Nothing prepared me for caring for my wife who was diagnosed with a grade 4 glioblastoma brain tumour. I am happy to share my experience with anyone in a similar unfortunate position.
Hi, my husband also had a glioblastoma, such a devastating illness. I too would be happy to offer support if needed.
Hi My 39y old husband has giloblastoma grade 4 He had two surgeries but I was told last week he has months left to live I’m just devastated We have a 3y old daughter I’m struggling to know how to care for him and what are the right decisions to make
Hi, this is my first post and not sure if I’m in the right place?! I was diagnosed with a GBM4 in 2012 and underwent radio and chemotherapy which was successful in shrinking the tumour and I was in a state of remission for 18 months. Tumour started growing again this year so chemo started again but isn’t affecting the tumour. I had surgery in August to Debulk the lesion and I see my oncologist later today to discuss the treatment plan moving forward. I’m 31 and have a 3 year old daughter. I’m finding that I’m struggling emotionally much more with recovery and getting on this time round and am looking for a little real advice from people who are experiencing a similar situation. That seems a bit of a ramble, sorry! Best wishes to all affected Corinne
Hi Corich, we mainly deal with terminal illnesses on this community so if talking about that would be helpful here is definitely the place to post.
You can also have a read of our information on Living with a terminal illness in our help pages which cover a wide variety of subjects.
Also if it would be helpful to talk to someone directly our Support Line is on 0800 090 2309 (Mon-Fri 9am-5pm).
Hope that helps.
[quote]Hi My 39y old husband has giloblastoma grade 4 He had two surgeries but I was told last week he has months left to live I’m just devastated We have a 3y old daughter I’m struggling to know how to care for him and what are the right decisions to make [/quote]
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.
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
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.