Hi Rabbat,

Very sorry to hear of your dad's diagnosis. My husband was diagnosed with a glioblastoma in April 2015,aged 53, and died almost two years later in April 2017. Every case is different so I won't trouble you with the details, other than to say please be prepared for the possibility of personality/ psychological changes which can be dramatic and upsetting, especially if you aren't aware it could happen. As for the amount of time a patient has left,the most helpful thing the end of life consultant told me was that when you see either significant worsening of symptoms or new symptoms appearing on a monthly basis, the answer can be counted in months. If things are changing on a weekly basis, then you are looking at weeks etc. At the beginning,my husband fully understood the prognosis, but didn't want to know specifics. However, by the end, he didn't actually believe he was ill at all, which was very difficult as he couldn't understand why he couldn't move (he thought I was keeping him captive, and in the end I had to tell him he'd been in an accident) but in other ways it was a blessing. Best of luck.

Hi.. my husband was diagnosed with GBM in October 2018 following a craniotomy.  He had six weeks radiotherapy and chemo before Christmas. He is now 5 days on oral chemo and 23 days off. He is very tired all of the time and he is be having very differently.  It is almost as if he has the early stages of Alzheimer’s.  He  struggles daily to find the correct words for every day objects.  When we try to socialise I find that others are struggling with the changes and I almost feel that they breathe a sigh of relieve when we go home.  Everyday things tire him getting showered, dressed etc., We don’t have a prognosis yet that will be early April.  How can you tell as these changes have got much worse over the last two to three weeks. Your 3xperiences would be very much appreciated.  Thank you.

Hi, my wife past away in March, 2018 at the age of 61.  Before she was diagnosed with GBM in May of 2016 she was an active fit women who was healthy and loved life.  This disease is an awful, disgusting and heartbreaking way for any person to pass.  In the 2 years she fought thiis disease she had 2 craniotomies, did an immunotherapy trial, saw holistic and naturopath physicians and tried everything in her power to beat this disease.  On September 30, 2017 she experienced her first seizure.  This was the beginning of the end for her life.  In the 5 months up until she past, she had 5 more seizures and a stroke which paralyzed her alrready weak left side.  My wife was the love of my life and to see someone you love dearly go through this process is nothing more than horrible. My wife was a fighter and it showed by the way she confronted the last 5 months of hr life.  The last week of her life she was in a coma.  I would be holding her hand and playing her favorite songs.  When I started a new song she liked she would squeeze my hand. Which proves even though she was in this condition she could still hear.

Before September of 2017 we went on vacations when she was doing well.  These are the best memories I have of her in addtion to our 30 years of marriage.  She was so happy.  We had great conversations and my love for her even grew stronger in the final 2 years of life.

It has been a little over a year since she has past.  I will never get over the love I have for her.  I think about her everyday.  Some days are better than others. I do realize I have to begin a new life and thats what she wanted for me after she died.  

Thank you

She breathed her last at 07.00 am on 08.07.2019 calmly. Her chemotherapy was finally stopped in April as the Dr. informed us that nothing was left and the cancer had spread in the brain stem. It was a painfull situation for us. She had suffered a lot since past two years. Two brain surgeries, many doses of radiation therapy, seven cycles of dose dence Temozolomide and 21 doses of Avastin. Nothing worked aginst the fight with Glioblastoma, the most aggressive type of brain cancer.

She was a fighter. Full of life and energy. Fantastic woman. Day by day her condition deteriorated. We saw it happening. Left limbs almost paralysed, drawsiness incresed, difficulty in chewing and swallowing started. In the last month incontinence and disphagia made the things worse. She was admitted to the hospital and they inserted ryles tube and catheter. We learnt how to give feed and clean her body and in the last days gave supportive care at home without any nursing attendent. My daughter gave me all support and help. She has been my source of strength and hope during this tough phase of life. Because of this care there was no bed sore, infection or seizure, and the end came peacefully. She must have suffered but she never showed her pain and remaind positive, strong willed and calm till the end.

I dont know why this has happened to us. She was a beautiful and vivacious. Only 48 years old. I feel this type of pain and sufferings are reserved for those who are strong and have lot of patience. I dont want to have these qualities. Want to live my earlier days once again. Wish I could make her life more happy.

I’m so sorry for your loss and the undignified and painful way it happened for you all. Glioblastoma is just horrific. We lost our son Dylan three years ago to it at the age of 15 and we had all the same experiences as you. God bless you and your family.

Dawn 

Extremely sorry to read about your wife. We have undergone the same experiences. My wife passed away on 08.07.2019. She was also a lively person and remained hopeful till her last breath. Our ordeals lasted two years. It was painful to see such a fantastic companion and loving and caring mother to suffer so much. I also feel sorry for my daughter who is just 22.

I pray for you and your children. May you get strength to bear this sorrow and pain. Your mission to find ways so that no one will suffer from this disease will give you purpose for life. 

Thank you.

My heart goes out to you and every other person who has posted on here. A common theme here seems to be just how fit and healthy most people were before diagnosis. That makes it so difficult to comprehend. We all know that if we smoke, drink too much or become obese we have a much greater chance of develping cancer. There must be some kind of environmental or lifestyle choices that are causing this dreadful Glioblastoma but nobody knows what they are. I bet most people on here had never even heard of it before their loved ones bacame ill, yet it seems to be on the increase. I know it won't help, but I need to know why my beautiful, heallthy wife became so ill so suddenly and so out of the blue. I'm utterly heartbroken as I'm sure everyone else is on here. May you all find some peace and resolution to your pain and suffering.

Hi I'm sorry to hear your and everyone else's similar sad news.  My wondrful partner Angela was diagnosed with a grade 4 brain tumour in March 2018.  This was removed and she was given 6 maybe 9 months to a year to live.  I never told her the prognosis.  Angela was a really fit and healty 55 year old.  After the surgery she made a really good recovery, you couldn't tell she had been so poorly.  We certainly did a lot of good living together last year.  Sadly in February 2019 she started to get headaches.  We were told that the tumour had come back but much worse.  Angela had a second operation and recovered quickly once again.  This time there was a slight difference in her behaviour as everything seemed to be over exaggerated, if things were good to her, they were ten times better, if not good they were a lot worse.  Unfortunately since her last surgery Angela has spent more time in hospital than out.  It's so upsetting to see a heathy person deteriorate so quickly.  Angela has been virtually bed ridden now for 3 months, she cannot move and is laid in the same position, she has lost all of her sight and can only communicate by squeezing your hand or slight facial or lip expressions.  I cannot believe how cruel this disease is, it's absolutely sole destroying.  I do agree with the other posts that she is not in pain, Angela is mainly asleep and only just consiosus.  I keep praying for her to move onto the next much better world, which I know is waiting for her, this is so hard because I love her so much and don't want to lose her but I know for her sake it will be better.  The last 18 months have been an absolute roller coaster of emotions.

Hello, I'm so sad to read all the posts here.  I lost my healthy and fit mum to Glioblastoma nearly 10 years ago, she was 66.  Diagnosed in September and died in the January.

A website I found so helpful and in ways comforting, knowledge is power, even though it shows you a symptom timeline to death from Glioblastoma. It has now gone from the internet but I have found a link through an archive of it.

It's very honest in what to look for on the symptom timeline as death is approaching but I found it so remarkably accurate and even the nurses who came everyday to our house recommended it to colleagues.

Do remember that you can have hospice care at home. We did as we wanted mum to be at home.

Anyway heres the link and I hope it helps in a funny kind of way.

Lots of love and strength to everyone affected by this terrible disease. xxx

web.archive.org/.../SymptomTimeline.html