I am writing this post a couple of days later than I planned for Mental Health Blog Day. I thought, what a great idea, to blog about something so important -- mental wellness, still considered a taboo topic in our society.
Cancer's physical repercussions are constantly part of the cancer dialogue. The toll this disease takes on our mental health? Not so much. Well, to break the taboo ice, here's my story of how cancer has affected my emotional health and made me dependent on my healthcare providers -- something not unusual in the cancer world.
When diagnosed and going through treatments, I think of only one thing: how to stay alive. I do what my doctors and oncology nurse tell me.
I follow their orders.
I don't want to see them so regularly. But I have to.
I'm in a primal state of being.
I'm in survival mode.
My treatment regimen is brutally inhumane: chemotherapy and radiation during the same period of time. When radiation ends, my chemotherapy will continue awhile afterward. I don't want to be in this situation.
But my oncologist is kind and decides that this treatment is most likely to save my life.
I mindlessly drive myself to radiation and chemotherapy treatments and focus on one day at a time, one treatment at a time. One foot at a time as I walk.
One breath at a time.
I have no energy to do the things that once seemed so simple to me, things I took for granted: walking, talking on the phone, reading, writing, having a bowel movement.
I continue working a full- and part-time job and take only one sick day. I use my well-saved-up vacation days for chemotherapy.
Doctors schedule me for treatments, and I can't say "No, that date doesn't work for me." My life now belongs to them.
I collapse into anxiety and depression. My life is reeling out of control, and all I do lately is cry to doctors and nurses. They all hug me and hold my hand. They try their best to make me feel better. It helps.
Finally, the big day comes.
Graduation.
Treatment is "over," and I am free of the barrage of doctor's appointments -- for now.
Friends and family are celebrating that I'm "done" with these major treatments and therefore "done" with cancer.
In a strange twist, I feel even more anxiety and depression than I did during treatment. I want to be getting radiation and chemo. I don't want to be "done." The fact that routine followups will be part of my care plan does not comfort me.
I need my doctors. I want them to see me everyday. I want to live right across the street from the hospital in case I need medical help.
I miss my radiation oncologist and her beautiful, cheerful smile. I miss radiation, the daily care that the loving staff gave me. Why should I care that I was burnt to a crisp? I miss seeing my medical oncologist. All I want is the security of seeing my doctors.
I miss being closely monitored. I feel hurt, upset, angry, rejected.
I feel like an astronaut in space, and my doctors are in the space shuttle. I feel that my lifeline has been severed, and I am floating away in space, begging my doctors not to let go of me.
"Don't let go of me. Just don't let go."
But they let go, and my forced re-entry into the world is anything but stable. As I land into a sea of turbulence, I realize the world has not changed since my diagnosis, but I sure have.
I am afraid to face the world and don't know how to process what had just happened to me. Life during treatment was in some ways easier because I just had to "do," not "process."
Somehow I've managed to survive. Because my life now belongs to me.
And I've had to let go.
I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. Please feel free to subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com.
This really resonated with me Beth - you brought all those familiar old feelings vividly back to life. Thanks for joining in this challenge - it's so important that we write openly and honestly about this.
ReplyDeleteHi Marie,
DeleteI agree that the conversation needs to continue regarding mental health and cancer. I am glad that I was able to take part in this challenge. Thank you for all your encouragement and leadership.
Beth,
ReplyDeleteExcellent post, so full of emotion. I completely relate to it. We start with survival mode and just "do." That's exactly right. And then yes, "graduation," don't you wish it was that easy. We know it's not that simple when treatment ends to just move on...attention to the patient's mental well-being really should be part of cancer care and survivorship care. Maybe some day it will be. Thanks so much for sharing these personal thoughts and feelings. I'm glad you took part in this challenge too.
Nancy, thanks, as always, for your loyal readership. I completely agree that a patient's mental well-being should be part of survivorship care. Maybe things are changing now, but when I was "done" with treatment, there was no plan in place. It was like, "You got rads and chemo, so you're fine." My doctors are very understanding, but there needed to be mental health followup.
