[CW: Medical trauma]
I’ve been having nightmares the past three days, and that’s unusual for me.
When I was first diagnosed, my system seemed to go into arrest. I didn’t have nightmares per se, but my dreams weren’t pleasant. Still, I went on sleeping pills and looked forward to the darkness of sleep because the days were so difficult.
I’m struggling right now because of two reasons.
The first is that my scans are coming up next week. On Wednesday, I have a heart ECHO, a reminder that the life-saving medication I’m on could be damaging my heart. The idea upsets me, but there’s nothing I can do about it. The alternative is to not take Herceptin, and there’s no reason I would choose that, not if I want to live. I’m trading one lesser risk for the other, bigger one. Then on Thursday, I have the CT scan–torso and head. My mind has been going off in the “what if it’s in my brain?” direction. My memory isn’t like it used to be, and it’s bothering me. Chemotherapy can do that, but so can a tumor on one’s brain. I’m sure there’s not, but tell that to my mind.
My second struggle is this tiredness I can’t get over. Before I started treatment, the doctors said that Herceptin and Perjeta every three weeks wouldn’t cause the side effects of chemotherapy. “Many people live a normal life,” is what they said. Two and a half years later, I have finally admitted that for me, right now, that’s not the case. I spend at least 12 hours a day sleeping in the week after my IV. I get headaches, and a crushing feeling in my chest–worst around 3 pm. Even in the two weeks after, I’m not “my normal self,” one of the phrases they use on the wellness questionnaire I fill out when I go into the hospital. “My normal self” is lying in bed or on the couch, sleeping, sometimes too exhausted to sit at the table and eat dinner, although most of the time I force myself. What is “my normal self”? Did it ever exist?
I’ve been learning herbalism through an online course, and I’m almost finished with their section on the immune system. I’ve chosen several herbs to take daily in decent amounts (that is, I would say they comprise a good vegetable food group portion), and I do think they’re working. But some days, I just wonder to myself, “Did I reach the point where I’m so broken that I’ll never be put back together?”
I’m just. So. Tired.
Two days ago, I was lying in bed in the afternoon, feeling this sucking or crushing feeling in my chest. For a long time, I’ve thought it’s probably auric in nature–that is, on the spiritual plane. Barbara Brennan‘s books talk about cancer coming from a tear in the chakra or warping in the auric layers around the body. And now, I’m getting to the point where I’m beginning not to care if I sound like a loon because the only thing that has kept me alive this long, clinging to something, is my spiritual journey. Besides, “deepening your spiritual connection” is one of the key points of Radical Remission.
Anyway. it feels like something is torn or crushed or warped inside. Not all the time, just when the tiredness is the worst. And for a while, I laid there, visualizing what it might look like–a vortex or funnel-shaped hole taking up most of my chest. As if I had another chakra between the solar plexus and the heart, gaping wide open, letting out all my energy into the world. Or maybe, I thought, maybe it’s just whatever’s going on with my heart. Whatever they might find in the ECHO on Wednesday. A tiny little tear in my aorta that’s going to kill me soon.
Did I mention I’m not doing so well?
The first dream wasn’t so clear as to what it was actually about–lots of symbolism–but I figured out that it was about taking the tests. I think we, as humans, have a tendency to displace our fear of the results of the test with the test itself. Or maybe we’re just frightened children inside, with that same primal fear of getting poked by a needle. No matter how many times I’ve had it done, and I’ve lost count now, I still get afraid. Try to tell your body that it’s for its own good, but your body doesn’t listen.
The second dream was silly. I dreamt that I dropped my phone into the ocean, and when someone went down to get it, they said they had to destroy part of an endangered coral reef they were there to try to save. I cried and cried in the dream–cried and cried and cried. I woke up exhausted from dream-crying; I don’t think I cried in my physical body, but it was tiresome all the same. In the dream, as I was crying without end, I couldn’t figure out if I was sad because my phone was destroyed and I would be without until I got home to replace it, or if I was sad because I’d destroyed an endangered coral reef. Either reason, both to sleeping and waking me, seemed silly. But I couldn’t stop crying in the dream.
The third dream was horrific. I won’t go into details, but I was in the hospital, in a room with other people who were having medical issues. I was subjected to some things that I would hope would never actually happen medically, and I was also traumatized by some of the things the people were going through.
My fears are visiting again
That dream has two meanings:
First, I’m holding back all my fear of suffering from disease, and second, I’ve not dealt with the trauma of being hospitalized over two years ago. Neither of those things surprise me, and I guess it’s time for me to deal with both of them.
