Stories of Cancer
Giving Voice to Real Experiences

Sword of Damocles

About 18 months after finishing treatment, two years since diagnosis, I start to have worrying symptoms of tightness in my chest and anxiety that the cancer has spread. I have a nightmare:

I’m talking to the oncologist telling him that there’s no point in taking these drugs any more, I’m dying anyway, I’m crying, telling him I’m dying over and over again in between sobs. I wake up to hear the cat crying – who does die a couple of months later…

The year brings slow improvement and I do get better at managing myself, with my energy levels steadily coming back but so gradually I can only see it in retrospect. In February that year, after talking with my consultant and GP, I stopped taking the Arimidex. I’d been taking it a year and my consultant agrees that it’s of limited value in my case. I’m relieved when, quite quickly, some of the symptoms (like joint pain) are reduced or disappear, but disappointed that it has little or no impact on the fatigue. I had hoped that maybe the Arimidex was causing the fatigue and that when I stopped taking it my energy would return.

My follow up checks with the oncology team often leave me feeling low. I’m usually anxious for a few days before the appointment, worrying that they will find a recurrence, then relieved when that’s not the case.  I always report back on the fatigue too, hoping for something if only reassurance. This usually isn’t forthcoming as my diary notes after the February appointment:

My check up on Tuesday left me feeling really low. I wept buckets a few days later with Liz, telling her about my lack of energy and how the oncologist just couldn’t bring himself to say the words I wanted to hear “this is normal for some women” instead he says things like “we don’t know why some women bounce back and some don’t” and “you’re only just below average”. Why aren’t these statements enough for me? He also says that the emotional and psychological impact is not to be underestimated. Does he mean it’s all in my head? I know I’m depressed but surely its normal to be depressed when you’re knackered all the time? But maybe the depression is causing the exhaustion? My GP has suggested anti-depressants. I’ve stopped taking the Arimidex, to see if that has an impact. The oncologist thinks its unlikely but when I asked my GP if she thought that having oestrogen stripped from your body would have an impact on energy she said something like “I would think so”. So we’ll see if not taking that makes a difference. I’m not sure about the anti-depressants. It would be good to have a year or two without any drugs, to see what my body feels like when it’s left to its own devices.

I ask for, and get, a referral to the psycho-oncology team. I have six sessions with a lovely therapist called Carolyn, who helps me to analyse how the way I think has an impact on my mood and energy. However we come to a point where it seems that all is left to talk about is the fatigue and that’s not a psychological problem – I feel much clearer about that as time goes by, and with Carolyn’s help I re-assess the depression, seeing it now as a normal reaction not a clinical problem. As well as this, Dr Young suggests I have a chest and abdomen CT scan. I told him about the tightness across my chest, about feeling anxious that the cancer had recurred, and he thought it would probably help put my mind at rest. Which it does when the results come back, No Evidence of Recurrence being the words all cancer patients want to hear. However, going through the process (another trip to Christie’s, sitting in waiting areas in a dressing gown, drinking nasty tasting liquid, more x-rays zapping my body, waiting for the results) also raises the levels of anxiety and I end up wondering about the value of it. However there is no evidence of spread. I need to let go of the fear that it had gone into my lungs, and be thankful for this.

Looking back, I think this period was a real low for me. It was sinking in that I had a longer-term problem with the fatigue, I felt the ‘sword of damocles’ hanging over me frequently (fear of recurrence) and I was still finding day-to-day living difficult. Terry was still ill, hadn’t worked for nearly a year, and had a bad relapse around this time. I felt bad for not having much sympathy for him. When I tell him that I’m being referred for a scan, he says ‘one more thing to get anxious about’. I’m cross with him at the time as I’m hoping it will set my mind at rest, but he ends up being right, it does raise our anxiety levels both going for the scan and waiting for the results afterwards. Its also true that it did set my mind at rest to have the scan when the results came back “no evidence of recurrence”. Our lives have become too small, with too much focus on our health problems and not enough contact with other people.

One day, a couple of days after the scan, I had a sort of panic attack on the bus coming home from town. I’d overdone it again, spending the morning busy in the garden, both working on it and planning improvements, going straight into town to meet a friend and get a haircut, which was too much for me. The bus driver on the way home was driving too fast, it was hot and crowded, and I had to talk myself through it – doing breathing exercises to stay calm until I could get off the bus. Things like this didn’t happen to me, I was a strong and capable woman, so when I found myself feeling vulnerable it freaked me out. When we get the results of the scan the letter from the oncologist to my GP also says that “she is struggling badly psychologically”. I feel cross and upset but he’s right, I am still struggling psychologically and wonder how many other people do, and whether others are better at putting a brave face on.