Stories of Cancer
Giving Voice to Real Experiences

Fatigue

“Fatigue waits and is like rust. It eats into the strongest wills, turns into red dust the most fervent hopes, undermines our energies….” John Berger

A few weeks after finishing radiotherapy, I hit a wall of fatigue. Apparently this is quite common, and once I was told that was the case, I wasn’t unduly worried and assumed I would slowly start to recover. Although there has been some improvements since then, fatigue has continued to be a problem for me, right up to the time of writing this, now five years after treatment has finished.

Cancer-related fatigue is very frustrating. Apart from the depth of the exhaustion, the inability to think clearly and all the other symptoms, one of the many challenges it brings is how to describe it. I often can’t find the words to explain that I’m unwell, especially with people I’ve just met, yet I have to say something in response to the inevitable “what do you do” question. “I don’t work any more / I’m not working at the moment / I’m not well” have all been tried and none of them feel quite right to me. I don’t want to say “I have cancer related fatigue”. New people don’t need to know straight away that I’ve had cancer, or perhaps I don’t want to tell them yet. I also find it hard to believe that I’m still ill from the treatment, five years later.

So I’m hoping that writing this will help me to get better at describing what’s happening for me – and that it will help others struggling with the same problem. Reading the diaries I’ve kept over the last five years, in order to write this, has already been valuable. I can see clearly how I overdid it again and again, and how my psychological processes may have made it harder for me to recover. Time and again I would set myself goals that with hindsight were unrealistic, for example: ‘I’ll be back at work by January / by Easter / by September’, only to get to that point and find my energy hadn’t returned and that I’m still too limited by the fatigue.

Sometimes I say I have chronic fatigue, which is true. It may even be a more accurate phrase to use now that my cancer is (hopefully) in the past. The term “cancer-related fatigue” sounds like it’s a current cancer that is causing the fatigue. In fact the term refers to fatigue caused by treatment for cancer as well as the fatigue that cancer itself causes.

With people who do know me, and ask how I am, I might say that I’m still really tired all the time. With one person this elicited “oh yes so am I but I don’t have an excuse for it”. Somehow this felt like a put down but I couldn’t work out why at the time, and I didn’t want to get competitive about who was the most tired. I know that lots of people are “Tired All The Time”, I think I heard somewhere that this is the most common complaint GPs face in their surgeries (common enough to be given the acronym TATT). I don’t know if my tiredness is different or worse than other people’s, all I know is I’ve never experienced anything like it before.

In fact, “tired all the time” doesn’t do it justice. Neither does “not feeling refreshed when I wake up in the morning”, though both of these are true for me. Sometimes the fatigue comes in waves, crashing over me, flowing through me, and I feel I have to sit down somewhere, or lie down, till I recover. Sometimes the wave will coincide with a hot flush, heat gathering from my abdomen and chest, sweat running down between my breasts, dampness gathering on my upper lip and brow. Sometimes the hot flush is preceded by a panicky feeling that adds to the disorientation. Often this happens at night, waking me just as I’m falling asleep, as if I’ve forgotten something important, suddenly I’m wide awake again for no reason. Getting a good night’s sleep has become very important to me since struggling with fatigue, so when this happens I can get very frustrated, which doesn’t help me to go back to sleep again.

Sleeplessness was the first sign I had that I was approaching menopause, though I didn’t know that’s what it was then. Chemotherapy hastened what was going to happen soon anyway, bringing on a chemically induced menopause, and I’ve heard somewhere that “chemopause” means the symptoms can be more severe. During chemo the hot flushes were awful, as they were accompanied by nausea and vertigo. Now they are a lot shorter and much more bearable. These days they only last a minute and only come maybe every hour, or less. Compared to what they used to be like, hot flushes are the least of my worries now. The insomnia is less of a problem than it was.  I still wake up several times a night but those awake all  night times seem to be a thing of the past. I sometimes think that if I could ‘cure’ the insomnia the fatigue would go but this is doesn’t seem possible at present without taking heavy drugs which I don’t want to do.

Recently I found out that fatigue causes insomnia, and all this time I was thinking it was the other way round. Looking back at my diaries, the nights when I couldn’t sleep often did come after the days when I overdid it.

