How did you tell your kids about the cancer diagnosis?
Stage by stage: chemo: “I have cancer in my breast and need to take medicine to make the cancer go away. The medicine is called chemo.” “I’ll go to the doctor a lot and might get tired. You’ll still go to school everyday. We’ll have dinner together every night….” surgery: “My doctor is going to take the cancer away in a surgery. When I come home, I’ll be sore and have boo-boos.” We practiced ways we could hug and snuggle that wouldn’t involve my chest – hand hugs, leg hugs, finger hugs. radiation: “I have to go to radiation every day. Radiation is a lot like having an x-ray. Remember when you had an x-ray after….”
How did your kids respond?
My kids were young enough that they didn’t associate cancer with death. They took it in stride and asked many questions along the way. We answered them all honestly. Sometimes they complained that I didn’t always go to swim class with them or other things that they were used to. Sometimes they worried about me, tried to take care of me by getting blankets or food for me. Mostly, they just went about their normal routines.
I think that surgery was the hardest for them. At diagnosis, I had just stopped nursing my 2 year old. He was still quite attached to my breasts. When I showed the kids my scars, he said “no more babies can drink from there anymore. I don’t like it!” They have gotten used to my flat chest and scars now. My oldest even asked why all the mannequins at Victoria’s Secret have breasts. “Not all ladies have breasts!”
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
honesty. I think my kids would have been more scared if they sensed things were different but didn’t know why. We also kept their daycare providers in the loop. We told them the exact language we were using to describe what was happening to me so they could use it too.
Is there anything you wish you’d done differently?
In terms of the kids? No.
How did the impact of cancer change as time passed, and your children grew? Did it change?
My kids still talk about it some. They play “cancer.” One kid pretends to have cancer while the other pretends to be a friend bringing over food. They take care of each other and say things like, “I’m sorry you have cancer. Would you like a leg hug?” Occasionally, something dramatic happens. My oldest recently had a nightmare about a witch plucking out all of my eyebrows and eyelashes. Clearly, it has had an impact. We just keep talking about it.
Do you have concerns about the long term impact of your cancer on your children?
Yes. Long term, I worry about a recurrence, about dying, about leaving my husband with 2 boys to raise on his own. I hope though, that this was just another experience among many in their childhoods. It will, no doubt, impact them. I don’t want it to dominate them though.
What advice would you give to other moms who are diagnosed with cancer?
Tell your kids, talk about it, don’t hide it. Secrecy causes more fear.
What concerns or fears troubled you the most?
that my biological son will get cancer
How did you deal with those fears?
deep breaths, reality checks
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
We were already fostering our oldest at diagnosis. We have since adopted him. The process was a little more difficult because of cancer.
What did you do to take care of you? How did you splurge on yourself?
regular spa visits, acupuncture, many dates with friends and hubby for movies or tea, parties
Were you able to get help from friends and family members while you were going through treatment?
Yes. I practically demanded it. The day I was diagnosed I emailed about 100 people. I told them what was happening and that I would need them. My friends then set up committees and divided duties into categories: food, childcare, chemo buddies/medical appts, housekeeping. We used Lots of Helping Hands to keep everything organized. When I needed something, I just contacted the key person for the appropriate category and it materialized.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
No. I knew that if I didn’t ask for help all of the burden would fall on my husband and mother.
Did you have an online resource that helped you through this experience?
Today’s guest contributor is Sonya Davis. Sonya writes about her experience as a breast cancer survivor, and as the child of a breast cancer survivor.
Photos courtesy of Sonya Davis.
In some ways I think I’m lucky. I have a strong family history of cancer – on both sides of my family. I am the youngest person in my family to be diagnosed and the first of my generation of cousins, but the idea of cancer is not new to my family. My own mother was told that with her personal history, my sister and I had a 50/50 chance of getting cancer at some point in our life. I’m hoping that I took the bullett for my sister. While the diagnosis was shocking and disturbing, I can’t say it was surprising. And while the diagosis wasn”t surprising, there were some surprises I want to share.
Surprise 1 – The bills
I knew cancer was expensive, but I had no idea of the financial tail spin the bills would send me in to. It frustrates me to no end that I’m still making payments, 3 years after diagnosis. And I have fairly decent health insurance. I have no idea how people who don’t have insurance do it. After treatment, all you want to do is move on with your life, but that is pretty hard to do when you keep getting bills.
Surprise 2 – How much stronger I am now
Some tmes I look at things I do now and think “wow, i never would have done that 3 years ago”. The first time I realized this was the first time I danced in public without being under the influence of large quantities of alchol. And you know what? It feels great. I love the confidence and strength I now see in myself. I also love that I no longer sweat the small stuff like I used to.
