Husband dies from glioblastoma

Hello Panda

I am so very sorry you lost your husband to this so terrible illness. You were so wonderful supporting him throughout and being there when he needed it most. Those of us with GBM know how important that support is, at all times, and even in the darkest days, that support brings such comfort.

It must be so raw but always treasure every one of the wonderful moments and wonderful memories you will have shared. They are still real, they happened and can never be taken away. Speak his name out loud, whenever you may wish, as he will always exist as long as you speak his name. His presence can always be alongside you. You cared so superbly, at the time when it counted most.

Thoughts for you and my wishes for strength, through the difficult hours

My best wishes

Brian x

Thank you Brian. I wish you the best in life!

My heart goes out to you. In a just a few weeks your world has crash landed and you must feel totally exhausted and bereft. My partner was diagnosed in Dec and they have given him just 6-12 months and I thought that was brutal enough. He too was a fit sporty healthy guy who after surgery and radio/chemotherapy already feels that now he is simply existing rather than living. Waiting to die. Yes of course you feel in despair - you poor girl. But the strength that you found to care for him will live on and try and remember that he would want the best for you now. Please give yourself time to grieve and curse and cry and scream to let it out whenever you want to. We are all here for you and we feel your pain. It's a bloody awful illness that destroys too many people. Take one day at a time - look after yourself. Fxx

Hello Panda65. I'm so sorry that you find yourself in this boat. I just wanted to point out a very helpful group, beareaved spouses and partners, where everyone will understand how you feel. Do come over and have a chat with us there:

community.macmillan.org.uk/.../

I too am very sorry for your loss, but your husband was very lucky to have your love and support. (My husband, unfortunately left me last August, which has left me devastated and lonely.)

Take consolation of the love you had and try to dwell on the good memories you both shared, I am sure there will come a time that despite the loss you will feel, they will help you through.

Sending you love and hugs XX

Lilac

Lilac, your words are very consoling to me too. Please accept a virtual hug and all the positive vibes in the world for everything you have been going through xxx

Hi ...My husband died from GBM g4 in October . We were together 26 and a half years and have a 10 year old son . GBM is a foul foul disease . It changed him - made him mad angry . I am mourning 2 people - the sick one who i would give anything to have another day with or even a few minutes a conversation a hug ...and I mourn the one from before - full of love and life . It has not got easier ...the grief just changes form . I have had 11 sessions with a grief councillor but dont know if it has helped although she is very nice and i have been able to talk a lot . The loneliness is horrific ---I know there are people when i hit bottom often at night who i could call - but its my husband i want to talk to .People expect you to be better and almost ok . The loss is immense and grief is horrific . The what ifs torment you . The last time I drove down this raod  or went to this shop or this theatre etc go on and on . Sudden memories loom and tears cascade down . Often taken by surprise -- walking thru woolworths then glance at the easter eggs and spot his favourite -- and you freak out . Everything - forms / dealing with things you didnt have to is overwhelming . You dont manage the simplest things . We did not discuss his illness - he wanted to focus on treatment - there is so much i wish i could go back and say . Instead of rushing around organising stop and sit down on the side of the road where he had had to sit after the effort of getting out of the car - throw my arms around him and just sit . Hindsight is not a wonderful thing it is hideously cruel .

I am sorry you are suffering this too . There are no words

I really feel your pain and I know that whilst I am being strong while my husband is still here - because he needs me to be his rock- when he loses the battle I will finally crumble. With death - it doesn't make any difference if it's sudden or expected - there's always things you wished you'd done or said and the loss hits you hard. But please keep going and try and remember that he knew you loved him and were there for him and that would have meant the world to him. It sounds futile I know - but he would want you to be happy and not let this awful cancer ruin two lives instead of one. it might be next month or next year but you will wake up one day feeling a little bit less raw and feeling able to smile about how lucky you were to have had him in your life despite the tragic ending. Sending you a big hug. Fxx

Hi, I've just read your post about pain after your husbands' death from glioblastoma and although I can see it was a few years ago I wanted to reply to you and do hope very much that you are in a better place now. 

My husband of 33 years died 3 years ago from glioblastoma after a year with surgery, radiotherapy, chemo etc and also a year previously which was very stressful because his personality had changed and he was very very critical of me ( I thought he had depression because he was running a very stressful venture-capital backed company and we had put a lot of money into it and sold our house to finance the early years).

My only brother had died only a year before from Motor Neurone Disease and I thought that nothing could get worse after that. When my husband was diagnosed I had to rent another house and move us within a month because my daughter needed to be on a school bus route. I also rented a flat in London for 6 weeks so he could have daily radiotherapy/chemo at University Hospital rather than the local Portsmouth hospital which did not have a great reputation. My 15 yr old daughter hated having to stay at friends houses whilst I was in London with my husband - I stayed 4 days with him and my elder daughter who was in her 2nd year at university stayed 3 days. Having a background in pharmaceuticals I knew the poor prognosis for glioblastoma but still arranged appointments with private drs (we didn't have medical insurance which we'd had all our lives until my husband started this company because he didn't want extra cost).

