Saturday 21st February

When I was pregnant with Dani, I developed Carpal Tunnel Syndrome, particularly in my right hand. It has bugged me ever since then – being worst when I was pregnant with Michael and also when I had Rubella (twice) and got arthralgia in my joints. I still often get it at night, mainly when I have been sleeping on my right side.

It has started bugging me more frequently. This morning, I couldn’t sleep because my arm was sore, even though I hadn’t been sleeping on it. I’m wondering if the swelling and injury to my right side, as well as the loss of lymph nodes under my right arm, aren’t just exacerbating the situation. Just another thing to make sure I don’t sleep well L

I keep thinking about the threat of lymphedema. Will I end up with a swollen arm that needs treatment and management? Is this part of the whole thing happening, anyway?

Again and again, I am reminded that this has been a helluva procedure and has taken a huge toll on my body.

Dani and I went paddling today. It was chilly and quite windy, but really lovely. I could only make 2kms, because my I seemed to be feeling tired – and my left shoulder was really sore. (If it’s not one side, then it’s the other…)

We went to supper at the Spur tonight. While we were sitting there, the others were discussing the whole thing about breast cancer and the different treatments. My cousin in Australia is having chemo for six months before they operate. Sarah asked why they don’t just do a double mastectomy. While the discussion was going on, I found myself getting very upset, because the way the ideas about removing a breast and having such radical surgery were just part of a conversation seemed wrong, somehow. It’s not a simple thing. It’s something really, really invasive, harsh and difficult to live through – and with.

Even I can talk quite easily about having a mastectomy and not really dwell on the impact of the procedure. It’s when it kind of sneaks up on me that I become acutely aware of all the implications. And it’s upsetting to think that this is how it has to be forever.

The whole thing about timing and a person’s coping mechanisms is weird. I have felt the impact of the actual operations much more in the last number of weeks, now that I am a couple of months down the line, than I seemed to feel at the time. I think it is the fact that there was so much going on when I had the mastectomy and the drains and then chemo to deal with that I didn’t really have to face the idea of forever without a boob and looking and feeling like this.

It’s not about what it looks like to other people. I don’t actually think it’s that obvious that there is an imbalance in my anatomy, anyway, so most people won’t even notice. I don’t think most people would care anyway. It’s about what I see, what I know and how it has to be. The other day Daynia asked me why I don’t have a reconstruction one day. I’m pretty sure I never will, mostly because I just don’t want to go the route of having something foreign in my body that then gets infected. Also, even a false boob will not make me feel normal again.

Actually, I don’t have this great desire to have to have two boobs to be normal.  For me, being ‘normal’ is more about how I feel and am able to get things done. The thing at the moment is that I find that I am computing the implications of the whole ‘cancer thing’ and what has been done to my body because of it. I am also coming to terms with it emotionally, mostly unconsciously. It just hits me.

No-one said the journey would be easy. No-one said how long it’s going to take. The important thing is to keep going, step-by-step, dealing with what happens as it happens. So much of this is unpredictable and I can only make sense of it as it as I go along.

Onward and upward.