Eels in Our Bathroom

So Andrew was admitted due to GVHD last month, and honestly it was scary as heck. He can barely eat and tired all the time. The docs and nurses said that our GVHD was considered “mild” which is reassuring…yet make me think if this is “mild” what would “really bad” look like. You know what? I don’t wanna know.

Anyway.

The beauty of seeking medical help in foreign country (we are in HangZhou, China) is no other than a cultural clash. For instance, being raised in a Dutch-Indonesian family means you speak with a polite tone… all the time. Probably why I have conflict-resolution problem. That is really different with Chinese-style of talking…which is equal with shouting in my head.

My point is, when we stayed in the hospital we have to share a room. Which means we got a roomie….yay.. *awkward silence*. It was pretty safe to say that we had some issues. For example, Andrew was a light sleeper while our roomie and his caretaker will have long, deep conversation (in our head: shouting match) at midnight. 

Fun times.

On our second week in the hospital, Andrew was coming out from the bathroom with a very serious face.

Andrew: Uhmmmm… don’t freak out okay?

Me : WHY???? *freaking out already*

Andrew : There is a bowl with some eels in the bathroom.

Me : What???? Like… alive?

Andrew : Yeah I heard like noises when I was in there. I think there’s four in the bowl. Probably our roomies pet?

So apparently you can bring your pet (or will-be dinner, as we found out a little bit later) in the hospital. Great. As we manoeuvre through our cultural clash, there are a couple of lessons that we learned in the process:

1. No one like a tell-tale. I made a mistake of asking the nurse to help translate to our roomies that we need the light to be off at night. He thought I was telling on him. I got a death stare afterwards. Not funny because I sleep, like, right there. He can slither one of his eel up my blanket at night and that would be scary.

2. Bribing works. Be on their good side. Help them if they can. Share your fruit baskets. If you have a good relationship with them, it would be easier to talk to them when you need something or asking a favour.

3. Try to understand first BEFORE you react. Sometimes things just can’t go your way. Keep in mind that whatever you or your “patient” is feeling or experiencing, your roomie probably feel that too. At one point, Andrew was placed in a ward where some people was attached to loud-beeping-heart-machine-support thingy. Of course that was a non-negotiable. We just have to suck it up and deal with it. Earplugs works wonder, by the way.

4. Don’t be afraid to ask. If they are too loud or if they did something that bug you, politely inform them and ask them to stop. You would be surprise how many “yes” you can get from a well-mannered request.

5. Take the first step if you can. One of my biggest pet-peeve is dirty bathrooms. Most of the time, I can’t control how our roomie in the hospital use the bathroom. What I usually do is set the standard. I cleaned everything, put out loads of toilet paper roll (while gesturing “please feel free to use them!”), buy nice-smelling hand soap and put a blue-thingy in the toilet. People tend to keep stuff clean if it’s clean in the first place. So, just do it.

If all else fail, ask the nurses to mediate for you. Especially when it comes to the patient well-being. For example, cleanliness is a risk for infection; so if your roomie is peeing everywhere you have to take action. For anything else that is ‘just’ annoying and don’t worth the fight: let it go.

Oh and here’s a picture of an eel. They are a horrible creatures to have in your bathroom. Just saying

Just (Don’t) Say It!

I love people. I look back on our journey so far and I know for sure that we would not be able to survive the journey alone. We were (and still are!) carried in so many prayers and acts of love.

But there are some comments that were, uhm…… interesting? (Insert cringe here)

If you are a cancer sidekick as well, I bet you can laugh with me. If you are not, well, just take a mental note of never saying this too people who are going through a cancer journey.

• It’s gonna be fine (in a dismissive way). No, it’s not. It’s tough and painful and sucks and sometimes it does NOT end well. Acknowledge our feelings and our journey. Understand that at times it’s okay not to be FINE (except if FINE is an acronym of frustrated, insecure, neurotic and exhausted then yeah…..)
• Maybe it’s time to forgive some people. What are you trying to say? That this cancer is OUR fault?  We are not saints and we know it. BUT SERIOUSLY? The next one is also a winner: 
• This cancer might be a warning for you to repent from your sins. Yeah, I do need to ask forgiveness for all the profanities I am about to throw at you. JK. LOL
• Stop eating meat/dairy/fish/chicken/non-organic fruit and veggies and make sure you cook everything yourself. Really? So what SHOULD we eat? And after days of sleeping in the hospital couch of course the first thing we want to do is cook a fresh, homemade meal! 
• Do you know how dangerous chemo is? There is this “natural” remedies that are “scientifically proven” better than chemo? Well chemo is poison and yeah …. *scurry away*.
• Have you asked for a second opinion? No, we just trust people. Hahaha. Of course we have! We went through denial too and we have asked for a gazillion opinions. Thank you very much. 

