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 :)