Fatigue is being tired – physically, mentally, and emotionally. It means having less energy to do the things you need or want to do.
I feel guilty for feeling tired. I feel guilty for having a headache. I feel guilty for complaining that I am having a headache. I feel guilty for going on medical leave (because I know my colleagues will have to cover my duties). I feel guilty resting while everyone is working. I feel guilty when I could not focus and took a longer time to complete tasks. I feel guilty when I had to cancel appointments because I could not keep my eyes open. I feel guilty for not wanting to engage in a conversation because it’s exhausting to talk. I feel guilty for not contributing as much as I should to the organization which pays me and feeds the family. I feel guilty for choosing sleep over meetups with friends and relatives. I feel guilty when I get an energy boost and decided to have a jolly good time with the dogs and the children instead of doing work.
Many many more guilt moments…
So I googled and read up, hoping to find some explanations if anyone asks, “Why are you always feeling tired?”
Here’s what I gathered from the American Cancer Society website:
Cancer may cause symptoms like fever, extreme tiredness (fatigue), or weight loss. This may be because cancer cells use up much of the body’s energy supply, or they may release substances that change the way the body makes energy from food. Cancer can also cause the immune system to react in ways that produce these signs and symptoms. Sometimes, cancer cells release substances into the bloodstream that cause symptoms that are not usually linked to cancer. For example, some lung cancers make hormone-like substances that raise blood calcium levels. This affects nerves and muscles, making the person feel weak and dizzy.
The fatigue that comes with cancer, called cancer-related fatigue, is different from the fatigue of daily life. Everyday, normal fatigue usually doesn’t last long. It often gets better when you rest. Cancer-related fatigue is worse and it causes more distress. It’s not the tired feeling people remember having before they had cancer. People describe it as feeling weak, listless, drained, or “washed out.” Some may feel too tired to eat, walk to the bathroom, or even use the TV remote. It can be hard to think, as well as move your body. Rest does not make it go away, and just a little activity can be exhausting. For some people, this kind of fatigue causes more distress than pain, nausea, vomiting, or depression. Cancer-related fatigue can differ from one day to the next in how bad it is and how much it bothers you. It can be overwhelming and make it hard for you to feel well. It can make it hard for you to be with your friends and family. It can make it hard for you to do things you normally do, including going to work.
Many people with cancer say fatigue is the most distressing side effect of cancer and its treatment – it can have a major effect on a person’s quality of life. Fatigue is the most common side effect of cancer treatment, and it often hits without warning. Everyday activities – talking on the phone, shopping for groceries, even lifting a fork to eat – can be overwhelming tasks.
So my friends, pardon me if I had come across to you as unfriendly, or distant. I am really just feeling very tired.
I’ve never had a headache that lasted this long – past 3-4 weeks. It feels as though I’m constantly wearing a kid’s helmet on the head. Tight. A pressure headache?? A tension headache?? Migraine?? I googled – and from one website to another, it brought me to a page that described my kind of a headache – it says “it is common (40%) for lung cancer patients to develop brain metastasis….” At once, my mind was all a blank, and I could feel my body limp. Moreover, Dr Chan did suggest a brain scan to rule out brain Mets.
The butterflies were constantly fluttering inside me. It felt as though I am 18 years old all over again, waiting to collect the A-level results, feeling anxious – cos my future – my life depends on this examination’s outcome. The scan was for slightly over half an hour. Did all I could to keep still so that the images look clear, dressed up and was instructed to wait for the doc’s call.
Dr Chan usually texts very promptly after he sees my results, but this time he did not text. Two school of thoughts, 1) there’s nothing urgent, hence he did not text 2) something’s bad and he needed more time to decide how to break the bad news to me. And I refused to pick up the call to check in with him. Haha
I waited until the next day, and while I was anxiously waiting, a very concerned one was kept awake with anxiety too. If you are reading this, I’m sorry to have caused you this stress. Gomene!
Finally, at about 4 pm, Dr Chan texted. It read, “Brain scan clean.” Wooo… right at that instant, all gloom and dull suddenly disappeared from the cloud above my head. What a great relief!
