My very active, fit and healthy husband was diagnosed with CUP out of the blue last August with 6 months to live. After chemo and radiotherapy earlier this year which were brutal but did significantly reduce tumours and prevent them spreading in his body, my husband collapsed and had seizures 10 days ago. It was awful, I was so afraid he was dying then and there. Rushed to A&E, and CT revealed 3 brain tumours had developed despite the treatment. He's now on massive doses of steroids and anti-epileptic drugs which have brought brain swelling down and improved how he's feeling. But he's still very slow processing information and doing anything complex. They have now offered whole brain radiotherapy as the only remaining treatment. The side-effects sound horrendous. I feel desperate, like there's a choice of losing him sooner perhaps, but having time with him relatively well and himself, of having him for longer but potentially brain damaged. If i talk to him about my anxieties and fears it sounds like I'm persuading him to give up on life. Bus as this situation has gone on, his understanding of what I'm going through has diminished and now seems to have no impact on decisions... has anyone been through anything similar?
Hi Kiki58
I'm so sad and sorry to read your post. It must be agonising to be in your position and to see your husband so unwell. Of course it must be hard for him as well but I am sensing from your comments that possibly he is not as fully aware as he once was. This could be a factor in the decision making for whole brain radiotherapy. Do you think the brain tumours are affecting his competency to see the risks? This could be worth discussing with his medical team as it may affect whether he is able to give informed consent.
I can hear that you feel some guilt in trying to talk through the pros and cons of the treatment but it is a big decision and will affect others as well as himself. If you feel you need more information or signposting, please consider contacting the Macmillan helpline. This is the link to contact
https://www.macmillan.org.uk/about-us/contact-us
Best regards
A x
Thanks so much for this - you're right, I think there may be an issue re his competence to make a decision and ability to articulate it - but not so much that he'd know that or accept it.... Will try and discuss with the consultant on Friday.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007