Fear of recurrence. Survivor’s guilt. Imposter syndrome. Identity crisis.
Often these are viewed as overused buzzwords or stale mental health jargon. Sometimes they are viewed as easy excuses or corny clichés. And in my experience, when someone authentically shares about any of them, the standard automatic response is to discount them. For example:
Person 1: “I’m really afraid of ______ happening again.”
Person 2: “You should just be happy it’s over with and behind you. Stop living in fear and decide to thrive.”
Person 1: “It’s so hard to survive ______. Sometimes I think it would have been easier if I didn’t. And then sometimes I feel really bad for thinking that because I know some people would have stayed alive if they could have even it’s horribly hard. It’s so confusing.”
Person 2: “Well you’re alive and that’s all that counts.”
Person 1: “Why me? I was doing everything right (or so I thought) and then ______ hit and now I have no idea if I was doing anything right. And what now? Can I even trust myself? Can I even trust life? What do I even have to offer?”
Person 2: “Oh stop that. You’re being ridiculous. Stop being a victim and claim your victory.”
Person 1: “I don’t know who I am now. Everything is totally different. I’m totally different. I don’t even really know which way is up.”
Person 2: “Eh, come on now, you’re still the same person. And as soon as you move on, you’ll get back to that person we all know and love.”
V A L I D .
So, I absolutely have the fear of cancer’s recurrence in my life. Every day. Not because I choose to be victim to it but because recurrence literally exists. I was reading a facebook post the other day in one of my cancer groups: Someone asked a question regarding the years between the end of active treatment and a recurrence. 2 years, 17 years, 25 years, 11 years, 14 months, 21 years, 3 years, 12 years, 1 year, 19 years, 6 years, 8 months, 3 different recurrences over 32 years. . . And these were just half of the responses. It’s all over the board. Unpredictable. Untamable. Undeniable.
👉🏼My fear of recurrence is valid. V A L I D .
I am so confused on how I feel about surviving. Not because I’m not grateful. I love living. I also think living in surviving is really hard. But I also know friends in my cancer fam that are dying very very hard deaths. But a lot of us are also living very very hard living. I know people who wish their person hadn’t died. I know people who aren’t sure how to exist now with their person who has lived yet is wholly and totally different.
👉🏼My survivor’s guilt and confusion are valid. V A L I D .
I made some terrible decisions in the midst of active treatment and reconstruction. Of course, I didn’t know any better and I give myself grace because I was doing the best I could with the information I had at the time. But looking back, I chose things that absolutely effed me up. And the harsh reality is I will live the rest of my life paying for that which *I* chose. So, I massively struggle with trusting myself. I massively struggle with trusting life. I massively struggle with trusting why I exist. I massively struggle with trusting what I have to offer. I massively struggle with trusting anything.
👉🏼My imposter syndrome is valid. V A L I D .
I have changed. Completely. Wholly. I feel like I was hit with a disintegrating beam and the pieces to put back together are not even anything recognizable from before so I don’t have a clue how anything fits together now. I feel different. I think different. I believe different. I know different. I do different. I relate different. I see life and worth and gratitude and pain and anger and expression and experiences and relationships and faith and strength and resilience and bravery and courage and death and dying and living and food and sex and wellness and career and trauma and emotions and purpose allllllllllllllllll, completely, 100%, totally, remarkably, vastly, different. Not because I simply choose to but because I was forced to. Some good. Some devastatingly horrible. Some life-giving. Some paralyzing.
👉🏼My identity crisis is valid. V A L I D .
Person 1. Person 2. Here’s Something for Each of You.
If you’ve said things similar to Person 1, I see you. I get you. These things are real and incredibly confusing. You deserve to be seen and understood and heard. You deserve the freedom and the time and the space to make some sense of it all….or to not have to make any sense of it at all. You deserve to have your words matter just as they are. You deserve to be validated in how you feel and experience life. And you deserve to have your authenticity honored. I’m here if you want to share your experience with me.