The annoying headaches, at least I can now safely attribute them to the strain of the muscles due to the degeneration of the bones at the neck area. No cancer in the brain! Phew! I’m thinking, I should be able to make the 14 % who will survive more than 5 years.
You crept your way into my life so sneakily. Your presence startled me and yet, it took me more than a fortnight to come to accept that this is a reality. I was careless, to begin with. You made your presence felt all this time but I did not take much notice and brushed you off as one of those aches and strains from the routines I did at the gym. How did I even get your attention and allowed you into my life?
A sneeze or a cough would send me crouching in pain. I had seen the doctor and each time, I was given some medication – codipront and prednisolone to treat the cough. I was told that it’s asthma was prescribed the nebulizer and an inhaler. With these medications, the cough would ease a little before coming back again. However, the pain that struck like bolts of lightning from the back down to my legs remained. For four months, the sensation on the soles of my foot felt weird. It was as if I was walking on a layer of foam. Numbing yet painful. “Could it be a slipped disc? Did I pull a muscle?” I asked myself. I had been doing some work-out at the gym every morning before heading to work and continued to do so despite the pain, thinking that it would go away with more stretches.
I finally decided to check out this back pain with Dr. Terence Tan from the Pain Relief Clinic. He had seen D on several occasions previously due to his bad shoulder. D fixed an appointment for me. I described the pain as grueling and he suggested that I might have a slipped disc in my lower spine, affecting my nerves, resulting in the pain and numbness in my legs. He ordered an MRI. It was my first MRI. He told me that I would experience loud noises but I would be given earplugs so that the process is more bearable. It was indeed very noisy in the MRI room. Cold and noisy. Halfway through, I was pushed out of the machine. “Finally, it’s done!”, I thought. Instead, the nurse told me that they needed to inject a colored solution so that the doctor could read the MRI more clearly.
Fifteen minutes later, I was out and D was walking towards me. I was about to check if Dr. Tan had informed him about the injection. I noticed that he looked somewhat off. He explained that Dr. Tan had ordered the injection and wanted to refer me to an oncologist immediately. For that brief moment, I could not recall what an oncologist does. “For what?” I asked. “He saw something on your spine,” D said. Then I remembered, an oncologist treat cancer patients.
“There is a mass on your sacrum bone. It is pressing on your nerves and that caused the pain and numbness on your back and legs,” Dr. Tan said. “I cannot tell what it is, but I will refer you to one of my classmates. He is one of the top oncologists and he will be able to give you better advice… it might be tuberculosis,” he tried to reassure D and I. For the first time in our many years together, D looked very worried. I was given an appointment to see Dr. Daniel Chan the next morning. I went to work as usual and applied for time off. I was at Dr. Chan’s clinic at 9 am and he arranged for a PET scan immediately. He told me that the MRI did not look good, but he did not rule out it might be tuberculosis. I went for my PET scan as scheduled and was done by 3 pm. I was hopeful that it is definitely a case of tuberculosis. I was more worried thinking about the repercussions – how tuberculosis will affect the people whom I worked with. As D and I were on our way to pick up the little one for her piano lessons, Dr. Chan called. He instructed me to head to Gleneagles Medical immediately to see a thoracic and cardiovascular specialist, Dr. Su Jang Wen. He warned that my heart was being compressed by quite a large volume of liquid and that it could fail anytime. So D dropped me off at Gleneagles and sent the little one for her piano lessons before coming back for me.
I went up to Dr. Su’s clinic. The doctors are good friends and had shared the MRI images via texts. Dr. Su looked at the images and then turned to me. “Is anyone with you?” he asked. I told him I came on my own and I am alright. “You have hundreds of nodules in your lungs and windpipe,” he said. “This is cancer. You have lung cancer,” he said. I was officially diagnosed with cancer – Stage 4 non-small cell lung cancer on 7 July 2016. Cancer did not mean anything to me at that time. I was not scared. I listened to the different treatment possibilities. Dr. Su arranged for a surgery to drain the liquid around my heart and performed a biopsy. Reality only sank in when the pain from the surgery overwhelmed me. Every breath felt like a dagger piercing into my heart. Morphine was my best friend.
