More things they don’t tell you
I’ve been thinking a lot about the things they don’t tell you, thanks to Caroline’s blog post. I think about where I am today and wonder.
One thing they tell you is that if you have a double mastectomy, you won’t need to screening every 6 months – so no more mammograms. What they don’t tell you is that they likely don’t do ANY screening. This can actually be very stressful, because of that inner voice that says What if they missed something? or What if it comes back?
For me this has been a challenge. I go days forgetting about it and just going about my day (yay). And then something happens, a muscle pulls, something hurts, and the questions pop up. But as far as my doctors are concerned I’m fine, in remission, nothing to worry about. If I have no symptoms of concern, then they are not concerned. I have to have faith that I’ll be OK so that I can move on, live for today, but also plan for the future. My oncologists likes to say, we are making this or that decision so that you will be healthy 30 years from now. We are not just thinking about the now. I suppose that this is true for any early stage (“curable” – although they don’t use that term anymore) breast cancer. The idea is that treatment sucks but you do it so that you have a good long life afterwards.
The point I wanted to make is that the downside to not have scans every 6 months is not having any scans, and the anxiety that not having scans can cause. The information to help you make your decision emphasized that not needing scans as a benefit, but it doesn’t really tell you that not having scans can have a down side from your mental health perspective. They don’t do a particularly good job of considering your mental health when they make up their decision tree tools. They look at your interactions with the medical system, and their goal is to reduce them (although they still make you wastes plenty of hours in the waiting room when you do come).
Last night I found out that a friend died. She was just 30 years old (maybe 30, I recall her 30th birthday). She was diagnosed a few months after me. When we met she was almost finished chemo (or just finished – not sure), and happy to be getting back to things. She moved on from cancer. She moved away from here, so I had not seen her in the last year. Her husband wrote a really nice letter listing all the wondering things she did in the last year from publishing articles (she was nearing the end of her PhD studies), to swimming a mile in open water, to getting married – something I know she really wanted. She was living. Then only three weeks ago she was diagnosed with metastatic (stage 4) breast cancer. She only lived three weeks after mets diagnosis. That is so very quick.
I think losing friends is what makes the first five years so difficult. Not only are you dealing with your own mortality, and all the physical and mental aftermath of treatments, you are also dealing with the death of friends. Friends who had the same disease you had. In your mind you struggle with thoughts of that could be me? am I next? But also a profound sadness for all those left behind. For the strong men or women in our lives that care for us. We are sad for them too.
But I’m not sad for having known them. When I think of my friend, I see the light that was in her. I see her smile. I see the energy he had and the good things she did with her short life. She lived. And although her death came quickly, it means that she didn’t have to live with the idea of dying too young for long. It all happened so fast. I’m still in shock.
Feature image CC0 from Pixabay.