If you’ve said things similar to Person 2, I’m curious: Are you thinking, ‘well, yeah, those statements are true, and they were said in love so….’ But couching those statements in good intentions, love or even ‘tough love’ is not, in fact, helping. And in truth, it’s doing the opposite.
How?
✅ First – the “truth” here is skewed.
It’s based on the warped expectation that to be well, one just has to choose to be. That strength is one’s ability to move on with little effect. That tragedy is merely a pothole or a detour. That change is unfavorable. This skewed truth actually communicates that the epitome of health is the denial of pain.
✅ Second – it’s unempathetic.
Empathy isn’t limited to a natural gifting, it can be learned and practiced. Empathy is the automatic response of: I’m willing to listen without judgement, tell me more. It is not: I don’t think you should feel that way and here’s why I know better. Empathy is healing and reparative. It is not argumentative and impatient.
January’s Message:
We can be ok and also be not ok at the same time. We are strong even in our pain, and maybe even stronger because we acknowledge it. Tragedy is not a detour where we get back to a road once before on, rather it is whole new road in a whole new country in a whole new world with a whole new language to learn…and no prior knowledge to help that transition. And finally, change is actually a good thing…why would I want to stay the same person, unaffected by and impervious to that which can change me?
💛💛💛 Thanks for reading. “See” ya next month.
Dear Amber,
Nice reading your thoughts in the New Year.
I wish to share with you my recent reply to a lady, under severe stress after her cancer diagnosis– not due to cancer but due to the changed attitude of her family !
I thought, as a life-guide you will have some more aspects to understand such distress , not uncommon among us.
Blessings
From the affected lady:
I’m new here and I’m going to throw something out here that I’ve been struggling with and want to make sure I’m not losing my mind. Also, be forewarned this is not an inspirational comment. I finished my last round of chemo December 19 for breast cancer. Yes, I should be elated, right? Well, I’m happy the chemo is over. That’s pretty much it. I’m struggling with anger, loneliness, sadness and an overwhelming feeling of “what the heck just happened to my life” kinda feeling.
Before my diagnosis I was the one who kept everything together in our family. If someone needed guidance, they came to me. My husband was the bread winner. He was available when needed, but our young adult sons always knew it was Mom who made most of the decisions because Mom knew everyone’s schedule, the budget, the friends, drama situations, school and college commitments, as well as maintaining the home, cooking, cleaning and paying bills. My youngest (16) broke down and took it hard when he heard of my diagnosis. I kept the communication open and we had regular family meetings to discuss what was going to happen to me and what was needed on everyone’s part to help out. We also encouraged everyone to be open with how they were feeling.
My youngest shut down and would only talk to his online friends. My older son (21) buried his feelings and took off to college barely inquiring as to how I was doing. My husband took on the extra roles of caregiver, cook, advisor and “Mom” for the boys. My college son called his dad a lot. He didn’t call me unless he was prodded by his dad to do so. During my treatment, I noticed the relationship between my sons and their dad blossomed. The relationship between me and my sons deteriorated. They barely talked to me. My husband barely talked to me. He only approached me to make sure I was eating enough and taking my medicine. Fast forward to now, 4 weeks since my last chemo treatment. Our boys prefer to be with and talk to their dad. My husband barely talks to me and has buried his head in work. I feel like I was in a coma for a year and when I finally come to I find out my family had created a life without me and now they have no desire to include me back in. Cancer has stripped me of a lot, and I can handle that, but to strip me of the life I had with my family before all this happened is insane. It feels so unreal at times. Is this what happens to families after cancer?! This is why I feel so angry and sad and lonely. Has anyone gone through anything similar? I want to fix this, but I’m not sure how.
Any input is appreciated.
Discussion board emoji 2
Posted: Jan 19 2023
RamanaT
Joined: Apr 1 2020
Reply to @Stayingtrue
Dear Stayingtrue !
Congrats for expressing your emotions and feelings as a cancer survivor in such vivid words !
