My husband has stage 4 glioblastoma. I am new to the group to look for support and share experiences

Hi Ali,  I hope & pray your husband is recovering, take each day as it comes.  He has  got through this hurdle and he can keep getting through, keep the faith. My husband was also recently diagnosed with the same and had a craniatomy 3 weeks ago, he is approaching 50. Its so much to cope with getting your head round the diagnosis, supporting ure kids, trying to carry on, i know how you feel. I have bad days, ok days, sad days, so many emotions but you are not alone. None of us know what the future holds, just take each day, try to be strong and take time for yourself. Dont look at all the stats, ure husband is an individual and staying positive is the  best mindset. There are lots of positive stories out there, just remember that.  Here if you want to chat, sending hugs, good wishes and positive vibes xxx

Thank you for replying.

It helps just to speak to others that are in the same boat.

Have you had much support emotionally? My husband has been offered counselling today.  But I am struggling to find support for my children.   My eldest is 17 and is not coping and very depressed.   There doesn't seem to be help for him without months of wait lists and we don't have time to waste.

I am trying to live day by day.   Today I am trying to help my husband pull himself out of a bad place mentally.

Have you had a treatment plan for next steps? My husband was told he is not strong enough to cope yet and will start in about 5 weeks.  I am guessing because 4 surgeries has set his recovery back somewhat xx

Hi Ali, I came on this group to get some support which has helped, i think there is a phone number for Macmillan, have you tried calling? My parents came to stay when he was first diagnosed as he was in hospital 10 days and then had neuro appt and was discharged, surgery was 3 weeks later. My mum is back and forward to stay and helps loads, my daughter is at uni she is 20 so trying to make sure she gets on with her life but she comes back in between. My son is at high school, they have coped really well, we just stay positive, try to be normal and work really helps me to have something to focus on. His treatment will be the standard radio/chemo in a few weeks. I cant control what has happend or what could happen, but can try and control how I respond. Its rotten feeling sad and worried i know,  and it helps you mentally if you can try and be positive. Your husband just needs time he has been through a lot. Keep the faith and hoping he will start to feel better physically and mentally. I have reached out to 1 or 2 close friends and it does help xx

Hi, sorry to hear this. 17 months ago my dad who is 49 was diagnosed with GBM4. He had a craniotomy followed by chemo and radiotherapy. In May 2022 he was in remission and then we went on holiday. Something wasn’t right and then the worse news again. A new tumour grew this time inoperable right in the centre of his brain. Unfortunately for him he is in the 1% who have a recurrence so soon. Chemo has been given and he’s taking that but that’s all that can be done. He now has been given weeks-months to live. But he is ex-military and really fit hopefully he will last this Christmas. I’m 18 and have a step bro and sis who are 12 and 8. i don’t live with him but I see him often and my stepmum is always informing me when I’m not there. He’s not in pain so hope this sort of helps. Sorry about your husband being in a bad place at the moment. Best thing for me was just being there and keeping my dad occupied as his short term memory is not good. Sorry rubbish post but hope some makes sense. 

I am sorry you are going through this too.  I also have lots of support and my mum and dad have helped loads with the children.   I have 3, aged 17, 13 and 6. 

I am in total agreement about controlling how you respond.   And trying to keep the children positive. 

How is your husband coping and feeling? Is he managing to stay positive too?

I'm so sorry,  I hope you are coping and getting some support.   Have you managed to get any support? As I am discovering how difficult it is to find for the children xx

Hi Ali, in all honesty i think he is still trying to process it, He was in denial at first and didnt want to really speak about anything. He is not his usual self but im hoping time will help him. Im so glad you have your parents to help, I just try to keep upbeat and dont show him im upset, but i have had some awful moments to myself. Its hard to keep ure emotions in sometimes, but its finding a balance. I think its something he will have to come to terms with in his own time, and we are not and have ever asked for a prognosis, so as far as im concerned, the future is unknown, and thats just life in general isnt it xx

Ok We went to the maggie centre initially, my husband seemed to take some comfort from it, but therapies were alien to him, when things got too much a few visits to talk to advisers at the maggie diid seem to help. Just st talking to a stranger who seemed well informed helped for a while. Good to go somewhere when other organisations couldn’t help because of covid. Really worth having a word with them.

take care, my thoughts are with you xx

The Maggie centre surely or Macmillan can put you in the right direction surely as your children are concerned. My youngest son sat in at a Maggie visit but in general they internalised but they are in their early thirties with wife’s to support them. I can only hope and hope and pray and even presume there is help and talking about therapy for those younger than mine.

Hi there, sorry to hear about what's happenning with your husband. My wife is in a similar boat. Our children are 15 and 13 and we got in contact with the Ruth Strauss foundation who were really helpful. My eldest took part in a peer to peer group with other children who have a parent with a terminal cancer diagnosis. If they can't help you directly they often know local charities that can.

All the best xx