Diagnosed with breast cancer at 37, a Stittsville woman shares how readers can help those in the fight of their lives
Jennifer Van Dusen lost her mother to breast cancer in December 2009. Six years later, with her husband and best friend by her side, she was diagnosed with Stage 0 breast cancer – ductal carcinoma in-situ. After watching her mother battle breast cancer for 3 years and dying from it, Van Dusen, then 37, knew she wanted a double mastectomy.
The Stittsville resident feels she was an important advocate for her own health, “because I was having a double mastectomy, my surgeon agreed to do a sentinel lymph node biopsy, which he didn’t feel was really necessary because my needle biopsy was Stage 0 cancer. I’m glad I pushed for it though, because after my double mastectomy and sentinel biopsy, we met with my surgeon again for a full pathology and it was found that I had cancer in one of the nodes biopsied.” Van Dusen needed not just a mastectomy but also radiation – as soon as possible.
As she describes, diagnosis and treatment left her feeling broken – “emotionally, physically, mentally.”
“I was angry at having to leave a job and a life I was loving and enjoying to deal with this. I was an active… young woman who was now a slave to her body and appointments and treatments.”
Now 41, Van Dusen credits her husband, Jamie, 45, (with whom she shares a stepdaughter, Kayla Lynn, 25) with being an amazing support system as he had been for her mother.
“My husband was the one to take my mom to all her chemotherapy appointments… and now six to seven years later, he had to do it again with me. But he was amazing. I feel like my heart will explode when I think back to how loving, supportive, kind, compassionate and strong he was.
“He had to help me do everything after my mastectomy – sit up, bathe, dry my hair – he did it all with such kindness… He didn’t coddle me when I would cry from lack of any energy, while my body was burnt and blistering, and all I wanted to do was skip a radiation treatment.”
However, she has had some negative experiences from well-meaning folks. She cautions for care and thoughtfulness when giving compliments or sharing stories.
Van Dusen says, “I look like a healthy woman but I am not, and living in a world where you are judged by what people plainly see with their eyes is very hard.” She says she wants to scream at the top of her lungs when asked if she’s “back to normal again.”
Telling someone they “look great” isn’t necessarily helpful. As Van Dusen explains, “That’s nice and all, but it doesn’t help when you literally feel like you’re dying.”
An instinct for many is to ask, “Is there anything I can do?”
Van Dusen recounts the story of bumping into an acquaintance during one of her first outings with her husband after her mastectomy and the person asked.
She answered, “food would be great, a casserole would help a lot.” The person looked shocked, Van Dusen remembers. “I was like, no. I’m in the middle of a literal crisis of health, you offered and I answered.
“Don’t ask or offer if you can’t deliver,” says Van Dusen.
Though she’s has some hard experiences in her interactions with others, Van Dusen says not to be afraid to speak up and ask questions.
“I’d much rather someone ask me…I’m not forced to answer if I don’t want to. There is nothing rude with wanting to understand, as there is nothing rude about saying, “I don’t feel comfortable discussing that.
“I will always appreciate compassion and a willingness to understand.”
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“We hear frequently that marriage is 50/50 but that’s not true, a good, strong, true marriage is ever-changing and for us, was certainly 90/10 when I was sick.” – Jennifer Van Dusen
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How to help
Melina Ladouceur, a cancer coach with the Ottawa Regional Cancer Foundation, provides some tips that may be helpful for the family members and friends of someone who is living with cancer.
- Reflect on an experience that was positive where someone offered you support. What was good about it? What did the person do that really stood out to you? This can help you in showing up for someone else going through something difficult.
- Here are some of the key ingredients needed to truly show up for someone: empathy, compassion, kindness, warmth, courage, care, thoughtfulness, respect and self-awareness. It takes a whole lot of courage when we are feeling unsure on what to say or do to reach out to someone and say “I’m here, I’m thinking of you, I’m not sure what to say, but I just want you to know that I care about you.” It also is essential to be aware of how you are feeling and what is your experience and what is theirs. Sharing stories of other people you know who have cancer can actually have a negative impact on the individual. We all want to try to show people that we understand however by sharing those stories it is putting the focus on someone else and not on the individual who is going through this right now. Especially stories that have a bad ending are worth keeping to yourself.
- Some of the best things you can do is be honest that you care, that you’re thinking of them, that you can only imagine how difficult this must be for them. A thoughtful gesture can go a long way: bringing them meals, offering rides to the hospital, buying them a nice journal or warm fluffy socks. The little things count and they say a lot more than words can sometimes.
- Check in with them. Let them know you’re thinking of them. Don’t just reach out once when they are newly diagnosed. Cancer is an experience that continues for a while and it’s important to understand that it still impacts people and their lives after the treatment is over
- Learn more about what empathy really means. Empathy fuels connection. Sympathy drives disconnection. Look up Dr. Brene Brown’s video “Empathy VS sympathy” to know more.
- It’s best to avoid saying “At least…”, “You’ll be just fine”, or “Just think positively” since this could make them feel that their emotions and concerns are not heard or understood.
- Take a look at Lori Hope’s book “Help me live: 20 things people with cancer want you to know”
- Sign up for cancer coaching. Cancer coaches are accredited healthcare professionals with a background in oncology, such as nurses and social workers. People living with cancer and their caregivers can access individual cancer coaching services at no cost. This provides you with valuable time with a health care professional who can help you and your loved ones to focus on the things that matter to you, for example, preparing questions for their first appointment with an oncologist, preparing a plan on how to tell your kids, help in managing stress, anxiety and side effects from treatment, guidance and support for caregivers to help you feel more empowered and confident on how to support a loved one facing cancer, and so much more.
- For more information or to register for cancer coaching, visit ottawacancer.ca.