Yes, it looks so strange to become a stranger in a home which is built-up by your sole effort and sacrifice.
As a long survivor of cancer [16 years], I wish to share my experience in similar situation. Cancer patient is considered as one who is preparing to exit from all the worldly tasks and routine of life. So, most of the near relatives try to develop a mental condition to freeze their emotions towards us– to protect themselves from the depression that may occur when the patient is no more. It should not be considered as “neglecting’ , avoiding” or “ignoring” the dear patient. It is a mental mechanism they adopt to cope up for the future.
On the other hand, I also saw close relatives being so upset with the grief of likely loss, that they attempted suicide!
As a survivor, it is not necessary to think of their changed behavior, but concentrate on our own recovery and rehabilitation fast to normal routines. As a Professor teaching Management students, I observed a big change in their behavior towards me,before and after my cancer surgery. Same with my close relatives, mostly unable to decide how to talk to me- as I am an Alien! However over a period of time they have accepted me slowly as a part of their community.
I utilized the time available , by not getting distracted, to study how I can improve myself– online research into topics of my interest, hobbies I did’t get time earlier. Also I considered this as a unique gift from God to correct my small wayward activities and develop a healthy life-style.
The greatest advantage I got as survivor is the opportunity to meet members outside my small family- to interact with a huge global community, which is in need of services from me. I am active to share, inspire, learn , support and advocate a much larger segment of human-beings.
This is the positive approach to enjoy our changed scenario of life, as decided by God! There are many small things which each one of us can do to bring some relief, comfort and smile to other cancer community members– as being so amazingly done by this Cancer Support Community.
May God Bless you to enjoy quality life as a survivor !
Ramana T
Age 83, from India
Dear Amber,
Your New Year message is very thought-provoking- with amazing insight into our behavior under stress.
I am sharing my recent reply to a cancer-diagnosed house-wife, who is suffering more due to the change in the attitude of her family members, than her cancer ! Not uncommon feeling among us.
Pl convey your thoughts when you face a patient in such situation, during your life-coaching sessions.
Blessings
Ramana
From the lady:
I’m new here and I’m going to throw something out here that I’ve been struggling with and want to make sure I’m not losing my mind. Also, be forewarned this is not an inspirational comment. I finished my last round of chemo December 19 for breast cancer. Yes, I should be elated, right? Well, I’m happy the chemo is over. That’s pretty much it. I’m struggling with anger, loneliness, sadness and an overwhelming feeling of “what the heck just happened to my life” kinda feeling.
Before my diagnosis I was the one who kept everything together in our family. If someone needed guidance, they came to me. My husband was the bread winner. He was available when needed, but our young adult sons always knew it was Mom who made most of the decisions because Mom knew everyone’s schedule, the budget, the friends, drama situations, school and college commitments, as well as maintaining the home, cooking, cleaning and paying bills. My youngest (16) broke down and took it hard when he heard of my diagnosis. I kept the communication open and we had regular family meetings to discuss what was going to happen to me and what was needed on everyone’s part to help out. We also encouraged everyone to be open with how they were feeling.
My youngest shut down and would only talk to his online friends. My older son (21) buried his feelings and took off to college barely inquiring as to how I was doing. My husband took on the extra roles of caregiver, cook, advisor and “Mom” for the boys. My college son called his dad a lot. He didn’t call me unless he was prodded by his dad to do so. During my treatment, I noticed the relationship between my sons and their dad blossomed. The relationship between me and my sons deteriorated. They barely talked to me. My husband barely talked to me. He only approached me to make sure I was eating enough and taking my medicine. Fast forward to now, 4 weeks since my last chemo treatment. Our boys prefer to be with and talk to their dad. My husband barely talks to me and has buried his head in work. I feel like I was in a coma for a year and when I finally come to I find out my family had created a life without me and now they have no desire to include me back in. Cancer has stripped me of a lot, and I can handle that, but to strip me of the life I had with my family before all this happened is insane. It feels so unreal at times. Is this what happens to families after cancer?! This is why I feel so angry and sad and lonely. Has anyone gone through anything similar? I want to fix this, but I’m not sure how.
