{"id":6632,"date":"2021-06-01T16:43:16","date_gmt":"2021-06-01T14:43:16","guid":{"rendered":"https:\/\/untire.app\/experiences\/marloes\/"},"modified":"2024-05-06T11:15:29","modified_gmt":"2024-05-06T09:15:29","slug":"marloes","status":"publish","type":"page","link":"https:\/\/untire.app\/en-gb\/experiences\/marloes\/","title":{"rendered":"\u2018Make sure the sun shines as much as possible\u2019 – Marloes"},"content":{"rendered":"
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Appointment after appointment failed to reveal anything. Finally, a neurologist at the university hospital where she worked told her that she had LEMS, an chronic, incurable muscle disease.<\/p>\n
Because of the disease, Marloes has limited energy and trouble walking. \u2018But the fatigue that cancer causes is very different.\u2019[\/vc_column_text]
She then had a serious conversation with the lung specialist. \u2018He told me that there were spots in my lungs that shouldn\u2019t be there. He also said that if it was cancer, it would be incurable.\u2019<\/p>\n
It didn\u2019t turn out to be lung cancer, but metastases from a myoma, a benign fibroid, in her uterus. \u2018My 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 \u2013 and they\u2019re still shrinking.\u2019<\/p>\n
Lung cancer was suspected again a few years later. \u2018I had a lump in my neck, which was surgically removed. It turned out to be malignant \u2013 a metastasis of lung cancer. But they couldn’t find the lung cancer. Maybe my body had taken care of it already?\u2019[\/vc_column_text]
She learnt the hard way that there is absolutely no comparison. \u2018My 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\u2019m completely exhausted.\u2019<\/p>\n
A friend mentioned the Untire app to her and it has helped her enormously. \u2018The 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\u2019t help \u2013 you have to accept it.\u2019[\/vc_column_text]
Another resource that she finds useful is the Facebook peer group where Untire users share their stories and experiences. \u2018It\u2019s difficult to explain to others what it\u2019s like to be \u2018bone-tired\u2019. It\u2019s nice to meet people who know exactly how you feel. I\u2019m still a long way from where I was before the cancer treatment. I\u2019ve had to give up a lot, but I realise that I need to let go of the idea that I will just wake up one day and my fatigue will have completely disappeared.\u2019<\/p>\n