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Showing posts from 2018

There is no support anywhere for people with esophageal stents

Seriously. All I find are journals (that don't end well for the patient) or stent diets and other bullshit I don't need. Where are the patient accounts? Even in the support groups, everyone is too fucking different. Too many different symptoms. Stents in different locations. Permanent stents. Temporary. Biodegradable. Stents migrated so were removed.

I have found only one person with a very similar situation to me. Also on keytruda (immunotherapy) and also with esophageal stent in the GE junction. He also had a second stent inserted because of blockage. And now he also has the similar feeling I get when eating/resting.

If you're out there looking for some support, here's my stent story. I think I've told it before but fuck it, here it is again. Blame it on the chemo brain.

So my tumours had been growing and blocking the junction of where my stomach and esophagus meet. Eventually they closed up so much I couldn't even swallow saliva. This was when I flew home to…

Straddling the line between death and hope

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 over…

It's Not All Bad

Everyday can be a living hell but it is often peppered with happy moments with my friends and family. Sometimes, I cry, lamenting how I don't want to die. Other days I cry, wishing I was already dead. The bottom line is, I want my old life back - the one I had pre-cancer symptoms and treatment.

I don't want a new normal. But I know if I was given the choice - surgery or not - I might take surgery. Despite the fact that I hate hospitals, hate surgeries and have never recovered well from them.

How can you turn it down when you're in the moment? Doctors staring at you, your family looking at you with hope in their eyes. You don't want to let anyone down. So even if you don't want it, you choose the path of least resistence and a lot of readjusting.

At this point, I have no decisions to make. We are just waiting to see what the cancer decides to do. The next step would be FOLFOX chemo, which my oncologist assures me is less gruelling than the chemo they had me on. Well…

"Take It One Day At A Time"

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 at …

I'm done with chemo!

Since my last update, I've lost two 'cancer buddies'. Their declines were rapid towards the end, and heartbreaking to watch from afar. There is nothing more I want than to be able to hug all my fellow patients and their caregivers from my support groups. They are there for me as I am there for them, and we all have a special bond that can't be explained or replicated.

We love one another on a level so deep, it hurts when one of us hurts. On the flip side, when one of us has a win, it's a win for us all. Whether it be a clear scan, a good day or just a good moment.

I've had my last round of chemo of cisplatin and 5FU - I can't express how happy I am to not ever be connected to that fucking bottle for 120 hours again. I just got disconnected 3 days ago and my family are doing Christmas early today so let's hope I can eat and not throw up the food.

Eating hasn't been great, and neither has sleeping. I have pains everywhere, mostly from nerves where the…

Holding Out For A Cure

Generally, when you think of cancer, you think words like 'cure', 'remission' and 'surgery'. Since diagnosis, I've learned a lot about the cancer world. How doctors don't like using 'remission' anymore. Now they use 'NED' or 'No Evidence of Disease'. Also, if they deem you inoperable, you are therefore also incurable.

I'm one of the 'lucky' ones who can't have surgery. My cancer is too spread out into my lymph nodes. It's too risky, too extensive a surgery to undergo. My surgeon said it's always possible to find someone willing to cut me open, but he suggests against it for my quality of life. He said that during recovery, the cancer could just grow back.

Because diffused gastric cancer is tricky like that. Their cells can't really be seen on scans because they're too 'flat'. I won't get into the nitty gritty, there are medical journals for that. Suffice to say, I have been living the l…

Living 2 weeks at a time

I've been wondering what to write about next. I come up with ideas of things that might help enlighten others, help other patients... but I never sit down to write them. I either don't feel well enough or my brain is foggy.

I guess today I'll talk about how over the last 4 months I've learned to live 2 weeks at a time. That means I try not to plan anything more than 2 weeks ahead - and it stresses me when I'm forced to. Visitors, treatment plans... it's never anything I actually want to do.

I've just been existing, having trouble finding joy in the things I used to love, and sometimes even in people that I do love. I frantically refresh my support groups, still looking for an answer to everything.

I have found solace in the fact that I'm not alone. And yet somehow within my young people's support group, I still manage to be the odd one out. Everybody else is on a curative path, or has completed treatment. Meanwhile I'm just... coasting.

