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Showing posts from October, 2018

Not Letting the Thief in the Night Steal Your Treasured Day

Good days are hard to come by. When they do, it usually revolves around having no issues with eating. Great energy. Bowels are working. Things we usually take for granted. So many people will walk through life with not a care in the world - having no idea of the cancer-ridden people next to them who is having severe indigestion and feels like they're about to die.

So yeah, when a good day rolls around, it's great. I have energy, I have happiness. My mum calls it "high". Saying I'm "high" already when I'm in a good mood. It makes her happy to see me happy and I want to give her more moments like these.

Even if it's just me being an idiot. Which is what I used to do all the time.

But when night falls, and things get quieter... the thoughts get louder. The thief of happiness starts creeping in, ready to steal all the good things away from me. Ready to tell me it's fleeting, pointless and that I will be dead.

He must be great at parties.

It'…

Chemo ports and other foreign objects inside my body

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When I last had to admit myself into hospital, the form was pretty straight forward. When I had to do it for my initial diagnostic scope, I just had to add that I'd had laparascopic surgery before. In a very short amount of time, all that has changed.

Now, I have a list of medications to include. I have to tell them I have esophageal stents and I also have to let them know that I have a 'power port' or port-a-cath. What's that, you might ask? WELL... as soon as we confirmed that I was going to be on this clinical trial, I was booked in to get a port "installed".

It sounded simple, painless and convenient. The oncologist said it's a little device that sits under the skin. Ummm.. okay. This is how it's "installed" (GRAPHIC VIDEO!)


I was lucky that the radiology surgeon who installed my port was a pro and liked to listen to music while he worked. So we put on some Queen and I was awake the entire time, talking away apparently. I told them how I…

Possibilities

The hardest part of this whole shitshow is that from day one, the doctors told me I was incurable. Sure, the cancer was treatable - we could prolong my life, address symptoms of the cancer, etc. They didn't give me arbitrary timelines, my care team is too smart for that. But when pressed, they said 12-24 months.

That's 1-2 years, possibly more if everything goes well with chemo. All my cancer buddies around the same age group are chasing curative treatments while I'm just sitting here.... what? Twiddling my thumbs, waiting for the other shoe to drop.

Life is full of possibilities and a terminal diagnosis makes you feel like you suddenly have none at hand. Investments like buying a house, planning a big trip many months ahead, etc - they're taken off the table, logistically.

I've tried finding meaning and answers - just a guide on how to live my life now. Aside from the dreaded "mindfulness", nobody else has really given me anything other than "take i…

Damned if you do, damned if you don't

Throughout my diagnosis and treatment journey, I've been forced to handle a lot of "between a rock and a hard place" scenarios. Usually, I've come out okay but not unscathed. The latest in a long series of these is today's eating issues.

That's right, just after I talk about the stent and all its glory, I start having stent issues. It started in the morning where something just didn't feel right in my sternum (where the stent is, roughly, placed). It felt tight when gas would try to pass through, uncomfortably so - like something was blocking it. I threw up a little bit of breakfast after coughing from discomfort. I thought that might have fixed it.

It didn't.

The day has worn on and I've thrown up some food, and kept others down - so I'm staying hopeful that it's more the medication and cancer just playing up. Motility issues cause my stomach to empty slower than usual, so if food sits in there too long, I feel sick and want to throw up. …

Eating Out

Eating when you have gastric cancer is already a chore. Your stomach doesn't work the way it's supposed to because there's cancer in there wreaking havoc with your motility. In my case, because the tumours were so close to the junction where the stomach and esophagus meet, they had to place an esophageal stent in there.

It's sitting in there now, squishing the tumours, showing 'em who's boss. There are many kinds of stents, and mine is mesh, metal and permanent. It's partially covered which means most of its outside is coated in some kind of smooth material - but the edges are like "chicken wire" which allows the soft tissue to grow into it, hence making the stent "a part of me".

I'm lucky, I have TWO stents. The first one worked fine, for a while. Eventually I was regurgitating again and soon I could barely manage liquids. Tumour granulation (whatever that means) was blocking the way. So we put a second one in about 6cm above the ju…

Too Tired To Function

Today is one of those days where I feel it's my last. I can't think straight, I don't feel well, my food isn't going through properly, and I generally just feel exhausted.

My body wants to hibernate. Last night I had dinner at 7 and promptly fell asleep in my bed for 3 hours!! All I wanted was to curl up and feel warm, and mind you curling up after eating for me is a horrendous idea. I knew when I'd woken at 10pm that my stomach hadn't even come close to digesting the food, much less emptying.