I was discharged and rested at home. The thing about resting at home was that it gave me time to think …. and google. I started googling about lung cancer and the survival rates – 4% survived past 5 years. “How much time do I have left?” I asked myself. Dr. Chan had refused to answer this question. I wish he would. Then I could at least plan what I want to do the rest of my remaining time. I could tick off my bucket list. These thoughts saddened me. I thought about not being around for my children’s graduation. Not around when they face BGR issues and needed to talk with me. Not being around when they feel unwell. Some days, these emotions cripple me and I will not be able to function. Some nights, I cry to myself while watching the children sleep. I missed the old me. This goes on, but the cycle becomes less frequent. I’ve learned to manage these negative emotions and have also come to realize that it is easier to find joy in this new me when I stop missing my old self.
How having cancer looked like, May 2016
How having cancer looked like, June 2017
Today is 30 Sept 2017. I just had my second PET scan. Iressa has done its job well. The tumors have shrunk. The back pain has become much more manageable. There’s no more numbness in my legs. It feels as though I have recovered. I am able to run and swim. The median efficacy period for Iressa is about 10 months before it stops working. It’s been 14 months for me. I am thankful for the past 14 months. Despite the periods of down, I am glad that I did not allow cancer to stop me from living the now. I continue to go to work, I continue to plan my travels – striking off some from the bucket list. I caught the northern lights in Tromso, rode a sled with the Huskies, hugged a koala bear, patted a kangaroo with a joey in her pouch, cycled in the countryside of Matsumoto. There is still so much more to do! My children and I are now planning for our year-end trip to Hokkaido again, as promised. Looking forward!
Hokkaido, Japan is one of the most memorable trips I had with my kids. We decided that we should visit during winter. We set off for a ten days trip to Sapporo and Niseko. The kids saw snow for the very first time. They experienced snowfall for the very first time. The excitement and joy were written all over their faces. Snowball fights, build a snowman and make a snow angel, things they never did and could only dream of coming true.
I got the flight tickets really early, in August via Cathay Pacific Airlines, transiting Hong Kong. Tickets were really cheap. I remembered paying only $600 for each ticket. It’s most definitely a steal. That was in 2015. The exchange rate was not too bad as well, almost one to one.
We took an early morning flight to Hong Kong and waited for our next flight to New Chitose Airport. Unfortunately, the flight was delayed for more than 2 hours. The kids were exhausted. Eventually, we got on the flight and arrived safely in Japan. The kids were famished by the time we arrived.
I was told that there would be no more chartered buses to Niskeo for the day, the next bus will only come the next day. With the three in tow and heavy pieces of luggage, we decided that we will take our own public transport to Hilton Village, Niseko. It’s ONLY 4 – 5 hours away. As we were all in a foreign land, we were up for it and eager to explore. We took the escalator down to the JR station at New Chitose Airport. “Oooooooo.. cold!” the kids turned and looked at each other and laughed. I realized that they were not dressed warm enough. We opened up our luggage at the train platform and started pulling out our warm clothing and piling them on. The plan was we had to take the JR to Sapporo Station, then change a train to Kutchan and then another train to Niseko station before we can hop on a shuttle bus to the Hilton Village.
By the time we arrived at Niseko station, it was past 11 pm. The girls were suffering from motion sickness after the many train rides. One by one, they threw up. It did not help that the weather was at -4 degree Celsius and the shuttle bus service to the Hilton Village has stopped operations. We looked at each other, all weary from the traveling, decided that we should hail a cab. Thankfully, there was a cab station just outside the Niseko JR station. We dragged our heavy pieces of luggage across the slippery and quiet road and waddled into the cab station.
It was already midnight. We approached the cab station master and requested for a cab to take us to our accommodation, 15 mins away. In my mind, it should not be too difficult to get a cab. It is, after all, Japan, one of the most efficient countries in the world. To my horror, the cab station master told me the earliest cab would arrive only at 2 am! In my bits and pieces of Nihongo, I pleaded with the cab station master to do his best to get us a cab as soon as possible. Meanwhile, the girls were feeling nausea and I was feeling helpless. I am thankful for my boy. He remained calm and helped the girls with their pieces of luggage. We waited for about half an hour before the cab station master came out of his office to inform us that we were lucky and he found us a cab. That was the happiest moment of our lives! We gleamed and could only think of the comfortable beds and hot bath awaiting us at the hotel. We managed to check in close to 2 am. The kids were too tired to take their bath, they changed into their pajamas and jumped straight into bed. Within minutes, I could hear their little snores.
