Dreamy Warrior

I haven't been able to speak to a lot of fellow patients who are terminal. I've met one who is terminally ill but not with cancer, so that has helped a little. Other patients who have been close to the end either didn't want to talk about it or stayed in denial for as long as possible. There was one that I nearly got into conversations with but his decline was so rapid, it was impossible to ever get to speak. My heart broke as I spoke to his wife during his last days, I felt like I was there with her as he took his last breath. One day, that will be me. I try to prepare myself for it as best I can. Things you normally wouldn't think about - your physical footprint like places that have your address, sorting through physical possessions so your family don't have to. Your digital footprint - all your passwords, blogs, social media. Financial footprint - direct debits, credit cards, subscriptions. I have prepped everything so that my husband can easily "take...

You hear it all once you get diagnosed. "Take it one day at a time." "Make the most of every day." "Everyone is different." "Thoughts and prayers." "Get well soon." When you get diagnosed stage 4, sometimes people start talking about you in the past tense.... to your face. "You were such a good friend." Excuse me, what? These aren't my lone experiences. Since starting my own support group for young people with gastric/esophageal cancer, I've seen how none of us are alone in our experiences. Despite being alone in our respective lives. Most of us have great support networks. Friends and family. Some have amazing doctors and specialists. But where is the rest of the support that you see for cancers like breast, leukemia, lymphoma, melanoma... etc. GI cancers are not sexy and nobody wants to talk about them - chalking them up to be "old people's cancer". Oh they've lived their life, it's sad but ...

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. ...

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 "t...

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 t...

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 ...

Today is R U OK? Day... also known as the day where some people share their own struggles and others let friends know they’re willing shoulders on which to cry. The problem is that people who need to reach out, often don’t. As much as we try every year, every day, every hour... there is still a fucking stigma when it comes to mental health. Whether it be cultural, religious, generational, or the awful combination of all of the above. Where you’re made to feel that your feelings are not valid because they can’t be seen. So we put our masks back on, accept that we’ll always be broken and maybe this time won’t be as bad as last time. I’ve been struggling with depression since I was a kid. There have been a couple of times in my life where it had gotten really bad, but I pulled through. I thought I was tough as nails for having “beat” depression on my own. How fucking wrong I was. Depression wasn’t beaten, merely beaten back, for now. It was lying in wait for years, creeping o...

Resentment. It’s like a poison worse than chemo or cancer that eats away at your soul. Yet everyday, it grows stronger inside me. I resent people who have continued living their lives. Lives I used to be a part of. Now they’re off having great career moves, babies, engagements, weddings, holidays, food comas.... and I’m happy for them but I also resent that they have that and I don’t anymore. (Well not the babies and marriage, I already have one and don’t want the other). I especially resent listening or seeing complaints from people about the small stuff. Got a cold but call yourself diseased? Fuck off. It’s almost like a resentment that feeds into “cancer entitlement”. Like “I have cancer, will likely die young, can I please have great quality of life and comfort while possible?” - that’s reasonable right? But when a cancer patient doesn’t get the basic entitlement, it grows into unreasonable entitlement and resentment. I’m teetering on the edge. And about to start ...