Our son was diagnosed with glioblastoma in 2022. After intensive treatment all cleared up but is now back. Tumor was on left side; he can't use his right arm at all, right leg has some movement. His speech is gone except for a few words now and then. He gets extremely frustrated if we do not understand his requests. He demands that his wife is the only person to help him shower.
He has a wife and six-year-old daughter. His wife has been his full-time carer from day one. The strain on her is too much. Daughter demands almost fulltime attention.
We are his parents visiting from South Africa for six weeks and would like to have something in place to ease the tension before we return home in three weeks' time.
His wife wants to leave him in our care for a breather, but he refuses. We do not know which route to take to improve this situation. Any suggestions?
Thank you.
Written by
worriedparents
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Hi there. I’m so very sorry to hear about your son and what you are going through as a family. We have just been through a similar scenario. My Dad’s tumour came back in March after 3 years. We were sent home to receive palliative care. The local hospice nurse came to visit and we said that Dad wanted us to care for him at home. She got everyone involved, OT, district nurse etc. They were so helpful and everything is funded so we didn’t need to financially worry. They bring equipment for everything. Dad had his bed downstairs and had a frame which we could move him on. It was so much easier then as my Dad also lost all movement on his right side. After 8 weeks we then convinced Dad to have carers come in and help too as we just needed some assistance at times during the day. It is too much for one person to do without any carer support. Especially, when there is a little one to look after too.
Thank you for your reply. I think what you did was ideal. I especially like the mention of the outside help you got, that is exactly what our son needs. Hopefully we can investigate this further with our daughter in law.
Has anyone spoken to you about any possible clinical trials which might be available to him?
You can find out more about clinical trials on the Brain Tumour Charity website, there is also a wealth of information on their site, which you might also find useful.
Regarding diet, have you cut out all unnecessary sugar, which feeds cancer cells? Pecan nuts, blueberries and turmeric spice have anti-cancer properties, so it would be useful to include them in his diet.
I was diagnosed with my first grade 4 GBM in May 2010, which was in my right temporal lobe.
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