God, let me breathe.

I am crying out loud, my Heavenly Father, my Lord, my healer and my savior!

I am struggling. Struggling to breathe. Breathing is the most natural thing to do, when we are alive and healthy. We do not think about breathing, we do think think about how and when we breathe? We just breathe! It’s comes with the beautiful life that God gives.

I open my eyes every morning, I spend a good time planning my route to the toilet. To wash up and to pee and poo. It’s a huge project that involves at least 2 people. I need someone to help me to the makeshift wheelchair, another to push the portable o2 converter with me. So what’s wrong with my legs? Can’t I walk and sit on the chair? Can’t I walk to the toilet on my own? I thought to myself too. I can! But the aftereffect is what I cannot cope with. I am not paralyzed physically, but I am paralyzed by the breathlessness. Breathlessness takes a huge toil on me. Lung cancer too.

So Lord, Father Almighty, please continue to love me, and restore my health and heal me. You are my healer and I put all my trust in You. That you will do your magic on me tonight as I sleep, and heal me with your loving hands. In the name of the Father, and of the Son and of the Holy Spirit. Amen!

Rest is my fuel.

I’ve been reading quite a bit on Dyspnea and end of life palliative treatment for lung cancer patients. It seems like, from what I have read about dyspnea, it seems like a difficult condition to relieve especially for lung cancer patients. They introduced breathing techniques, oxygen therapy etc, but they do not relieve breathlessness at all. I get al breathless with any form of exertion (bend down to pick up my dog, pull up my pants, walk from my room to the living room etc) and so, I decided since 2 days ago, I shall assume bed rest position, so as to reduce the tendency to become breathless. Then I think through again, is this how end of life palliative care is about? Hmmm… am I already approaching end of life?

I am not sure if anyone knows what I meant by breathlessness. It is about you running 10km in under 45 mins, and after which u pant, and this panting doesn’t stop because no matter how much air u try to catch, there’s never enough to replace what was displaced during the run. And at that point in time, you can’t do anything, because all the energy is zapped away from your arms, lungs, legs and body, even your bowels become uncontrollable – you are on the brink of collapsing.

When I describe this to some of my friends, I get many concerned and well-intended advice. They asked me to try to regulate my breathing, slow it down, do some deep breathing etc… When I hear all these, deep inside my, i was shaking my head… they obviously do not know understand what I am going through. Sigh. And I pray that they never have to go through what I go through to understand.

So today is day 13 of cycle 1. My doc just texted and asked how I am coping. I described exactly and told him I prescribe bedrest for myself. I rest in bed 24/7 and I’m on oxygen support. I regulate my meal times and toilet time, so that I feel comfortable resting. How long will I need to go through this? I have no answers, neither does the doc. We do not know how this is going to unfold, but for sure we know that the chemo drug is taking effect – my hair is falling off in clumps. I do not feel particularly sad or overwhelmed with the hair loss… reason being I think I am more frustrated and affected by the lack of activity due to the inability to breathe. So hair loss, nah… it’s nothing at all.

As I am writing this. I begin to wonder if my doctor is thinking about how much quality time he can create for me – will chemotherapy help me achieve that? At least for now, that’s the only option . I’m actually forward to him sending a hospice nurse over to my place to help me get comfortable. At least I do not need to think about the breathless nightmare of getting to and from the hospital for chemotherapy treatment.

Till then. #letsgowonderluf

To end it all, with muah chee

Today is day 10 cycle 1/6. I am not getting any better, in fact, I’m feeling worse. Breathing difficulties is causing me so much pain and discomfort, and my rest position is always in bed. Heart race to 140 bpm and O2 falls to 85% when I go to the toilet. So yes, every movement is zapping a lot of energy away. I’ve been whiny and weepy, I cry at every thing, every discomfort, every thought. And I thought if I will be able to live past tonight. And if I do, I dread this same routine tomorrow.