Surprise 3 – the doctor visits never seem to end
Every time I turn around, it seems like I have another doctor appointment. It’s all for little stuff that always seems to turn out fine, but you never know. And then there is the question “Which doctor do I ask?” Fortunatly, both my oncologist and my primary care doctor always take me seriously, but I am getting tired of always having a question.
Three years out from diagnosis, this is where I’m at. This is me and all I can do is keep myself moving forward.
A child’s perspective of a parent’s cancer
One common theme I often hear from parents who have been diagnosed with cancer is they are worried about their kids. I don’t have kids, am not an expert on kids, but do have one thing in common with the kids – my mom was diagnosed with cancer when I was still a kid. And I always have one thing I want to share with parents: I’m ok. And your kids will be too.
Honestly, I don’t remember much about my mom’s cancer experience. I don’t know if it is because I shut it out or because I was wrapped up in my teenage self, like any normal 16-year-old. Probably the latter. I do know I was upset. I remember having to leave the house because my sister was playing “the wind beneath my wings” on the piano and I couldn’t listen to it. I remember my aunt pulling out her prosthesis to show me what it looked like. I remember when and why she decided not to do chemo. It’s part of my history, but it did not define who I am.
Were it not for my mom’s history, I probably wouldn’t have caught my own cancer when I did. I was not afraid I’d get cancer, but I was aware I could. Cancer did not occupy my thoughts the way it does now – I knew enough to be aware it could happen, but it was an after thought.
I very much hope that you ever have to hear that your child has cancer, but if you do know that your child’s journey will be different than yours, but you can provide support like no other. My mom never expects me to just move on. She understands the day to day fears. She never makes me feel like i’m over reacting. She encourages me to take my fears seriously and get things checked out. She’s my biggest support. She’s my hero.
Type of Cancer: Breast cancer – poorly differentiated invasive ductile
carcinoma. stage I category III
Stage at Diagnosis: Stage 1
Treatment Plan: Bilateral mastectomy with reconstruction, Chemo 20
weeks followed by 42 add’l weeks with herceptin every 3 weeks
How did you tell your kids about the cancer diagnosis?
Explained that we have millions of cells in our bodies and that sometimes some of them go bad. When they stick together they create a tumor. That tumor is cancer. Docs don’t know how we get cancer but they know how to get rid of it. Told them it’s no one’s fault and that it wasn’t contagious. Asked them what questions they had, and we’ve been talking regularly (not scheduled).
How did your kids respond?
11 year old twins. Son had several spot on questions (How do you know it’s even there?) and my daughter shut down. Couldn’t stop crying but wouldn’t talk. I told her that when she wanted to ask anything that I’d answer as best as I could. I told her I loved her. By the end of the day she was her normal self.
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
I’m divorced but asked my ex to be there to tell the kids. That was a big support mechanism in the sense of “we’re fighting this as a family.” Humor works really well with my kids. It opens them up. Eg, at dinner, daughter asks, “Dad, can I have another chicken breast?” shortly after my surgery. Then she turned to me and said, “Sorry, mom.” And I said, “That’s ok. I’ll have two!” Laughter all around.
Do you have concerns about the long term impact of your cancer on your children?
I do. This is a lot for them to withstand, but if I make it through, which I fully intend, they will have matured in a hard but positive way.
What advice would you give to other parents who are diagnosed with cancer?
Be as straight as you can to you kids in the conversation. Tell them what you know them capable of handling. Line up support and tell them you all have backup whenever you need it. Make sure their lives go on as normally as possible through treatment. Don’t let them skip ballet or a music lesson. And tell them as much as they can stand to hear it that you love them.
What concerns or fears troubled you the most?
How my kids would react. And chemo without a partner to help me, and the need to protect my kids from the hard stuff.
How did you deal with those fears?
I continue to see a therapist weekly. Hugely helpful.
Have those fears and concerns changed over time?
Still working on it
What was your darkest moment?
Haven’t had it yet. If I did, it must not have been that bad.
Did you have an online resource that helped you through this experience?
Type of Cancer: Breast cancer – DCIS with microinvasion
Stage at Diagnosis: Stage 1
Treatment Plan: Bilateral mastectomy
Current Status: cancer-free (I pray)!
How did you tell your kids about the cancer diagnosis?
Shared very limited details but just told them that mommy would have a surgery to get rid of some disease growing inside my body. My baby was only 3 months old.
How did your kids respond?
They didn’t seem to care but were VERY good at giving gentle hugs after surgery.
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
Lots of outside support.
Is there anything you wish you’d done differently?
Nope
How did the impact of cancer change as time passed, and your children grew? Did it change?
they don’t really know much still.
Do you have concerns about the long term impact of your cancer on your children?
Yes. I’m most concerned for my daughter and how she’ll associate her own body when looking at mine. She’ll understand when she’s older
What advice would you give to other moms who are diagnosed with cancer?
