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High Grade Glioma

Edwardson
Posted by

I am waiting for the histology report from yesterday’s biopsy on a tumour in my occipital lobe. It is growing fast and neurologist and neurosurgeon seem sure it will be a high grade Glioma. From what I understand the prognosis will be bad could be as much as 5 years but could well be less than 1. 

I have no idea what to do, my wife seems cross with me wanting to be in control because she knows she will need to have control if/when I pass but relinquishing control feels like I’ve given up and I want to fight as I have 3 children under 16. 

I have set up all the financials they will meef but letting her take over feels like I am being selfish and also feels like she sees me as dead already, 

I’m young and positive not scared now but feel useless and superfluous. 

When I get the diagnosis should I ask to hear the prognosis or just embrace what’s left.

daloni
Posted by

Hi

I am so very sorry to hear what you’re going through. I don’t know about brain tumours but I do know about living with incurable cancer as I have been doing it for three years. 

Reading your post made me feel awe inspired and sad in equal measures. Awe inspired because, having lived through the devastating news that the cancer is life limiting, I think your attitude is spot on. You have done what needs to be done in setting up the financials and you’re taking a positive attitude. Why be unhappy and worried about a future that hasn’t happened when we have the option to enjoy today? 

But it’s sad to hear that your wife is so angry and that you feel useless and superfluous. I’m sure you’re neither and of course you want to stay in control and need to fight. I do think her reaction is understandable and maybe it would help to find someone who can help the two of you to work this through? I hesitate to mention the word hospice but in my experience they are all about helping those of us with life limiting diagnoses to live life as normally as possible. It might be worth contacting your local hospice to see if they can offer the two of you a safe place to work out a way forward that leaves you the control you need but helps her feel safe about taking it on at some future point . 

You pose a very specific question. Should you ask about a prognosis or just embrace what’s left? That’s such a personal thing so maybe the most useful thing I can do is talk about my experience. I’ve not asked about my prognosis as I don’t want a sell by date. I know in broad terms what the life expectancy is for a typical someone with my kind of cancer but I don’t think statistics are necessarily very useful for me as an individual. So I plan for the worst (making a will, sorting out future care arrangements for my teenage children etc) and hope for the best and try to live in the day. Today I’m feeling reasonably well and the sun is shining. 

Mine is only one perspective and it might help to hear others. Why don’t you post your questions in the group living with incurable cancer?

https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/

It may be that the histology report won’t be as bad as you fear and that this group isn’t right for you right now. But if it is, I can reassure you that this is a friendly and supportive and safe place where people really do get it  

There is also a brain cancer group on this site 

https://community.macmillan.org.uk/cancer_types/brain-cancer/

There are no easy answers and we are all just doing our best to navigate our way through these rough waters 

Edwardson
Posted by

Thank you, what about sadness? Everyday I wake up and cry, this helps no-one and seems self indulgent. 

How long was it before this feeling goes ? 

I’m accepting of my fate i’m not in denial, though still shocked and and unable to see beyond not seeing my children grow

daloni
Posted by

Hi

yeah I know. Sadness and anger seem to go with the territory. Maybe it’s part of grieving for the life we thought we’d have. It does pass. You won’t always feel like this. I find meditation really helps. It’s not instant and it takes discipline  but over time my ten to 15 minutes a day on the app headspace helped shift how I look at the world and helps me off the hamster wheels that my mind sets up. By learning to notice my feelings and be inquisitive about them but not judgemental, I realised that under the blanket of anger and sadness that seemed to block everything out, I also felt joy and optimism and delight and all the other emotions I thought were lost. Give it a go? What have you got to lose? 

I did spend a lot of time thinking about not seeing my children grow up at first but I realised it was not helpful. So I got firm with myself. When I found myself slipping into that mire I told myself “don’t go there”. It’s not denial, I don’t think so anyway. It is more about breaking unhelpful patterns of thinking. 

Crying is ok. It can help. But only up to a point. Try to be kind to yourself. 

Xx