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“Doctor, why am I always tired?” “Why do I continue to feel tired even though I completed my chemotherapy a long time ago?”

These are common complaints we hear in oncology practice. If there is one symptom that can’t be objectively measured, but affects almost all aspects of cancer patients’ lives, even after recovery, it is cancer-related fatigue.

Distress from cancer fatigue is real. Up to 90% of patients treated with radiation and up to 80% of those treated with chemotherapy experience fatigue.

Fatigue is the most common side effect of many cancer therapies.

It is a debilitating symptom experienced by many patients as a consequence of the cancer itself.

It is a significant feeling of tiredness, weakness and lack of energy, and is distinct from that experienced by healthy people.

The experience lasts for months, and even years, following completion of treatment, creating considerable psychological distress and has a negative impact on patients’ quality of life, including self-confidence, social interactions and intimacy.

In addition, it imposes a significant financial burden by affecting job responsibilities or limiting a patient’s ability to work.

It also disrupts family dynamics as family members adjust their schedules to provide additional care for affected patients.

To gather further insights into this issue, two cancer survivors share their experiences with cancer-related fatigue through a few directed questions.

Mrs K is a homemaker and has two children. Ms H is a professional with four children.

Have you experienced cancer-related fatigue, and if you have, how do you differentiate it from tiredness?

Mrs K: Yes, definitely. Tiredness is something that we can overcome with just a bit of a rest, and is more of a casual type of thing to most cancer survivors.

Fatigue, on the other hand, is something very different. It hits you like a stone wall once your body is trying to recover after all the chores are done and family errands or business pursuits are seen to.

Your bones ache, your head is heavy and your back’s yearning for that soft bed in which to curl into for the longest of time.

Fatigue is not something you can put away in a closet – out of sight and out of mind. It usually overstays its presence; bearing down on you despite all the “rest” you give your body.

With fatigue, one almost has to take a mandatory lie-down once in the morning and then once in the afternoon, just to store up a supply of energy for later.

Ms H: Oh yes, cancer-related fatigue is real. It is not an excuse to look for sympathy.

After the initial shock from my cancer diagnosis, I had surgery to remove the tumour on my breast and lymph nodes.

After surgery, other than the heavy feeling in my arms after lymph node removal, I felt fine.

It was not until I underwent chemotherapy sessions that fatigue started to kick in.

After each of my chemotherapy sessions, I went home and slept for a good three hours. My energy level was only enough to last me until midday for the subsequent one week for each chemo session.

I will often have to nap, or on days that I don’t nap, I will just have to rest and do just the bare minimum. Preparing my own meal was exhausting – I needed a one-hour nap or rest before actually cooking the meal.

It is different from the usual tiredness that is usually short-lived. I was too tired to even sleep. I had sleepless nights, which made me even more tired the next day.

Were your spouse and caregivers aware of the problem?

Mrs K: Often, your caregivers or loved ones don’t even think you have any tiredness at all, let alone fatigue. Just like Hurricane Irma, I personally feel tiredness is a category below fatigue.

This is often the dilemma faced by many cancer survivors who have undergone radiation and chemotherapy. How do we make people understand that fatigue is real?

Ms H: I am lucky that my family, caregivers and close friends are aware of the fatigue I am facing. I guess, at least for my family, this is not the first time they have cared for a cancer patient as both my grandmothers and aunties have had their share of fighting cancer too.

I get a lot of assistance from them, from caring for my children to getting the groceries and ensuring I have food on the table… all I had to do was rest and recover.

I can’t say the same about people out of the circle as they usually see me on my “good days”.

Those are the days when I am feeling a little better and treat myself – going shopping, sight-seeing or socialising. Hey, a cancer patient needs to feel a little sense of belonging too and we want to feel normal.

But they take it that as we can go out and have a laugh and not just rest, that we are fine and we are not fatigued.

Why do you think this issue of fatigue is not really understood?

Mrs K: I’d like to think that one of the reasons caregivers don’t “see” a cancer survivor’s fatigue is because the survivor handles everything with a little “panache”, no matter how fatigued she is.

