DKKOSK 8 years ago

My husband of 47 is bed bound and can't talk, he has a grade 4 Glioblastoma , it's torture watching him every day suffering, we have a 7 year old daughter, we are all emotionally and physically drained.   Cancer is so tragic.  We are all getting through each day like robots.   

peterb32 8 years ago

Hallo DKKOSK. The symptoms and disability of your husband that you describe are identical to those suffered by my wife Wendy before she died from a glioblastoma aged 54 in 2011. The way you feel is also identical to how I felt. I felt so helpless. Wendy's illness was less than six months from diagnosis. It is a very aggressive and an awful disease.

In retrospect, I regretted not insisting on getting all the support that we needed from the GP, CNS, Macmillan, District Nurses and social services (carers). Make sure that you insist.

I am now a volunteer for Marie Curie and The Brain Tumour Charity. I am aware of other specialist support organisations but they do not cover the whole of the UK - in which part of the country do you live?

Despite the dreadful situation that you find yourself in, each day is precious. Do you know the prognosis?

Let me know if I can help in any way.

Peter

DKKOSK 8 years ago

Hi Peter

my husband was diagnosed in May 2015 and he has no quality of life whatsoever, it's torture watching the man I married less than two years ago fading each day.  I have amazing support from Marie Curie night sitters, Rowans and Social care, but nothing can take the pain away that me and our daughter will lose him to this awful brain tumour.  I'm not sure how I am getting up each day as it's been 17 months now since my husband started getting severe headaches.   I actually want him to pass now as we are all just waiting, I cannot put my husband in a hospice as he is scared and in complete denial, he still knows what is going on around him.  So so sad.   Sorry to hear about your wife passing away.