Take time, breathe, and find ways to smile and laugh.
What concerns or fears troubled you the most?
recurrence
How did you deal with those fears?
Deal every day. It’s a very scary world.
Have those fears and concerns changed over time?
No
What was your darkest moment?
No super dark moments per se.
What was your best moment?
Post surgery to find out that no nodes were involved.
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
No more children were planned but had nothing to do with cancer. We wanted 3 and we have them. I’m grateful.
What did you do to take care of you? How did you splurge on yourself?
I’m not sure I have.
Were you able to get help from friends and family members while you were going through treatment?
Yes. A lot. I am surrounded by amazing people.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
People will offer. When they do, say yes. And be sure to pay it forward.
Did you have an online resource that helped you through this experience?
YSC! While I’m not very active in the group, reading the site and the FB page is a huge, huge help.
Did cancer/treatment impact your relationship with your spouse/partner?
Not in a huge way.
Do you have any relationship advice for young moms dealing with cancer?
Laugh. Remember to connect with each other. Laugh some more.
What is something you wish your friends and family members understood about your cancer and its impact on your life? What would you tell the friends and family members of other mom’s diagnosed with cancer? What would you want them to know about what she’s about to go through, and how best they can support her?
Recurrence is a real fear and something that comes up a lot. Help to keep me smiling and laughing and I’ll do the same for you!
Were there any cancer-related activities or events in which you participated that you think were especially helpful to you or members of your family?
No.. not really. I do Race for the Cure each year. It’s taken on a new meaning.
Type of Cancer: Breast cancer – Right Breast Metaplastic
Carcinoma with transitions to spindle cells.
stage at diagnosis: Stage 1
Treatment Plan: Lumpectomy, chemotherapy and radiation
Current Status: Cancer Free!!!!
How did you tell your kids about the cancer diagnosis?
Because my husband’s grandmother of cancer had died just 2 months prior, and my son had a difficult time with her death, we were very reluctant to tell him I had ‘cancer’ at first. We initially told him that Mommy had some very bad germs in her ‘chi chi’ and (because originally I was told I needed to have a mastectomy) we told him that the doctor was going to have to remove my ‘chi chi’ to get rid of the germs. That changed and I had lumpectomy instead.
We told him that Mommy needed to take some strong medicine that was going to make her very sick and tired, but through it all, no matter what, I still loved him. I was going to need lots of help taking care of him, and that I needed him to help take care of me sometimes. We also shared a book with him called ‘Mommy has cancer’.
How did your kids respond?
My son is very empathetic. He was very in tune with my emotions and could sense when I was sad or sick and would hug and love on me. He did at first check inside of my shirt to see if my breasts were still there. We tried to not tell him ever that mommy might die, so as not to worry him about that. But, we did want him to understand the seriousness and that I would be very sick.
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
My parents went through a divorce at the time of my treatment, so my mother came to live with me. It was wonderful to have another adult in the house to help with the burdens of keeping house and taking care of a toddler. I realize not everyone has this option, but essentially, I think we need to ask for help and allow people to help. We have to be a little selfish and take care of ourselves. If we don’t take care of our own health and mental well being, we are not able to be there wholly for our children. I did one thing that I am so glad I did. I had photographs taken of my son kissing my bald head. It is a physical reminder for us all to cherish every day. I also feel that it was a lesson to my son (and myself) that we are not our appearances. We shouldn’t judge people by the way they look because you don’t know what they are enduring.
Is there anything you wish you’d done differently?
I have no regrets about my journey with cancer, ultimately it has been a tremendous blessing in my life. It taught me a lifetime of lessons of faith, strength and love.
How did the impact of cancer change as time passed, and your children grew? Did it change?
I am well now, and have been blessed with another child. However, my son who was 3 when I was diagnosed is now 10. He does ask questions and seems concerned whenever I go to the doctor or have routine scans or mammograms. I try not to worry him, but ask him to pray for me. Cancer allowed faith into our family. God had not been a part of our daily lives, in fact I avoided the mention of ‘God’ at all cost before cancer. I didn’t want my son to have such ‘fairy tales’ shoved down his throat. But, cancer was a pathway to Christ for our family. It has changed the way I parent, and the wife that I am. And, has allowed us all to examine the purpose in our lives.
Do you have concerns about the long term impact of your cancer on your children?
Yes. I guess I feel SLIGHTLY less concerned in that I have male children. I realize they do have an increased risk for breast cancer, but I also worry about their overall cancer risk.
What advice would you give to other moms who are diagnosed with cancer?
Have faith, take care of yourself, allow others to help you. Let go of the idea of the perfect house and perfect parenting. You can only be a parent if you are alive to do it…so take care of your health. Find people you trust, whether through churches or schools whom you trust to help you take care of your children when you aren’t well enough. Be honest with your children, but try not to burden them with adult worries.
