I was diagnosed just about 1 year ago with mets to my peritoneum. My kids at home are 17 & 19. Although they know mom has cancer again and goes in to Boston once a month for treatment I don't think they really know what it means or that it's any different from last time. It's hard to sit down and have a conversation about where this disease is going when I know so little myself.
What have you told your children? How old are they? How do I tell my kids, gently, that this is probably going to take my life sometime in the next several years. But that we're not actually sure about that either? It's such a heavy burden to put on them and I feel like I'm protecting them but also being dishonest with them at the same time.
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Shelly1009
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I bet they know more than you think. They are adults and likely google away. I would tell them just what you wrote here: that the path of this disease is so unknown. Tell them that you are doing all you can ( like going to Boston) to be with them for years to come, but there are no guarantees in life. My daughter has young children, 5 and 22 months, but the 5 year old knows that she has cancer and that mommy is doing treatment so she can see her grow up. So, yeh, I would tell them exactly what you said to us.
My children are 12 and 14 and they now I had cancer and have regular scans and treatment to keep me healthy. But I’ve chosen not to tell them, but I worry they will one day be angry I kept it from them. I decided as I may be healthy and well for many years to come so why ruin their childhood. At the moment I look healthy, I’m healthy , I work and there’s no active cancer. Why worry them?
I feel the same way you do, I tell them when I think it’s the right time. I look healthy and I work every day and at the moment I feel pretty good but I do have bad days. I want to watch them grow up and do all I can to be here for them! I’m going to keep fighting until I can’t!
Yes I have bad days too... think the medication, work and menopausal symptoms all catch up with me from time to time and I need some sofa days! But the other night we were all in the garden at 10pm when the snow fell playing snowball fights in the dark... that’s what I want my kids to remember about their childhood and in that way I’m just a normal mum!
When this journey began I told my kids, 39 and 27, that they could ask anything they wanted and that I would be completely honest with my answer. I keep them informed of upcoming scans and labs and when results come back I give them a brief synopsis of results. Rarely does my son ask any further questions but my daughter will after a week or so. I feel like this lets them process the information in their own way and own time. It seems to be working for our family.
When I was 15 my mother was diagnosed first time with BC. It was devastating for me and I struggled. But as time went by, 10 years, it was easier. What I know now at 71 years old is that I did not cry in front of my mom because I was always protecting her. Her little brother died of cancer when 30 about 20 years before. Problem comes now that I understand that was not the best thing for me as I continue to carry the pain of all of that 45 years later. When I was in my mid 20's my aunt, whom as my idol, best friend, mentor, etc. had MBC. I groomed my life after her and we were a lot alike. My mother believing that she did not want to burden me, did not give me the details as to what was really going on. One day I woke up and she was dead. It was my first experience with someone dying young that I loved so very much. I was devastated and cried all the time for 6 months. Two years later my mother went through the same thing but then I knew that I could not let that happen again and that, as painful as it was, I knew I had to tell my mother how much I loved her and how much I would miss her when she was gone. Silly but it was the hardest thing I ever did but the most important. When my mom died a few weeks later, I was fine as I knew she was no longer suffering. I have four can, that they call me as often as possible because one day I will not be here and I want them to not feel guilty about some stupid thing they did not do. Although I understand that everyone seems to regret some dumb thing after their loved ones die. So, I say do not keep them in the dark.
I am interested in this thread because I have a very young daughter, she's two and a half.
I am pretty open about my health with those around me, and my daughter knows I take medecine daily, and that I see the doctor from time to time, that I get tired at times, and sad too. But I am completely unsure as to how to navigate the next few years with her as she becomes more and more aware of the world in general. She starts school in September (I live in France and they start school at three here).
I am so terrified of her hearing the word cancer from someone else and associating it with me and thinking I'm going to die.
I find it's actually the hardest thing about all of this, the impact it will have on her.
My kids range from 25 down to 11. We have been open with all of them that it is incurable and that I'll always be on treatment, and that we don't know how much time we have. The older kids are definitely more aware and make a point of keeping in touch and stopping in regularly. The younger ones (still at home) didn't seem to dwell on it while I was doing ok. I'm finding treatment is really slowing me down so that makes it obvious that I am not well. They are doing ok and we are always open to talk with them. We felt it was important to be open with them so it could be discussed and they could begin to process it. It's an opportunity to grow closer. My dad died of cancer when I was 13 and we weren't told very much....we just learned from what we observed or overheard. I don't think that's a good way. We missed so many opportunities to share and process together.
Yes I have an 8 and 12 year old. Someone on here said they don’t want to steal their childhood from their children by telling them the truth. That’s exactly how I feel. They do not need that burden!! I don’t want them living in fear and worrying about me everyday. It’s too much for me sometimes..They know I take meds and I tell them it’s to strengthen my bones after surgery. I plan on living many more years and they don’t need that hanging over their heads. ❤️
Hello Here_Now My daughter just turned 3 years old.
