If you haven’t had cancer...
Personal Update:
I finished my 18 weeks of chemo and 3 weeks later started 33 sessions of radiation. I finished radiation on June 27th, the day after the school year ended. My hair has officially started to come back (yay!), although every day it is a reminder of how hard the last year was. My surgeries and treatments lasted the entire last school year (September-June), and I am very excited to start this next school year without any of that on my list of to-dos. I have started two medications to suppress estrogen and shut down my ovaries for at least the next 5 years. My hope is to have reconstructive surgery next summer.
I want to apologize to those of you who wanted to celebrate with me as I finished my chemo and radiation therapies. The end of radiation was an (unexpectedly) emotional time. While I knew I should be excited to be done with such a difficult thing, I just couldn't stop thinking about how this will be a life-long journey that will be affecting my life. It is not something that I can check off the box and say, “Yay! Cancer is done!” I am not allowed to have children when I want to, I know the doctor building like the back of my hand, I may pass an unknown breast cancer gene onto my children, and there is always the fear of it returning and causing cancer somewhere else in my body because there is no guarantee that every cell was taken care of through treatment. These feelings are what made the end of treatment difficult and inspired me to write the rest of this post.
If you haven't had cancer...
While I don’t know every cancer patient, I have spoken to others dealing with breast cancer and obviously have my own experience. Here are things that we noticed were frustrating to us, or misunderstood by those without our cancer experience. My hope is these thoughts will allow you to better support those in your life with cancer.
1. Please don’t share or push medical advice or miracle cures. We don’t want to hear about some distant relative of yours who drank special water or had a specific diet and their cancer disappeared (for those of you thinking that’s ridiculous - we have heard it). Your suggestions may help in lifestyle going forward, but we are in the middle of real and very crappy medical treatment, making very difficult life-changing decisions. Do not dismiss our pain or struggle with some crazy and easy fix. And, every cancer case is different and has its own treatment pathway. What worked for my friend’s case, May not be what’s right for mine. Leave the treatment to our medical care team.
2. Talk normally and stop with the sympathetic looks. Here is my experience when people find out my situation... “Awww, wow. I’m so sorry... (crinkled forehead, awkward silence, lack of eye contact, end of conversation as fast as possible)” or the crazy advice/story of someone they barely know who had cancer. It is helpful to acknowledge that having cancer sucks, but please ask about it in a genuine way. For us cancer patients, it is a BIG part of our daily life. It sucks, but I would rather tell you about my treatment without feeling weird about it. Don’t ask how I’m doing, or how it’s going, unless you actually want to hear something other than it’s “good” or “fine”.
3. Celebration? If we aren’t making a big deal about it, it’s because we don’t feel as if a big mile stone has been crossed, or we don’t like being the center of attention and having attention brought to our newly abnormal life. Our lives do not go back to our “normal” before our cancer diagnosis, as much as we long and hope for that. There is still follow up (medications, surgeries, appointments, fear, lack of physical confidence) that is a big deal to us. The journey did not end with the end of the most well-known parts of treatment.
4. Testing going forward - Depending on the person’s situation, there may not be any official test, other than physical exams, to monitor any future progression/appearance of cancer. This is my case. With the ending of my chemo and radiation, I will not take a test like a CT or blood test to see if the
cancer is actually gone. It is more of a “wait and see and hope it’s gone and didn’t spread” game. Tests can detect tumors or in some cases, clusters of active cancer, but none detect small amounts or cells of cancer roaming around.
5. “Cured” is not a thing. This is not a “yay I survived cancer and I will not have to worry about it again” thing. It is a constant worry that every cell was not killed, and treatment will last for a long time (different for every person, depending on their history of cancer, age, and the stage (the size) and grade (speed of growth/aggressiveness) of the cancer). Some make it past the five year mark and their chance of recurrence is almost none but it still exists. In some cases, hormone treatment will last for 10 years. Recurrence is a consistent thought, and the end of radiation and chemo does not mean we are free and clear. I am somewhere in the middle. I am doing other hormone treatments than what I tried the first time, and will do my best to make lifestyle choices (low fat diet, good sleep, exercise, etc.) that will continue to reduce my risk of another recurrence.
6. Please don’t disappear! Often when we are first diagnosed or treatment begins is when we have the most people support us. As our journey goes on, it seems people get bored of checking in or giving support, or forget about us. It may be after chemo/radiation when we need emotional support the most. It’s okay to not know what to say, sometimes we just want a sincere listening ear without seeing your eyes glaze over or you moving on to a different topic at the speed of light. We don’t want to feel like we are making you uncomfortable or bored, but our situation and experiences have been difficult and life changing. We don’t want to avoid them, we want them to be a safe and normal part of discussion with people in our support system.
Please continue to support those in your life who are dealing with cancer in a consistent way, remembering that the journey is long. A strong support system can make all the difference.
I have been thinking about these verses recently, knowing that God is not concerned with my happiness, but my holiness. Suffering forces you to do many things, and remembering that this world’s suffering is temporary in light of eternity is one of them. It has been making me ask myself, “How is my time best spent? Avoiding others in search of my “me” time or work? Or is it in actively pursuing intentional relationships, finding how I can serve others with what they need?” Do they need a venting session? Food? Someone to watch a comedy with and laugh in the midst of pain? The answer to “How is my limited time in this life spent?” Is always in service to others.
