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In 1985, just one year after being diagnosed with pancreatic cancer, my father passed away, aged 63. As a doctor he knew right from the diagnosis that he wouldn’t survive. My mother, two sisters, two brothers and I surrounded him with all the attention, love and support he needed. My father always kept a diary and in one of his entries he wrote that his illness felt like a stay in a foreign country. He was familiar with that feeling because he spent many years abroad working as a doctor in the tropics. I was 29 years old and working as a clinical psychologist. It was my first serious experience with cancer and for me it also felt like spending time in a foreign world. But during that year, it became more and more familiar, no matter how bleak the future seemed to be.

Two years later, in 1987, I started as a psychologist at the Free University Medical Centre in Amsterdam. That I would include working at the Oncology Department alongside my other tasks was self-explanatory. I provided care for cancer patients, their family and friends, with different types of cancer, young and old, with good and bad prognoses, both inside the clinic as well as in the outpatient clinic. It all felt very familiar. Later, in 2000, I became CEO of the Helen Dowling Institute, a fabulous and renowned psycho-oncology centre in the Netherlands. Until 2012 I combined my job as CEO with my work as a psychologist.

Over the last 30 years I have witnessed the enormous impact cancer has on the physical, emotional and social life of patients and their loved ones from different perspectives: as the child-of, the brother, the partner, the friend, the colleague and the psychologist. What have I learned?
I have come to realise that the essence of oncology revolves around the issue of ‘to be’ or ‘not to be’. This applies both literally and figuratively, for everyone dealing with cancer.

First, it applies to people who have been diagnosed with cancer. Sooner or later they will ask themselves ‘How long do I have to live? How long will I be here?’ Literally, ‘to be’, to live, because ‘not to be’ implies the end, death. It’s all about the quantity of life. Even when the prognosis is ‘reasonable’ to ‘good’. And when you still have time to live, however short that may be, sooner or later a second question presents itself – about the quality of life. ‘How do I want to live? How do I want ‘to be’ as long as I’m still here?’ ‘What do I still want (or do not want) to do’, that’s what it’s all about. Once they are confronted with cancer, people re-evaluate their desires and limitations. Figuratively, ‘not to be’ implies the absence of quality of life. People with cancer want ‘to be’, both literally and figuratively.

Second, it applies to everyone who works in oncology. ‘To be’, or ‘not to be’. Literally it means one should physically be present enough and also offer the best possible care. That’s the least you can do. At the same time you need to be present figuratively, by which I mean that caregivers should be ‘attentively available’ for patients trusted in their care. People with cancer go through an existential crisis and in my opinion they sense immediately when someone isn’t truly involved – whether they ‘are there’ or ‘not there’.

Only when caregivers are truly ‘there’ they can genuinely help their patients ‘to be’ in the strange unknown country. Literally and figuratively

It’s probably safe to say that just about everybody knows that having cancer is tough. It’s a life-changing experience. When you are diagnosed with cancer, your life screeches to a halt and you switch to survival mode. However, what most people don’t seem to know is that life after cancer can be just as exhausting. One of the most common issues former cancer patients have to deal with is cancer-related fatigue (CRF). This long-lasting form of fatigue affects 30 to 40% of all (former) patients, so you are not alone in your struggle. Even though this is such a large scale issue, not that much is known about cancer fatigue. Many patients don’t know that it’s ‘a thing’ and more or less accept it as part of the disease.

CRF is so much more than normal fatigue

Everybody gets tired at one time or another. Cancer-related fatigue, however, is not ‘normal’ fatigue. It’s mental and physical exhaustion. It has a huge impact on every aspect of your life. It can kick in totally unexpected and rest or sleep doesn’t help to get your energy back. You may wake up in the morning, drag yourself to the shower, undress and… you’re exhausted again. This is a pretty common example of the severe fatigue you may be experiencing. CRF is different for different people though. If you feel in any way that you are abnormally tired or lack energy, talk to you doctor about it.

It’s important that you take action, because dealing with CRF can be incredibly frustrating. You want to do things, but you simply can’t bring yourself to do them. All of a sudden, your personal boundaries are easily crossed. This can be a pretty rough deal, not only for yourself, but also for your family, friends and colleagues. It may be hard for them to understand why you won’t come to a party, can’t cook for your family or why you’ve cut down your working hours.

What causes cancer-related fatigue?

If only there were one simple answer to this question. As if having cancer isn’t enough, it comes with all kinds of unpleasant bonus features, such as anemia, nausea, anxiety, lack of sleep and worrying. These side-effects won’t magically disappear once your treatment has finished, so both your body and your mind keep facing Olympic-sized challenges. You can imagine that all of these factors combined have a huge impact on your energy level. Who wouldn’t get tired?

Is there a solution?

Patients tend not to talk about their fatigue. Doctors often don’t ask about it. And even if it does come up in conversation, health care professionals are not always aware that CRF can actually be treated. This is a real shame, because cancer-related fatigue isn’t ‘just part of the disease’ and you don’t have to live with it forever. It can in fact be treated. Because a lot of factors may be contributing to your cancer fatigue, it won’t come as a surprise that treatment should be multifaceted as well. A combination of psycho-education, cognitive-behavioral therapy and physical exercise has proven to reduce CRF. In other words, knowing the mechanisms of your fatigue and how to respond to them is part of the solution. Staying active, even though you probably don’t feel like it, is the other part. Ask your health care professional about your options.