Jubilee writing challenge: A family member’s point of view
Disclaimer: this is based on personal experience, outside Finland.
According to European Code of Cancer Practice, a cancer patient has the right to equal access to affordable and optimal cancer care, including to a second opinion.
Every cancer patient should be able to receive the best available treatment within reasonable cost, and at the same time have the right to choose to be treated by whom and where the best outcome could be attained.
Family members and caregivers also have the access to obtain information about the treatments. This is extremely important because when a family member is diagnosed with cancer, it is most likely that the situation and dynamic within the family would change as well. Receiving the same access of information as cancer patients will help us in providing better support during treatments.
My mother was diagnosed with an aggressive brain tumor. At first, she felt that her right arm was weak. She could not move her arm as much as she wanted.
Then, she was unable to say what she wanted to say. She could not find the right word and substituted one word for another. Even though she could not express herself well, she understood everything we said.
Gradually, she totally lost her ability to talk and to move her right arm.
Many questions in my mind
I remembered when the doctor told me that my mom’s brain tumor is incurable, my head was spinning, my hands become cold. There was a lot of information I needed to digest during that meeting. Many questions came to my mind and I did not know where to start.
What was this tumor’s name? Can I search for it on the internet now?
How come mom can have this, I thought this would be a stroke because she had it before? How long will she be able to live? Is she going to leave me soon like dad who passed away a few months after he was diagnosed with colon cancer?
How is our financial situation? Is insurance going to cover this?
How should I tell my sisters about this?
What? The doctor said biopsy? Open my mom’s skull?
If biopsy result says it is an aggressive tumor, radiation and chemotherapy?
What is this pill called Temodal for? Why is it so expensive?
Then, I looked for as much information as I could possibly find on the internet. One of mom’s friends who had cancer helped to visit several hospitals in my city to ask for second opinion.
Thanks to technology, she also contacted her doctors overseas to gain diverse perspectives because she was treated in different countries. In the end, almost all suggestions lead to biopsy as the next step.
What I have learned
I am grateful that during the process of searching for information, I received supports from many people. They are medical treatment-related topics, nutrition, or practical care at home for my mom. What we provided for mom might not be perfect, however we tried to give her the ‘best’ care within our capacity.
If I could change something, I wish that I prepared myself better for me. My focus was about mom’s treatments. I ‘forgot’ to learn how to be a family member and at the same time a caregiver.
It was hard emotionally to see she had to go through painful treatment process. It was hard to see her, who was talkative and extroverted, not being able to speak anymore.
It was hard to see that gradually she lost her ability to move and walk. It was hard to see those physical abilities to be taken away from her.
It was hard to cope with her personality changes due to her tumor. It was hard to see her having seizures.
It was hard to see MRI results that showed the tumor has only grown bigger and bigger despite radiation and chemotherapy.
It was hard to not knowing when my mom will not be in this world anymore. All of these are still hard for me until now, and maybe even harder.
I hope that family members and caregivers of cancer patients have equal access to information and peer-support. We want to provide the best care, and at the same time we also need to prepare ourselves to fight cancer with our beloved one.
If you are a family member or a caregiver, please give yourself a break in between. Take care of yourself; eat, sleep, take a shower, have your morning coffee.
Ask for help from other people, join peer-support group, and share your experience to people with similar situation.
There will be times where we have to make difficult decisions regarding treatments or family-related things, then listening to our heart and intuition would be the most important thing.