What to tell my family ?

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Hello All

This is my first time posting in this group. I have brain mets, my primary cancer was breast cancer 15 years ago. I found out I had a single brain met in February and this has responded well to stereotactic radio surgery although the right side of my face is still numb and I do suffer from the symptoms of brain swelling. I have just had my next scan brought forward to this week as I have been getting bad tinnitus and the neurologist said it looked on my scan as if their might be a new met and mentioned the lining of the brain. I am now back to feeling as I did at my initial diagnosis and very frightened for the future.

My issue is what to say to my family. I have not asked my prognosis as I don’t think it is very helpful and no one really knows, however I am under no illusions and realise the outlook is not good. My family know I am incurable but I think they expect me to keep going for a long time yet. I am always very positive around them and probably play down the seriousness of my illness. I have 2 daughters aged 25 and 22 and I don’t want them to put their life’s on hold for me (one of them is about to start a new job 4 hours away and I have encouraged her to take the opportunity). Another part of me though wonders if I should tell them I may not have long left - this seems more honest but I really don’t want them to worry or change their life’s.

I am very worried for their future. I know they are adults now but I remember how much I depended on my Mum when I was in my 20’s and 30’s especially when I became a Mum myself. It breaks my heart to think that they will not have that support.

Has anyone had conversations with children or other family members and could advice.

Thanks

FormerMember over 5 years ago

Hi Merlot21

Welcome to this group, although I am sorry you qualify for membership. I like your user name. You sound like the kind of person who knows what’s really important.

I am a mother of two teenagers and aunt to two young women in their late 20s and early 30s. I quite understand your fear about the future and worry about what to say to your family. It’s typical of us mums. Always thinking about others ahead of ourselves.

When I was told I was incurable I also agonised about when and how to tell my girls. The most important piece of advice I had came from a friend whose mum had died of a brain tumour when she was 17. Her parents decided not to tell her what was going on. She said she would much rather have known. She felt honesty and openness were much the best policy.

I have followed that advice and my girls know what’s going on. But I also tell them that I want them to live as normally as possible in this difficult situation. My older girl is off to uni this autumn and is excited about it - and so she should be. It’s what I want for her. She told me a couple of weeks ago about how she’d called the university pastoral unit to talk about my diagnosis and find out what support she can call on if/when my health deteriorates and she feels she’s needed at home. I think that’s amazing and I am very proud of her.

I can’t tell you how or what to tell your children other than to stick to the facts and realise that this is going to be an ongoing conversation, not a one off.

FormerMember over 5 years ago

Hello Merlot21

i too am a mom, I have two biological boys with cognitive impairment age 25 and 27, plus 4 step children two whom I raised since they were 5 and 6 from my first marriage who are now 29 and 30, two in which I just acquired from my second marriage just got married August 3, 2919 they are 26, and 30. The 30 year old lives with us. I also have a granddaughter from my first marriage who is 12 I raised her until she was 7. As far as I see it I don’t even like to put step in front even though I didn’t give birth to all of them I feel as though they are all my kids.

I was diagnosed as incurable in April of this year. I struggled with what to tell my kids. Especially my two cognitively impaired boys. At first as was just telling them I was sick with cancer they asked if I was worried I said no they replied if your not worried we’re not worried as I have had two previous cancers. Than while talking with a friend he made what I felt was a good point if I wasn’t upfront with them and something happens and I didn’t tell them they may feel hurt, angry, regrets and guilt, because I may have robbed them from spending time with me that they may have wanted, feel I lied to them and wouldn’t understand why. This spoke to my heart I’m 46 and lost both my parents if I had known they were going to be gone (even though there was no way of knowing neither one was physically ill). I’m sure I would have wanted to spend more quality time with them when I could. That doesn’t mean I would have stopped living my life just I would live it slightly differently. I would have had a choice. So I decided to tell my kids the truth that it’s considered incurable that I will fight and my goal is to be the first person in history to beat this. No one can tell you what’s right for you or your family this has to be your choice and I’m sorry you have to make that decision. I hope this helps.

Best Wishes.