Posted by Lacey_adminCCS on May 30, 2017 11:46 am
I'm interested in your personal experience.
How old are your kids?
How did you first tell them you had cancer?
How did they respond?
What questions did they have?
What advice would you give someone else who has to talk to their kids about cancer?
DiDi , DefLeppardGirl , jorola , Roll-On, NormaVi ....all are welcome!
Posted by NormaVi on May 30, 2017 12:32 pm
My 16 yo found out when I called from the emergency department after be admitted following an ultrasound that morning. She came to the hospital with my husband to wait with me to take me home. The ER doctor told us that I was facing a cancer diagnosis of some sort - likely ovarian.
We called my son at university a couple of days later to tell him.
I met with a social worker right away and she told me it was very important to be honest with them at thier age, and to reassure them that the things they need in life would still be present. So I do not withhold any information from them.
Advice: find out what your kids need based on thier age. Young children have different needs from tweens and teens and mature children.
Meet with a social worker WITH your kids. This helped them to voice some of thier concerns and know that they can ask for help, especially since none of thier friends are going through this.
Posted by jorola on May 31, 2017 1:49 am
We told the boys, although they already were a big help at home, I would need more help as my focus was going to be more on helping Mick. They did so without question and no complaining. We explained all the treatments. Often I would talk with the boys when Mick was sleeping and answer their questions about how he was doing and what the future may look like. The kids knew why Mick developed lung cancer. They never questioned that. His type is either cancer by smoking or asbestos exposure. He was a heavy smoker since he was 11. Yes 11 years old. We used this to hammer home for them never to start. So far it has worked. They wanted to know what the treatments were doing to do to him, how they could help and of course most of all would he live? The last one was hard. I told them his chances were not good. This broke their hearts as he was more of a father to them than their own biological father. In some ways I guess I prepared them more for the worse. Was that right? I don't know. But i never wanted to give them false hope either. We were told that Mick only had a 10% chance to live 8 months from the date of his diagnosis. With that kind of odds I didn't think I had any other choice at the time. In a way my boys had to take on more responsibility and grow up a little faster. As unfair as that was it also did not hurt them either. I think that hard times in life also teach us the best lessons.
I spoke often to Mick's daughter. She was more difficult to assess. We are very close but with this she was very quiet. I still gave her the same info, a bit more gentle though. Then just gave her time to process. In her own time she would come back with questions and I answered them honestly and the best I could.
Sorry but I don't remember more specific questions the kids asked.
My advice is to yes be honest with kids. They are smarter than you think and are listening when you think they are not. They know more of what is going on than you think so you might as well make sure the have the whole story with the proper information rather than them getting bits and pieces and coming up with their own.
Posted by DefLeppardGirl on May 31, 2017 1:54 pm
I was very honest and upfront. I told him when I got called back for diagnostic mammo & ultrasound. He knew about all my appts as they came. He lives at home, so I see him all the time and with his age he is mature enough to hear the truth, but it concerned me because I know it's imperative to his emotional health that his mom be in this world. He's always been a mature person, but also sensitive and I know I need to be careful with him.
He retreats to to his room a lot to play online with his friends. I think he spent a lot of time processing and coming to terms. My GP asked me soon after diagnosis if he was doing all right will everything and I told her "as long as I don't need chemo and get sick and bald he will be ok". I didn't know then that I would need chemo and so much more. But we got through. My son shaved my head for me when my hair started to fall; soon after he shaved his own head in support. One thing that was important to me was for my loved ones to tell their best friend, etc so they could set up a support system of their own. I knew they would need to talk, lean on or just have the love and understanding of someone that was just for them.
My son never asked me if I was going to die. He didn't ask a lot of questions. He may have been reading online, but I'm not sure. He did take me to and participate in a counseling session, to an oncologist appt (I wanted him to meet the man who was saving my life), and to a Herceptin infusion. I felt it was important for him to feel involved and have an understanding of where I was going and what happens there. I didn't have him come to chemo, as it was so long 6-8 hrs often and it made me too sick. I felt it was too much for him.
I think what information you share should all be based on their age and maturity level. Having them involved when appropriate can help give them a sense of control over the situation and the opportunity to ask questions of the doctors, nurses, etc. And they really need their own support system, where they can say whatever's on their mind, and share how they are feeling about cancer being in their family.
Posted by MalcolmS on May 31, 2017 2:49 pm
First diagnosis of my wife's cancer was driven by sudden onset of ascites that had her stomache swell out like 9 months pregnant over just 2 weeks. By the time we had ultrasound - CT - diagnosis, she was hospitalized and in grave danger for a couple weeks, internal fluid buildup everywhere, and social workers/palliative care trying to prep me on how to tell the kids mom is dying.
