I am a breast cancer rookie. I’m just halfway through chemo, with surgery and radiation still on the horizon. The women who have gone through all three are the experts. The ones who have made it to the 5 year mark are the gurus. I have learned a thing or two in the two months since my diagnosis and I will learn a whole lot more as I continue down this winding (pot-hole filled) road.
If you have come to this blog looking for step-by-step instructions on how to deal with breast cancer or details on what exactly is going to happen and how you are going to feel, you’re not going to get it. What you will get is my interpretation, my side effects and my story. I’ve learned very quickly from reading, feedback from survivors, those currently experiencing this disease, from medical experts, and from my support group that we are all different and our journeys are different. I want to use a harsher word than journey (like shit show) but I’ll refrain. Of course, there are a LOT of commonalities that we can commiserate on but sometimes our experience is as different as we are as people. You may be diagnosed younger or older, have a higher or lower stage than I; have come into your diagnosis with a ton of support or none. You could be in great shape or have had health problems. You get the picture.
Obviously, I can’t reveal details of what is said in support group. It’s kind of like Fight Club but the women have less hair than Brad Pitt and are ten times tougher. I can say this; going around the room and listening to these women’s stories both scared and encouraged me. Everyone has a different experience. Someone said “radiation is a nightmare” while another said “radiation is a piece of cake.” You see what I’m saying? Some shaved their heads while others just let their hair fall out. I’ve heard nightmare stories of side-effects to chemo, inspirational stories of kindness from others, and emotional recounts of highs and lows. Some women started with surgery. That could mean a lumpectomy, a mastectomy or a double mastectomy. Some, like me, started with chemotherapy. Some refused it, some decided not to finish it, and others just plowed through. I find comfort in sharing the same experience as others but I also find comfort in NOT sharing their experiences.
If you have been newly diagnosed, take every piece of advice, every story, every side-effect, with a grain of salt. I love hearing both positive stories and cautionary tales but it doesn’t mean that I will have that experience. My pathology report noted that I was ER PR negative and HER2 positive. I could have been triple negative, triple positive, ER PR positive and HER2 negative. All of this has an impact on the drugs I will take and my overall prognosis. I know of women who were sick to their stomach after chemo but that hasn’t happened to me. I have heard of people losing their taste buds. Mine are so far, intact. Some lost their eyebrows, some didn’t. Some people gain weight because of the steroids in the drugs we take, while others lost weight. So many scenarios!
I have not been immune to side-effects, believe me. Some of the smaller things drive me crazy. My nose runs all the time and I need to open my eyes in the morning using my fingers. I won’t get into all of the unpleasantness because that may or may not happen to you. My side-effects sometimes read like the end of a Champix commercial. They are usually temporary however, and I find chemotherapy tolerable. It’s not easy, but if it’s working to kill my cancer, that’s good enough for me. I remember reading, like millions have, about Shannon Doherty’s breast cancer experience. It scared the daylights out of me. She spoke of vomiting every ten minutes and being rushed to hospital in order to be hooked up to an IV. I was terrified and prepared myself for a similar situation. It wasn’t the case at all for me and I felt so badly for her.
There are knowns and unknowns when it comes to this disease. You can gather all the information you want, which is not a bad thing. That’s how I work. Share stories, give and receive advice, but understand that you are an individual and how you deal with this and how you come out of it isn’t going to be the exact same as anyone else. We are more like Bits and Bites than we are Pringles. How’s that for a deep thought? As an aside, sharing second hand cancer horror stories is not advisable under any circumstance with someone who has cancer. We all have a story. Save them for your non-cancer buddies. They aren’t helpful.
I do think it’s good to take advice from people who have solutions to your problems, however. If you say, “I’ve been suffering from this side-effect” and they say “You should try such and such…it worked for me” that would be beneficial. I don’t want you to shun any and all advice that comes your way. Just use a filter. I’ve had great recommendations from medical professionals and people who have been through what I’m going through. I don’t always take the advice from people who don’t have firsthand experience. Just because you read it on Facebook, doesn’t make it true.
To those new to this dreaded reality, take heart. You will hear and read many a story but you will write your own.