A cancer patient’s mental health.
Cancer centers are realizing and addressing the mental health needs of a cancer patient. University of Texas Southwestern Medical Center (the cancer center I am being treated at) provides free counseling for cancer patients and their families. https://utswmed.org/cancer/support-services/psycho-oncology/. My cancer experience has made me much more aware of my own mental health needs and at first I was surprised to discover these needs. I dedicated a blog post to it. Here is the link to read about it https://juliesnotdyingtoday.com/cancer-and-depression/.
Before my cancer diagnosis, I had never experienced clinical depression and have been a happy person who just goes with whatever comes my way knowing I will get through it. After my diagnosis, I find my thoughts go to dark places like, “how will I die? Will it be painful?” “Will people remember me?” “Do I have enough time to strengthen some relationships?” “Was I a good enough Mom?” “should I fight to live or just give up?” “Is there any hope that my treatment is working?” “Will the next scan show more tumors?” “I am fighting this aggressively, but how will I know when it is time to quit trying and”let nature take it’s course?” “How can I live with these side effects?” How can I live in a wheelchair?” ” I am so sad to lose my independence. I can no longer walk, drive, etc.”
My counselor
The worries are endless, and this anxiety is not unique to people like me with stage 4 cancer. Patients who had stage one or two and had their cancer surgically removed worry that any day when they least suspect it their cancer may come back. Anxiety, grief and depression are not respecters of stage of cancer. Fortunately my oncologist referred me to a counselor. A counselor addresses the mental health needs of a cancer patient. I strongly recommend counseling services to all cancer patients, and really anyone dealing with grief, depression and or anxiety. My counselor helps me sort through and deal with all of my emotions and helps me find hope as I live with this horrid disease. She has helped me find purpose in my life with cancer. I dedicated a blog post to my experiences with my counselor. Read about it here https://juliesnotdyingtoday.com/embracing-survivorship/.
Support groups
Support groups are also very helpful, and I feel essential for cancer patients. A simple search on facebook can lead you to a support group specific to your cancer or other chronic illness. For kidney cancer, I found KCCure, https://kccure.org/ , an amazing organization whose mission is to provide support to kidney cancer patients and caregivers, and to raise funds to support research in order to find a cure. There are links to many different kidney cancer support groups on their site https://kccure.org/kidney-cancer-patient-support-communities/.
I cannot describe how priceless it is to find and interact with a group of people who have my exact sub-type of cancer. The group shares their experiences with different treatments, side effects, etc. My support group helps me see that it is possible to live a good quality of life with terminal cancer, and that there are treatments that give me hope. Support groups help tremendously with the mental health of a cancer patient.
In addition to support groups online, I go to a live support group of stage 4 cancer patients. I have learned to love every member of my group, and I am learning from them how to live with this. They strengthen me when down, listen to my concerns, and laugh and cry with me. It is a safe place where I can share anything because they all just get it. They understand some things better than my family and friends, and they are not afraid of whatever I say. The group I go to is at Cancer Support Communities and there are groups around the country. All services are free. https://www.cancersupportcommunity.org/FindLocation
Covid 19 and the mental health of a cancer patient
This post addresses the mental health of a cancer patient from my perspective, but we are all now dealing with Covid 19 and perhaps my experience and insight might sound familiar to others with and without cancer. So, with my counselor and my support groups, it looks like I have it all figured out right? I thought I was cruising right along pretty well, but have been really surprised during this Covid 19 quarantine. In fact, while others have struggled with the isolation, I have enjoyed having my husband and daughter home all the time. They help me with meals and other physical needs and I feel their support. I feel like the rest of the world (well, at least my family) has slowed down to my speed, and I treasure the time we have together.
New Covid 19 concerns
Amid this close family time, I admit, I have worried that I may die from Covid 19 after years of fighting cancer. I would hate for Covid 19 to be what does me in. If I do get Covid 19, will I die alone? Will I just suffocate or drown in mucus…alone? If my cancer treatments or scans have to be cancelled or postponed because of Covid 19, will this affect my cancer? I sometimes have to go to the hospital due to side effects of my cancer treatment. Sometimes the side effects are serious and I need the ICU. If I need the hospital, will there be a bed for me? If I go to the hospital, will I get Covid 19? These are new concerns that bring me anxiety and sadness.
KCCure recently did a survey of cancer patients to determine concerns they had about Covid 19. They recently posted a Covid 19 post that addressed some of the concerns of kidney cancer patients. It is a good post and provided me with some relief from my concerns. You can read it here: https://kccure.org/2020/04/covid-19-update-risk-for-kidney-cancer-patients/. I plan to deal with my new anxiety amid Covid 19 by talking with my counselor and maybe my support group. I am also dealing with it by doing everything I can to avoid getting the virus. No matter what the rest of my community does, I will quarantine for the rest of my life, or at least until a vaccine is available. Then I will redirect my thoughts to the joy I experience having my family around everyday. I will also spend time everyday in prayer and scripture study. I have started these things and they are helping.
