Emotional health after cancer: How are you doing really?

Posted by azkidney57 @azkidney57, Oct 6, 2019

It struck me after my recent appointment with my oncologist how less focus is put on the emotional aspect of a cancer patient. I go to clinic I am checked in. I am asked in passing how I feel. Mostly I just say I am OK. It’s all routine. I saw my doctor he examined me we discussed the plan of action for my scans blood work. When a cancer patient is asked a how they feel often it’s “medical”. How do you “physically”feel.

Now that I am a “routine” patient at my cancer center no one stops to ask how I am “emotionally”. Don’t get me wrong there are people you can talk to. I feel things become so routine and some days I feel less emotionally “fit” than others. I never like going to the cancer center it stresses me. I am better about it but it is still a source of “depression “ and anxiety for me. When I feel this way I need routine. On my most recent visit I was given an “wrist band” to wear. I felt “branded”. Not only do I have to hold on to the appointment reminder “disc” now I am given an wrist band. It bothered me. So if you are a patient you can easily be identified by the disc and now and a wrist band. That my sound nit picky but I notice everything. If it bothers me it must bother other people as well. What would be good would be a place for patients, all patients, just patients to check in.

Ask us how we are today. Ask how we are coping. Ask care givers who bring in patients how they are coping. They should have “therapy” dogs on patrol. I love dogs and I know that would comfort me. It would take away some of the anxiety I feel each time I go to the cancer center. I am still “new” to my cancer. It’s been 6 months since my cancer diagnosis perhaps that is why I experience so much anxiety. I haven’t “accepted “ my cancer. It isn’t OK I have it. I am working through this.

Asking me how I am is a loaded question. Physically I am OK. Emotionally on some days I can be a bit of a “wreck”. The mortality aspect for me is a source of great distress at times. I realize I need to have perspective. Take one day at a time. Some days I could use a hug because even though I am adult it is scary to go to the cancer center and some days the child in me is more on the surface than the adult me. So I need to reel in the child and let the adult take hold.

Someone suggested mantras. I use one when I feel I need it. I tell myself it will be OK. It’s just a visit it’s just blood work it will be OK. That helps.

I believe all cancer patients have PTSD to some extent. I know I have it. This experience has traumatized me. Feeling sick, having symptoms, the diagnosis, the surgery, the recovery, the appointments, the blood work, the scans, the exams, the probing, going back to work, trying to regain “normalcy”, realizing there is a “new” normal, learning to live life the best you can. It is a bit much. It does get better and has gotten better. So when I am asked how I am doing it is a complex question and the answer on some days is convoluted.

At work people always ask how I am no one knows about my cancer because that is my busy but people know I was “sick”. I answer I am OK and move on because the question for me is complex. I would like to respond “ are you asking how I am physically or emotionally?”. No one has time for that. It takes too long.

My close friend asked me how I was and she and asked, “how are you really?”. In this “instant” and mostly impersonal world I am learning how the simple things, the unspoken words, the touch or hug, are often the most impacting. Cancer is teaching me to pay attention to what is around me, next to me, near by. Life is so precious don’t waste it.

How are you feeling today? How are you really? Do you need a hug? Are you feeling sad today? Is there something I can do for you right now?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

You are so right! After going through the double mastectomy, chemo, Herceptin for a year, infections related to implants, reconstructive surgery I have lost who I used to be and I am trying to find out who I really am if that makes sense. I am afraid of every little pain or change and every time I have to go sit on lab results or a scan. There should be some type of help or support for after all the treatments. Maybe it’s just me

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@grandpabob

I am happy to hear your lab work is normal. That is a win in anyone’s books. I too have found scans to cause anxiety. I concur that friends are great but not always what we need in the moment. It is comforting to know that your dog provides a great amount of comfort, pets do indeed have a calming effect. Never feel bad that your mood is not exactly the same as the next person. Treatments and that knowledge of having cancer effects us all in different manners. Have you tried a “meditation” app when your anxiety builds?

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This reply is for an old chat but:
I agree with the meditation app suggestion. It helps a lot to relax you or even to help you get some sleep. I listen to one from "Abide" on YouTube. They have so many to choose from on their site. Or try others with a non-religious theme, they help too. I put it on every night, I tend fall asleep calmly just listening to their stories, I love it.

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@cartersgirl2

You are so right! After going through the double mastectomy, chemo, Herceptin for a year, infections related to implants, reconstructive surgery I have lost who I used to be and I am trying to find out who I really am if that makes sense. I am afraid of every little pain or change and every time I have to go sit on lab results or a scan. There should be some type of help or support for after all the treatments. Maybe it’s just me

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I couldn't agree more, it is so true. Once you have or had the "Big C" every little thing happening with your health, No matter how simple it might be it becomes a threat sending you into an emotional roller-coaster that is ingrained in you forever....it's our new Normal.