I’ve been “testing” my fear of death lately. I feel that I’ve built a strong enough foundation that I’m not afraid of oblivion anymore, at least not in the direct sense. I’ve fed myself with NDE’s (Near Death Experiences), including one woman in my cancer group who was hit by lightning, had an NDE, and survived. She then got cancer, which I think is shitty, but she was very… calm about the whole thing. Yes, thank you, I’ll have some of that. I’ve read all sorts of literature on all sorts of things, and I’ve started a course in Buddhism through an international Buddhist sect that has a wat in Toronto. Most of whatever one might call “New Age” seems to be built on Buddhist principles anyway, so I wanted to go right to the source.
All that to say–I’m not afraid of being dead. It appears that my fears are now about the process of dying. Or not even dying–just, being sick, having body parts cease working, watching my physical being shut down. None of that is about dying. Right now, a large portion of my physical being is shut down, with all the sleep I need and my struggle with fatigue. I can’t point and say, “Here is my missing leg,” but something is missing–a real something, one that modern science doesn’t really understand right now. I usually call it qi or prana. All science was once an unknown theory in someone’s head.
Anyway, I hate how sick I feel all the time, how no one seems to have any answers, and how I feel so very alone in this whole thing.
That’s what I’m dealing with.
The other thing I need to do is get out this story of being hospitalized. At the time, I was in the process of going through something so traumatic that I couldn’t even articulate that I couldn’t write it out. I’ve once in a while thought back on it and wondered why I didn’t do it. I used the excuse, “I’m tired,” which as we’ve just covered is completely valid and 100% how I was feeling. What happened, though, was such a farce that even as I feel the clenching terror in my chest from what was happening, I feel a hysterical laughter bubbling up. “Boy, this would have made a good sitcom,” I’ve thought on many occasions. Or maybe not. Maybe that’s just my brain trying to turn Pennywise from It into a normal clown.
And so the story begins
In November 2017, I had a port put into the right side of my chest. The surgery was not terribly fun, but it wasn’t difficult. The problem became the wound not healing. I keep learning so many things throughout this experience, and one of the things I’ve realized is that the weight of my breast was pulling it open. It’s right at the top, a straight cut, so the stitches gaped open. Nurses attempted to patch it up with those pull-together-bandaid things you normally only see in action movies, but still, the thing would not close. If I had realized at the time, I probably would have fashioned some kind of sling to keep my breast elevated. When I suggested it to the doctor, he looked at me like I was a major idiot (right back atcha) and said he’d never heard of such a thing.
Well, a) my wound wasn’t closing and b) my breasts are large. Maybe it’s because I’ve never paid much attention to them and thus never really highlighted them, so other people don’t notice them either, but my breasts are large. It’s why I couldn’t feel the fucking cancer lump. I wear a bra size 36I or J. They weigh a lot, they’re large, end of discussion, good bye and thank you. They caused the wound to stay open because the skin was being pulled by the weight of gravity; that is what actually happened so just don’t.
So the port itself was working. It’s this little silver button-like thing they put underneath your skin and muscle, about the size of a silver dollar. It has a tube that goes straight into your artery so that medication goes straight to your heart, and you don’t have to get IVs every time you go in to get your treatment. It saves the veins in your hands (another concern I have–it’s been 2 years of getting IVs every three weeks, so how long are my hands going to hold up?). You put numbing cream on the skin, so you can barely feel it. The port itself worked fine, but the wound wasn’t closing.
One day in late February 2018, the wound started looking less than healthy. I showed it to my oncologist, and she ordered an in-home nurse to come and clean it out. It was weeping something, so they packed the wound, and she came and unpacked it and repacked it.
To be honest, the pain of the wound was slight at this point. That part doesn’t make me unhappy when I think back on it. It’s interesting to think that I could have a hole in my chest where I could see down at this little metal thing and not really feel anything. But it seemed to be getting worse and not better. The nurse was teaching Kevin how to unpack and pack the wound, and he was like, “Hey, doesn’t this look bad?”
She was like, “Nah, it’s fine.” She tapped on the metal of my port (WHICH WAS SUPPOSED TO BE BELOW MY CHEST MUSCLE, I MIGHT ADD). “That’s just the mechanism.”
I mean, to be fair to this woman, she’s probably seen some shit, but as we will see as this story proceeds, packing the wound was not the best option. She should have sent me back to the hospital.
The next day, it was starting to hurt. A lot. That sling I talked about became a reality much too late because the pain of the wound was getting to the point where I could barely stand it, even while on my friends max-daily-dose percocet and CBD oil. We went into the hospital, and they decided to remove it. Everything seemed a bit slipshod to me, and I don’t think the doctor was too pleased that my body had disobeyed his orders to heal up correctly, but the port came out and I went home.
