https://www.infirmiere-canadienne.com/blogs/ic-contenu/2023/03/20/il-ne-sagit-pas-une-etude-cest-ma-vie-1
Alysha Ramus received her degree before dying of cancer in 2020
By Alysha Ramus
March 20, 2023
Courtesy of the Ramus family
“Having cancer has changed my perspective on many things. One of the biggest changes for me is witnessing people who have forgotten to live in the moment. … Time is truly precious. We don’t know how much we will have and often take it for granted. I did when I thought I had lots of time,” Alysha Ramus wrote in her school assignment.
Editor’s note: Alysha Ramus was a nursing student at the University of Lethbridge when, at age 25, she was diagnosed with cancer. She fulfilled her academic requirements, including submission of this final assignment, and received her degree in March 2020 in a special convocation ceremony in a hospital. Alysha lost her battle with cancer on July 15, 2020. Her family granted Canadian Nurse permission to publish her school work. This is part 1 of 3. Part 2 will be published on March 27. Part 3 will be published on March 29.
Introduction
In this paper, I will detail my experience as a fourth-year undergraduate nursing student diagnosed with angiosarcoma at 25 years of age. I will share what receiving a diagnosis like this feels like and the questions that flooded my mind. I will detail my journey from the struggle I faced in determining what was making me sick through to my experiences with the processes and people in the health-care system.
The purpose of this paper is to highlight the strengths, weaknesses, support and pain that I experienced from my perspective as a nursing student diagnosed with an extremely rare cancer. The human aspect of cancer is me. This is not a study. This is not a test. It is my life, every perfect, precious second of it. It can and has been made to feel like hell at times by careless bureaucratic principles — policy over people.
By learning about some of the impossible situations I have experienced, readers can work to create positive experiences for patients and improve areas of oversight. I will share the emotional cost of developing an extremely rare cancer that had few successful treatment options. My inner experiences are italicized, with my story divided by situation and professionals.
“I hope all of you get to read my paper wherever it ends up,” Alysha said as she accepted her nursing degree. Listen to Alysha deliver her speech (with transcript).
My inner experience
The news
I can’t get over the constant feeling that everything is fake. I feel like I am dreaming and that at some point I will wake up and I won’t have cancer. It will all just be a big mistake. I am not sick, and I am not going to die. But I am.
The whys/what ifs/and second guesses:
- Why me?
- What if doctors had tried harder?
- Why didn’t they look harder? I was healthy. I was young.
- Why didn’t doctors run more tests?
- Why didn’t doctors fight for me?
- Why didn’t doctors request a cardiac MRI?
- Why didn’t doctors want to know more when I was getting effusions?
- What if they had found my tumour in March 2019?
- Would it just have been surgery?
- Would my life have just continued on?
- Would I have been able to live longer?
- What if I had gone to Calgary sooner to get another opinion?
- Did staying in Lethbridge make things worse?
- Why didn’t this happen to someone else, someone older?
- What did I do to deserve this? Did I do something wrong?
I have stopped focusing on most of these questions. The dominant question remains: “What if doctors had done more, looked harder and asked more questions when I was repeatedly hospitalized for pericardial effusions?” My doctors should have wanted to find an answer. They should not have defaulted to “It must be a virus” because every test was coming back with nothing. I felt let down by the same doctor multiple times. Maybe being diagnosed sooner could have been the difference between being terminal and having a longer life. I feel let down by the system and the professional who was supposed to be there for me, take care of me and help me figure out what was wrong. I relied on my doctor to make the best decisions for me. What I needed — and what needs to change for all patients — was for my doctor to advocate for me and find answers quickly.
Random ideas and thoughts
Cancer is not a punishment. I didn’t get it because of the things I did. It’s random, and sometimes it just happens; some people just get it. I’m calling bullshit on every person who has said to me that everything happens for a reason. Don’t ever think of saying this to someone with cancer.
Having cancer has changed my perspective on many things. One of the biggest changes for me is witnessing people who have forgotten to live in the moment, to cherish the people in their lives and the time they get with them. What happened to people? What went wrong? Why are we worried about money and prestige and keeping up with the Kardashians? What happened that made us care more about things than the people in our lives? Time is truly precious. We don’t know how much we will have and often take it for granted. I did when I thought I had lots of time.
Sometimes it feels like you are just your cancer and no longer a human being.
I am feeling the loss of control. I no longer feel strong. I am physically weak and must rely on other people. I have never had to do that. I have done almost everything myself and fought for everything I had, and it was all taken away. I no longer feel like myself. I lost all that I was, and I needed to reinvent myself and learn to be all right with the new me.