My husband, although his speech and cognitive area was impaired from the tumour ( had also paid privately for neurosurgeon who was fantastic) was extremely demanding in wanting to know every day "what the plan was" so we travelled to London and Liverpool to talk about clinical trials for a dendritic cell vaccine (trial which was showing some promise had been closed due to FDA intervention) and I spoke at night to top Neurosurgeons in Switzerland and the USA trying to get him on the very few clinical trials which showed any promise - he wasn't accepted onto any. it was unbelievably exhausting and we were living in an area where we didnt know many people as we had moved within the previous year to be nearer to an airport than we were in the cotswolds where we had previously been living. My husband, who was very strong willed and intelligent was being manipulated by a couple of board members of his company and because of his tumour he would not accept it and made some very bad business decisions as a result. I had met him when I was 18, we had moved more than 20 times and lived in the USA, both East and West Coast, Switzerland and around the UK so we were really each others' support team and best friends.

Like your husband he did not ever want to consider the possibility that he might die and so we never discussed it or any of the things which might need to be put in place to make things a little easier after he died. He was not able to tell me that he loved me before he died or in any way say goodbye and that is something I will regret forever. Even though Motor Neurone Disease is a devastating way to die I was with my brother and he was able to tell me how much he loved me and I him on the day he died and that is a great comfort 

After my husband died and being completely exhausted in fact that was only the beginning of the stress I had to deal with. I had to go to board meetings for his company, knowing that the 2 most senior board members were trying to get rid of me, I found out that as my husband had moved around so much although he was a very senior executive (we had in the past had 2 houses and our own private plane) he had very little pension and no life insurance nor mortgage protection as we were renting at the time. We had spent over half of our capital having no salary  for the past 4 years as he was getting the business going. My solicitor said it was the most complicated probate she had ever done - I had to deal with the IRS tax authorities in the USA, try and get a small lump sum from Switzerland (the paperwork was all in French and was only a single sheet of paper which I had almost overlooked). I have lost my husband, best friend, our future together, my financial future and financial standing from the past, our home and his company which has since collapsed with no income or pension at all. I have always been a very positive person and was highly successful in my own career before moving abroad to support my husband and now feel so bleak about my future and being unable to do afford to do the things which ive done all my life. My ffiends are all beginning to retire with their husbands and as they are mostly in a similar situation which we were they have second homes, boats etc and are enjoying their lives with their husbands and no financial worries. No one of my age e that I know has lost so much in their lives (the only family member I have is my mother who has early stages of dementia and can't remember what I've said when we talk); I feel so alone and as if I have aged so much during all of this - my father and mother-in-law died 6 months before my husband was diagnosed and I feel that I am as old as my mother. 

I am so sorry to go on so long about all this but it truly feels as if noone can understand how devastated it has all been and I felt from your message, although not all is the same, a depth of despair which was isolating you from everything. 

I know that you will not "get over" your husbands' death but I truly hope that you are now in a more positive place in your life and would really appreciate if you can let me know how things are going for you.

Wishing you love and peace.

Hi Panda65,

I have just read your post and so much of it rings true with me too. My husband of 33 years died September 2017. I met him when I was 18 and we moved many times around the world, our own little support group with our 2 girls. He was my best friend, confidante and partner in life. It is now 3 years since he died and I have also had to deal with huge financial difficulties resulting from his death and brain tumour. He didn't want to ever contemplate not surviving and I felt I had to honour that by never discussing it but we had 3 years previously sold our home to finance a venture-capital backed company he started and spent a lot of our capital supporting the family as we were not paid a salary for those years. In fact he was about to sign a deal with the backers which would have guaranteed all the finances the company needed to thrive when he was diagnosed and the backers pulled out. I am 59 and as well as losing my husband and our future together have also lost my financial stability and status for now and the future. Like you I spent the last 2 weeks sleeping next to him on a pullout bed in the hospice holding his hand - he was unable to talk by that stage. He had also changed during the year prior to diagnosis and been very critical of me and made unwise financial decisions which was very stressful. 

I cannot see any light in the future - friends are enjoying their lives taking advantage of being with their husbands and having financial resources to do whatever they want. I feel as if I've been plunged into a parallel universe and am in a living hell. It is only my 2 daughters who keep me going on and yet I know that I'm often down with them but I just feel so bleak inside and no one I know at my age has been through anything like this. My only brother died from motor neurone disease the year before my husband was diagnosed and my mother is in the early stages of dementia. I feel like an 80 year old myself as my life bears no resemblence to anyone I know of my own age.

If you read this please do let me know how you are getting on. I do so hope that things are improving for you.

With love and best wishes,

Ali x