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

Journaling Sickness

The first few months after the initial cancer news usually feels like a whirlwind.

Ok, more like a twister.

If you are the main caretaker, hear me out: PLEASE TAKE NOTES. Like, write the important stuff.

I have fumbled through Andrew's paperworks, lost visa applications, hunt lost cheques, and do a thousand "quick" email search in my inbox.

One year later (yeah I know, I am horrible at this. Admin sucks!) I finally come up with a list of stuff that you have to ALWAYS know in a heartbeat. Well, it's useful because doctors usually have hundreds of patients while you only have, well, one :p so most of the time they will ask you questions and you feel like yelling "but you are the doctor! you suppose to know this stuff!". Anyway, here are some information that you need to jot down:

1. The date of initial diagnosis and the symptoms (I have been asked this at least 15 times. Nope, not joking) 

2. Allergies. This includes "new" allergies that are found during the treatment. Example, we found out that one IV anti-virus actually gave Andrew TV-commercials-related hallucinations. I know.

3. The drugs that works. Some drugs works better than the others, but sometimes they are "interchangeable". Ask, persistently and kindly, for the one that works. Bribing is a great tool. Just saying.

4. Honestly, just have ALL drugs list. From their chemo up to pain meds.

5. The dates of chemotherapy, transplant, and any other important procedures.

6. Every single time (and place) that they insert tubes or needles in, such as PICC or Hickman's.

7. Food that are NOT allowed. We once argued if Andrew can't eat grape OR grapefruit. Apparently he can eat....neither. Oopsie.

8. Food that works. Docs and nurses will throw random infos such as 'watermelon and saltines works for nausea!' or 'apple juice help soothe your tummy!'. Take note my young Padawan.

9. Always know your timeline! Treatment dates change but you need to know the big outline of what your doctor is planning to do. This will help you prepare and when some random (hot) intern walk in and said that he needs to do some test, you know exactly what he is up to.

On top of that, try to have a list, or better, a bag of "emergency room midnight run" complete package - collectors edition. The worse thing you can do is get to the hospital and found out that you left your iPhone charger.... ehm... I mean important medical stuff. Yeah.

Auds xx

Being Around (and Trying to Act Normal)

It is hard to be around people who just found out they have cancer; and it gets harder because in your mind your feel guilty for feeling bad because, well obviously, they had cancer. The big question is always: how do you behave around sick, and possibly dying, people? I know it sounds harsh and selfish but if you are honest, that thought will cross your mind. Also, the thought of losing someone so close to your heart will tear your heart and mind apart. You are only human.

The best way to deal with this is actually admitting how crappy and sucky life is at this moment. Weep with those who weep, right? Not pretend to be strong when someone is weeping. Sometimes the only thing that work is simply sit and hold them while they cry.

Two important things that are a big NO-NO are:

Pity. This is the worst thing that people can give to someone with cancer. They don't need your pity; they need your hope and faith to lean on. Pity makes them feel like a victim; and that is the WORST feeling in the world.

Focusing on us. You are sad, I get it. They are sad-er. Don't make their experience about you. This is not the time of your triumph story or wobbling on how sad you feel. Focus on them and their well-being. Dig stuff in their life that they can lean on. Start talking about their wins, not ours. Do stuff (or encourage them to do) that makes them happy; even though it bores you. The one thing that my brother loves to do is board game. We played so many board game during our hospital stays. He loves kicking our butts and even though I don't exactly love losing. Sometimes I have to postpone some "important" stuff -such as hospital paperworks or fundraising- because he really, REALLY wants to play. Trust me, once the chemo kicks in they'll be plenty of time for you to do what you need to do because they will be sleeping!

All those things being said, you do need to take care of yourself. This is why you have friends (healthy ones, preferably) who can support and cope with your whining. Trust me, you need friends to keep your sanity!

Auds xx

What to do AFTER we found out?

Ok. You might read this AFTER the big phone call/doctor appointment. We got our call at midnight, 8 hours flight from where Andrew was. My first reaction is that we have to get him home. Then we found out that his white cells count skyrocketed due to his cancer cells so he is not suitable for airplane travel. The risk of him bleeding was on a non-fun zone, which makes it a no-go.