Maybe it was denial on my part, but we chose to act and talk to the kids like we were going to be fighting the cancer for the next year, rather than focus on the potential of it overcoming her. So while we did take the kids up to see Mom in the hospital every couple of days, usually just for a short visit, and they knew cancer is a big problem, but our focus for the kids was that the doctors are working hard to make her better.
We explained it wasn't contageous, and wasn't something that has 'fault'. The conversation that stands out was explaining that cancer means Mom probably won't live to be 80yrs old, but that we are working with doctors to see how close we are going to be able to get her to 80.
While Mom was in the hospital it was a real challenge to be spending time up at the hospital, get meals prepared, get kids moved around to activities, put the kids to bed, make sure Mom got properly medicated to sleep, and to get my time in on research/education about the whole cancer thing. But we are fortunate to have friends/family around to help and I tried to make sure I would (almost) always get home for the kids' bedtime so we could talk about the day. I tried to be open about whether it was a good day or bad day, and give them some idea of what treatments were happening. But I also was not "completely open" about the situation with them.
We let their teachers know at school what was going on, and they've been great about communicating by email with an occasional update. Watching for things like whether a bombed test at school was due to stress at home, or just due to typical pre-teen issues.
Mom's home now and taking chemo every 2 weeks, so the family is adjusting to the new normal. Since then, our 12yr old has heard me talking to others and picked up on how close Mom was to dying, which was upsetting, but she seems to have avoided long term stressing over it. They know that the chemo is hard for Mom and that it means we can't do very much activity around that weekend, but we still try to create time to take the kids out for some of their activities and interests.
We've had a birthday that was a little hard on Mom as she questions how many she will get to see.
I've stepped away from work for a couple months to focus on supporting her, so the kids have also been a little worried about when I would be going back to work and making some money, as they don't want to be "poor".
In our case, Mom has been continuing to make small steps of improvement. Our 8yr old was impressed that Mom must be better because she came grocery shopping with us (albeit in a wheelchair) for the first time in months.
For the most part the kids have been pretty adaptive and understanding, not overly interested in the details. While we've also tried to find ways to make sure they get some form of regular attention, regular dialogue, and know they are still very much loved.
Posted by Lacey_adminCCS on May 31, 2017 2:58 pm
It's great that you have been able to step away from work for awhile. Has your employer been supportive?
Posted by Addie on May 31, 2017 3:36 pm
When I was able to visit her after my treatment, it was wintertime and I didn't think a toque would twig any curiosity. She looked at me odd and demanded that I remove my hat. I told her that I would rather not, and when she asked further. I simply said that I had been on medication that had caused me to lose my hair, that I was all done now and doing fine. That seemed to be enough for her, and she smiled, dropped the subject, and carried on with another topic.
Posted by MalcolmS on May 31, 2017 4:17 pm
As the spouse/support I'm focused on keeping the rest of the family comfortable, I guess the need for some self-help was why I started looking around for a forum like this.
I'd love to find a spouse/supporter meetup group in the Fraser Valley, something like a once a month coffee/doughnut, sharing/venting kind of thing if anyone knows or is interested.
Posted by changes on Oct 26, 2018 1:29 pm
I am in a situation where I need to prepare to have the tough conversations with my kids. Challenge is that my 2 are 5 (soon to be 6) and 3. The older one is in a kids support group right now to learn about Cancer, but the most recent results were not positive and I want to start preparing them.
Any tips, resources, specialists people could direct me to?
Posted by ACH2015 on Oct 26, 2018 1:41 pm
I don't have children myself, however I did find these resources from the Canadian Cancer Society website with helpful information and suggestions to discuss cancer with children:
I hope this helps
ACH2015 - Andy.
Posted by sflores on Oct 27, 2018 7:26 am
Had surgery and now going for chemo to prevent reoccurence
Our daughters are 9 and 16 years old.
We were honest from the beginning.
Since the age difference, we had to explain differently.
We were encouraged by my surgeon as he said kids can be insiteful.
We also saw the SW for them. They know that they can call her antyime
They know that chemo has side effects and that mommy will be feeling sick but will feel better.
The hard part is answering my youngest question: Will it come back.
My answer is I pray not but if it does, then we will have to fight again.
The eldest is so busy at school and her extra curricular activities and thriving well. Very quiet. I try to get updates from whats going on in her life. She has good group of friends.
The youngest has good group of friends too. She said at one point that I should not be afraid to hug her as cancer is not contagious. I had to explain why mommy just cant hug all the time.
We try to live a normal life and refuse cancer to define our family
Posted by Elsie13 on Oct 27, 2018 3:21 pm