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https://www.infirmiere-canadienne.com/blogs/ic-contenu/2023/03/29/il-ne-sagit-pas-une-etude-cest-ma-vie-3

Alysha Ramus received her degree before dying of cancer in 2020

By Alysha Ramus
March 29, 2023

The health-care system team

Doctors

When I first met my oncologist, he told me that he had three sides: the optimist, the pessimist and the realist. They all work together in equilibrium, having to be able to understand each other but not rely too heavily on one perspective over the other. At first, I saw the optimist. He was hopeful and acted as if we might have time and might be able to overcome this with a successful resolution.

I met the pessimist when my cancer outsmarted the treatment, with the tumour on my heart rapidly increasing in size and new tumours spreading to other organs. The paclitaxel was no longer working. My doctor expressed urgency; he wanted me to get this school assignment done in order for me to be able to complete my degree requirements for graduation. The realist side of him was pushing for my convocation and made it seem almost as if we were living on borrowed time. It almost felt as if hope was being lost. It was at this time that I knew I was going to die way sooner than I thought. I was not going to live until I was 80. I would be dying young.

“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).

Nurses

I want to talk a little bit about pain. I had a bad experience with unmanaged pain — a cancer patient with unmanaged pain. The pain started halfway through the night and then got a little better with medication, so I went to my regular doctor’s appointment. When I got home, the pain just kept getting worse and worse. I was hoping it would go away because I do not like going to the emergency department. The pain continued to escalate, so I didn’t have a choice but to go.

When I arrived at the hospital, I was in terrible pain. For two hours, I was not offered anything to help manage the pain before being brought to a room. By the time I was settled in a room, I was crying and moaning in excruciating pain. I am pretty sure it was disruptive to other people. The nurses had to organize and decide who would be accessing my chemo port in order to administer any medications. It took them around an hour, while I was in such pain, to finally get me connected and administer pain medications.

This had to have been one of the worst experiences for me.

I understand that there are policies to follow — as a nurse, I really do — but when someone is in that much pain, it would seem important to move things along faster or find something that could be an alternative therapy in an attempt to decrease the pain. Pain management is incredibly important in patient care. I felt very let down that, in this instance, my pain went unmanaged for so long. My other experiences with pain management have been good. My pain has been well managed, and I haven’t been too sedated.

Nurses need to take into consideration why a person is on the floor and ensure that all the normal routine checks and requirements are things that need to be done for that patient! When I was admitted to an oncology/gynecology floor, nurses would check my “flow.” On this floor, when a patient has a gynecological problem or surgery, they will check their menstrual flow. As a cancer patient who was in for pain and a fever, my “flow” was none of their concern. Nurses could do better by simply thinking about whether this is something that could be taken off the orders for that patient. My cancer was on my heart, not in my uterus or vagina. Remember that the patient is still a person and not just the sickness that they are in for.

I was on a cardiac floor when I was diagnosed with cancer. It almost felt like the nurses were avoiding me. They no longer knew what to say or do. The nurses also seemed very stretched for time, which could have been due to understaffing. On the cardiac floor, they don’t often get people with cancer, but that doesn’t mean that as a nurse you shouldn’t adapt. You should be able to be there for your patient even in the smallest capacity — getting them a pop or listening to what they have to say. There were a few nurses who did exactly that for me. They were just there in any capacity I needed. That was the support I needed.

Related article

‘This is not a study. This is my life.’ A nursing student’s final words to the profession (part 1)

Be careful not to assume anything based on age. Sometimes it felt like the nurses were not taking me seriously. Because of my medical background, it was very discouraging to be ignored or not taken for my word. Age is only a number, and the opinions of your patients are very important and can tell you a lot about care and what they might need.

There was a noticeable difference between the nurses in Lethbridge compared to the nurses in Calgary. In Lethbridge, the nurses went above and beyond. They were kind and caring and listened to what I needed. One nurse advocated for me to get a day pass to see my dog. Another advocated for me not to get needles as I do not like them.

By contrast, I had an experience at the Calgary hospital that concerns me. As patients, we have the right to refuse care, medications, procedures and anything that happens in the hospital. Before I started my nursing career, I never would have been able to stand up for myself and refuse things that I did not want, that I knew I did not need. Because of my education, I knew I had a say in my treatment. As per policy, nurses are required to give patients a shot of heparin when they have decreased mobility. Because I wasn’t experiencing decreased mobility, I refused the shot. Heparin burns when they put it just under the skin, and I do not like needles. Because I was mobile, it was not something I needed.

I tried explaining this reasoning to my nurse when I first arrived in Calgary, to no avail. After a long and scary day, the nurse came in to give me a heparin shot. I asked what the shot was and refused it when she told me heparin. She then came back and told me that the doctor had ordered it and it was part of my care plan. I was exhausted. Too tired to argue, I just let her proceed so I could sleep. The next morning, I shared this experience with my doctor, and he told me that I had the right to refuse the heparin and that it wasn’t on the care plan.