Even if you try to stay positive, even if you feel good, even if your cancer didn't need any treatment when first diagnosed or afterwards the fear of the Future is so REAL..

"NO One understands the Fear, Insecurity, Sadness, Anxiety and Frustration that most people feel unless they have walked in their shoes".

So best wishes, love and prayers to everyone here that are trying their best to be happy, healthy and positive under the circumstances.

My advise to all of us is: Smile and be Thankful for today, Pray for tomorrow and Try to mitigate as much as possible those negative thoughts that will come our way sooner or later, we got this!

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@cartersgirl2

You are so right! After going through the double mastectomy, chemo, Herceptin for a year, infections related to implants, reconstructive surgery I have lost who I used to be and I am trying to find out who I really am if that makes sense. I am afraid of every little pain or change and every time I have to go sit on lab results or a scan. There should be some type of help or support for after all the treatments. Maybe it’s just me

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It's not just you! I think we all experience it to some extent .
Early on in my cancer journey someone said "so good the cancers gone!" Internally, I realized I didn't feel that way. That to some extent it was always going to be there. But then I decided that I wasn't going to let it run my life and make decisions for me... I wasn't going to spend more time focused on " it" then I had to. It wasn't going to be an idol in my life. I began to shift my thinking to this... as inviting me to live ... to be fully present and engaged with the life that has been given us ... before it passes us by.
Fully present in each moment as much as I can be.
Cancer dx is a form of trauma and we all handle trauma differently at different times. It's about building our resilience now... doing enjoyable things, grounding in nature, positive relationships healthy habits, releasing stress.
Wishing you the absolute best days ahead!!

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Wow, truer words were never spoken. I'm amazed at how articulate you are about it. Kudos.

I'm a complete sniveling sobbing useless mess of excrement. And I'm sick to death of being sick to death. I've had PTSD most of my life because of horrifying experiences at the hands of doctors. I have never been able to just "let it go." I can't forget, and that makes trusting doctors very difficult. I know being a doctor is one of the hardest jobs on the planet. But respect is a two way street. If only doctors listened more, and I mean TRULY listened - appointments would go faster and treatment would be more successful.

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In 2003, at the age of 25, I received a sudden and unexpected diagnosis of lymphoma. The situation was dire, with the location of the lymphoma giving me only about three days left to live. Swiftly, I underwent surgery and began chemotherapy within a week. This abrupt turn of events left me grappling with post-traumatic stress disorder (PTSD).

The speed of the diagnosis and subsequent treatment left me little time to process the enormity of the situation. Despite returning to school and work just three months later, I found myself harboring resentment and anger at the drastic shift my life had taken. While others admired my perceived strength, I struggled to connect with the reality of facing cancer. Pity from others became a source of frustration, making me less sympathetic to those complaining about illness. Compassion became a conscious effort for me, I don't want to feel like this.

Even now, years later, I live with the lingering fear of another blood cancer. I find it challenging, given the traumatic nature of my past experience. The memories are vivid – the red infusion solution pumping through tubes, triggering unexpected reactions like the taste of metal upon seeing someone drink red Kool-Aid through a swirly straw and getting nausea.

Recently, a routine blood workup revealed dangerously high Hemoglobin and Hematocrit levels along with the presence of the JAK2 mutation. The fear is palpable, and I'm grappling with anxiety about what the future holds. Despite my partner's perception of me as a hypochondriac due to annual blood work anxiety, each test serves as a stark reminder of the fragility of health and the ongoing battle against my fears.

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@swright9

In 2003, at the age of 25, I received a sudden and unexpected diagnosis of lymphoma. The situation was dire, with the location of the lymphoma giving me only about three days left to live. Swiftly, I underwent surgery and began chemotherapy within a week. This abrupt turn of events left me grappling with post-traumatic stress disorder (PTSD).

The speed of the diagnosis and subsequent treatment left me little time to process the enormity of the situation. Despite returning to school and work just three months later, I found myself harboring resentment and anger at the drastic shift my life had taken. While others admired my perceived strength, I struggled to connect with the reality of facing cancer. Pity from others became a source of frustration, making me less sympathetic to those complaining about illness. Compassion became a conscious effort for me, I don't want to feel like this.

Even now, years later, I live with the lingering fear of another blood cancer. I find it challenging, given the traumatic nature of my past experience. The memories are vivid – the red infusion solution pumping through tubes, triggering unexpected reactions like the taste of metal upon seeing someone drink red Kool-Aid through a swirly straw and getting nausea.

Recently, a routine blood workup revealed dangerously high Hemoglobin and Hematocrit levels along with the presence of the JAK2 mutation. The fear is palpable, and I'm grappling with anxiety about what the future holds. Despite my partner's perception of me as a hypochondriac due to annual blood work anxiety, each test serves as a stark reminder of the fragility of health and the ongoing battle against my fears.