Social media
Shelter at home, and social distancing has required more internet communication. I have doctor appointments when possible on the computer. My live support group is now on zoom. And, I connect with friends on facebook. I laugh at memes, enjoy pics of friends and family, and share thoughts and feelings. For the most part Facebook has been a good thing. Recently however, I have been so surprised at how some opinion posts have caused me great pain and new depression! Specifically, opinions about the quarantine. Usually, I am able to just scroll by posts I disagree with. I usually can just roll my eyes and move on.
However, this Covid 19 situation is literally life or death for me and because of this, I have had to block a few friends and even a relative in order to stay mentally strong. This is significant. I have never blocked anyone before, not even during the election! I made a virtual appointment with my counselor to work through these new emotions coming from Covid 19 and social media.
Political opinion.
What kinds of posts could bring me new feelings of sadness? It is the “us against them” position. Specifically, the elderly and chronically ill against the children and grandchildren. Here are a couple of recent examples. I have a personal policy of not posting anything political because I do not like the conflict. Recently however, Dan Patrick, the Lieutenant Governor of Texas (he is an elderly man in the high risk of death from Covid 19 category), made a statement to the media that he was worried about the economy, and would personally, be willing to succumb to Covid 19 for his grandchildren. He said that many grandparents feel the same way. https://www.nbcnews.com/think/opinion/coronavirus-has-donald-trump-dan-patrick-ready-sacrifice-older-people-ncna1169126
Results of my mistake.
My mistake was ignoring my personal facebook policy and posting Dan Patrick’s remarks and how I disagreed with them. I wrote that my kids and grand kids have told me that they want me to live. My personal motto since my cancer diagnosis is “Julie’s Not Dying Today.” I fight hard everyday to stay alive. I did not want to feel shame for wanting to live, and I did not think the economy was more important than life itself. I also understand that the quarantine is not forever, and felt we would bounce back stronger than ever.
Still, I wondered, “am I selfish to want to live?” “Do a lot of people resent my fight to live?” I even surprised myself with a suicidal thought, “maybe I should just quit and give in to this cancer if people see me as expendible.” Well, most of my friends commented with words of support for me to continue to fight to live. But, two of my friends agreed with Dan Patrick and felt that older people and people with health concerns are taking food from children. They are against the quarantine, but I read that they were against the elderly and ill, they were against me. They certainly did not consider my life as valuable.
I ended up having a good private conversation with one friend who hadn’t initially considered my perspective. Further, I ended up blocking the two friends who doubled down on their opinion because it hurt me so much. The blocking was more about me than them. I did not trust myself that I could just scroll past their posts and avoid future conflicts, and I did not want to further destroy my relationship with them.
Us against them.
A second incident recently happened again on facebook. A relative of mine posted a long post on facebook about how with the worldwide quarantine, governments are “killing children to save the elderly.” She cited articles from the UN about how children will die. She also spent a lot of her post explaining that people who die from the virus would die soon anyway due to their health complications, and that most of those complications were from choices they made. In other words, we should not worry about their deaths because they made bad choices. In a nutshell, the elderly and high risk people are expendable and we should carry on about life as normal without quarantine and not worry about the Covid 19 deaths.
Most of her friends commented in agreement with her. One person even called the elderly, “selfish jerks.” My heart broke. Not just because this was another, “us against them” post, but because it was from someone I loved. I was just not prepared for the anger directed to an entire group of people. A group I am a part of. I decided to unfollow my relative so I would not see future posts. Again, I did this so that I wouldn’t be tempted to comment on another post and further destroy a relationship with someone I love. I also did it to avoid negative energy or feelings. I need to be mentally strong in order to fight my cancer.
Tips for dealing with sadness, depression, or anxiety from Covid 19 social media posts.
This is not a post for or against the quarantine. My opinion is that we need to stop pitting groups of people against each other and to consider the personal implications of the opinion you are going to post. I realize that I will never change the opinion of people, and don’t want to try. In order to meet the mental health needs of a cancer patient, I guess my tips for dealing with sadness, depression, or anxiety from Covid 19 social media posts are:
1. Take breaks from social media.
2. Remember that a lot of times people are just not aware of how their post will affect you personally, and that your feelings may be more about dealing with cancer (or whatever you are dealing with) and not about the person.
3. Finally, don’t be afraid to unfriend or block people who tend to post upsetting things.
Find the silver lining.
I will talk more about the new sadness and depression I feel with my counselor and my support group. What issues have you experienced during this Covid 19 situation? What have you done that helped? I would love to read them in the comments. It has been so moving to see the majority of people working together to defeat this virus. I will be eternally grateful for everyone working together and for the love, and concern of my friends and family. In the meantime, find the silver lining in your situation. Are you closer as a family because of the quarantine? Has it been good to slow down? How have you found joy?