Dreamy Warrior

They say hearing is the last to go when one dies. I think this is 100% true because it's such a heightened sense when everything else is failing. For months now, I've heard my family through closed doors and walls speak about me. "She said" "Her pain this" "She hasn't that". I both love and hate it. Love that they care about me so much and are taking such good care of me. But I hate that I have become a problem that needs fixing. I know they'll say that's not the case, but there is no way around not feeling like a burden. Especially when you see the stress signs on your family. More fighting with each other, but not with me. More grey hairs. Emotional ticks manifesting physically. Lack of sleep. Worry. Depression. It's all to be expected. I would be the same. But fuck, does it suck to be the one "causing" it all. But I'm not talking about that today. Today I want to talk about what most caregivers probably don...

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 ho...

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 ...

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 wher...

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 th...

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...

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 ...

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...

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 fo...

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. ...

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 th...

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...

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...

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...

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 ug...

My teeth hurt, I’m coughing a fair bit, chest is sore and sternum on fire... not to mention the bad burps too. But it’s worth feeling like shit if I get more days like yesterday. It started bad with a LOT of anxiety when I went out in public (not hospital) for the first time since I cut my hair. I wore a beanie because I get so cold, so I look like I have cancer now .. and it made me self conscious and uncomfortable. My hair has always been a big part of my identity and I guess I never felt how much it was protection too. To hide from the world. To look normal. Untouched by the evil cancers. I had to go home, I didn’t feel well. Nausea induced by anxiety. Then I had my psych appointment and she assured me it was just anxiety. We talked about ways to cope and just generally how our minds work when it comes to trying to be mindful. How scientifically, our brains are wired to constantly loop the shitty thoughts in the back of our minds and we can’t change that. We can work on moving aw...

I hate being called a fighter Being a fighter means I’m in a battle A battle means there’s a chance I’ll lose The truth is I lost the day I got diagnosed I’m sick of the positive outlook from people who either don’t have cancer or don’t have the same cancer and situation. “Everyone is different” after all... Nobody else has to live the ‘day’ in ‘one day at a time’ Only me. Nobody else feels the constant pain, chest tightness, despair and absolute heartbroken desolation at feeling zero relief after two difficult chemo sessions. Oh the tumour looks smaller? Good. Why does my GE junction feel smaller too? Eating has only gotten harder. And so has living. And that’s the honest ugly broken truth. No, I’m not ok. Cancer is a fucking bitch.