120. Knocked sideways


24 April 2014

Only 36 lengths this morning. I usually swim 50. It is now quite clear that without at least an hour's bed rest in the afternoon (two hours is better) I barely make it to the end of the day.

On the positive side, I can see the enjoyment in this. I imagine this is the key to a contented old age: accepting life's limitations, accepting life's changing rhythms.

It is only when I get frustrated by what I can't do that life is hard.

I just need to grasp that the mornings are for activities (and currently, I can do a lot, I have enough energy in the mornings to make me wonder whether I might in fact keep going all day - until I get caught out in the afternoon, exhaustion suddenly descending like a heavy blanket).

If I can simply accept that afternoons are for rest, and announce it - to others, but also to myself - and plan around it, then it is quite lovely. The bliss of sinking into bed, resting my very weary limbs on the warm electric blanket, is glorious.

Yes, on the positive side, I think: of course. You start life needing rest and sleep; no-one would dream of trying to keep a toddler awake in the afternoon because there is so much more playing to do. The toddler's playing is intense, but so is his rest.

In older age or poor health, maybe you just go back to that rhythm of needing more rest, shorter sleeps in the night perhaps, added lie-downs during the day.

But on the negative side I think, Hey, I am not old.

It's fine for now, I am on annual leave, I only have my family to be responsible for, I don't have to worry about work.

But my standards are high and I feel guilty, I already feel guilty about time off work. The guilt is entirely mine. People at work couldn't be more understanding, all encouraging me to take the time I need.

I have read up about cancer-related fatigue and don't think this is it. I hope it isn't.

Cancer-related fatigue seems to be more associated with advanced cancer, or it could be a sign that the cancer has caused changes in hormones for example. That would be worrying. The symptoms don't quite match either. Unlike cancer-related fatigue, mine does seem to improve with rest. Yet it seems too overwhelming and too physical to be purely due to emotional distress.

But I think I am still deeply distressed.

I have hidden it, I am glossing over it, because of the firm belief that mine is an early cancer that will be cured. Outwardly, I am incredibly positive. And I still have this sense that my life is so charmed and blessed that things cannot possible go wrong.

But they do go wrong. I do have cancer.

Perhaps that remains the deepest cause of my distress, the loss of control, that frightening realisation that serious illness can happen to me.

Perhaps I remain so tired because I have lost my grip on life. If cancer can happen (even a cancer caught early), then anything can happen.

Tomorrow is my pre-operative appointment and I am actually quite frightened. I have never had an operation before. I have never been helpless before.

I am helpless now.


Thinking back to that time, I see myself in a bit of a haze. There I was, unable to function properly, terribly tired, spending lots of time hiding under the duvet. It was a physical thing, that exhaustion. I didn't have the energy to focus on anything but myself (and thus, I couldn't string any sensible work-related sentences together, but I could write endlessly about my own predicament - no wonder I started this blog in the end, it was all I could do). But it wasn't just a lack of mental energy, which would have been understandable enough. Come the afternoon, my skeleton simply wouldn't hold me up.

But physically, nothing had changed from the previous month. Early cancer doesn't give you any symptoms. You feel fine, you feel fit, you feel strong. The only thing that had changed was my knowledge of the cancerous lump. That was enough to render me utterly incapacitated. For months.

This is what amazes me most, looking back. It was one of the most important lessons. 

I had always seen myself as a strong person, mentally. Mind over matter and all that. I know the theory of distress, of grieving - and yet I didn't really know it. I didn't know that having an understanding of the theory is no help at all in practice.

You still need to go through the exhausting and lengthy process of psychological, emotional and social adjustment.

Now, a year later, having endured months and months of grueling treatments, I actually have a good physical excuse for being tired, and yes, I am tired. But it's nothing like the tiredness of a year ago. I can function, provided I am sensible about rest (which often I am not... what am I doing here, typing these diary words into a computer after a long day of work and family?). The tiredness is mostly physical (I think), and that makes it much easier to get on with. When I'm vaguely rested, I can do everything again - including writing sensible work-related sentences.

Here's another thing I've learnt (and I'm glad I kept that diary, otherwise I would have forgotten the extent of my distress in those first weeks)...

There is no straightforward relationship between the severity of the illness and the levels of distress.

Occasionally, when I was in the midst of chemotherapy, I'd come across a recently diagnosed woman who "only" needed a lumpectomy and a bit of radiotherapy. No lymph node involvement, no sign of cancer beyond that little lump.

"Huh!" I might be tempted to think. "That hardly counts! You have it easy!"

But then I remember... that was my own position, during the first six weeks. Everyone, including me, thought a lumpectomy and a bit of radiotherapy would suffice. End of.

And look what state I was in.

You cannot predict how you will respond to a cancer diagnosis. You cannot judge people on it either. We all need to get through it in our own way.

I am just grateful that the people around me seemed to understand this better than I did at the time. They let me be. They gave me space. At work, at home, among my friends.

I was lucky.