Any input is appreciated.
Discussion board emoji 2
Posted: Jan 19 2023
My reply:
RamanaT
Joined: Apr 1 2020
Reply to @Stayingtrue
Dear Stayingtrue !
Congrats for expressing your emotions and feelings as a cancer survivor in such vivid words !
Yes, it looks so strange to become a stranger in a home which is built-up by your sole effort and sacrifice.
As a long survivor of cancer [16 years], I wish to share my experience in similar situation. Cancer patient is considered as one who is preparing to exit from all the worldly tasks and routine of life. So, most of the near relatives try to develop a mental condition to freeze their emotions towards us– to protect themselves from the depression that may occur when the patient is no more. It should not be considered as “neglecting’ , avoiding” or “ignoring” the dear patient. It is a mental mechanism they adopt to cope up for the future.
On the other hand, I also saw close relatives being so upset with the grief of likely loss, that they attempted suicide!
As a survivor, it is not necessary to think of their changed behavior, but concentrate on our own recovery and rehabilitation fast to normal routines. As a Professor teaching Management students, I observed a big change in their behavior towards me,before and after my cancer surgery. Same with my close relatives, mostly unable to decide how to talk to me- as I am an Alien! However over a period of time they have accepted me slowly as a part of their community.
I utilized the time available , by not getting distracted, to study how I can improve myself– online research into topics of my interest, hobbies I did’t get time earlier. Also I considered this as a unique gift from God to correct my small wayward activities and develop a healthy life-style.
The greatest advantage I got as survivor is the opportunity to meet members outside my small family- to interact with a huge global community, which is in need of services from me. I am active to share, inspire, learn , support and advocate a much larger segment of human-beings.
This is the positive approach to enjoy our changed scenario of life, as decided by God! There are many small things which each one of us can do to bring some relief, comfort and smile to other cancer community members– as being so amazingly done by this Cancer Support Community.
May God Bless you to enjoy quality life as a survivor !
Ramana T
Age 83, from India
I was diagnosed with stage 1V cancer on 27 August 2020. The cancer had spread throughout my body and as my primary care doctor told me recently, “I didn’t think you would make it.” Obviously, my family must have thought the same thing. They initially took me to the hospital to have two litres of fluid taken from my lungs, for a CScan and a visit with a radiologist during the first two months. I was prescribed Alecsenca which I began taking on 12 October 2020 and the results have been nothing short of miraculous. I still get out of breath but I am doing very well but admit that it is only quite recently that I have felt even close to the new “normal.” I am grateful for being at that stage have been shocked by my family and their reaction, so much so that I believe it has been detrimental to my recovery.
The family live five mins away but the only time I see them is for two hours on a Sunday and I often leave without any conversation. They almost never visit me even when I have been very sick, i.e., two bouts with Covid, Shingles. I have seen my daughter twice, once for two hours but no conversation, since January 1, 2023. My son-in-law, never very caring, so months can go by without my seeing or hearing from him. They have cut me from their
family messaging with no explanation.
Never since those first three hospital visits have they offered to accompany me or even asked about the results of my four-monthly MRI’s and CScans. My oncologist and the team of doctors have been exceptional and supportive.
More importantly, when they do speak it’s to tell me of their famous friends who have been cured of cancer which is wonderful for them, but leaves me feeling as though they consider that I am enjoying my metastatic condition. Do these higher educated people not understand the difference?
It was with a grateful heart that I read Amber’s January posting, which helped me to realize I was not alone feeling abandoned and misunderstood. I thank Ramana T for the posting from India explaining a scenario close to my own. These submissions were very much appreciated by letting me know that this “family issue” is more common than I had known.
With grateful thanks to you both.
Doreen
Thank you for adding your story, Doreen. I’m so sorry they have left you feeling invisible. I’m grateful my post helped you feel less alone. ♥️