There was a couple of stuff that we need to sort out after we got the news. Some of them are pretty full-on. These are what we found a bit tricky to manoeuvre, what we did and why we decided to do it:

How to tell "everyone"

This is the hard one. Andrew told dad and dad told me and we were both confused and scared...to relay the news to mum. There's always that one person in the family that are a little bit fragile. The trick is just to let them know as clean as a positive as possible. At this stage most likely you wouldn't have known what the game plan yet. Be precise and clean-cut. Give them some time to cry and process the news. I'm the kind of person who like to get stuff planned and sorted (yes, and by that I mean I am a control freak). If you are like me, please allow some people time. They might labelled you as insensitive or "in denial". Everyone process things differently. Sleep and pray on it.

For people in the outer circle, get someone to spread the news. If you have friends who are blabbermouth put them in good use. Tell them and get them to tell people. Best friends also great for 'missions' like this. This will save you from having to tell and re-tell a million people (ok more like tens or hundreds at most). Social media also works like magic. Make sure all your inner circle are well-informed before you post anything on; the last thing we want is to offend people and create drama. Ergh.

Arrangements of who should be "there".

At this point everyone wants to jump in and help. Remember, cancer is a long journey. I's exhausting. So spread the help as wide as possible. Get family to rotate the visiting hours. At the beginning of Andrew's stay in the hospital EVERYONE comes. I mean EVERYONE. By the third cycle of his chemo he barely have any visitor. It is ok to tell people to pace themselves. If they offer help, rides, food etc. ask them the specifics of what kind of help they want to offer and if you need it, don't hesitate to ask. Really. If people want to help, let them.

Getting second opinions

Second opinions, in a way, is more of a reality check for everyone as well as making sure the person you love get the best medical care. Second opinion(s) are the most hazy, noisy, and opinionated part of this journey. Everyone (including myself) secretly wish that second opinions can prove the first opinion wrong- which is completely normal.

There are a couple of stuff that I found helped during this period. First, keep them as clean-cut as possible. Limit yourself to a certain number of doctors. Family doctor(s) are the best person to refer or to give second opinion as they already earn your trust throughout the year.

Second, two or three "second opinions" are enough, especially if the person need immediate care. When we got Andrew's diagnosis, his white blood was through the roof. He need to start chemo immediately to make sure he didn't bleed to death, pretty much. Chemo is sort of a no-turning-back point. I asked Andrew to email his medical files and email them like crazy to our family doctors, friends who are a doctor and some people that we got referred to. I got replies in a day to confirm that the first diagnosis was right. The next week Andrew got a very fancy line on his chest and a good dose of chemo.

Figuring out the finances.

Ahhhh my favourite part...NOT. This should be on number one because after I put down the phone my first thought was: how on earth are we going to pay for all the bills? Cancer is the most expensive disease in the world. I've heard so many scary stories of how they have to stopped treatments because the family did not have enough funds. At this stage what we did just to take it one step at a time. I will be writing about some ways of fundraising in the later stage. But seriously, there are always ways. Always.

Those are the four big stuff that came up after we got the big news. If you have any questions or if you find some stuff that I might have missed, please left a comment here and I'll try to answer or discuss it. Hope this is helpful. Just take it one day at a time, 'kay?

Auds xx

Prelude

Hi. So, our family started this Cancer journey on February, 2014. Along the journey, we have learn some curves that helps us along the journey. I am writing this from a sister/caretaker aka sidekick perspective. 

When my brother was diagnosed with Acute Myeloid Leukimia (AML) on February, we decided that I am going to be the main caretaker for Andrew. It makes sense since I just started my career and Andrew was diagnosed in Sydney, Australia -the country that I spent three years of my life in. Still, it was not an easy journey so far.

A couple of months in, we start to find out some stuff that works and some stuff that doesn't. As I was talking to some friends and family as they were asking the usual "how-are-things" and they keep on bugging me to write some stuff down.

I am not a medical professional. I am a chaplain but currently I am a full-time caretaker of my brother. I will try to write this as honest as possible, from the point of view of someone who do not have cancer but helping someone who does going through the journey. This blog is based on my experience, which may not be applicable to everyone. I hope that we can learn together as the journey goes. Enjoy :)