I woke u…

Staying Positive Is Fucking Hard

There are too many variables up in the air when it comes to most cancer treatments. Some are lucky and have localised cancers which can be cured with surgery or radiation. Some are less lucky and need to undergo chemo/radiation to shrink the tumours before they can have surgery. Some are even less lucky, like myself, who are given little opportunity for 'cure'. Just because the cancer decided to take the party outside the stomach and into distant lymph nodes, liver and bone.

At least that's what the last CT scan showed - that there is more metasteses BUT we are shrinking them with chemo. So we're buying me some time. I still feel like shit on chemo but this round has so far been more tolerable. I'm staying on top of nausea better - though I'm getting this weird "ball" sensation stuck in my mid esophagus. Some burping tends to relieve it but it's a strange spot for gas to get stuck.

Not to mention I overate at dinner and was miserable all night try…

Stomach Cancer Awareness Month

This month is apparently stomach cancer awareness month. Did you know about stomach cancer before I got diagnosed or whatever reason you've come across this blog? Did you know anything about it? Did you know the ribbon colour for it is periwinkle? Did you know that most people don't get diagnosed until it's a late stage?

There are so many different kinds of stomach cancers - you'll hear about them in support groups. Diffused gastric adenocarcinoma. Linitis Plastica. Signet Ring Cell Carcinoma. And sometimes if you're lucky like me, you have a little bit of all of the above. Mainly the first kind- diffused poorly differentiated adenocarcinoma. It translates to "You're fucked."

They say one of the symptoms of stomach cancer is nausea. What the fuck? People get nauseated often - they don't automatically think "Oh shit maybe I have stomach cancer." I didn't show any major symptoms until March of this year when I started getting a pain in…

Paying for good days with bad days

I feel absolutely awful today. I had a great weekend last week, seeing close friends from Twitch and doing amazing fun meaningful things with them. Then I got a tiny sore throat which turned into a cough and when I went to get my bloods done, the doctor immediately started talking about admitting me to hospital - which triggered my PTSD big time. Anxiety shot through the roof and my entire day was just ruined. They made me wait while they tested my bloods, when usually I would just go home and get the results on chemo day. My white blood cell count came back fine, but they still wanted me to go on antibiotics just in case.

So now my gut health is all over the place. Stools are loose and my stomach hurts. Not to mention I haven't slept well due to coughing/choking/sternum pain every night waking me up. I vomited stomach acid - I cough so much it just comes out like an open faucet because of the stents. I don't get it - I don't understand what is happening.

I also feel food …

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 …

R U OK? - (repost from FB)

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 out once in …

Legacy - (repost from FB)

A year ago, we saw Hamilton the musical. The major theme in the storytelling was legacy, and how different people try to achieve it. One had fiery passion and drive, while another believed about waiting for the right moment. I related hard to both views. More so the latter. Typical Pisces, always having opposing currents pulling at their insides. I had strong passions but I am also too practical for my own good. I was worried I wouldn’t leave much of a legacy so I worked on writing and completing a book (done), finishing a screenplay/tv pilot script (20% of the way but unlikely to finish) and other harebrained dreams, hoping I would get recognition or happiness from them. In the end, I never achieved anything except some small feeling of accomplishment and a tiny boost in my drive to do more. That’s when I fell into twitch streaming. I strived to create a community for people struggling with mental health issues, the LGBTQ+ community, women, people of colour and people on the autism …

Resentment - (repost from FB)

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 chemo 3 in a cou…

How To Talk To Someone with Cancer ... or not - (repost from FB)

There’s often talk about what not to say to someone with cancer. The focus is always on words, talking, speaking... but what about just listening? Listen to how scared your friend is. Acknowledge it. Let them know it’s likely normal and that their feelings are valid. This is a super scary and blindsiding diagnosis with a super shit prognosis, especially not having surgery. I’m terrified, angry, anxious, stressed, lonely, sad... all I want is to talk to someone about how I’m feeling. I can’t take on your issues, but you know I will. I’m too tired for a visit, but I’ll let you come anyway. Sometimes I don’t have a choice and it’s flung upon me. Sometimes it’s a welcome surprise and other times I just want to run away. I appreciate the concern. All cancer patients do. But I am too tired to put on my social hat. I am too depressed to smile for you. Forcing it makes me even more tired. So please don’t make me do it anymore. All I want is for someone to listen to me, to talk to me about ho…