Sometimes, as nurses, we focus too much on the medicine and forget that the patient is a person and is allowed to have an opinion and a say in their care.

Specialists

This is only what I have experienced, and I know that this is not always true of all doctors and specialists.

Oncologists:

• Caring — Understanding that I am not just a diagnosis; I am also a person, and the things I need as a person are important. How I feel is just as important as, if not more important than, my cancer.
• Advocacy — My oncologist made getting me discharged and back home a priority. He went above and beyond and even helped me get my degree, although I have some mixed feelings about that. Throughout nursing school, they teach you to advocate for your patients. They teach you that you need to have the strength to stand up for what’s right and what your patients need. When I got my diagnosis, I took some time to take it in and then realized I should be advocating for myself and my ability to finish my semester. As a nursing student and a person, I am responsible for standing up for what’s right and for myself and my needs. Feeling determined, I sent an email stating my case to the university, but was initially rebuffed. It seemed very discouraging that advocacy was one of the biggest things they emphasize in school, but it wasn’t something that they were apparently supporting. Months later, my oncologist asked me how much I wanted my degree. I looked him straight in the eyes and said I didn’t spend 40 grand not to get a piece of paper at least. I am not sure if it was whom he talked to or the impact of having an oncologist behind me, but either way it felt a little sad that advocating for myself was not enough, but having a male doctor do it for me was.

Cardiologists:

• Knowledgeable — Interested in learning more (my case is unique, and cardiologists might only see one case like mine ever — if they even see one case)

Other aspects of the health-care system

Medications

Why are there no incentives for people to bring back expired or unused medications to the pharmacy?

It’s hard to try and remember to take all of my medications on time and ensure that I get the right one. It’s hard to remember to get refills from the pharmacy or to get a prescription from one of my doctors. It’s even hard to remember to pick up my medications.

Did you know that with medications constipation is a big thing? It’s terrible to be constipated, and with chemotherapy, it can be hard to find a balance between very hard and very soft stools. Constipation sucks. It hurts and makes everything even more uncomfortable. Emptying my bowels seemed like something so simple until I couldn’t. Having to take into consideration my daily bowel movements is just another stress in my life, a life that is already very stressful.

Lab work

Nothing describes lab work better than “it sucks.”

I hate needles! This is something I had to desensitize myself to very quickly as I got blood work every week with the first chemo. Now it’s once every three weeks. When I was in the hospital getting my diagnosis, I was used as a pincushion. When my history was taken and I was asked if I was an IV drug user, I wasn’t sure anymore! I have never used or abused drugs in my life. Staff had just taken so many blood samples that my veins are tired.

Another thing I have to remember is to book my regular lab appointments. Booking my blood work over holidays is one of the hardest things I have had to do. Thankfully, when I called, I got a very understanding lady who listened to my situation and was able to book me into one of the two labs that were open on the holiday. I still had to wait in line — a line full of sick people and me with a compromised immune system! Why isn’t there a lab for cancer patients? I tried to avoid anyone who might be sick and used so much hand sanitizer that my hands were raw.

Chemotherapy

It is not a barbaric torture device like I originally thought! The room is well lit, and there is art on the walls. The chairs are comfortable, and there are warm blankets. A group of the kindest volunteers come around and serve me coffee, tea or juice in nice cups and give me a package of cookies. I am not a big fan of Oreos, but I look forward to my chemotherapy Oreos (I have to find the joy in the little things or the bad things can be overwhelming). The nurses are incredibly kind and understanding. They truly care about me. They see me and make me feel safe.

My cancer outsmarted my first chemo treatment. It quickly adapted and continued growing and spreading. A new course of treatment was urgently started. With this new chemotherapy, I dread going because I know that it takes everything out of me and makes me feel hopeless. It almost makes me feel as if dying would be much easier. After three to five days, the desolation and exhaustion pass, and I enjoy the time I have feeling and not looking sick.

Conclusion

The health care I have received has been both positive and caring and impersonal and devastatingly painful. My cancer is rare, but I, too, am extremely rare. I’m the only Alysha Ramus.

It is essential that patients are listened to and that pain is managed. It is essential that treatment plans fit the specific diagnosis of each person, not the floor they are on. A needed change is the process of lab work for cancer patients and the physical location. Of the utmost importance is to improve doctor education with regard to issues of the heart and screening for angiosarcoma.

My intent with sharing my experience is to provide some insight into this experience and begin some uncomfortable conversations. Cherish the people in your life and don’t take time for granted.

This is part 3 of 3. Part 1 was published on March 20. Part 2 was published on March 27.

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.

#opinions 
#clinical-practice 
#nurse-patient-relationship 
#nursing-practice 
#patient-care 
#patient-experience