But If I do not live past tonight, if the heart decides to fail me because it’s been overworked, will everything then fall in place? Will I be able to rest in peace? Will I become a spirit with unfinished business here? What then shall I eat as my last meal tonight? Will I want to have a wake? Will it be troublesome for my love ones whom I leave behind? Already they r saddened, do I want them to deal with such arrangements or would that constitute as a closure for them as well?

So many questions and so many thoughts, but there are no answers. I dunno what will happen tomorrow. But for sure, if chemotherapy does not improve my quality of life, (at least ease my breathing difficulties) then there’s no point continuing with treatment. After all, it’s terminal lung cancer. When it’s time to let go, we should know when to let go.

Then a thought pop into my mind… wouldn’t it be nice to enjoy a box of good old school muah chee before all that?

Fresh milk and cereal

Fresh milk and cereal always gives me a good feel. It’s one of those breakfast I will have whenever the family traveled. The kids will go for the bacon and eggs, I’ll go for my honey cereal and fruits and fresh milk. It’s comfort lots. Just crunching them and watching the kids eat and talk about everything under the sky, brings me so much joy.

This morning, I dragged myself off bed hoping to send my girl to school. I guess my dad sees that I am still not up to it, and insisted I rest in for the day. He decided to help me run the errands and buy some breakfast home. I sat across my little girl, watching her eat her coco crunch with milk. She asked me to test her with some Chinese vocabulary and she did it. She finished her food and got all the vocabulary done. She waved goodbye and told me she loves me before her grandfather sends her off to school. As she left, I said goodbye and stared at the cup of tea and biscuits in front of me. I asked myself, “when will this pain and discomfort end?” And when it does, “will this really be the end? Or will it be the start of a new journey?” “Will chemo kill me?” I have no answers.

The reason I started chemo was to reclaim my quality life, which cancer had taken from me. This breathlessness, the racing heart rate, the tiredness had crippled me for the past 2 months. In November 2019, I went from a able-bodied mother who brought the three kids traveling, to one, in Jan 2020 I had to rely on the portable oxygen machine to function. This change is too fast and drastic. I was not ready for this. The cancer is too aggressive and seems to be coming back at me with a vengeance. I have people come up to me and said,” you should not have gone for your trip in December… then perhaps it might not get so bad…” I’m glad I did not listen to any one who said that. Imagine the regret! At least I had my share of fresh milk and cereal and stories over breakfast with the kids during our holidays in Dec!

Well, I’m just thinking now, if there is a ever a chance again, any small chance again that I can be independent and travel freely, how nice it would be for the family to gather once again on a winter morning over a nice spread of breakfast for the kids, while I enjoy the conversations they have. I’ll enjoy every moment with my fresh milk and cereal. But this time, I’ll add some bit of Greek yogurt, honey and nuts for even better taste.

How am I doing?

Day 8 chemo cycle 1/6. Feels: extreme annoyance, weak

Every time my WhatsApp pops a message, it will be… “how am I doing?” As much courtesy as I would usually show, I don’t have that kind of bandwidth to display that now.

Truth is, I am obviously not fine. With this kind of question, what kind of response are you expecting? So what if I told you I am not fine, what can you do? Why should you know? How will you knowing this information help me? What kind of response do people expect?

Be kind and stop irking me. Stop asking how I am doing… Instead, it is more helpful if

1) Offer to buy some breakfast / tea/ lunch/ dinner over – just be around, no need for so much talk. U dun even need to be around actually. The last thing I want to do is to engage in small talk.

2) Offer to drop me off to the doctor for my medical appointment, and don’t ask me anymore questions about how I am feeling.

3) when you feel like I need a Cold press juice, just buy and offer it to me as dessert.

4) Arrange a back massage for me instead of asking me to arrange for one on my own

5) Stretch and massage my legs and help me move and gain strength

6) stop saying hang in there when you have nothing better to say to me, just give me some good Netflix series to binge on

7) offer to help in my home improvement project especially since I am not able to do so now

8) stop telling me to try this and that. Be practical, I just want good comfort food now.

9) stop telling me I am brave and I am your inspiration! This is the last thing I want to hear! It’s super annoying! I am not bloody brave! I did not plan to inspire anyone like this. I am left with no option! So stop saying things that dun make sense at all.

