When my doctor told me I needed to fast-track fertility treatments if I wanted to have more children in the future, I was overwhelmed with emotion. I was 33 and suddenly the option of having more children — the spontaneity, the joy of it — wasn’t mine anymore. I didn’t want to tell my partner, who didn’t have any children of his own yet. I felt like I was robbing him of an experience he might have naturally had with someone else, someone who wasn’t going through breast cancer. It made me feel flawed, as though something was wrong with me.
Eventually I did tell my partner, and he was very supportive. He accompanied me to my treatments. But opening up about my diagnosis was hard. In Caribbean culture, especially among the older generation, people tend to be very private about their health. When I found out I had cancer, I wanted to keep the news to myself — even from my partner, family, and friends. But as things progressed, I realized I couldn’t do it alone.
I’d had a lumpectomy years ago, for a benign lump, which I had kept secret. I thought I could do the same this time — have a bit of chemo and downtime and then go back to my regular life and work as a nurse, with no one the wiser. I didn’t want my mother to worry. “Here we go again,” I said to myself. “I can do this.” But this time was different. I didn’t realize how much my treatment would break me down physically. Suddenly, I couldn’t even walk to the bathroom or wash my face on my own. I told my family and they stepped in to help.
My sister was an absolute godsend. She moved in and helped with all the day-to-day stuff — laundry, groceries. But most importantly, she really helped with my 10-year-old daughter. She took her to the movies, did her nails, and took her to her dance lessons and recitals, making sure her life wouldn’t be completely turned upside down.
I had trouble breaking things down and explaining what was going on to my daughter. Kids learn about cancer at school through Terry Fox, so naturally she asked if I was going to die like he did. I couldn’t answer her questions without falling apart, so having my sister there — and also getting my daughter into a children’s support group — was essential.
My treatment — chemo, a mastectomy, radiation, and IV therapy — took everything from me physically, mentally, and emotionally. I felt like cancer had stripped me bare, leaving me with no say, no control, nothing.
And then I was introduced to Look Good Feel Better (LGFB). Honestly, I wasn’t going to go. I was feeling awful and I didn’t want to socialize. I was very closed off and isolated. But I put my fear aside and attended the workshop, and I’m so grateful I did. The air felt so loveable when I got there — so welcoming, inviting, uplifting, and warm. It ended up being the most amazing experience. Everyone was talking and joking around, being so supportive. I didn’t expect to feel beautiful when I walked out. LGFB is like a sisterhood. When I was feeling broken and bare, it lifted me up and helped me to feel loved.
Today, I’m getting used to a new normal. I’ve had to accept that I’m never going to feel the way I did before cancer. But I’ve also realized that it’s okay to lean on others and to find strength in sisterhood.
One question everyone may have as they begin their cancer treatment is ‘what are the side effects of my cancer treatment?’ The truth is, is that, while there are many common side effects from chemo, radiation, immunotherapy and drugs, your treatment experience will be different from anyone else. So, what’s ‘normal’? Your medical team may give you a booklet on what to expect, but the reality is, there is no ‘normal’.
Hair loss, fatigue, constipation, diarrhea, headache, nausea are all common side effects from cancer treatment. But you may also be dealing with loss of balance, strength and coordination. Others experience nerve tingling, “burning” or numbness. It’s also possible that you may not have any of these side effects. Your reaction to your treatment is as individual as your diagnosis itself.
In the past, a good patient was often described as someone who kept questions to a minimum, who followed all the advice that their healthcare professional provided, who didn’t complain or voice their concerns, and didn’t speak out about something they didn’t understand. Over the years, medical professionals have begun to realize that their patients are individuals, with minds of their own and ideas and questions about their own healthcare.
Enter, Dr. Margaret Fitch, a professor at the University of Toronto with a background in nursing and expertise in oncology and the psychosocial and emotional side of cancer. Dr. Fitch identifies the difference between ‘person-centered’ and ‘patient centered’ care. Your care is a partnership. Doctors, nurses and social workers bring knowledge and expertise, but you are the expert on you and your personal experience. Person-centered care calls on medical professionals to listen, work in partnership with you and to better understand what your life is like and to pay close attention to how any suggestions made may impact you.
