Primary Central nervous system

[Radical]

Hi there,

My husband have been diagnosed with PCNS in February and is opting not to go through with chemotherapy as his treatment plan is quite intense and have no guarantee. He said he would rather have quality of life rather than quantity but broken from all the side effects. I found it hard at first to understand but I need to support his decision as he is still able to do so. I just want to ask whether there’s someone out there who has got the same condition as his…He feels really isolated and is getting depressed. Feeling helpless.

[Anna]

Hello Radical,
Thank you for your post. I am very sorry to hear about your husband’s illness.
It can be very hard to support someone close to you who has decided against treatment, even when you feel it is right for him to make that decision. Concern about side effects is often thought about as a reason to decline treatment- sometimes this is a fear of the unknown. Talking to someone who has had the treatment can give a balanced view of what it is really like.
I hope someone with a similar condition replies, but as this is quite an uncommon diagnosis, they may not- you could try some Australian sites which have chat or blog pages for disease specific discussions.
Feelings of helplessness and isolation are very common. Depending on where you live, the Cancer Society can offer support, free couselling and possibly links to others. Either of you are very welcome to call the nurses helpline on 0800 226237 or go into the nearest branch, or email on info@cancersoc.org.nz
For you, you might find this booklet helpful https://wellington.cancernz.org.nz/assets/Cancer-information/Supporting-someone-with-cancer-2/Website-PDF-Supporting-someone-DIGITAL.pdf

Kind regards, Anna

[Author]

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