DeleteBeth, it's just brilliant that you have brought up this aspect of cancer treatment for Mental Health Month. It's one of the things that a lot of us feel uncomfortable talking about or admitting to. I agree with with Nancy said. Your candor captures the need for cancer treatment to include referrals for assessing our emotional health and for ensuring that each of us has a plan for dealing with the next step after acute treatment is over. Just because we're done with rads & chemo, etc. doesn't mean we're finished. There needs to be a plan in place, a detailed hand-off to our primary care docs, for instance, to help address long-term side effects, grief, and all the other things that come up. So often, we end up feeling like they're saying to us, "Okay, we saved your life. Now you're on your own."
ReplyDeleteA few of the cancer centers here are now trying to make sure that a written plan is put together for this kind of follow-up and hand-off after acute treatment is done. It needs to the standard of care though. If I can scrounge up some links, I'll pass them on. The CDC has done a lot of work on this.
Excellent post.
Kathi,
DeleteThank you for your comment; I so appreciate it. It's nice to hear that some cancer centers have a post-treatment plan, but unfortunately, so many hospitals and treatment centers fall short. Mine did, even though the physical care was first-rate. Grief is a big issue for me, something that is so important for those of us who endured such a nasty disease. I grieved that my doctors were no longer following me so closely, and I grieve for some aspects of my former self.
Brilliant post, Beth - an interesting angle to take, and one which we are too familiar with. I remember my last chemo. The oncology nurse removed the needle when it was finished, and in a kind of response reaction, I wept and wept. No elation, no celebration. Arrival in the post graduation vacuum, one which had been totally unexpected. Thank you, and I am really glad that you did post.
ReplyDeleteThanks, Philippa, for your insightful comment. You say it so well: "No elation, no celebration." I wasn't all cheery and celebrating. I felt I was shoved out the door.
DeleteBeth, what a great piece about the uncertainties that cancer generates. I relate to every word you say. While cancer changes us irreversibly, we must let go. And that's the hardest part, when we no longer have training wheels or safety nets. Thanks for such a reflective post. xx
ReplyDeleteHi Jan,
DeleteYes, letting go is difficult, isn't it. I love the way you refer to our dependency on the medical system as "training wheels" and "safety nets." Very well-put.
Beth,
ReplyDeleteIt is like you have read my mind. I have been struggling trying to figure out how I feel lately. Not being able to make things "feel good", like I'm not really sure on how to get started again back in "real life". Like you said everything goes on and is the same but you're not. Everyone assumes you are done, you "beat" it, etc. But you don't feel that way. What if I need to go back again sometime soon..what if it comes back, etc. is always going through my mind. Anyway, you hit the nail on the head with this one. I can't believe you worked two jobs through all of this! That is incredible! I could barely focus on a half hour sit com.
Healthy blessings!
Yes, the feelings during and "after" a breast cancer diagnosis are really complex. It's like we are left to pick up the pieces, but cancer is so complex, and the feelings it provokes are so complex, that it's difficult to even fathom. People affected by cancer are never really the same....ever. Thanks for visiting and commenting.
DeleteBeth, what a poignant post-treatment picture of an astronaut whose tethered line to the shuttle full of medical professionals has been severed. My sweet oncology nurses warned me that I would feel disconnected after "graduation." They assured me that it is a common reaction and advised me to continue going to my support group as my lifeline. I did that, and it did help. But a few of the members in my support group didn't make it, and that devastated all of us. There's no clear answer, but the depression and loneliness are very real, and often dismissed by those who are ignorant and want us simply to move on in life. It makes them uncomfortable. But they need to know that it's just not that simple. xx
ReplyDeleteJan, thank you for sharing your experience regarding "graduation." It's a happy-but-scary time in many regards. It's so hard when someone from one's support group doesn't make it, and to have several die had to be excruciating. We had two members die in our support group. Was hard as hell.
Delete