It's a weird feeling, like liquid just sloshing around not far from your throat. The stent(s) I have placed in my esophagus ensure that I am always reminded that digestion happens there. If it happens at all.

I burp constantly, and sometimes it really hurts because gas struggles to pass through the stents. The stents cause the muscles around them to be rigid, so yeah... pain. I take pills for the nerve pain it causes but there's nothing anyone has been able to hel…

Reconnecting old ties and estranged friends

I've had many relationships with people in my 34 years of life. Not necessarily the romantic kind - just something deeper than mere friendship. I guess you could say I found many soul mates along the way. People whose company you craved everyday, and together you grew into a fearsome pair that couldn't be knocked down. Yet, like so many stories before us, knocked down we were. Chopped down by society's demands or a mother's wishes. Misunderstandings and hormones went flying, awful words hurled and tears jerked. Friendships lost. Hearts broken. I lived for many years with regret over some of these missing connections - and it took me being diagnosed with terminal cancer for us to reconnect. I guess that's one of the few good things I can thank the goddamn cancer for - it's bringing people back into my life. My sister started a Facebook group (where the reblogs come from) so that people could stay updated with my treatments and that we didn't have to mes…

Cancer Timeline

I thought I'd make a public post that showcases the cancer 'journey' thus far. That way, people have an entry to return to for reference. I'm a bit of a planner like that, live with it. ;)

So, I first started getting symptoms March 21st 2018 - there was a pain in my sternum when I would swallow food. I would learn later this was my GE junction and that tumours were slowly growing into it, blocking the passage into my stomach.

Instead, what doctors told me was that I had gastritis and to take omeprezole for a week to see if that helped. It didn't. The pain got progressively worse and I changed my diet to a low acid (aka boring as all fuck) for months to help alleviate symptoms. Nothing helped.

Not only was I miserable going from doctor to doctor, specialist to specialist, worried about how I'd pay for all these tests - I was in progressively worsening pain and I couldn't eat any of my favourite foods.

My depression and anxiety started to rear their ugly head…

Being a burden - (repost from FB)

I was asked yesterday by a fellow terminal patient how I coped with the feeling of being a burden. This is a very big heavy box to unload, and it’s one I struggle with everyday.

In the earlier days of diagnosis, I hated seeing what MY cancer was doing to my family. Everyone was stressed, on edge, not sleeping well etc... it was MY fault because it was MY cancer.

After talking it out with them, I have to just trust in their words that this is happening to us all. That cancer happened to me. It’s not me. It’s not mine. It doesn’t define me.

And yet, I still feel like a burden. I try to be independent when I can, and I choose the worst times to be it - vomiting in the middle of the night, struggling to sleep because my stomach feels like it’s poking out of my ribs, sternum on fire from acid reflux.... it’s a fucking lonely business.

It’s like I purposely give the easier tasks to my loved ones and then suffer through the harder ones alone. Like it’s a fair trade off for dying.

I keep look…

Finding a family on the internet

I never thought I'd make friends once we moved to LA. It was such a lonely town and any friends we did make, we didn't see for months at a time because everyone's schedules never matched up. Eventually I turned my hand back to Twitch streaming, something I had previously tried and quit within days due to how difficult it is for women to put themselves out there on the internet. Exposed.

But expose myself I did again this time, heart and soul. I told people about my health issues, physical and mental. And they in turn, opened back up to me. We built a community that became a safe space for many people. So much so that I got messages from people that I helped them feel "seen" and that's all some people want.

I had hoped to build something like what I did, but I never expected what I got. I got so much more. I got friends, family, soulmates. Generous people who helped pay for my medical bills, generous people who spend time making art or finding music for me to …

Dreamy Warrior (FIRST blog post - read me first!)

What constitutes a warrior? Is it someone who is always willing to jump into the fray, no holds barred? Is it someone who continues to fight even when all hope is lost? Is it someone who refuses to give up in the face of inconceivable odds?

The word warrior is used a lot in the cancer world. Battle. Fight. Like we're soldiers marching into war against the big beast that is cancer. I refuse to think this way. It's a personal choice and I begrudge nobody their choice to refer to themselves as warriors. I'm a warrior too, but I'm not a fighter. I'm a dreamer.

I like to fall into a land of mystery and whimsy, where nothing bad ever happens. Getting the picture yet?

So being a fighter? Not really my thing. I don't consider my 'fight' with cancer a battle. It's just something that I unfortunately have to go through and it may limit my lifetime (aka kill me dead sooner than later).

But being a dreamer also means I hope a lot. I hope I have many years left …