I woke up to this beautiful sight of Mount Yotei!
I woke the kids up and got them ready to explore Niseko town. The son wanted to stock up some snacks after breakfast at the supermarket. The girls were well-rested and raring to go. We had our breakfast at the restaurant and took the shuttle bus to small town, where we were the night before. We went to the supermarket to stock up some snacks and had our cravings for Sapporo ramen and Hokkaido ice-cream satisfied before heading back to the village.
It started snowing in the afternoon and the kids got all excited. They wanted to get out there to play. We were at Niseko just before the skiing season, so it felt like there were only us at the resort. The kids loved it that they had the whole place to themselves. They rolled around and covered themselves in the snow.
They got tired and finally settled down to watch the sunset. I smiled and thought to myself, “this must be one of the happiest days of their lives”. Winter days are short. The sky got darker and we went back to our room. The kids got their dinner and took their hot bath. They were turned on the TV and were all ready for bed. “Hibernate mode”, they said.
They were comfortable in the room and I headed for the outdoor onsen. It began to snow again, but it did not feel cold. Just warm and relaxed.
The journey to Sapporo was less of a hassle because we knew what to expect. We hopped on a bus to Niseko station and took the JR to Sapporo Station. From Sapporo station, we took the underground walkway to Susukino Station, where our hotel is – Mercure Sapporo. The toughest part of this journey back to the city was lugging the pieces of luggage up and down the stairs of the stations (Niseko station, is a small train station and there are no elevators). I am thankful for my son. It was only then that I realized that my precious son has grown up.
The first thing we did after we checked into our hotel was to look for food. The children were obsessed with the Lawson and Family Mart convenience stores. Before we head out every morning, and before we return to the room in the evening, we had to patronize Lawson or Family Mart. We combed through Pole Town and Tanoki Kuji Shopping Arcade. We went to the White Illumination Christmas market at Odori Park and had one of the best chicken thighs ever. We had the fabulously rich and warm Hokkaido milk while the little one skipped to the rhythm of the Christmas carols playing in the background – and fell on the icy ground.
Tanuki Kuji Shopping Arcade
Little one dancing to the Christmas carols
Best chicken thigh ever!
What we spent on
We visited our favorite pet shop and played some games at the gaming arcade. We took a cab to the Shiroi Koibito Chocolate Factory and had very good creamy ice cream. We had plenty of sashimi and good food. We watched a game of ice-hockey at the stadium which we chanced upon while looking for an ice-skating rink. We had our Bakes cheese tarts, Potato Farm chips, and the popular corn chips along the way.
The kids missed the snow play in Niseko. They were talking about the fun they had and asked if we could take a train back to Niseko. After googling for an alternative, we decided to head for Mount Teine, just about 45 minutes away from Sapporo. We took a cab up to the ski resort. The children did not want to try to ski, instead they decided to take the sled. We spent the whole day sledding up and down the ski slopes, with them falling over their sleds, screaming their lungs out and all having a good laugh.
Good times passed so quickly, the ten days whizzed past us. We had a very jolly good holiday. Japan has always a special place in my heart, especially Sapporo. The kids asked to visit again. I promised them. We will be back, I am sure.
My name is Wonder and I have 3 beautiful children. They are the loves of my life. I have decided to keep a journal of my life, to leave behind footprints for my children when my life journey ends. I want them to be able to still “hear” me and remember me.
“Turning feelings into words can help us process and overcome adversity”.
After having read the book Option B – Facing Adversity, Building Resilience And Finding Joy written by Sheryl Sandberg and Adam Grant, I am encouraged to start journaling. An avenue to manage my emotional and mental state of health so that I can walk this life journey with more confidence whilst living with cancer. Studies by psychologists have shown that a reflection process will help one learn to be kinder to oneself – cultivating self-compassion. Reflecting on my life, unpacking the events and emotions through writing and then coming to terms with them.