Metsters are dropping like flies. Maybe its that time of year. Maybe its that I’m meeting more and more people like me. Face it, I can’t just walk down the street and find someone living 4 years with metastatic breast cancer.
We are still the silent ones, the elephants in the room. There is no cure, and no-one wants to hear that downer of information. We are going to die from the very disease that SGK has been talking about for 30 years. Thirty years! Still no cure. What will it take for the focus to shift to research? When will the money go to a CURE?
MetUp has begun to illustrate the sheer numbers of those who die EVERY DAY from metastatic breast cancer just in the US. Imagine 110 men and women lying on the front lawn of your Capitol. Yes, that many people die every day from MBC in the US; 1430 worldwide. When is the last time you heard anything about that on the local or national news?
We’ve lost so very many voices this year: Seporah, Jenny, and Lisa are just three of those who died this year; three people that I had interacted with via video and PMs/DMs. Three women at different ages who all just wanted a cure. Three women who spoke out and spoke up. One BEGGED to be researched. Unfortunately, those of us at stage IV rarely qualify for any trial – you see, we have an average lifespan of 33 months from diagnosis. We might just die before the trial’s complete.
I’ve not ever even attempted any support group for breast cancer here. When I was first diagnosed, all of them met during the day…. helloooo! I’m working!!!! 10 hour days to be able to miss that one day for chemo. My job had no sick time, and forget leaving for something like a support group. Yes, I chose that job. Yes, I could have quit that job. However, I was physically able to work, and it seemed like there was enough upheaval going on; so no need to drop half of the family income while adding the bills that cancer brings.
Then the cancer comes back, and has spread. No longer am I working. And you know what, I thought about a support group. But just the reactions (pity mixed with horror) that I got from my closest friends was enough to push me away from seeking help from strangers.
About 6 months after I was diagnosed metastatic, I was volunteering with some other early-stage “survivors”. One of them said, “I don’t know WHAT I’d do if it ever came back. I’d probably kill myself because there is NO WAY I’m doing that again!”. I just looked at her and said, “You LIVE. You live with it because life is not yet done. You balance quality of life with treatment effectiveness.” She just looked at me and said, “How do you know?” I said, “Because it’s what I’m doing right now!”. She walked away and didn’t speak to me for the final 8 hours of the event. I don’t know if she was embarrassed, or what. But it really illustrates the division between those diagnosed at an early stage and those whose cancer has spread or returned.
There is a project called Veterans History Project by the Library of Congress to record the voices, the stories, the lives that these men and women lived. Maybe we should start a similar project with cancer patients. Think about it for a minute: moms telling other moms how to tell their children about having cancer. Grandmothers telling how they balanced the risk of infection with seeing their school-aged grandchildren. Women and men discussing what they did to preserve fertility and showing their children conceived after treatment. Women discussing how they are dealing with the loss of ever being able to have their own children. People discussing one on one what it is to go through treatment. It could be searchable by specific cancer, age, family status.
Would that help you? To know you’re not alone? To be able to see/hear someone who has gone through what you’re about to face? Just a thought, before our voices are permanently silenced.