Feeling trapped
- It feels like I am an imposter in my own body.
- It feels like this body is no longer mine. It feels like it’s someone else’s, and I am just looking in.
- It feels like my body has betrayed me, like I no longer understand it and no longer feel it will protect me or keep me safe — almost as if it has let me down and is not able to do what it should.
For the first while, one of the worst parts of my diagnosis was the fact that I didn’t look or feel sick. It made me feel like I am not actually dying, like I could live another 50 years. But it’s not that simple because I am dying and I am losing my life.
Before the diagnosis
Here’s a list you may have as well. This was mine before a tumour decided to grow on my heart. I:
- Was leading a normal life
- Was making plans
- Had a life expectancy of 70+ years
- Was finishing my degree in nursing
- Had a job as a health-care aide
- Had many friends
- Exercised
- Lived an active life with my dog
- Barely drank
- Never did drugs
- Did not harm anyone and was kind to everyone
- Cared for others
- Had relationships (a boyfriend, friends, co-workers)
I always used to joke that I was the girl who had one in a million luck — just in the wrong direction! It turns out that that is extremely true! I am one in 50 documented cases in the world who have been diagnosed with cardiac angiosarcoma. The odds of winning the lottery are better than the odds of getting this cancer. But here I am with that one in whatever chance.
Courtesy of the Ramus family
“Family was always very important to Alysha,” says Alysha Ramus’s mother, Michelle. In this family photo are her brother Zachery (at back); sister Paige, father Ken, mother Michelle, and Alysha (middle row); and niece Kennedy, nephew Keegan, and niece Raelynn (front row).
After the diagnosis
It feels like whenever I get my hopes up because something is going well, then the carpet of hope gets pulled out from under me and I fall down. The higher I get my hopes up, the harder I fall. I was hopeful that it wasn’t cancer, but it was. I was hopeful that it would be easy, but it wasn’t. I was hopeful that the cancer was shrinking, which brought hope that it could maybe be contained, but then the cancer spread. I am learning that it is sometimes easier to put hope on the back burner and just live and be grateful for things as they come along. It just hurts too much to have my hope taken from me so many times.
It is very hard to cope with the loss of my entire life and living with this new reality. It’s not easy knowing that when I see all the people who were a part of my “before cancer life” that they’re looking at a completely different time and a different life. They still have the life I used to have.
When I was told I had cancer, I just thought, “Well, I guess I will lose my hair. That’s okay; it grows back.” That was an easy stance to take until I started losing my hair. It started falling out when I would do something as simple as touch it. When I tried to run my fingers through my hair, I would end up with a handful. It really hit me hard that I was actually losing my hair. When I got out of the shower, I’d sit there covered in my own hair and cry because I was no longer able to brush my hair without feeling like I was losing an important part of myself. I never thought losing my hair would ever be something that hurt me as it really is just hair. But it’s not. I have had my full head of thick brown hair for 25 years. It’s part of who I am. It felt comfortable walking around with it each day. It was like a blanket, so even on a bad day, good hair was at least something I had going for myself. I was so lucky to be blessed with a thick head of hair. Many people can’t tell that I’m losing it, but I sometimes cry multiple times a day because I’m losing something that almost everyone has. Most woman are proud of their hair, so for them, losing it can be a particularly difficult experience. In my case, the hair I once used as a way to feel good about myself and to feel normal is being taken away from me, and soon I will be left with nothing but vulnerability. I am not ready, but I also don’t have a choice. I am 25 years old and I will be bald. I will not only be losing the hair on my head, but I could also lose my eyebrows and eyelashes. It’s not just hair: it’s my face, my identity, and part of it is being taken from me.
I have a whole army of supporters, whom I am incredibly thankful for. No words could ever describe how thankful I am for every one of them! These gems shaved their heads in a show of support for me, but they were choosing to shave their heads. That’s a very noble thing to do, but to me the noble part is that everyone who is now bald will have to live a few weeks in my shoes. They, too, will feel vulnerable. They will feel like they are always being watched. They will feel judged and might want to cry. Just remember you will still have your eyebrows. Hopefully, I can learn to draw symmetrical ones — it will not be easy! For everyone else, the next time you see someone without hair, reading my words might make you a little less quick to judge because you have no idea why they have no hair. In the end, it’s not “just” hair.
This is part 1 of 3. Part 2 will be published on March 27. Part 3 will be published on March 29.
Canadian Nurse thanks Alysha Ramus’s family for granting permission to publish her work. To learn more about Alysha, you can watch this interview by Global News.
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