For privacy issues I’ll just either just first names or alternate to something different.*
getting cancer is horrible and and of course you sort of go.. what do I do? Am I alone with this but then you happen to stumble upon some wonderful online support groups... of which I’ve joined two specifically for stomach cancer. One is a huge wealth of knowledge- just ask the search bar and someone will have probably has the same question a while back but still have great information. The other group is mostly for those under the age of 50 which is so nice because... while it’s so sad that people 50+ get cancer it’s really a different experience getting the disease when you’re 22 like me or even in the 30’s to 40’s. We all had plans for our lives careers and kids so on and so forth. I personally was getting to know myself better. We haven’t reached the stage where most people have to really consider the challenges of aging- which is fine because everyone gets there at some point.
I haven’t really talked about influential people in my journey because well.. they all hit very close to me. The first big death for me in the group was Joy. She was a little ahead of me in terms of diagnosis and though we didn’t converse as much as I wished (energy and my own timid ness to reach out) but I felt a connection with her as we were two young women without curative options and it’s all really tough stuff. I cried when I found out she was gone and I cried when newer members joined around the same age as me about to go through the grueling treatments I was once offered. I really still don’t know how to manage all of this grief. Since then our little community has lost more members and gained some- as much as that pains me to see. It really just makes me mad at the world how such wonderful and kind people end up with this bullshit. Anyway those are the sorts of people that help me with all the cancer side to things and mostly emotional familial things I can’t get myself to work out to say to my real family. It’s nice, therapeutic and most of all they’re supportive and attentive and of course filled with their own experiences that have helped me see things in different light.
that being said, I’ve always been a huge fan of writing and creative writing has been sort of a passion of mine. I started writing on Wurr, a lovely Harry Potter AU site that has done nothing but accept me as a writing which was comforting but also devastating as being able to write became so much of a pain physically and mentally.
and of course there are the people who have been by my side this whole time and I can’t express enough gratitude to. It’s been really rough especially these last couple of days but nevertheless they’ve been there as good company and support.
I very much hate cancer. I very much hate palliative care. Here’s why: it’s not that managing symptoms is at all bad, I don’t believe that. When I started my journey with chemo I did it because... dear lord, I wasn’t ready to die. I had people to see, arrangements to make and so on. I agreed to the chemo. It made me feel better and at times I felt like my old self but it also brought me a lot of false hope. There was one moment after round 4 where they saw a great response, did an exploratory laparoscopy and found rampant cancer anyway. No life saving surgery for me. Honestly, I felt like they were just jerking my chain a little and I briefly had a thought of being able to plan more than a month out. False. I got more chemo, it stopped working as well and my fingers and toes were shot, my brain hurt so badly and I felt foggy from rounds 6-8. I sludged through. Honestly, I was done at that point but instead I put myself on immunotherapy thinking maybe it could get me to remission. No avail, the cancer had grown. Now I’m back to pain, no appetite, throwing things up like I did when I was first diagnosed. This is why I resent all of that palliative chemo... last side effects of chemo drastically decrease what I call quality of life, I have to go through all the symptoms that took me so far down in the first place but this time there is no relief, I’m stage 4. I’m incurable. My friends are all up and down the West coast so I don’t get to see them often enough, I can’t focus to read or type, I can’t enjoy the sun without feeling overheated or worry about burns, I can’t swim or hate because of this drain, food isn’t pleasurable, I can’t sleep for all the pains and the pressure of sleeping on my sides make me throw up- even liquids... the list of things goes on. I’m grateful in a way that I got to spend time with family and have my wishes known.
I think the the biggest takeaway is that cancer forces us to open up to our loved ones more. I can talk about how terrible I feel, about all my wishes, talk about hope and dreams that I once had.... because of the urgency of time there’s no room for beating around the bush. I feel closer than ever to my mother because we’ve been able to share our thoughts and start planning for what happens next.
Cancer is real. It touches the lives of so many. I really wish it didn’t. At this point I think everyone at least has some connection to a person they know who’s struggles with cancer. Damn uncontrolled cell division. It happens more than you think... most people have some bad cells but their cells still work enough in edit that such cells commit apoptosis or they’re cleaned up by the immune system. Unfortunately in the case of cancer those things are somehow missed or fucked up so then bam you have an uncontrolled wildfire of bitches and bastards infesting the body.