I am French but live in the USA.
So sorry you are going through this, hopefully you have family and friends to support you and your family. I think kids can feel and understand so much. My LO always wants to see my “bobo” when I come back from doctors appointment and she gives me magic kisses to be help maman to heal. I explained her that I am sick and this is why I am taking drugs and going to the hospital. I don’t use the word cancer, she is so young she wouldn’t understand (as she has a hard time understanding Covid...) but when I am limited and cannot do what I would like to do with her, I tell her so (this is not your fault, it’s not that I don’t want to but I cannot). She is very understanding and caring. She will start preschool next September and I don’t worry about it for now, one day at the time. Take care !
I told my 4 yr old (first time around) a kid's version of getting sick and needing treatment. The thing with kids is you can't fool them. They are like sponges. Better they hear it from you than by over hearing a conversation with someone else. Or someone unexpectedly asking you about it while your kid is present. There are some wonderful kid's books available to read to them if you are obviously unwell, or having bad days. It is good for them and keeps their trust. Here is a good starting point below. I used to have a wonderful book that helps guide you how to talk about it - if I recall the title I'll come back and add it but there are MANY resources out there. cancercenter.com/community/...
Oh thank you, your words mean a lot and I totally agree. Yes, children know! More than adults even at times.My daughter and I are so close, I'd like to maintain that and her trust is really important to me. Ok so she is only very little still and I might be idealising. But she is my only child, and I grew up feeling distant from my own parents, I'd like to give her a different experience.
And thanks for the link, what a great website.
Let me know if you remember the title of that book, we both love reading and books!
Copied from an old email I wrote. The first book takes you through all the kid's ages and gives examples how to navigate different conversations that may arise with each age group. It even covers tackling how to discuss different stages of our cancer:*** "When a parent has cancer" - highly recommend!
Also if you go to Amazon, there is a section of relevant kid's books, another great way to slowly introduce elements of treatment to kids.
"Tickle Tabitha" was one I had(about grumpy mum).....ones that have a little humor are good. My son liked these when he was 4.
Good to be honest with the kids about what to expect during treatment.....and in very simplified form what is happening. I explained like bad cells and good cells, and treatment helping good take over, LOL ...something like that, very matter of fact, eg. "Mummy will be very sick for a while but then she will get better". Troll the internet...somewhere there are guides on this.
Letting the little ones play doctor and nurses is also great.
My main suggestion to anyone with young kids. Do NOT talk on the phone openly about your treatment when the kids are around. Even when they seem absorbed in play/tv they are still listening!! Then they pick up the real anxiety going on.
My son used to drag me away if people held me up on the street talking about my treatment.
My youngest was 2 when first diagnosed. My other children were 5, 8 and 17. The two little ones remember nothing about that time. My 17 year old blocked out so much because of the pain associated with the fear of me dying. She does not remember a lot of details the first time around. My 8 year old son, had the hardest time. He totally understood that I could die as 3 weeks earlier his best friends father dropped dead of an aneurism in front of him. I put him to bed on night and he was sobbing. I brought him downstairs and we talked at length about what I was beginning to go through. We talked about surgery and other treatments options and he had opinions! It made him feel so much better. I explained that we had two dear friends who beat the odds, more than once with each having multiple different cancers. And if they can beat the odds so could I. Now it was stage 3b then but did beat the odds for 20 years. Then MBC and so far it has been 3.5 years and going.
My kids were 3 and 5 when I was first diagnosed. I just told them I was sick and would be getting chemicals to make me better that would make my hair fall out. “Isn’t that weird?” I said. One day when I whipped off my wig that I hated to put on my soft hat, my son said “mommy, it doesn’t matter as long as you wear a smile!” Fast forward 11 years. They were 14 and 16 when I had a mastectomy, but no chemo and such after. They knew I had cancer, but they also saw me just getting on with things. Fast forward another 11 to 2016, they are both adults and both a little scared. MBC does sound worse, and they do google things (I try not to). I keep them posted, and when we’re together, they’re extra affectionate. I made up legal docs to make one POA for health care and the other for finances. They acknowledged, but really didn’t want to talk about it...death still seems remote to them and it’s better for both to see each day as just another day and not a count down (me too). Now it has been 6 years since MBC started. We never know who is going to be a long term survivor. Each child/ adult child is different and each of us is different. So my advice is to be age appropriate. Telling an older child doesn’t have to be telling them about immanent death, just about what’s coming to be a chronic disease. There’s hope with new medicines coming down the pike! I’m on my third line of treatment. 3.5 years on Ibrance (more than average), about 6 months on Afinitor, and now 6 months on Piqray and my recent PET looked improved. Hooray for life!