Pardon my tired soul

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.

Good night.😘

Photo by João Victor Xavier on Unsplash<<<<
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Finding joy amidst adversity

The saying goes…. “You do not know what you have until it’s gone. Or rather, you knew what you’ve had, just never thought you would lose it.”

Having cancer has caused much inconvenience and disruption to living life – all the insecurities you can ever imagine. Yet undeniably, having cancer made me think deeper about the meaning of life and made me appreciate the people around me even more.

A daughter

I have always been close to my family, the support from my mother, my sister, and my aunties have always been strong since I was young. However, I cannot say the same about the relationship with my father. Even though he stays with me, there is always this distance between us, which I never understood. I called myself the lesser favored child. I had tried to bridge the gap between us in the past, but I always ended up feeling hurt and unappreciated. Invitations to dinners and outings were usually turned down, and if he decided to come along, most of the time the outings will end up with him getting angry at something and someone. I gave up fixing this relationship and was resigned to living my life with a father who is constantly angry at me.

This is now a thing of the past.

I have to thank cancer for helping me mend this relationship with my father. After my diagnosis, I have a less angry father. We are now able to carry out a decent conversation without anyone of us getting into a fit. He tells me about his experiences during his dialysis sessions, the friends he made, and how some of them annoyed him. He shared about the healthcare workers at the dialysis center, describing them as selfless individuals who took care of the patients. On some days, I shared with him the incidents I encountered at my workplace – about how stress at work had turned good friends into strangers and how frustrating it was to work in the company of negative people. We started talking and hearing each other out with patience. This, I feel is priceless. Even though I lost the blessings of good health, I found my father instead. For that, I am thankful.

A mother

My three children – they are the most precious beings in my world. Maximus is the eldest, Melody is the middle child and Melivia, the baby. The three of them have very different characters. Maximus is a sweet and loving child even though he can be impatient and a little messy. He is very witty and often comes up with the quirkiest ideas. Melody, she is a steady and calm worker. When given a task, she does her best to deliver. She’s one very down to earth and patient girl. Melivia is a mix of the older two. She’s got the sweet and loving of Maximus and the steadfastness of Melody. She speaks of things matter of factly and does not mince her words. She’s got the drive to succeed in what she sets out to do.  All three are special in their own ways, and they grow up like all siblings do – they quarrel, fight and laugh together.

I am fortunate to have the support of a helper who looked after them and the household chores when I was at work. I would be working in the day, and only get home just in time for dinner. And by then, I would be exhausted and the kids, getting ready for bed, leaving very little quality time with them.  Every weekend is spent with the children, trying to tire them out so that they will go to bed early, and I get some me time. I’ll drive the children out to the parks, shopping malls, reservoirs and the playgrounds and I’ll usually bring my helper along. The kids would have a jolly good time and we will share some precious moments talking with each other before I tucked them into bed. After which, I’ll either do some work, spend some time watching programmes I’ve missed or I’ll fall asleep with them.  Those days were hectic when the kids were still very young – struggling to strike a balance between being a mother and work commitment is not easy. But, I managed somehow.

Now that the pace at work slowed down, I am able to spend more time with the kids. They are no more toddlers or little ones. They are three very different teenagers. Seemed almost like cancer knew that teenagers are tough to manage and arranged this opportunity for me, arranged for cancer to strike at this moment so that I can spend more time with them to understand them during their adolescence years. Through the past year, I’ve spoken about the research and treatment plans for my condition with the children. And they, knowing and understanding my condition, are now more thoughtful towards each other, towards me. We have conversations over the dinner table and talk about everything under the sky, we discussed and laughed at each other’s silly ways and we sometimes squabble over little things – but all these are possible because, over this  period of time, we’ve learned to stop complaining, and start appreciating and treasure our pockets of time together, and that time with each other is not limitless. I figured we would probably take a longer time to realize this, if not for cancer.

Photo by Erik Odiin on Unsplash

 

The butterflies in the stomach…

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.

C is for ……

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. 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. 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!