Chemo is grueling. Everyone is truly different in how they choose to go about life after diagnosis. Fortunately for some, the cancer is staged 1-3 so cure is possible or remission. Stage 4 patients even have a chance in the case of some cancers. Mine? Stage 4 with metastasis to the peritoneum... just fucking screwed. It’s only a matter of time before it catches up to me. Believe me, I feel it creeping up and that’s just how it is. I’m too tired to keep running. So soon I’ll hear the knock and I’ll have to open that door. It brings me comfort to know that all living things must go. When they go isn’t necessarily fair, but they happen. We all have the tendency to think we’re an exception or special when it comes to death, tragedy so on... but I know I’m not an exception, no one is. We may be unique, wholly ourselves but we’re not immune to the passage of time or the end of the gift of life.
I wish I had more time. There’s a lot to say about my life that has been left unsaid by me for various reasons (tired, didn’t want to write so on). I guess it’s easier for me to list things so here goes:
1. I am so tired of this “fight” and I’m so ready to go. I’ve been ready a while but now I feel very little joy.
2. I had a drain placed. It sort of helps
3. I keep throwing up any food. Love me some mucus and gas bubbles up the wazoo. Burping every second of the damn day.
4. I’m sad about all the people who I’ve know loved and lost to this terrible illness.
5. I’m not afraid of death. I’m not looking forward to all the symptoms that will keep popping up.
6. I’m not stoked for summer. I hate the heat anything over 65° is too much for me.
7. I love and miss all my friends.
8. I miss being able to walk unhindered and with good breath.
9. I really can’t do anything except sit in bed all day because doing anything more makes me so tired. Yet I can’t sleep well... or eat. What’s the point?
10. I’ve had a lot of great adventures in my life. If an afterlife or a death is my next one... I’d rather that than live in discomfort like this.
11. I’ve given my mom my passwords and instructions for things.
12 my fingers hurt so I’ll stop here for now.
Growing up I sort of thought myself as being pretty lucky. I never thought of myself as horribly ugly or particularly pretty- just sort of normal. I liked being able to eat pretty much whatever and having a fast metabolism, I liked all my activities as a kid... for the most part and there really wasn’t much issue. When all the girls started wearing makeup sure I wanted to try it too but ultimately thought it took too much time and gave up on it.
Cancer has has really changed how I feel about... myself. When I first blew up with ascites I hated it. Sure my friends and I joked I looked pregnant by like 9 months but I certainly knew that wasn’t it. Besides how do you balloon that big in under 3 weeks? Not possible. That was when I started noticing things and when I couldn’t eat I hated how my collar bones stuck out and how my cheeks that were usually full looked hollow.
Today Im not so gaunt and malnourished looking (though I might head that way)... but I’ve begun to balloon again with ascites. It makes it hard to get a good breath in, hard to eat, sleep and pretty much anything... so that’s why I’m getting a permanent drain installed. Okay so my ascites is only just coming back but I already know it’s one of my many beautiful cancer given symptoms so it probably won’t go away... hence the placement. I hate how distended my abdomen gets- makes me feel in no way cute or at all pretty and now I get a tube sticking out of me. Not thrilled... also because it’s going to make showing all that much more difficult because it can’t get wet. Excellent, just what I wanted to hear. Way to make me feel better.
Boo hoo... big problems for me, right? Yes and no... I hate complaining because it makes me feel like I’m grabbing for some sort of attention but also... I feel like my independence is running away from me and fast.
I think everyone with some sort of cancer diagnosis is probably prescribed some sort of antidepressant at some time or another. They work. Otherwise its waterworks all day every day... sort of for me at least. My finger tips feel dead, typing hurts yet writing is one of the few things that still bring me some sort of happiness but it comes with a damn price. I'll probably never run my fingers over grass, feel sand beneath my feet and actually enjoy any of it because of that deadness in my fingers and toes. I'm not strong enough to run anywhere anymore... mostly this all just sucks.
I wrote off dating long ago too because... who wants to actually attach themselves to someone who will be gone- who wants to start something and then watch me potentially suffer down the line. Seems cruel. Unfortunately, I didn't happen to have any sort of relationship with anyone before diagnosis... but also lucky for whoever that might have been. I'm not denying that my friends don't feel anything.. its just different in the sense that they were all already a part of my life... and I don't want them to feel bad either.
Pity. That's the other thing. I really hate it... like getting treated differently because I have this fucking disease. It just reminds me of where I am now versus where I once was.
I'd really write more but my fingers hurt, I'm hungry and also find food nauseating right now.