Over the last few months I have decided to participate in some breast cancer support group activities – something I haven’t done since I was diagnosed over a year a go. In fact, it was on my one year cancerversary that I set off with my best friend to a yoga retreat specifically for young women with metastatic breast cancer.
I was scared shitless – I had yet to meet someone my age with breast cancer let alone metastatic. I didn’t know how I would feel to be surrounded by others in a similar situation, but I thought it was time for me to try something like this out.
The weekend was titled Stretch Heal Grow and was started by this amazing woman who is living with stage 4 breast cancer. Rethink Breast Cancer put on the weekend. It took place at the Trillium Resort and Spa in Muskoka – the scenery was stunning and the accommodations were wonderful. The food was great and the yoga was so relaxing. The weekend was a perfect combination of planned yoga and circle time along with free time to enjoy the spa and the brisk outdoors – I really felt relaxed and rested.
However, it was hard to see these other young women living with this disease, along with their caregiver for the weekend, who too are dealing with cancer, only in a different way. I left there feeling relaxed but sad. Sad that there are too many of us in the same boat.
This yoga retreat was like the perfect pitch – I swung and made contact, but it went foul. I wanted to hit it out of the park, but the sadness I felt on the way home made the count 0 – 1. Strike 1!
The following weekend I attended the Young Survival Coalition in Houston. This is a US organization dedicated to young women living with breast cancer – no matter what stage. At registration you picked up a lanyard to represent your breast cancer story (newly diagnosed, 5 year survivor, 10 year survivor, metastatic, etc.). I picked up the maroon lanyard which represents metastatic and soon began seeing other young women with the same coloured lanyard.
As I was on my own, I joined a table at the opening session where two other women had a maroon lanyard. They were lovely and as we began chatting the conversation seemed to go how all conversations go when you meet someone else with metastatic breast cancer:
Is this a recurrence?
Where are your mets (meaning where has your cancer spread to)?
How long since you were diagnosed as stage 4?
The last question is the one that I always hang onto – I want to hear numbers like 5, 10, 15, 20, however I find 5 years is not uncommon, but 10 is shocking to hear. This is hard data to digest. I always think what age that would put me at, but what I find hardest is thinking how old Taylor would be – always leaving him way to young to lose his mommy.
I did however attend one session where the oncologist presenting said that women with metastatic breast cancer can live decades – it almost made the weekend worth it. However, sessions like ‘Leaving a Legacy’ do not give me the warm fuzzy feeling I’m looking for from a support group.
This brings me to the Living Beyond Breast Cancer Metastatic Conference that took place this past weekend in Philadelphia. The two girls I met in Houston suggested I attend with them, so I did. I had a wonderful time with them, as they are positive, funny, and have the same beliefs as I do, however, the conference overall didn’t leave me with a skip in my step.
In fact, on one of the days, some of the attendees organized a Die-In to represent the 108 women who die every day in the US from metastatic breast cancer. This is not something I could bring myself to participate in – I think the message they wanted to get across was powerful and important, but lying down and “dying” made things a little too real for me. I don’t want to lie down and die and I know that is not how they intended it to be perceived, but as a young woman with this disease I want to stand up and represent the many other women who are still here.
Strike 3 – you’re out!!!
This is not to say I don’t want to get involved and engage in metastatic breast cancer activities – I just need to really assess which ones benefit me. I also don’t want to sound like I’m poo-pooing on these organizations who are doing wonderful things in the world of breast cancer, I just don’t think it is right for me. I gave it a go and through it I did learn a lot about treatments coming down the pipeline, managing stress and anxiety that comes with stage 4 breast cancer, and most importantly, met some AMAZING women, so I’m incredibly thankful for that. I hope to keep in touch with these women for a very long time, because that’s how long I plan to be around!