My experience with inflammatory breast cancer has been both wonderful and weird, even at the same time.
My experience as an inflammatory breast cancer survivor can be described as both wonderful and weird. I can use the word wonderful because I have met so many incredible people along the way. Wonderful is a free fly fishing retreat in the beautiful North Carolina Mountains. Wonderful is how far we have come as a society that we can talk openly about cancer. Wonderful is opportunities to speak and share about this rare disease in hopes of saving a life.
It is weird because some things just are — like people assuming that they can ask you anything, just because you have had cancer. Some things are personal. Weird is hearing all the stories people tell you when they realize you are a survivor. You know, like "Aunt Sally, oh she had breast cancer, she died, it was awful.” How is that good for me to know? Weird is your body not functioning the way it did before cancer.
A counselor at my cancer center talked to me once about what she called equanimity. She held out both hands evenly and said it is when you can hold both good and bad equally in the same situation. Being a cancer survivor has been a constant exercise in this. Most of the time I have found difficulty in trying to express these kinds of thoughts.
I don't know why, but people expect survivors to always be happy and focus only on the positive. That is helpful, it is true, and I advocate for a positive outlook. But it is not realistic to always be happy in hard situations, nor is it healthy to only focus on the positive without giving a voice to the negative. The expectation of always being "up" can be exhausting. The truth is there have been times that I have cried my eyes out for the losses cancer has caused. There have been times when I have rejoiced at the good that has happened. There have been times I had to fight rudeness with everything in me. Times when perfect strangers have asked me, "did they take your breast off?" Also, there are times when I am faced with a limitation and am told, “Well at least you are alive, be grateful for that.”
I am thankful to be alive and people who know me know that. However, it doesn't mean there aren't real things that survivors face that are difficult. Difficulties can even arise years later due to treatment issues. Honestly, I have laughed, I have cried, I have shared and I have wanted to not share. It has been a wonderful, weird ride that I hope to continue for many years.
Take a word of wisdom from me into your own life; be sensitive to the needs of survivors. It may be a weird day, or a wonderful day but whichever it is, let them feel what they feel. And if you see me in the grocery store, please God, don't ask me if they took my breast off.