Dr. Fitch offers some important take aways to help you in your efforts to ensure your care is ‘person-centered’.
Embrace Your Right to Ask Questions: It’s crucial to remember that you have the right to ask questions about your care and treatment. Even if it’s difficult to speak up, your health and well-being are paramount. Take time at home to write down your questions when you’re relaxed, and bring them to your appointments. Don’t hesitate to be firm and confident in asking for the information you need.
Utilize All Available Resources: While your time with your physician is limited, don’t hesitate to ask a nurse or another healthcare professional for additional support. Healthcare teams often work together, and they can help ensure that your concerns are addressed. It’s okay to use multiple strategies to get the information and support you need.
Understand That “Normal” Doesn’t Mean “Okay”: If you’re told that certain side effects or feelings are normal, it’s important to recognize that this doesn’t mean you have to accept them without support. There is help available, and you don’t have to navigate these challenges alone. Speak up about what you’re experiencing and ask about the resources and services that can provide relief.
Recognize the Uniqueness of Your Experience: Cancer is not just one disease, but many, each with its own treatments and side effects. What you go through may be completely different from someone else’s experience, even if the diagnosis sounds similar. Don’t feel pressured to compare your journey to others; instead, focus on what you need and seek out the right support for your specific situation.
Explore Your Options: The treatment and support options available to you are diverse. Whether it’s joining a group, seeking one-on-one counseling, or trying different therapies, it’s essential to find what works best for you. Don’t be afraid to explore different approaches until you find the one that feels right.
Stay Informed About New Treatments: Medical advancements, like targeted therapies, are constantly evolving. These treatments can be more precise and may reduce some of the more challenging side effects associated with traditional chemotherapy. Keep the conversation open with your healthcare team about new options that may be available to you.
Value Your Individuality: Remember, your journey is uniquely yours. While it’s helpful to hear others’ experiences, what works for someone else may not be the best fit for you. Trust in your instincts, ask for the information you need, and choose the path that feels most supportive to your individual needs and circumstances.
In Episode 2 of “Facing Cancer Together,” you will hear from several women undergoing treatment, each with their own unique version of ‘normal.’ Additionally, Dr. Fitch delves into the concept of ‘person-centered care,’ offering deeper insights into this compassionate approach to treatment. Tune in for a compelling discussion that highlights the diverse experiences of these women, the importance of personalized care and how you can advocate for yourself during your own cancer journey.
I’d already survived a life-changing event when I was just 16 years old. It was the first day of summer. I was fresh out of grade 10 and excited to be doing my very first parachute jump. But the parachute didn’t open, and I plummeted 3,000 feet to the ground. The impact left me with a spinal cord injury, and I’ve used a wheelchair ever since.
I was able to move on with my life I went back to school and got a university education. I got married and had a daughter, who’s in her 30s now. I had a fulfilling career as a French immersion teacher. I also got very involved in wheelchair sports, from curling to hand cycling. My life was moving forward in a positive, productive way.
I thought that surely my spinal cord injury was the biggest challenge that life would throw my way. Cancer had never been on my radar. I was feeling great. When I discovered the lump, I didn’t panic. I’d been getting regular mammograms with nothing showing up. But when the nurse called and said, “There’s a 97.5% chance it’s malignant,” everything changed. It felt like the world had shifted beneath me once again, just like that day in 1981 when my parachute failed.
My breast cancer diagnosis was shocking. It was an aggressive cancer with all these names I’d never heard before: ER-positive, PR-positive, and HER2-negative. I had no idea there were so many forms of breast cancer. And it felt extremely unfair. I had already been dealing with a spinal cord injury for most of my life – wasn’t that enough? Hadn’t I experienced enough traumatic moments? I was also initially very concerned that I was not going to survive, as I’d watched my mother die of cancer. I was devastated.
