Stories of Cancer
Giving Voice to Real Experiences

Fatigue Management

About six months after finishing treatment I did a fatigue management course, which was good, and the learning from it is still with me now. “Do a bit, rest a bit” is the main principle I came away with but this very simple guidance is incredibly challenging for me. I’ve always been more of a “do a lot, rest a lot” sort of a girl – either in top gear or no gear at all. I’d tried, in the years before cancer, to be more balanced, doing yoga and meditation, trying to slow down, but still I find myself rushing at tasks, trying to get everything done so that I can rest. These life patterns can be difficult to change, and rest coming as a reward for getting everything done is a particularly ingrained one of mine. The fatigue management course didn’t help me to change this, which I begin to realise is one of the main things I need to do if I am to change this boom / bust cycle I’m in.

At the start of the course they test me to see if I’m depressed, and I come out as mildly depressed. I tell myself it’s normal to be a bit depressed when you’ve spent a year having treatment for cancer, and its normal to be depressed when you have such limiting fatigue. In fact I’m surprised it’s only a mild score given how desperate I can feel on a bad day. I think I was smart enough to give the right answers so that it didn’t look too bad. I know depression can cause fatigue, but if that’s what going on then it’s all in my head and I feel I should be able to get past it (but this is probably just another way of being hard on myself). I continually seek reassurance from the medics that what I’m experiencing is normal after what I’ve been through. I rarely get it, except from the complementary therapists I see, and from my GP who thinks it’s entirely understandable.

With hindsight, doing the course then may have been too soon for me. My energy was so low, down at 3 or 4 (out of 10, where 10 is what my energy was like before treatment), that it wasn’t really manageable. Whatever I did to manage it, it rarely went above 5. The therapist running the course used to say: “if you haven’t recovered [from an activity] after resting for half an hour, you’ve overdone it”. At the time I just didn’t understand this. Maybe I was overdoing it all the time, but I also think I was in such a bad way my energy never got above 3 or 4, so I never had a sense of recovery, in the sense of energy levels returning to what I considered to be normal. I didn’t realise then that I was going to have to find a new normal.

The twelve months after treatment turned out to be a year of struggle and recovery, for both Terry and I. It was clear by this time that he had ME again. He’d had it before, nearly 20 years ago, but here it was back again. It was very hard with both of us being so fatigued. How shopping got done, how any domestic stuff got done, is a mystery to me as I look back. (Of course, quite a lot of it just didn’t get done at all – my idea of what qualified as a clean house changed somewhat during this time). We did have some good times, when we relaxed together, lying on the bed watching films in the afternoon, or going for short walks together by the river. We also went to the Bristol Cancer Care Centre (now Penny Brohn Cancer Centre) where it was wonderful to get looked after in such a lovely environment. It was a great relief to me to know that other people were looking after Terry too. Somehow we managed to celebrate his 60th birthday that summer too, so life hadn’t completely come to a halt.

The menopausal symptoms got worse as the year went on, and I began to question the value of taking Arimidex as my tumour had been only weakly positive in its reaction to oestrogen. The insomnia was hard to bear, though I began to find ways of managing it, realising eventually that lying awake being annoyed about it wasn’t helpful. I read, I watched videos that I’d taped, and one night at five am I even wrote a little poem:

My heart is howling, my body despairs
Crying uselessly to the moon
Begging to be reunited with the hormones it knew so well
For the suffering to end
For this toxic wasteland of a body
To be returned to well being
With clean flowing rivers, strength and energy

I speculated in my diary about whether the menopausal symptoms were worse when the moon was full, whether somehow my body was trying to re-connect with its previous four weekly menstrual moon-cycle, and what impact having a three weekly (chemo) cycle had had.