Yesterday, travelling home from Manchester, I opened an email from someone who sent some information about herceptin. It was helpful, in that it added to the weight of information that says “no-one really knows”. And it included a comment, meant helpfully I am sure, that left me breathless and blind with tears in a second. I’m not going to quote directly, because I don’t want to make this personal as I believe it was well meant, but it was something along the lines of “if I were you I would do anything to make sure I got to see my children grow up.”
Well meant? Undoubtedly. Thoughtless? Spectacularly so. Or maybe it was a comment intended to make me think about someone other than myself. Hurtful? Deeply. I sat on the train trying to keep it together. I was doing that ‘not actually crying but tears rolling everywhere’ thing. Because I’m learning about asking for support, I texted Alan and forwarded the email to him. (I didn’t dare call becuase that would have really opened the floodgates.)
An hour on a crowded tube, and a little steer from a friend, gave me time to put myself in the position of the writer. She probably has small children and cannot imagine making choices that may suggest she may not be there to see then walk, talk, grow. She probably hasn’t had cancer and so she may have bought into the whole ‘cancer = probable death = anything is better than that’ line. Chances are she doesn’t walk like an old woman, wake three or four times every night with violent cramp, bleed constantly from the nose, and isn’t going through a medical menopause. She may never have had to deal with a couple of robot arms and weapons-grade antibiotics to get rid of infection. She may not have spent 16 months of non-stop medical treatment which depletes energy, resources, and the ability to deal with thoughtless comments. She may think that doctors always know what they are doing and to go against medical advice is reckless and irresponsible.
I arrived home to hugs, love, and apple doughnuts. I told Alan, Ned and Joy that the comment had made me feel that I was a bad mother by even thinking about not taking herceptin to the bitter end. I cried. Ned said simply that “we can all see that herceptin is doing more harm than good”. Joy had already texted me her view, that “you are not going to die from this – herceptin or no herceptin. You are just thinking about what’s good for your body, and it’s much more important that you look after yourself and know what is good for YOU than any drug.”
Alan and I exchanged a look that said, “wise children’. I feel better and I feel as though I understand where the comment may have come from. Everything that I’ve posted in the last week or so on the subject of herceptin still holds. Just. I must admit that I am quite a bit more wobbly on this than I was before I read that email. The spectres of selfishness and bad mothering are hanging over me and cackling and it’s not a pleasant sound.