My spinal cord injury changed my life, but cancer was even worse. It wasn’t just physically brutal – it caused an immense emotional toll, invading all aspects of my life and leaving me constantly on edge, with the steady fear of recurrence looming over me. And navigating the complexities of cancer care treatment was especially challenging because of my spinal cord injury. For example, the chemo table was too high for me to get up onto on my own. I had to lobby the hospital for better accessibility.
In the past year, I’ve gone through a lumpectomy, what felt like endless chemotherapy, radiation, and ongoing hormone therapy. I’ve gone from having long blond hair to short grey hair with chemo curls. I still don’t recognize myself when I look in the mirror. It’s like I’m a different person now, in many ways.
Amid the whirlwind of treatments and fear, finding support became essential. Having an organization like Look Good Feel Better (LFGB) was so helpful. Peer support is one of the big methodologies used to help people with spinal cord injuries. You can have a doctor explain about the injury and physiotherapy and occupational therapy, but peer support – meeting someone else living with the same condition – is often far more valuable. It was the same with having cancer. When I got my cancer diagnosis, I didn’t have any friends or colleagues who were going through it. I didn’t feel like there was much of a community or people I could speak with. No one in my family had had this diagnosis or any type of cancer treatment. I found that sense of peer support from LGFB’s workshops – peers getting together, and volunteers who are well-versed in cancer treatment. For me, the more I can meet others going through similar circumstances, the easier it is to go through the experience. I’m not alone. I’m part of a shockingly large community of women dealing with the same thing. This is an additional piece to the recovery process.
Other things that have helped in my recovery and my holistic approach to treatment are taking care of my appearance, staying active in my communities, and travelling. I’m aware of my mortality in a new way now. I no longer put things off. Cancer has taught me to live each day with intention and gratitude, embracing each moment to the fullest.
When I think back to having cancer and going through treatment, a lot of it is a blur. It was almost like a four-month-long out-of-body experience. I was 15 and in grade 10 when I was diagnosed. I was in the culinary arts program at my school in Toronto, which I had wanted to do forever. And so much was already going on in my life. It was a tough year. My dog had recently died, which was really hard for my family, and my grandmother had also had a cancer scare. And, things were hard at school. I’d met someone who turned out to not be a very nice friend, so I stopped hanging out with him and then I found out a few months later that he’d been writing mean stuff about me online. And then he started threatening me and following me around school. He was friends with a lot of my friends and it was hard to get away from him. And I had also just parted ways with my entire friend group, because they were just not nice friends. One of them even told me she had hated me from the moment she met me. That was hard. I’d dealt with a lot that year, and so getting cancer just kind of felt like an extra bonus. It was the cherry on top of some terrible sundae.
Suddenly I was spending pretty much every single day, hours and hours of the day, in doctors’ offices trying to figure everything out. I started failing most of my classes at school because cancer was suddenly taking up most of my time.
I got through it, though. My school supported me with my class work when they heard what was going on. I was able to make some great new friends who were kind and supportive. And I got through my treatment.
Chemo was hard but it wasn’t as bad as movies would make it seem. In some ways it’s true that chemo can be very intense, but it wasn’t as scary as I thought it was going to be. My surgery went really well. Heading into it, my parents were super nervous, but I was just like, “OK cool, I’ll see you guys later!”
My hair did fall out, which was not fun. I had really long curly hair, and I was sad to lose it. And I had a lot of skin problems – sore skin, chemo blisters that turned dark purple on my feet, a lot of sensitivity in my hands, and red marks on my shoulders. Doing a Look Good Feel Better workshop helped me feel a lot better. I loved not just playing with makeup – I love getting to express myself in that way – but also getting to meet other people who had cancer. They told me about their experiences, which was really helpful for me. It made me feel less alone.
That’s all behind me now, and I get to focus on being a teenager and doing what I love. I still enjoy being creative in the kitchen. Baking is my favourite. I’m really good at making chocolate cake – I think I’ve perfected it. I also like to crochet, embroider, sew, and do crafts. I’m glad that this is my life again, and that cancer is in my past.