I am certain many breast cancer survivors agree with me on this. Some have to go through treatment more than once in their lives when they face cancer relapses.

Ms H: I think it is because we always portray our positive selves. People are always telling me that “You look good” and “You don’t look sick”.

And as I mentioned, people usually see me on my good days. Somehow when I meet people, I do feel happy and I guess it shows and this masks the fatigue.

Having company actually puts my mind off my illness and weakness. But of course it has to be a positive vibe – any cancer patient knows that we want less negativity in our lives!

How does cancer-related fatigue affect your daily life?

Mrs K: Cancer drugs do wear you down because of their toxicity and potency. From just being tired to full-blown exhaustion at times, thereafter a domino effect ensues.

When one’s fatigued, one’s most certainly not able to fully concentrate or focus on the task(s) at hand. Forgetfulness, panic and anxiety become more common in otherwise normal circumstances.

You make mistakes and your self-esteem plummets. When that occurs, stress creeps in, compounding the fatigued body, mind and soul.

Not everyone has the luxury of being a “lady of leisure”. Many still have to work 9-to-5 to not just make ends meet, but also to support their children’s education and to ensure they meet the astonishingly high costs of staying alive.

Rather than deplete the family’s finances, the thought of stopping treatment altogether has crossed many a cancer survivor’s mind.

Some drugs cost an arm and a leg, especially if one is an advanced breast cancer survivor.

Ms H: After completing chemotherapy and radiotherapy, the fatigue does not go away. However, it improves day by day.

I started working three weeks after radiotherapy. Although I did not drive to work, I was exhausted after a 9-to-5 job.

Normal working hours that we take for granted as a healthy person prove to be a burden for someone with health issues.

It took me two weeks to get accustomed to my daily routine. I informed my oncologist and was prescribed relaxant medications.

Though it did not help immediately, it helped me to sleep. With better sleep, I was determined to improve fatigue management.

I engaged a yoga instructor to help me achieve relaxation. As she knew my condition, we went at my pace, slowly, but surely.

I prayed and meditate; I picked up painting and colouring as a hobby, all to achieve a feeling of peace.

What is your advice to other cancer patients to help them cope with cancer-related fatigue?

Mrs K: Cancer is a huge baggage we all carry all the time. The fatigue is real.

Lest one forgets, fatigue compounded by stress could well add to possible recurrences and progression of cancer.

Most of the time, the cancer survivor gamely and bravely puts aside his or her needs to see to others’ first.

And so you push and push, but in the recesses of your mind, you know your body will (most likely) retaliate in one way or another later because you’re just not listening enough to it.

It’s easy to just make a sweeping statement to say, “Well, then, just rest up!”. But cancer survivors know it’s a lot more than that.

It needs societal acceptance of what it actually is. Not a negation. It’s what we as cancer survivors go through in our journey of just wanting to stay alive.

Ms H: One of the most important factors is to ensure that we eat a balanced diet.

Most cancer patients have poor appetite, especially during the first week of each chemo cycle, but we must make ourselves eat as much as we can, even if it will take us an hour to complete our meal.

Some survivors I spoke to take frequent smaller meals, but I take the usual three main meals. It does not matter as long as we eat.

Another factor is to accept any kind of help offered, as you will need it. I was blessed to have my parents taking care of my young children while I was on treatment.

Get cleaners to help with housework or preparing meals when you are at your lowest point. I learned that I had to let go of being in control and let others run the show.

As for resuming work, talk to your company if you can slowly ease back to work. I started off with working from home a few hours a day, a few days a week, and then back to the office for a fulltime job.

Some companies would think that since you have finished your treatment, you are completely fine.

Let them know that yes, you have completed treatment, but no, you are not completely fine yet as there are side effects from the treatment that still linger. You need more time to get back on your feet.

For health professionals managing cancer patients, complaints of cancer-related fatigue should be taken seriously. A complete understanding of the psychosocial impact and consequences of their patients’ cancer-related fatigue is essential to overcoming obstacles to optimal evaluation and treatment.

Dr Mastura Md Yusof is a consultant oncologist.

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