Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

Scared to move but need to come home

EYintheUSA
Posted by

My husband has GBM Stage IV.  He's had his surgery, radiation and is now on chemo.

Even though he is doing very well now, we know he potentially has a shelf life only slightly better than yogurt. We'd like to come home. We are both British citizens. 

So, I'm asking for your advice and experience with hospitals in the UK specializing in the treatment of GBM. Most of our family is around the Nottingham area.

I think we are lucky, my husband has received excellent care so far, but it’s so hard to be away from family at this time.  I also have to work in order to keep the medical insurance coverage.  My husband is alone at home all day. He is not able to drive.

We do not want preserve life at any cost – we just want to be together and enjoy whatever amount of time we have.

Our GBM experience has left us emotionally beaten and bruised.  Any change, is actually very stressful, but I'm hoping we can make this one last trip across the pond.

Thanks for your help.

Peace and love 
Novembergirl
Posted by

Hello EY. I can't talk about care in the Nottingham area but I just wanted to say good luck to you with your decision making. My husband was at the National Hospital for Neurology and Neurosurgery in Queen Square (part of UCLH) which has a specialist brain tumour unit, but of course it's not close to where you want to be. I hope someone can chime in with a recommendation for you. I would agree that focusing on emotional wellbeing at this time is a good thing to do. UCLH was for the surgery side of things - he would have had other treatment at the John Radcliffe in Oxford, which I'm sure would have been very good but he wasn't well enough for it. I'd have thought any major cancer centre would be able to support you, but I completely understand why you're asking the question. Very best wishes.

EYintheUSA
Posted by

Thanks for the response.  I have heard of the hospital National Hospital for Neurology and Neurosurgery. We talked about London as an option, it's not entirely out of the question. However, that's only if my husband can tolerate the travel.  At them moment he can, but it is the future I'm concerned about.

Honestly, neither of us can handle change very well now.  Everything makes us anxious. I'm not sure we'll actually be able to make the move when it comes down to it. Urgh...

Peace and love 
Bluees
Posted by

My son had his surgery in Stoke and his treatment in Cheltenham and we had advice from a consultant friend in Oxford, all had the same approach to treatment and he has had, and continues to have, excellent care.  So much depends on the location of the tumour as far as surgery is concerned.  My son had a two hour round trip for radiotherapy and didn't suffer any real side effects, he was very glad to be based at home (he was at university when diagnosed) and this helped him have a very positive approach to treatment.

Mother of a 24 year old son with GBM