Off to the hospital I go
That night, I was starting to have symptoms of a cold. It was not long after treatment, so I wasn’t sure what I was supposed to do. When I first went on treatment, they told me I might have an immune flareup like cold and flu–fever, muscle aches, etc. That’s what was happened. The next morning, I laid in bed caught between wake and sleep, feeling like I was in a feverish dream. Finally, I managed to call someone to my bedside and the next thing I remember is being helped down the stairs. I was having trouble walking. I was having trouble typing on my phone. That was the one that upset me most at the time, because I thought it was neuropathy in my fingers from the chemo. Since it cleared up after antibiotic treatment, that’s not what it was.
Apparently, there’s a problem with space in the hospital, because they first put me in a room down in the basement area below the cancer center for several hours. It was a tiny room, and my dad stayed with me most of the time. At least, that’s what I remember–some of this goes in and out. I recall struggling to get out of bed to go to the bathroom, although thankfully, I got that done by myself. They hooked me up to an IV to get fluids in me.
I actually recall that room with fondness. I do like a good, below-ground cavern. The only thing that would have made it better was a bed that wasn’t so uncomfortable and a few candles around the room. It was very dimly lit, in a nice, comforting way.
The one thing about hospitals is that they have this aura of waiting. It was the exact feeling I had when I was induced before Morrigan was born. I thought it was an aspect of what was happening–I mean, I was waiting to go into active labor for two straight days, with nothing but a laptop and pre-labor cramping to entertain me–but I think that hospitals, or at least this one in Oshawa, have that feeling caught in the web of its location. Like a pocket in space, where a certain feeling permeates the entire place. That same feeling of waiting that I had while giving birth, which was an entire different situation, was the feeling I had while in the underground cavern.
I wish I could have stayed in the underground cavern.
It was 7 or 8 pm by the time someone came to get me. It was dark by the time I got to my room on the 5th floor, and long past the time they said they would find me a room. But they had already taken my blood and started an antibiotic drip. They suspected, and would later confirm, that I had bacteremia, which is bacteria in the blood, which is supposed to be a sterile environment. I didn’t quite go into sepsis, but I was hovering on the edge.
So being moved upstairs is where the real trouble started.
Fear of being physically harmed is difficult to deal with
The in-patient cancer ward is on the sixth floor, which is new information I learned while being there. The chemotherapy and out-patient area is at one end of the hospital, “tucked away from the rest,” as my oncologist said when we were discussing the dangers of COVID-19 a few weeks ago. However, I did not get put on the sixth floor. I got put on the fifth floor, in a room with three other patients.
I don’t know what they officially call that floor–when I asked a nurse, she said, “This is just a general floor.” But what I call it when I recount the story is “The Dementia Ward.”
Everyone except me was over seventy years old. And while there are many hale and healthy seventy-year-olds, none of them are in the hospital.
The first thing I noticed when I went into the room was that the bed next to me was empty, with rumpled blankets as though someone left in a hurry, and a spray of still-red blood across the sheets.
I would come to discover that the occupant of that bed, who was separated from me by only a curtain, was named Robert. He’d been there for a little while, and he was a chronic remover of his IV.
Ah, but that’s not all.
This is when it gets funny-not-funny. During the time I was there, he locked himself in the bathroom several times. One night, the nurses couldn’t coax him out, so they had to get the maintenance crew to come and take the lock off the door. He would get talkings-to, over and over, yet he would continue to do that.
I was able to walk to the bathroom down the hall, but only because of my sheer force of stubbornness. I honestly do not think I should have, looking back now, but I was still at the beginning of my journey with this fucking disease, and I had some measure of perseverance inside me. I mean, I’d still do it now–I think part of my fear of my body running down is loss of dignity–but it would be more difficult if I had to go through this again. As you can recall, I was basically carried from my bed to the hospital, and it had only been one day’s worth of antibiotics.
One of the other patients didn’t fare as well. She was in an adult diaper and had to be changed from time to time. I got to listen to that while lying in my bed next to Robert, wondering if I was going to survive. At one point, I got up to go to the bathroom and found she was gone.
My third and final co-occupant was a confused woman who was, one afternoon, questioned loudly by one of the nurses. (At first, I couldn’t figure out why the nurse who had checked me into the floor was talking to slowly and loudly at me.) My memory at this point isn’t great, but it had something to do with her wandering off to another province in her nightdress while her brother sent someone looking for her. She was angry because she didn’t want to be wherever it was that he had put her, so now she was in the hospital.
