After I was diagnosed with breast cancer, I had a huge stack of papers and pamphlets: places to go, options to consider. My oncologist, in particular, encouraged me to join some sort of support group. There was one that fit me perfectly– breast cancer patients with young kids, of course the pamphlet was printed on pink paper. In retrospect, I’m not really sure why I went. I didn’t feel like I needed any emotional support. I suppose I went because I had put it on my to-do list, and so I needed to check it off. While I was going through chemo, I generally went if I hadn’t skipped a nap that week and I didn’t have anything more fun to do. Honestly, I didn’t feel like I got that much out of it. I think I found it more interesting from an intellectual perspective than anything else.
I didn’t go over the summer last year– it’s tough to make even a monthly meeting over the summer with travel and kids at home. I figured I’d go back in the fall. If I didn’t have anything better to do.
And then a friend had a recurrence. She’d hung out with me while I was on chemo, told me what to expect with surgery, even shown me her scars and compression gear after her final surgery. Last fall, I was faced with the reality that my candid, funny friend could die from breast cancer.
We have the same oncologist, and she knows that we are friends. Of course, she wouldn’t talk about my friend at my appointment, but she cautioned me that I would know “people” who had recurrences. That meant nothing about my chances of recurrence. She felt very optimistic about my case, and she warned me about getting too close with women with breast cancer. She knows my background and that I want to be able to use it and my experiences to help other women with cancer. She shared with me her own struggle maintaining a professional relationship with patients when she genuinely likes them– that it is hard for her to see them die. But that she has to have some separation. She shared all this with me in such a genuine way– out of concern, almost as a friend. As I worried about my friend (who is on a trial and doing great, by the way), I stayed away from the support group. Why would I want to make any more friends who are likely to die? More than that, why in the world would I want to spend time with someone who will remind me not only of my own mortality, but of the fact that I could die slowly, in pain, with my little kids looking on? I didn’t feel like I needed the group or anymore baggage, so I made up excuses not to go. Not that I gave those excuses to anyone– they never knew that I went to begin with. I gave the excuses to myself, knowing full well that I was telling myself lies.
As I approached my six month check up appointment in the spring, I started to worry. I worried about every little headache, an achy hip, a teeny little “nodule” in my breast. Intellectually, I knew I was probably fine. But the “what ifs” began to take over my thoughts. I felt so silly calling my doctors. I was embarrassed to bother them. (Thankfully, Clay told me that he didn’t want me to feel bad bothering them, but that he would feel better if I’d check it out. It became less about me bothering them for me, more about doing it because he wanted me to. And somehow that made it better.) About that time, I discovered the BCSM group on twitter and found many of them talking about “scanxiety–” the anxiety that comes as you approach a scan or doctor’s appointment. They talked about not wanting to bother their doctors with their fears of recurrence.
I found comfort in the validation. I hated that anyone else felt like I did. Yet it was comforting to know that someone else felt just like I did. I headed back to support group that month. I sat in the room of women, some a couple of years out from treatment, one past the coveted five year mark, and one who was taking a break in the middle of her chemo treatment. Because she was giving birth the next day. I learned two major things that day. No matter what crazy things I worry about, other people worry about them too. Also, I should stop feeling sorry for myself because someone always has it worse. I may have some things figured out when I walk in the door, and perhaps my words could help someone else. And because she’s already been through something I’m struggling with, her words can help me.
And so I will go to support group, and I will make new “cancer friends.” Desperately, I hope that we will all stay healthy and cancer free and die as sweet old ladies. Yet I know that I may not have gone to the last funeral celebrating the life of a woman whose life was claimed by breast cancer far too young. Even so, I am convinced that we can gain more through the sharing of our stories than the pain of loss can take away.
Beautifully written and poignant post! I’m 13 years out and still worry about aches and pains that assail me and mind games that simply don’t go away. All we can do is live one day at a time and go to support groups if that is what helps.
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Thanks, Beth. Somehow it is reassuring to know that we all share the same worries. Good to “chat” with you a bit online this week!
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