This Club I Never Asked to Join

Posted for Saleema

I have to start this, my first blog, by saying that, as a sexual health educator, I spend most of my time speaking in front of large groups of people. I can advise a group of parents what to do when their child walks in on them being “intimate”, I can talk about practice erections with grade 2s without even flinching, and I can teach 200 Gr. 9 boys how to do testicular self exams as if I were talking about bicycle safety.

 But speaking or even writing about myself and my personal experience is so much harder! On the one hand it feels so self-indulgent. What’s so special about my story? On the other hand, though, I see this as an opportunity to challenge myself, to shed some light on the experience of breast cancer, to offer hope to breast cancer patients, survivors and their loved ones. I also do this because I believe now more than ever that sharing our stories brings us closer together as women, and as people in general.

  In this blog, I’d like to share with you how http://www.breastcancernowwhat.ca  has impacted my breast cancer experience. But just to give you some context in which to hear my story, I’m a bit, shall we say, tightly-wound. I like to feel in control of my life, and most of the time I am (or was). I am highly organized, time efficient, and like to have a plan…an “if you’re not five minutes early, you’re late!” kind of gal.

A few years ago, the plan was to marry the love of my life, Chris, in March 2007, take some time to settle in to my new life as the super wife and the super step mom I knew I could be, and then have a baby in April or May of the following year. All of this was happening later in my life than I had planned, but at least now I was on the right track.

  Then on October 22nd, seven months after we got married, two months after I went off the pill, I found a lump. This was definitely not part of the plan. What I wanted to do was ignore it, but my internal voice was screaming, don’t you dare. So the next day I went to my family doctor and although she was pretty certain it was a fibroid she sent me for an ultrasound. That was followed by a mammogram and lump excision. On November 23, 2007, Chris and I stood in the surgeon’s examination room and without even sitting us down the surgeon said “It’s not benign. You have cancer.”  Just like that.

  Neither Chris nor I remember driving over Lion’s Gate Bridge, but somehow we ended up in Stanley Park. We walked and cried and sat, and eventually headed home wondering how are we going to tell our family. I wasn’t ready to tell my parents or my sister or my step-daughters. That would have to wait until later when I was feeling stronger. Plus, before I did that, I wanted to have a plan of action…something to let my family know that everything would be OK.

  Over the next days as the initial shock of my diagnosis wore off, I got down to business. I rallied the troops (my friends and family) and also learned that there was a lot of good news within the bad news of my diagnosis. I caught the cancer early, and it was less aggressive than it usually is in women my age. I was able have my lumpectomy and sentinel node biopsy scheduled for two weeks later (with a different surgeon). Everything was under control, and I like it that way. My second surgery went well– my lymph nodes were clear, and I felt good about my decision to have radiation and take tamoxiphen as follow up treatment. Around that time I was also able to connect with a few fellow breast cancer survivors on the phone, and these conversations were helpful.

  But, here’s the thing. Although there was lots of common ground, these survivors weren’t like me. They weren’t 36. They didn’t just get married. They didn’t have two young step-daughters. They weren’t trying to get pregnant when they were diagnosed. They didn’t need to worry about their fertility after treatment. They had friends who had experienced breast cancer and could draw support from them. I didn’t, and I needed that in some way.

  One night while researching tamoxiphen and it’s effects on fertility, I came across a link to Breast Cancer Now What?. I recognized the name from a postcard I had in one of my many information packages, and was curious. The first post I came across in the discussion boards was written by a young woman venting her irritation at how people mispronounce breast cancer terms…”Limp nodes” instead of “lymph nodes”, “massectomy” instead of “mastectomy”, that sort of thing. I laughed out loud, harder than I had in a long time. Within minutes I found myself writing my first post, feeling relieved that this website was exactly what I was looking for.

  I was a regular on BCNW discussion boards during my treatment. Sometimes I would post specific questions on the discussion board (what is tamoxifunk?), sometimes I would just vent (during the end of radiation treatment it was “my nipple is hanging on by a thread!”), and other times I would just read about other people’s experiences. Not only did I get wonderful support, but I no longer felt alone. The discussion boards allowed me to “get stuff out” without having to put on a happy face or be judged as ungrateful for my good prognosis. More specifically, I was reassured by other women on the site that it was OK that I wasn’t doing the Weekend to End Breast Cancer that summer. At the time I felt such guilt for not doing it, I thought I should because it was the responsible, giving, supportive thing to do. But the thought of being surrounded by breast cancer for 24 hours, being part of this club I never asked to join, seemed unbearable at the time. On BCNW I learned that that was OK and that I wasn’t a “bad survivor” for not being involved now or ever. Talk about a weight off my shoulders.

  Although I used to be, I’m not ashamed to admit that it’s only in the last year that I have started to feel that this whole cancer thing is behind me. Some days are harder than others, but the black cloud over my head has lightened. I’ve read about people saying “cancer is a blessing because it makes you a better person, it makes you change your life in positive ways”…blah blah blah. I’m definitely not there, and I don’t think I ever will be. Cancer sucks, I’m angry that it took space in my body that I took such good care of, it’s not fair that good people die of it. But, I will say this, in the past two and a half years, I have never felt so loved. My family and friends have wrapped themselves around me like the warm blanket they gave me after surgery. My hope is that reaching out to others will help my fellow survivors to feel this too, just when they need it most.

     ~ Saleema.