Recently on another website I wrote about things I’ve had to learn about dealing with long term fatigue and its effects on my health since my diagnosis and operation - I had a partial nephrectomy following a kidney cancer diagnosis. I thought it may be of interest here also so here is an edited version.
I‘m aware that I’ve been lucky so far in not having to have treatment after surgery, and I don’t mean to make light here of anyone’s cancer journey - I’m aware that I’ve been lucky also in being able to cycle and still exercise, so hope I don’t offend anyone here: this community of people going through cancer has now become central to who I am and is massively important to me. The original article was a bit more upbeat / catchy because of the platform it was on, so I've tried to remove some of that tone here.
Quick Summary:
I didn’t bounce back after my operation last year the way I’d hoped for. In fact, a form of long-term fatigue set in that saw me daily counting down the hours until I could go to bed, my brain in a fog, with hot flushes and my body often feeling coldy and flu-like. Any attempt at running made me feel terrible for days, and I mourned the loss of my previous fit self and ability to compete in races. These last 18 months have been a massive learning curve for me, and something I’ve worked pretty hard at.
Some things I wish I could have told myself last year after the operation.
1: Be prepared to make tough decisions - if an activity/sport makes your fatigue worse, just stop it. Completely. Has it become part of your personality? Well, that’s tough, but it probably shouldn’t have been so central to your identity in the first place. No activity is worth three days of suffering afterwards.
2: Don't do too much too soon. I think I overdid it and now I don't get any endorphins from trying to run, I just crash physically and mentally.
3: Keeping a fatigue diary can be massively helpful in spotting fatigue causes and triggers and managing energy levels. I customised one I got from the Macmillan website
4: Think in terms not of training but of healing. Certain activities are healing, others are not. Certain environments are healing, others are not. Focus on the healing ones, stop the others.
5: Eating well and regularly is obviously important. Make it good-quality food too, not just chips on the way home because you’re too tired and can’t be bothered to cook. Plan ahead.
6: Experiment with ways to regain some sense of control over your life. Like requesting 10-minute rest breaks at work every two hours. Like reducing overall hours to improve work/life balance. A small feeling of control goes a long way. Like I said earlier, I acknowledge I've been lucky with the lack of treatment needed after surgery.
7: Technology doesn’t really help. The tech revolution in wearable devices that promise to help you manage your health just hasn’t worked for me: For example, HRV doesn''t spot my energy dips and my Sleep Score on my watch is generally high even though I often feel terrible upon waking. The lesson for me here has been to develop an awareness of how I'm feeling within myself without depending on my watch or whatever.
8: I now see that energy needs to be viewed as a limited resource and shouldn’t be taken for granted. I'm more reserved in conversation, and keep something back. Set and stick to boundaries. I try and avoid drama as that's draining. Also, pushing through a training session when I don’t feel up to it won’t result in progress and adaptations, it’ll simply make me feel terrible for days. I've learn't to say no to things more often.
9: I've had to accept the idea that perhaps an unknown percentage of this long-term fatigue thing could actually be a mental reaction to cancer trauma, and not ‘simply’ a physical reaction to the operation. It may not be low iron or some other observable thing, or some magic training solution; there could perhaps be a mental aspect to it that needs acknowledging and addressing.
Anyway that's it, a few points that have helped me on this journey. xx