Well said.Hooray for life indeed! I need to write that on a post it note and stick it where I can see it everyday. And children remind us of that, right?!
Young children keep us going as we have little time to worry about ourselves. When I was 48 and first diagnosed, my children were 18, 8,5 and 2. The 5 and 2 were oblivious . My 8!year old was at the age of reason and understood what it was like to lose a parent as he watched his best friends dad die in front of him 3 weeks before I was diagnosed. So with him, we discussed surgery options, etc which helped minimize the fear. Then reminding him of our friends who had cancers for years snd lived far longer than expected and at the time still alive. These things helped him ALOT
Hi My son is 18. It was so hard as this is my third diagnosis since 2012 but I also feel lucky I have been here for him to turn 18 in January. I explained to him exactly what I was diagnosed with and the treatment plan etc and I think for him this was the right thing as he copes better knowing the truth.
I was very positive when I told him and I keep him up to date after each hospital appt etc and he tells me this helps him. I think the best think is to be positive , be truthful and also don’t plan too far ahead when you’re making plans with kids. He is currently doing exams and i did speak to his teachers confidentially just to make sure they supported him with Uni applications etc when I’m feeling a bit fatigued . When I was diagnosed in 2012 I made sure I spent as much time as possible with him, travelled the world in between working hard and supported his dream to be a travel writer and I’m so pleased I did that in the last 9 years and I secretly plan in my head to travel more with the aid of my current meds but like I say don’t promise or plan ahead too far. I believe by telling him the truth in the right positive way I’m teaching him about life too.
This comment is for everyone here who thinks they are saving their kids by keeping a secret. Obviously every family has their own situation but with a simple google search it is easy to see all the reliable sources for cancer info that fully support giving your children an AGE-APPROPRIATE version of the truth. Children observe and overhear SO much more than we like to acknowledge! So I researched, I carefully planned what to say, and I got books and materials ready before I said anything. He was 4 the first time. Did it raise questions? Sure but I navigated my way carefully through those, and SO much better than him hearing it in bits and pieces and wondering why I hadn't told him. Plus this way I was able to reassure him.
I had a good friend pass away with cancer, a painful decline before she departed us. She didn't want to tell her teenage son she had stage 4 because he had emotional issues BUT she didn't expect to pass so quickly either near the very end and he was DEVASTATED. And I'm really not sure he ever really recovered.
With teenagers it is even more important that you include them because they are already going through a weird time with the whole child/parent relationship thing and you need them to trust you. It is a challenge for us to confront this but I believe it is for the best.
I have a 14 and 15 year old, they know but I'm not sure how much they have processed it since Nov. 2020. One thing we are learning is that yes, this cancer will most likely be what takes me in the end but maybe it won't be. We just don't know. I could get hit by a car on my daily walk, the other day two dogs attacked me (luckily no bites), things like this kind of put things in perspective for us all. We definitely aren't in denial we just acknowledge there are so many unknowns and try to take it a day at a time (easier said than done sometimes). This is such a hard place for all of us, I wish we didn't have to deal with cancer at all but keeping things real and as positive as we can seems to be helping.
My 3 year old knows mammy goes to the doctor for bloods every month and it’s her job to remove the plaster when I get home. She knows I take medication every morning to “make mammy’s tummy feel better”. She obviously doesn’t know I have cancer and I have no intention of telling her, but I have normalised all the hospital trips and poking and prodding etc so she doesn’t worry when I’m with the GP or at the hospital. I never want her to worry and I want her to have the happy carefree childhood she deserves.
You’re children are adults and I’m sure they’d appreciate being treated as such. Don’t make the mistake of leaving them out in the cold or excluding them from this journey. At least give them the option to decide for themselves what they want to hear/be told.
I have 3 daughters. 22, 19 and 17. My cancer from 2012 effected them a lot. I got diagnosed with MBC in 2019. We have been really open with them. We tell them we are doing everything we can to fight this beast but we just don't have concrete answers. Honestly, it has made us all so much closer and we cherish every minute that much more. I am not a big fan of keeping anything from these girls. They have had to grow up faster than others and deal head on with horrible things. They have risen to the challenge and proven to have amazing strength and maturity. We talk about so much now. In some ways, this diagnosis has been a gift that way.
My 14 year old knows that my cancer is incurable. The other kids at school talk about cancer and think the worst, so I needed him to realise that you can live a relatively normal life with it and not look ill. I have told him that I will hopefully have many years here, and that it is important that we live our lives during that time. We have a 10 minute chat before bed every night and we go on walks together. Sometimes I use these times to ask him if he has any questions - he has asked things like ‘what happens when you die’, so be prepared to be honest and open when faced with these questions. He now knows that even when I won’t be here physically I will always be around in nature and will be looking out for him.I think every one of us knows what is right for our own children, so trust your judgement - it will be the right choice.
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