What concerns or fears troubled you the most?
At first, I was so worried about what my son would do without a mother, and that I would financially devastate my family. I was worried that my husband would have problems with my new body.
How did you deal with those fears?
Ultimately, I found a faith that allowed me to lay those problems at the feet of Jesus. It allowed me freedom from many of those worries and a focus on getting well. My husband was very supportive and my worries became unfounded. Friends blessed me by having benefits in my honor to help with the financial burdens.
Have those fears and concerns changed over time?
Yes. I now have another baby. I worry that something will happen to my husband and that I will fall ill and my children will be left without parents.
What was your darkest moment?
My darkest moment was the day I was diagnosed. I had suffered a miscarriage 2 1/2 months prior. My primary focus was having another child. When the surgeon told me I had cancer and I asked her if I would ever have another baby, she hesitated and said, ‘not for a very long time.’ I asked her if I was going to die, she told me not if we treated this very quickly and aggressively.
That day, my friends came over. I felt like I was numb, and that the world was happening around me while I was stuck in a nightmare. People were crying and cleaning my house around me. I felt like I was at my own wake.
What was your best moment?
Easy…accepting the Lord, Jesus Christ as my savior. Calling on him in my most desperate time to heal me, to take my cancer, my fear and my anxiety. And he responded with an inexplicable peace.
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
No one highly recommended that I have more children, although my cancer was hormone negative. I did look into freezing eggs before I started treatment, but ultimately decided we couldn’t afford it. I did look into some clinical studies and found that taking Zoladex, even though I was triple negative, was found to preserve ovarian function in most women under 40. So, after being refused the zoladex by my oncologist, I sought the help of my gynecologist who did give me the zoladex treatments. It put me into menopause for the time of my treatment. 2 months after stopping the Zoladex, my cycles returned. And after about 3 years, my husband and I stopped trying to avoid pregnancy. I became pregnant 4 years after my diagnosis.
What did you do to take care of you? How did you splurge on yourself?
Baths and naps. I bought myself scarfs and wigs (although rarely wore them) and also, relatives sent me money to do what I wanted with them, so I treated myself to some comfortable pajamas.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
You just have to suck up your pride, and take people up on their offers to help. People feel out of control quite often, but want to do something. I usually just asked people to pray for me, or to just visit with me.
Did you have an online resource that helped you through this experience?
Did cancer/treatment impact your relationship with your spouse/partner?
Yes, it taught us to prioritize our lives. It made us closer and tighter and stronger and put us on the same page spiritually. I felt very guilty at the beginning. I kept apologizing to my husband that he didn’t sign up for the one boobed bald headed wife. But, he loves me and that shone through.
Do you have any relationship advice for young moms dealing with cancer?
Be honest about your feelings, and allow your spouse to be honest about theirs. This is difficult for all of us and they are going through it too. I often felt like it was harder for my husband, because at least I felt like I was doing something about it. He just had to stand by…he felt that he had to hide his emotions and fear and be the rock for me.
What is something you wish your friends and family members understood about your cancer and its impact on your life? What would you tell the friends and family members of other mom’s diagnosed with cancer? What would you want them to know about what she’s about to go through, and how best they can support her?
I wish the people would not send me information that suggests that I might have caused my cancer by some behavior. I wish that people would understand that stress causes a breeding ground for cancer and that I don’t want to deal with other people’s drama. I would tell other friends and family to help…out of love, not control, to not tell the patient that it’s all in their mind. I would tell them to pray for and with the person suffering and remind them how much they are loved. I would tell them that no matter how many people there are supporting them, the patient often feels alone, and that no one truly understands what they are going through. Allow them that feeling, but remind them that you are there for them if they need to talk. Allow them to complain. It sucks, it’s sickening, it’s painful at times, its terrifying. Don’t try to rob them of their right to their fears and pain. Don’t tell them about everyone you know who died of cancer. Don’t pretend to know everything about their cancer.
Were there any cancer-related activities or events in which you participated that you think were especially helpful to you or members of your family?
Reach to recovery was helpful initially, but really just building one on one relationships with other YOUNG survivors and really making connections with other women with same concerns. I began speaking at events, such as Making Strides Against Breast Cancer also sharing at churches and with other people in waiting rooms etc.
What are some solutions you found to practical problems of combining cancer treatment with raising young children?
I was blessed with an incredible support system. The problems I had were more my own. I had to learn to accept ‘good enough’. I had to learn to sometimes put myself first, and allow my husband to just be a father the way he wanted to…to be the primary care taker. It was also very important to me that I did not promise my son that I would not die, as that was a possibility. What I wanted him to know was that I would love him no matter what. So, I started telling him that ‘I love you all the time.’ I told him I loved him no matter where I was, or where he was, no matter what the time of day, whether we were young or old, or whether he could see me or not.
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