Telling the kids...or not

hi Kitkit

I just want to start off by saying that I’m sorry that you are here and have to deal with this disease and your struggle with telling your children or not is one I’m familiar with. My children are younger then yours I do have a 28 year old(she’s my oldest) and 4 others ranging in ages 14-21. When I was diagnosed almost 6 years ago I wanted to wait until I thought it was necessary to tell them but put myself in their position and realize that if it were my mother I would have wanted to know. We tell the kids what we think they can handle and for some that’s a lot for the others basic info and let them come to me when or if they want to talk. This is a very personal decision and what works for me may not Be what works for your family. I wish you all the best of luck and this is a great site for support and info.

Kristin

Our kids are young adults. I was first diagnosed 10 years ago and became metastatic almost 4 years ago. We told them even back then that what we know, they know. No secrets in our family. Just how we do things. Each family is different and I respect everyone’s personal choice.

If you don't tell them, don't tell anyone. Because it would suck for a family member or friend to blurt it to them not realizing they had not been told....

The more I think about it the more I would lean towards telling your 'kids'. First, they are not kids and it might feel insulting not to be included in a significant health situation. They may have anxieties, but they are likely to take cues from you. You can set the tone. It may be you are projecting your anxiety about them feeling pain (like you did, as a young adult) and underestimating their true ability to handle it. You will not moan and groan as your parents did!

When you have your treatment plan in place, and you have wrapped your mind around things, and can quote the doctors' hopeful affirming stats, and show that you are calm, my suspicion is they will 'follow the mother duck' and adopt that attitude. I'd say, "HIV used to be a death sentence and now it is a chronic illness that can be managed-- MBC is becoming more and more like that, with many many treatments to keep it quiescent, and I am likely to be healthy and feeling normal for many years... My doctor says X. Y, Z (hopeful facts)... but still I wanted you to be aware of it, so you are dealt into what''s going on for me in case I seem off, or distracted."

This way, whether you do or don't have successful treatment and years of wellness, or whether you might have side effects, or god forbid progress, they have been given the relevant info about their mom and can act accordingly and understand the bigger picture.

I was honest w my three kids (20, 27, 31) -- and I had a bad diagnosis (TNBC) but luckily caught at an early stage. I was honest because I knew I could be dead in 3-5 years if things went poorly for me. But that's not how I presented the info. I said, "this is a nasty cancer that can be lethal, but is also paradoxically very responsive to chemo, so I am fortunate to be young, healthy, and in an early stage, and I am hoping to wipe it out w aggressive treatment."

I am single, so I had friends who offered to come stay and help me out during chemos. My 27 year old son insisted on covering one of my chemos (Me: you don't need to do that I have lots of coverage" HIM "Mom, I DO need to do it, and I'm coming for one of your chemos, so tell me which dates are best.") He took time off, flew home and stayed for 2 weeks. IT WAS BEAUTIFUL to share this time with him, to receive love and support, to be cared for by my son, to eat the meals he cooked for us, and to witness him in a caregiving/fatherly role (especially in case I would miss seeing that). I count it as one of the best two weeks of my life, baldness and fatigue included.

Don't rob yourself of such experiences, nor rob your kids of the chance to step in and show maturity, love and support.

I agree that withholding this information from your children could cause more difficulty for them down the road. They could wonder then if you might be giving them only partial disclosure to spare them, based upon earlier secrecy. I told my children. It wasn't easy, but I told them there was hope, and that I would be open with them. Santabarbarian makes a wonderful point about allowing our children to express their care and concern for us. (My children have in no way smothered or overwhelmed me, and I don't think they are "pre-grieving" in any way.) It might be harder on you to maintain secrecy.

Good wishes!

KitKat,

What a rough experience you had with your parents. I am so sorry that you had to go through that nightmare. Both you and your children will benefit by you being open, honest and forthright about your situation. You will maintain high levels of trust and open communications which will be far more valuable in the long run than sheltering them from your situation. Best of luck

Hello,

Over 4 years ago I got my stage 4 diagnosis which was 16 years after primary. My daughter had just started University and my son had just moved to a new city. My husband passed away when the children were young and that has been hard for them. The mets were in my bones and my medication was Exemestane. I decided not to tell them much to the amazement of the small group of people I did tell. I am now on Faslodex another relatively easy treatment. I work and socialise pretty much as normal. I feel I have given them a gift of not having to worry about me for these past years. When my mets get worse and my treatment changes then I will talk to them. I don’t want this horrid disease to be on their minds every day. I will know when the time is right. That’s my decision but I think I’m in the minority.

With love