I asked Andrew and this is his list:

• Being pitied: Oh you poor little thing. No we are not poor nor little nor a thing. Encourage us and pull out our best character instead of making us feel like this little, sad person.
• Asked the same questions, over and over. Because yeah, after being nauseous through chemo; we definitely want to answer the same question 25 times. This is why Jesus created group chat, people. Please read our updates carefully. We love you (so much)!!!! 

Okay, okay, it’s not fair if I just focused on the “interesting” stuff. Here are the BEST thing that people say and do for as:

• What can I do for you? And they mean it! A friend said that to me and I called him at 10 pm at night when Andrew was running a horrible fever and he actually came! Another friend happily drive me at 5 AM to pick my mum up from the airport. FIVE IN THE MORNING PEOPLE! That is love.
• We are thinking of/ praying for you. Little texts and reminders that can pull you out from isolation and depression. It is amazing how cancer can detach you from the “real world”. 

Auds xx

Questioning Faith

This week is Easter week and I strongly feel the urge to write about this.

Since I met (and fall in love) with Jesus in the age of 13, Easter has always been my favourite time of the year - a week smothered in His extravagant love and grace.

I grew up in a Christian home and I do love Jesus wholeheartedly. When Andrew was diagnosed with AML, one of the questions that people asked me was this: How can you still believe in God when this happens to your brother?

My answer is always be: How can you not?

Yes. Cancer sucks; and there is so many other pain and suffering that are so, so horrible in the world that made my heart feels like its twisted like pretzels.

But in the midst of all these, all the pain and suffering in the world, how can you face this without believing that you are loved beyond measure by the One who created you?

We were meant for Eden. We were created to be loved and to have that "evening stroll" with Jesus (or for me it's gonna be sunsets at the beach. Can't wait!).

Humanity choose sin; and the wage of sin is death (Romans 6:23)

Jesus didn't come to fix us. We are beyond fixing. We are so broken and frail.

Jesus came to redeem us.

He came to give us hope. Hope for an eternity where there will be no more weeping.

I have no idea how people can walk a cancer journey without faith.

When I receive the news about Andrew's diagnosis, I was in so much peace it was ridiculous. Peace that trespasses all understanding.

Peace in knowing that God's got this.
Peace in knowing that whatever happens we win - on earth or in eternity.
Peace in knowing that we are loved by God; the Maker of Heaven and Earth.

My understanding of pain and suffering can be sums up here:

Suffering is caused by sin. We all have sinned and lost His glory; but Jesus gives us hope. For for the future - here and in eternal perspective. He makes our journey on this groaning earth easier; by allowing us to live loved and whole. Without that hope, we will fear death. If not, death is simply leaving the party early - for a bigger party in heaven!  (stole the last line from my hero, Kara Tippetts who is now partying with Jesus)

So no, I won't lose faith. The truth is, I am closer to Him more than ever. I cling to His grace and His love everyday.

And His grace is always, always enough for me (us)

Live and Learn

No one can ever be ready for cancer. Heck, why would you be ready for cancer? Yes, you can have a secure medical insurance plan but nothing could ever prepare you for the train wreck of watching the one you love hooked into a million different tubes.

What to do then? You live and learn. Take one day at a a time. Make mistakes. Found out which food works and those that makes them vomit (or simply left at the counter for hours..or being twirled and tossed around the plate… you get the idea). Fight to find the balance of protecting them and making sure they are living their lives to the fullest. Feel the pinch and the twist of your heart when all that you want to do is switch places with them, then learn to let go and be grateful that you have the privilege to hold his/her hands through this valley.

I am just a sister, yes, but having a divorced parents makes me somewhat of a shadow mum for my brothers. All that I ever wanted was keeping them safe and sound. When chemo kicks in and leaving Andrew with zero white blood cells, all I wanted was to put him in a bubble wrap. Do you have any idea what happen if you put a kid in a big bubble though? They suffocate. So no, you can’t do that.

Learn that it’s okay to let go and forgive yourself when you forgot to make their smoothies. Or if their room is not warm enough. Or when they hate what you cook. It’s okay. Cancer doesn’t make us stop living. We just need to learn to navigate through the nooks and the cranny of this stupid sickness and still be able to laugh and enjoy live.

Auds xx