Living With Metastatic Breast Cancer: Finding Hope, Support, and Community

What has your experience been like in finding hope, support and community after your metastatic diagnosis?

Things that continually help me to find hope are:

• my family
• meditation and mindfulness practice, which help me to stay present and not get carried away with worries or anxiety
• connecting with others who are on a similar path
• getting tools to help me deal with the stress – exercise, naturopathic treatments, going to a counselor to talk
• being in nature
• self care and respecting where I am at day to day

What are some of the barriers to finding your path?

My needs change from week to week and month to month. I have always been a planner and still plan, but part of me naturally wonders how many of my plans or goals will need to change and I need to be open to that fact – open to living with uncertainty.

Some basic barriers are that I can get really tired and need to rest, my brain gets foggy, or I get anxious. I need to take really good care of myself and sometimes that means not doing all the things I would like to be doing. I need to be selective and sometimes that is hard.

Tell us about the people who are in your community.

My community is a real mixture of people. My friends outside the cancer world, as well as my family, are the biggest part of my community – they were there before diagnosis and they continue to be now. My children and my husband are my rocks  and my sunshine.

I have also become friends with many young women who have completed treatment for early stage cancer as well as women who have metastatic cancer.

I find that I feel different every day, or rather there are many sides to how I feel about living with metastatic breast cancer. Having a varied community helps to meet my needs different ways. I am trying to find a balance between being in the cancer world but also in my regular non-cancer world.

My oncology team is also part of my community, in a different way. They are the people I deal with on a regular basis for all my medical concerns. Since I hope to be around for a long, long time I need a medical community of doctors that I feel comfortable with and believe in. I am lucky to have a fantastic team and their knowledge and helpful attitude helps me through as well.

What does Stretch Heal Grow (your wellness retreat for young women with breast cancer) mean to you?

Stretch Heal Grow came from the idea that I wanted to help other women who were going through the same thing I had gone through. I had early stage breast cancer and was finishing treatment, wondering what life would be like after treatment. I was feeling like I really needed to connect with others but was never someone who felt comfortable in a traditional group therapy setting.

I wanted to use the tools that helped me through diagnosis and treatment as a way to bring other women together with a focus on wellness and self care. I had a feeling there would be other women out there interested in the same experience. So I created what I thought an ideal weekend retreat would be with the wellness tools that I feel really strongly about.

When I was diagnosed with mets, it really threw me, and for a while I wasn’t sure how to move forward with the retreat.

After lots of thinking, meditating and self-reflection I realized that I was still really passionate about it–almost even more so. Living with metastatic disease adds another entire level to this experience; it is very different than living with early stage. There is more pain, discomfort, fatigue and anxiety. All those reasons made me seek out self care even more. It became more than a nice thing to do for myself; it became essential to being able to live with a chronic condition. For me, meditation has been an incredible way to connect with my emotions, my energy, my thoughts and also to find calm in the storm.

With Stretch Heal Grow, I am trying to create an experience for women where they can come and get in touch with themselves, learn some ways to help themselves through the physical and mental up and downs of cancer, as well as connect with other women who understand it all. It ties together the importance of physical and mental self care through spending time in nature, yoga, meditation/mindfulness and being in community where you are understood.

What does support look like when it works?

It is there when you need it, without judgment or conditions. It understands that sometimes you feel great and ready to take on the world and sometimes you don’t and that that is okay. Support helps you connect with yourself, to find strength for the bad stuff and happiness with the good stuff. Support helps you feel understood.

What else do you want people to know?

Living with metastatic breast cancer is not easy, but it is possible. My feeling about it changes depending on how I am feeling that day but I have learned over the past year and half to be patient with myself and patient with my body. When I was first diagnosed there was a lot of anger and fear. I still have times where I feel that, of course, but I have taken a much softer, more loving approach with myself. Life is too short to not be caring and compassionate to yourself and to those around you who are on this path with you.

Pain, suffering and sadness are all a part of living with mets, but they are not the only part of living with mets. For me there is also so much love, enjoyment of life, pleasure, fun, peacefulness and potential to still do and experience so much in the time that I have. I think this is a universal thing – not just a metastatic cancer thing. But of course when you have cancer, it is all heightened and so you are face-to-face with it a lot more.

Surround yourself with people and experiences that bring you happiness, even just from small things. Do things that make you happy. Try new things, enjoy the feeling of doing your longtime favourite things, even if you can’t do them in the exact same way you used to. Be good to yourself.