I read along with a breast cancer chat on Twitter tonight. I don’t have breast cancer but I follow some of the women who take part and I feel that I benefit from reading along as women share their experiences. It makes me feel not so alone in my feelings or how I respond to situations. I normally don’t participate but as the conversation progressed to the merits of having a positive or kick ass attitude I felt compelled to join in.
You always hear that it is so important to have a positive attitude but the fact of the matter is attitude doesn’t cure cancer. For me, in a way, focusing on being positive and upbeat and strong brought about intense lows when things went awry or schedules changed or when the outcome of the last MRI wasn’t what I’d anticipated. I’m not saying that anyone, cancer patients or otherwise healthy folks should walk around miserable, scared and anxious every day, that would be awful. What I am saying is it is impossible to be positive, upbeat and strong on a daily basis. And it makes for brutally long falls when you cannot maintain that attitude.
When I found out that my treatments were actually 32 instead of 30 it was a huge deal to me. Once I got over the initial fear of it all I showed up every day for my radiation treatments with as much positivity and happiness as I could muster. Each day as I left the hospital I updated my Facebook status & Twitter feed, 1 treatment down, 29 to go! I focused on that. I drew comfort in setting my mind to believing that I could do anything for 30 days. I made plans in my head for the last day of treatments. Machines broke down, the doctor informed me the calendar they gave me cut off and in fact I was scheduled for 32 treatments and so my end date went from June 21 to June 27. The setback sent me spiraling. I had several really bad days. I didn’t want to go back, I was upset and angry and tired and adrift. I’d held fast to that date and planned my emotional wellbeing around it. In the end I rallied but the days when I was upset and furious and disgusted and cranky I felt guilty because I was not handling things well, because I was unpleasant to be around.
Then came the news on August 5 that my MRI was not clean. It could be anything. It could be damage from the cancer, damage from the surgery, damage from the radiation treatments or it could be residual tumor and there could be more radiation in my future. The doctor (neurosurgeon) seemed shocked by how upset I was. He said (paraphrasing) that as sick as I was last October I should be happy with how well I am doing. Well I’m sorry that my dismay at hearing that the first round of 32 radiation treatments may not have been enough, I’m sorry I didn’t express gratitude for how far I’ve come when there could be further to go. I’m sorry that your advice to not let this ruin my life and to not dwell on it weren’t much comfort. You see I put my faith in being positive and strong and just living through this. If I could just keep going, if I could just be brave for one more day it would all be okay in the end. My mindset is not his fault. I like my doctor and his nurse and I practically bounced into his office waiting to hear that another leg of this nightmare journey was coming to an end. The shock of hearing that the MRI was not clean knocked the wind out of me, I sobbed. I really, truly believed that if I just kept going, that if I just met each day with a smile that I’d be okay. No one expects for the first treatment not to work or at least I didn’t.
I don’t for one minute believe that if I’d gone through this experience miserable and angry and acting out that I’d be sitting here telling you that I know for sure that I’m cancer-free. I don’t for one minute advocate going through life unhappy and angry, it’s really no good for anyone no matter how sick or healthy they are. But the intense focus that seems to fall on sick people (no matter what disease) to be positive and strong is actually quite a burden. I told you when I started this “I’m writing to express myself and perhaps put out there that which unfortunately lives in my head. I also hope that maybe someone who’s going through similar circumstances will benefit from reading. You know you always read about these fantastic people who fight so bravely and go on with daily life as though nothing has happened. Not everybody can do that. Certainly I can’t. I have moments where I’m not sure if I’m terrified or just sad.” It’s all true.
Reading along tonight helped me a lot. I hope that if you’re reading along here you take away at least this, each journey is unique and we each have to face it in whatever way we feel comfortable. There’s so much pressure in life to be perfect every day. We certainly don’t need any added pressure while we are going through surgery or chemo or radiation or all three or more. Thank you so much to the #BCSM girls whose words offered me comfort, security and solidarity tonight.
Thank you all for stopping by to read every day. I love you all.
With much love and great affection,
~ Carol Anne