I still don’t understand that–I understand dementia, but why the hospital? There was nothing physically wrong with her that I could ascertain. She needed a good senior care center. But what do I know.
It began to take a turn for the worse when the nurses were changing Robert’s sheets and he was who-knows-where–maybe locked in the bathroom again. They were talking about how he kicked one of the them and had to be restrained.
That was when I began truly feeling less than safe.
No way he should have been in there with us
As they continued to talk, I discovered exactly why he was in such a mental state: he was an alcoholic, and his family had pretty much given up on him. The reason he initially went into the hospital was because he fell out of bed in his home and hit his head rather hard. The reason he was still in the hospital, even though nobody wanted to deal with him, was because he fell out of his hospital bed trying to rip his IV out and hit his head again. And at one point while I was there, I heard him fall and hit his head again. I think I called a nurse for him; fuck, I don’t know, my memory again.
I don’t know if I was the only one smart enough to think about this, but it wasn’t that he was just an old man falling out of bed and being ornery *elbow rib, lol*. He was an alcoholic going through a forced detoxification, probably dealing with DTs and all that, and they put a cancer patient and two elderly women in the same room with him!
Every logical fiber within me is telling me that it’s not fair of me to think that this poor, old man was going to come at me with a butter knife in the middle of the night. Isn’t that some kind of reverse prejudice? And yet another logical part of me is like
WHAT THE ACTUAL FUCK WERE THEY THINKING???
He should have been quarantined to his own room, but the problem was that first of all, they didn’t have enough beds. The reason they sent a 36-year-old cancer patient to The Dementia Ward was because they didn’t have the space to house me elsewhere (or so they say, but more on that in a moment). Where were they going to put him? Better just throw him with the general population and let those poor fuckers working on the dementia floor deal with him. They’ve dealt with his ilk before, right?
The next problem was that the morning after I got put in the room, the person who had the bed before me got swabbed and diagnosed with one of those antibiotic-resistant respiratory hospital infections. That meant that when I had visitors, they could only stay for a short period of time, and they had to go in one at a time, and they had to wear scrubs and a face mask. There was a big sign on our door telling the rest of the floor to stay out and be careful. Since it was a big ordeal, there was less oversight of Robert than there may have been, although to be fair, that staff was so overworked, I don’t even know.
This all led up to the reason that I finally got moved off that floor.
It was… awful. As I mentioned, I had to walk down two hallways to get to the public bathroom because Robert was once again locked in the bathroom. Some of the patients were sitting outside their rooms, reeking of piss and shit. They would watch me walk past with sunken eyes, and on the way back, I would wonder to myself if I shouldn’t have gotten a walker since I was barely making it.
But the worst was the shouting from down the hall.
One night, one of the new patients didn’t want to be in the hospital. I know this because she started screaming for help. “Get me out of here! I don’t want to be in here! Help me, please, get me out!” An old woman, screaming this, while I felt exactly the same way… Well, gosh. I guess there’s a reason I’ve started having nightmares.
Thinking back on it, I’m embarrassed, whether or not I should be. The simple way of putting it is that I couldn’t handle the strain of being on that floor–I had a panic attack, and then I turned into the shouting woman down the hall. For sure, I was dissociating. I felt like one part of me was sitting on a cloud somewhere, maybe just behind my own left shoulder, watching everything proceed with a cool, calm head. That’s the way to do it, she thought. This is the only thing that will get their attention.
The physical part of me was screaming and crying and begging to not have to spend one more night next to the violent, detoxing man in the bed next to me. I honestly believe that the only reason I was able to sleep was because I took sleeping pills, and they knocked me out. Otherwise, I would have spent sleepless nights in fear. It wasn’t just everything that was happening in that hospital, but everything that had come before. I’d been diagnosed with Stage 4 cancer four months before, I was deep into chemotherapy, and I had now gotten a blood infection and was in the hospital. I had been through some trauma.
Again, he never did anything to me. But I was scared. He was belligerent and had lashed out at one of the staff. I don’t think he really cared who or what was in front of him, and part of me doesn’t blame him. That’s why they make fucking rehab facilities. I felt so physically vulnerable in those few days, in a way that I’ve never felt before, or maybe in a way I felt when walking down a dark alley in the middle of the night.
The nurses kept telling me that whoever was in charge of finding beds for people to sleep just simply did not have another place to put me. But somehow, my breakdown got her attention and she magically found a room on the sixth floor, the cancer ward, where I was supposed to be.
Finally, by myself
The room itself was only slightly smaller than the room I’d been in with the other three people. Except, for some reason, I was alone. Yes. That’s right. They “didn’t have any rooms left,” except when I started throwing a tantrum, and then suddenly a “spot” opened up–a spot that could have housed four people.
