‘Make sure the sun shines as much as possible’

Marloes has an extensive medical history. She put her heart and soul into her job as an oncology nurse. One day, she noticed that her legs started to feel peculiar. ‘I was losing strength in my legs. It started in my ankles and gradually moved up to my thighs.’

Appointment after appointment failed to reveal anything. Finally, a neurologist at the university hospital where she worked told her that she had LEMS. ‘An incurable muscle disease that you can grow old with.’

Because of the disease, Marloes has limited energy and trouble walking. ‘But the fatigue that cancer causes is very different.’

Marloes was warned by her neurologist that half of LEMS patients develop lung cancer in the first few years after their diagnosis. He advised her to have a CT scan. ‘I collected the results during working hours, not suspecting anything was wrong at all… I didn’t have any symptoms.’

She then had a serious conversation with the lung specialist. ‘He told me that there were spots in my lungs that shouldn’t be there. He also said that if it was cancer, it would be incurable.’

It didn’t turn out to be lung cancer, but metastases from a myoma, a benign fibroid, in her uterus. ‘My uterus and ovaries had been removed four years earlier. But the metastases turned out to come from there after all. Thanks to medication, the metastases shrank – and they’re still shrinking.’

Lung cancer was suspected again a few years later. ‘I had a lump in my neck, which was surgically removed. It turned out to be malignant – a metastasis of lung cancer. But they couldn’t find the lung cancer. Maybe my body had taken care of it already?’

To be on the safe side, Marloes was treated as a lung cancer patient and given four intensive chemotherapy sessions after the operation. Her oncologist told her that she might get tired. ‘I was already used to fatigue because of my muscle disease and so I thought it wouldn’t be too bad.’

She learnt the hard way that there is absolutely no comparison. ‘My muscle disease mainly gives me fatigue after exercise. On the other hand, the cancer fatigue can be caused by physical and mental exertion as well as lots of other stimuli. Sometimes, you switch off completely. If I talk to someone for an hour, I’m completely exhausted.’

A friend mentioned the Untire app to her and it has helped her enormously. ‘The app has a lot of useful information, though I already knew a lot because I had learned to cope with fatigue related to my muscle disease at the rehabilitation centre. Kicking and screaming doesn’t help – you have to accept it.’

She does benefit from meditation. ‘I listened to two more today. I’m at my best in the morning and I do everything in stages. I always have a lie down at lunchtime. Meditating makes you consciously relax for a little while. It helps me recharge my batteries a little to get through the second half of the day.’

Another resource that she finds useful is the Facebook peer group where Untire users share their stories and experiences. ‘It’s difficult to explain to others what it’s like to be ‘bone-tired’. It’s nice to meet people who know exactly how you feel. I’m still a long way from where I was before the cancer treatment. I’ve had to give up a lot, but I realize that I need to let go of the idea that I will just wake up one day and my fatigue will have completely disappeared.’

She writes a lot about herself in her blogs (https://marloesdewit.blog), which she hopes other cancer patients find useful. She usually manages to keep the tone of her blogs light, despite everything she has been through. Marloes laughs, ‘There are lots of things I can’t do any more, but I’m not unhappy. I try to think about all the things I can still do but in a different way and to make sure that the sun shines as much as possible.’