Thanks for this. Very interesting. Every case is different and thankfully, barely any of this desperately depressing timeline was experienced by my wife, especially what are supposed to be the final few weeks. She was active and lucid up until 24 hours before she died, walking strongly and unaided, eating healthily. She seemed to go from this stage right to the very eng stage immediately, perhaps more symptomatic of someone in their 20s and 30s rather than a 61 year old, but she wasn't a typical 61 year old. Her tumour was almost 11 centimetres by this stage. I say thankfully, because although I didn't want to lose her, and the end to her life was truly horific, I know she would have hated the hospice stage. We'd often talked about how awful it is for very elderly people to spend months or even years in a home. This was never our idea of living and we both knew it was something that neither of us would want. 

It is now nearly three months since she died and every day I miss her more. I've spent a lot of time reflecting on those final two days. Did I push her too much to exercise and tip her over the edge? The medical team haven't really given me any clear position on what went on or why she died when she did. To be honest, I don't think they know. On the Monday before she died, the district nurse visited and declared her so well that she wouldn't need to see her again more than once a month. She phoned me to express her sympathies and pointed out that these tumours were wretched and unpredictable.

Glioblastoma is an evil cancer, possibly the worst cancer of all because the prognosis is so dire. Although I am surrounded by family and friends, the sense of loneliness that I feel after losing this beautiful human being so suddenly, is almost too much to bear. Along with our two grown up children, I try to ease some of the pain by organising events to raise money for the brain tumour charity. We've already raised over £3000.00 toward our £10000.00 target through walks and arts workshops. Our next project will be a live gig with several bands taking part, including my own. Its a small comfort because life will never be the same again without her. My only hope is to see some medical progress made during the rest of my lifetime. If I can contribute in some small way I'll feel like the senseless loss of her golden years will not have been in vain.

 Hi Fee55, I really appreiate the reply and link XX

 Hi Lunigianaman, thank you for the information, try to keep strong and good luck with the charity fund, we   are all planning a 10k run to also raise for the same.

Hi first post.

I have read so much information on here but I'm still at loss.  My brother just turned 47  was diagnosed with a grade 4 brain stem tumour in November 2018.  He was given 6 weeks of Palative radiotherapy in December and started Chemo in June, unfortunately due to his fatigue he was only given one cycle.  As a family we have been caring for him on our own since November and although he did attend the Hospice he has been unable to attend since August.  We have been asking for a Care Package to be put in place and 4 weeks later still waiting.  We are just at a loss as we don't know what the final stages of this disease is and we don't know if we are caring for him properly.  So since August he has not left his bed, sleeps all the time, gets agitated and confused.  He has a tremor on his left side so needs support to get in and out of the toilet, needs someone to feed him and over the past few days he has that look that he is no longer here he just has a vague expression.  Can anyone help us to explain the final stages of this disease and how we can make the time he has left more comfortable.  He is in a hospital bed at home as we don't want him to get bed sores, he's visited once a week by the district nurse, Marie Curie sit for 3 hours per week to give the family rest and that is the only support we have.  Any suggestions would be really grateful.  Thanks 

Hi Teresea

Im so sorry to hear your story, its very much the same as what’s happened to my partner.  If you are in the UK I suggest you contact social services and the aftercare hospital team because you should be getting more help.  With my job and children I wouldn’t cope having my partner at home,  Although she is in a home we had a real job finding one suitable, there is a lack for anyone under the age of 65.  What I will say is she is  is really being well looked after and I for one can understand how hard this must be for you all.

i have read many other posts and the last part of this awful disease from what I can see varies in time.  My partner is still here, awful to see, she has lost her sight, can barely move, eat, drink or talk, just raised her eyebrows and squeezes your finger. I and the care hone don’t think she is in any pain, she has no idea about time, doesn’t know what’s really going on, basically semi conscious.

I wish I could help by giving you some advice but your brother seems to be taking the route which my partner has, and all others whom I have real about.

Please keep as strong as you can, give him as much love as possible by saying nice things, I’m sure he will partly understand.  My thoughts are with you xx

So sorry to read about your partner.  GP got involved and care package now in place.  Disease is horrible but the only saving grace is that they are both not in pain.  I just wish it was over for him as he would hate every second depending on others.

God bless and I hope your partner gets the care she deserves.

I'm so sorry about your wife. I'm utterly heaetbroken reading everyone's stories. I'm a researcher and we are working on GBM. Trying to find new therapeutics for treatment or even prolonging the lives of patients suffering from this disease. About the symptoms, Its different for every case depending on the site of the tumour in the brain. As our brain has different parts that are responsible for different fhnctions in the body so the symptoms depend on the affected area of brain. It also depends on how fast the gbm is spreading to other areas of brain and thus the symptoms change so rapidly. There are theories about what causes it but nobody is sure. It can be any mutation in the cells due to any external or internal stress (radiation, chemical etc). And sadly, the research on GBM is not as much as it should be. Tessa jowel has spread awareness and invested in GBM research so much but it is still not enough. I know its hard for all of you but trust me we are working so hard to find anything that can help eradicate this evil cancer. I wish I could do more to help all of you.

I found an app where people with GBM record their day to day routines/treatment/diets to help other people and researchers. If anyone wants to have a look on it please follow the link. Its completely free. 

https://ourbrainbank.com/

I hope all of you find comfort.. 

Dear Gbmresearcher,

Thank you for this. It is really helpful. It is a pity our consultant didn't spend a couple of minutes explaining this to me at the end of July. One of the many difficulties in coming to terms with this is in ansering the question, why? I can't think of any exposure to chemicals. Radiation? Unless her dentist messed up and gave her a massive dose when taking xrays for some fairly recent treatment, I can't think of any exposure other than mobile phones, but we've been told they are ok. I read the other day about the potential for air pollution, particularly diesel particulates, but we live on the outskirts of a small town, relatively free from traffic pollution. The medical profession leads us to believe that if we lead a healthy lifestyle we'll live long and active lives. To go from completely fit, active and healthy to death in fourteen weeks is really difficult to digest.

I will be starting bereavement couselling in January and it can't come soon enough. Apparently, you have to wait six months for it to be most effective. For now, it feels like my life is in limbo with no future. So many new and exciting plans that we were making at the start of the year just crushed by this dreadful illness.

I wish you all the best in your research in finding treatment that will help others and thank you for taking the time to reply.

Really sorry to hear your poor mom has GBM, My husband collapsed 9 weeks ago had tumors out and biopsy revealed BBM GRADE 4  he has refused anymore treatment,  and am just wondering how your moms treatment went, sorry if it seems nosy but looking for answers and getting none d

My father died from GBM back in 1993, he took 3 months from diagnosis to EOL. My mother and I nursed him at home for that time, it's a horrific way to go, the only blessing was that he felt no pain! 

I still miss him every day Love you always pops.