I finished my 18 weeks of chemo and 3 weeks later started 33 sessions of radiation. I finished radiation on June 27th, the day after the school year ended. My hair has officially started to come back (yay!), although every day it is a reminder of how hard the last year was. My surgeries and treatments lasted the entire last school year (September-June), and I am very excited to start this next school year without any of that on my list of to-dos. I have started two medications to suppress estrogen and shut down my ovaries for at least the next 5 years. My hope is to have reconstructive surgery next summer.
I want to apologize to those of you who wanted to celebrate with me as I finished my chemo and radiation therapies. The end of radiation was an (unexpectedly) emotional time. While I knew I should be excited to be done with such a difficult thing, I just couldn't stop thinking about how this will be a life-long journey that will be affecting my life. It is not something that I can check off the box and say, “Yay! Cancer is done!” I am not allowed to have children when I want to, I know the doctor building like the back of my hand, I may pass an unknown breast cancer gene onto my children, and there is always the fear of it returning and causing cancer somewhere else in my body because there is no guarantee that every cell was taken care of through treatment. These feelings are what made the end of treatment difficult and inspired me to write the rest of this post.
If you haven't had cancer...
While I don’t know every cancer patient, I have spoken to others dealing with breast cancer and obviously have my own experience. Here are things that we noticed were frustrating to us, or misunderstood by those without our cancer experience. My hope is these thoughts will allow you to better support those in your life with cancer.
1. Please don’t share or push medical advice or miracle cures. We don’t want to hear about some distant relative of yours who drank special water or had a specific diet and their cancer disappeared (for those of you thinking that’s ridiculous - we have heard it). Your suggestions may help in lifestyle going forward, but we are in the middle of real and very crappy medical treatment, making very difficult life-changing decisions. Do not dismiss our pain or struggle with some crazy and easy fix. And, every cancer case is different and has its own treatment pathway. What worked for my friend’s case, May not be what’s right for mine. Leave the treatment to our medical care team.
2. Talk normally and stop with the sympathetic looks. Here is my experience when people find out my situation... “Awww, wow. I’m so sorry... (crinkled forehead, awkward silence, lack of eye contact, end of conversation as fast as possible)” or the crazy advice/story of someone they barely know who had cancer. It is helpful to acknowledge that having cancer sucks, but please ask about it in a genuine way. For us cancer patients, it is a BIG part of our daily life. It sucks, but I would rather tell you about my treatment without feeling weird about it. Don’t ask how I’m doing, or how it’s going, unless you actually want to hear something other than it’s “good” or “fine”.
3. Celebration? If we aren’t making a big deal about it, it’s because we don’t feel as if a big mile stone has been crossed, or we don’t like being the center of attention and having attention brought to our newly abnormal life. Our lives do not go back to our “normal” before our cancer diagnosis, as much as we long and hope for that. There is still follow up (medications, surgeries, appointments, fear, lack of physical confidence) that is a big deal to us. The journey did not end with the end of the most well-known parts of treatment.
4. Testing going forward - Depending on the person’s situation, there may not be any official test, other than physical exams, to monitor any future progression/appearance of cancer. This is my case. With the ending of my chemo and radiation, I will not take a test like a CT or blood test to see if the
cancer is actually gone. It is more of a “wait and see and hope it’s gone and didn’t spread” game. Tests can detect tumors or in some cases, clusters of active cancer, but none detect small amounts or cells of cancer roaming around.
5. “Cured” is not a thing. This is not a “yay I survived cancer and I will not have to worry about it again” thing. It is a constant worry that every cell was not killed, and treatment will last for a long time (different for every person, depending on their history of cancer, age, and the stage (the size) and grade (speed of growth/aggressiveness) of the cancer). Some make it past the five year mark and their chance of recurrence is almost none but it still exists. In some cases, hormone treatment will last for 10 years. Recurrence is a consistent thought, and the end of radiation and chemo does not mean we are free and clear. I am somewhere in the middle. I am doing other hormone treatments than what I tried the first time, and will do my best to make lifestyle choices (low fat diet, good sleep, exercise, etc.) that will continue to reduce my risk of another recurrence.
6. Please don’t disappear! Often when we are first diagnosed or treatment begins is when we have the most people support us. As our journey goes on, it seems people get bored of checking in or giving support, or forget about us. It may be after chemo/radiation when we need emotional support the most. It’s okay to not know what to say, sometimes we just want a sincere listening ear without seeing your eyes glaze over or you moving on to a different topic at the speed of light. We don’t want to feel like we are making you uncomfortable or bored, but our situation and experiences have been difficult and life changing. We don’t want to avoid them, we want them to be a safe and normal part of discussion with people in our support system.
Please continue to support those in your life who are dealing with cancer in a consistent way, remembering that the journey is long. A strong support system can make all the difference.
“May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had” - Romans 15:5
“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day
by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18
I have been thinking about these verses recently, knowing that God is not concerned with my happiness, but my holiness. Suffering forces you to do many things, and remembering that this world’s suffering is temporary in light of eternity is one of them. It has been making me ask myself, “How is my time best spent? Avoiding others in search of my “me” time or work? Or is it in actively pursuing intentional relationships, finding how I can serve others with what they need?” Do they need a venting session? Food? Someone to watch a comedy with and laugh in the midst of pain? The answer to “How is my limited time in this life spent?” Is always in service to others.
I LOVE this post, Lindsey! Thank you for being transparent - and honest - and YOU!
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