I will say that I am not at all complaining about that. Despite everything I went through, I will count my blessings, and that is among them. I needed to be alone. I’m an introvert, and just being in a hospital room with other people, even quiet ones, would have added to my trauma.
But it wasn’t over then. I got to stay for another 6-7 days in the room by myself, but it was still a hospital.
The rest of it is a blur, though. My bed started on one side of the room, and one of the nurses kindly moved me over to the window so I could look out. But they needed to do a heart ECHO, and for some reason, when I got down there, the guy that did it hurt me. Like, hurt me so much. I don’t know if it was because I was extra sensitive in this situation (I’m already a Highly Sensitive Person), but I spent an hour afterward bawling. The nurse attending me stood over me, asking me why I didn’t say something when he was doing it, and I had no answer for her. “Because I don’t like conflict,” was the best answer I could come up with, and the first real, solid thing that made me realize I need to figure something else out about how to interface with the world.
My IV started hurting where it was in my arm, so another nurse tried to put it into the underside middle of my left forearm. While he was doing it, he hit a nerve, which felt like I’d violently been struck by a tuning fork throughout my entire body. I cried until he got it out, and my arm hurt for the rest of the time I was in the hospital. I wasn’t yet used to the bruising that IVs leave–which usually lasts for 2-3 weeks if I really get one–so the spot they moved it from was traumatic.
I also had to have my blood drawn into multiple little bottles of what sort of looked like some kind of sauce? They were each a bold color, with long necks, and a rounded portion at the bottom. The lab tech would come in and fill up ten thousand of them, and it would take several days for them to come back with results of whether the bacteria was out of my blood yet or not.
Then there was the ache in my chest, which is very similar to what I’m feeling now when I’m exhausted. I thought for a bit that maybe I was having a heart attack. I even convinced myself that my left arm was going numb. But that happened before the heart ECHO, which came back fine. They would have seen if I’d had a heart attack. The purpose of that was to check if there was “vegetation” on my heart, caused by the bacteremia, which was, thankfully clear.
I kept thinking about cute little bushes and weeds growing out of my heart, and while I knew that would have been a bad thing (and also, not actually what “vegetation” is), I couldn’t help but be enchanted with the word. I didn’t have much else to keep me occupied at the time.
Oh, another little shitty detail I almost forgot: when I got to the fifth floor, the doctor, for whatever reason, was fucking around instead of approving my medications. He didn’t want me to take my percocets, which I was up to 5-6 a day because of the pain from the tumor in my jaw, and he wanted me not to take the extra-strength anti-nausea pill and take Gravol instead.
Well, Mr. Dementia Floor Doctor, you clearly were not fucking paying attention in your oncology classes because Gravol is like a drop in the ocean for chemotherapy nausea. I got to learn that one day while cowering next to Robert, at which point he finally approved my regular pills.
Apparently, they confiscate your medications when you come into the hospital, which I suppose I understand because Dementia Ward, but if my oncologist prescribed it, how fucking dare you decide I can’t have it?
Then when I got to the cancer ward, the doctor there was fine with everything except the CBD oil, which my nurse took pity on me about and slipped to me “to send home with someone.” I kept it in my bathroom kit and took it as scheduled. In the end, I’ve stopped taking cannabis because it doesn’t seem to work for me, but at the time, I was trying to take it for the pain. The percocets were doing something, but not enough.
It happened. It’s over. I’m still dealing with it.
The whole thing was a giant clusterfuck, and I’m completely glad to be done with it, but two and a half years later, I’m still crying over things that happened. I’m both embarrassed and furious at The Dementia Ward situation, and I just…
I’m tired just thinking about it.
Before I left, I had to have a PICC installed, which is a line from the center of your upper left arm that runs to your heart. There, I got three times daily antibiotics running for six weeks, which added more stress and pain to my life. I wore the machine in a fanny pack that I could never take off; I bathed with one arm covered in plastic wrap. My body does not like antibioitics, and extra strength ones for an extended period of time while taking chemo, were extremely difficult.
I wonder to myself, “Why am I so tired right now?” Well, I think I found the answer. It’s like they were sending miniature meat grinders throughout my body, grinding me down and grinding me down and grinding me down, until finally, now, my body wants to rest and rest and rest.
I suppose I don’t blame it, but it’s very difficult to just… exist right now. I’m planning on existing for a long time, so I really hope that these herbs, which are supposed to be nutritive and immune system boosting, help me build up all the stuff that’s torn down.
But I’m scared and tired and angry and… tired.