had almost gone, he needed help to pee, we had a shower chair which fitted on the toilet and his existence was chair to chair. His life passion was music and reading but he lost interest. He was also a house husband caring for family and house and felt terrible that role had gone. He was able to talk, eat, normal digestion, but the position of his tumour impacted his personality plus the meds.He had a short fit again 2 days before he died impacting his leg On his last day I showered and tried to dress him but he couldn't get up. Tried again and he couldn't speak. He was taken to A and E and several hours later they said he had a brain bleed. He never regained consciousness after the morning shower. The hospital gave him meds to keep him comfortable and he took last breath in under 2 hours. During last 2 or 3 hours his breathing was bad with death rattle. I believe your final symptoms are also linked to the tumour position. My husband had on left frontal lobe which was paralyzing his right side.

At home cancer nurses came once a week to check on him, and we had hospital appointments almost every 2 weeks on something.

So his final day was abrupt  .He was unconscious and got quick release when given medication. He was very sad, agitated and difficult to comfort, but remained articulate 

Each person must be different. My husband was Spanish and was treated in a hospital near Barcelona so options may be a little different to the UK. The Sativa cannabis treatment sounds good if you can get on it 

Thanks for this space just to write. It's so soon that I still can't believe he won't be back. We were together 32 years 

Your story breaks my heart. There is so much to say, yet nothing that will make sense of this tragedy.

The surgeries and multiple medications may extend life, but my experience is that quality of life steadily declines.

I found the Glioblastoma Foundation whose mission is to change the "one size fits all" approach. They are researching and using new treatments for early detection of tumors. This is sadly too late for us. I have to do something with this agony I feel and I hope to work with the foundation.

Again, you have my deepest sympathies. Thank you for sharing. 

You can stay at home or hospice care , it’s your choice.

Talk to professionals and talk to loved ones , this is your fight and your choice . Stay strong