My main symptom these days is the continuous tiredness, the constant low energy level. The only times I don’t feel tired are when I’m out walking (though if I walk too far or too fast I need to sit and rest for a while before continuing) and when I meditate. I find that doing anything for more than an hour and a half tires me and if I ignore the tiredness I soon “hit the wall”. Hitting a wall of fatigue is awful. In my case, it still happens far too often. It’s difficult to have the necessary self awareness sometimes, and sometimes its hard to put my needs first. If I’m doing something I enjoy or something that feels important, especially with other people who I don’t want to disappoint, I have a tendency to go beyond the energy that I have and then I crash. Hitting the wall means my limbs don’t work any more, my brain struggles to function, and everything is just too much for me. I get emotional, sometimes tearful, anxious, and my confidence is at rock bottom. Once I’ve hit the wall I can do nothing, reading is too hard, even watching TV can be a challenge, and I just have to rest until it gets better. In the early days, overdoing it like this would affect me for days afterwards. Now I’m usually recovered by the next day.

Managing my energy levels has become the main challenge in my life. As I look back over the last few years, I can see progress being made, see things that used to be hard that are now easier, which is heartening. The other thing I see when I look back are some familiar patterns that are about me as much as about the fatigue. For example my deeply ingrained protestant work ethic has not been a useful ally for me on this journey. There’s often a voice in my head, saying I haven’t had a productive day, telling me I should have done more, telling myself off for being lazy. I’ve watched myself go through the same cycle over and over again, of frustration when I overdo it, followed by telling myself off, followed by feeling worse, followed (hopefully) by a realisation that acceptance is the only way to cope with the reality of my physical limitations. Acceptance though is much easier said than done!

Often the cycle begins with me thinking I should have recovered from the treatment by now, like I imagine everyone else has done. Three months after finishing radiotherapy, and a month after starting hormone therapy (Arimidex), I wrote:

I feel old before my time. My joints are all aching, the menopausal symptoms are worse, this hormone therapy is driving me crazy. I can’t cope, I don’t want this, I want my oestrogen back, I want my body back as it used to be. Surely I should be recovered by now – I thought I’d be ready to go back to work at the start of this year.

I’m spending too much time in bed, watching too much telly, crying a lot, occasionally surfacing to do something but then its so easy to overdo it, getting frustrated, crying about how unfair it all is, then somehow (with a little help from my friends) breaking through to a realisation that I need to surrender, it is what it is, I need somehow to learn to accept and to be kinder to myself.

Around this time Terry and I have some counselling together and the counsellor says “what would happen if you just relaxed into it?” I burst into tears, as I realise how hard this is for me to do.

Two years later I am still overdoing it. I went to Liverpool with my friend Joan. We stayed overnight in a hotel after going to a concert, and spent the next day in the city with my sister:

… in Liverpool, being a tourist, having a day out, nothing too strenuous, but hadn’t slept well the night before, and just kept going without resting. Its frustrating because people would think I was doing restful activities: eating a nice breakfast, wandering round museums and galleries, having lunch, sitting down quite often, talking with friends. I worry that some people think that this shouldn’t be tiring, or that these things are quite restful relaxing things to do, but the truth is that I need more rest than this. I need to sit somewhere quiet and comfortable and close my eyes / meditate, lie down, sit and stare into space, do nothing and I probably need to do this every hour or so for a short time. But life doesn’t divide up into these sorts of time slots and I feel like I’m holding other people up or that we would all be getting more done if it wasn’t for me. I fear that I sound whiny and whingey when I say I’m tired, probably because by the time I voice it it’s already too late, I’ve already hit the wall and can’t work out what to do in the middle of a strange city, no bed nearby, I just want to go home and lie down. And once it is voiced, we’re in the car on the way home. But it took me two days to get over the trip.

Sometimes, I decide, I will have to take a calculated risk and have days like this; so what if it takes time to recover; it was worth it to have a good day out with people that I like being with, doing things I like doing. If I re-arrange my life so that I never get fatigued I’ll end up not doing things I want to do, the things that bring me pleasure. This is the kind of dilemma that fatigue brings – a dilemma that I never had to face before.