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I hear you. It is a trauma inducing situation. A normal reaction to a totally abnormal situation. For me, the down button on the elevator is a trigger. Weird I know ... but down in the basement is where life changed, pain happened, choices in my life were removed and losses in my life multiplied. It is truly like a picture of my life... standing before that button... reaching out to push it ... and hesitating.
It was a choice to make , a courageous choice I now recognize, to push down and not to simply walk out of the elevator. I did walk out once, abruptly to the surprise of everyone in the elevator I pushed aside. But I waited, Took a deep breath and re-entered, pushing the down button.
I dread my favorite season... fall. Because it's the months of my first diagnosis and yearly biggest testing.
As a Crisis trained Chaplain, I know that the best thing to do is have someone talk about their experiences. To process it that way, as soon as possible. But Drs don't want to hear this, really they can't, as their empathy and compassion has to be objective to treat us. And family doesn't really want to understand your hurting, because they don't know how to process it themselves or help you with it as well.
Writing this letter here probably helped you a lot. Maybe finding someone you can speak to who can help you process the pain, fear and anxiety that you feel might help you. A counselor, faith based leader, understanding friend who is willing to hear you.
Just know , we all experience it to different levels and ways.
Do things that ground you, like walking in the sun. In nature, doing things that you enjoy... laughing, loving , living present in each moment. Don't let the inability of others to comprehend your experiences cause you to repeat a negative narrative in your head.
Don't feed on that. Nourish yourself mentally, physically, Emotionally and spiritually with positive things, hope filled things.
Prayers for you

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@rwinney

These are very powerful, valid and true feelings.
Thank you for sharing your feelings. I hope it was a healthy, productive mental release for you. I'm sorry for your diagnosis

I do not have cancer but diagnosed with a disease to which there is no cure or concrete treatment, yet.

I spend every Monday in the apherisis/Infusion unit of the hospital for over 5 hours. I am surrounded by patients of various needs. We all get wrist bands. People of all ages and walks of life. There is no discrimination when it comes to illness. My heart struggles when I hear babies crying and small children screaming. I sit there hooked up knowing there is nothing i can do to comfort them. Some days I'm not sure if i worry more for others or myself. I have been known to unhook for a rest room break and make my path past them to simply say hello, with a smile, and show them my wrist band too.

I hear what you say about the very common "how are you" question. It indeed is a loaded question. One that can have so many layers of an answer but in all honesty is just easier to reply "ok" to. My new reply has been, "hanging in" because generally I'm not "OK".

There have been many times during my infusion, as I sit alone, I have cried. At times peacefully to myself and other times behind the curtain uncontrollably.

It would be comforting to have someone on hand for mental support. That hug, the touch of a dog, etc...

I wish you the best in your journey and again thank you for being real with such sincerity. May good health find it's way to you both physically and mentally.

Rachel

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I am truly struggling so very badly and I have no clue as to why I can’t pull myself together emotionally. I have been so very depressed. Not going anywhere not clean, sometimes my hygiene is questionable I don’t understand. I made it through the chemo, a year of Herceptin infusions, implant infections, losing my right nipple, had oxygen chamber therapy 30 times I ended up having to do the diep flap had three fat grafting sessions and now my insurance refuses to pay for more even though it’s horrible looking. Anyway, I am on an antidepressant but I have no desire to do anything or see anyone I think I feel as if I don’t know who I am anymore. I was an RN for years now I can’t work because of fatigue and chemo fog. I am sorry guys I don’t mean to dump but I need help somehow something has got to change or help. I have never had these emotions of no self worth or whatever this is. Thanks for listening.

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@cartersgirl2

I am truly struggling so very badly and I have no clue as to why I can’t pull myself together emotionally. I have been so very depressed. Not going anywhere not clean, sometimes my hygiene is questionable I don’t understand. I made it through the chemo, a year of Herceptin infusions, implant infections, losing my right nipple, had oxygen chamber therapy 30 times I ended up having to do the diep flap had three fat grafting sessions and now my insurance refuses to pay for more even though it’s horrible looking. Anyway, I am on an antidepressant but I have no desire to do anything or see anyone I think I feel as if I don’t know who I am anymore. I was an RN for years now I can’t work because of fatigue and chemo fog. I am sorry guys I don’t mean to dump but I need help somehow something has got to change or help. I have never had these emotions of no self worth or whatever this is. Thanks for listening.

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Hi there, I'm so sorry to hear your words of despair. You can dump here anytime. It's completely understandable why you feel the way you do and are in a hole. Sometimes when we're so lost in our minds we stifle our growth and problem solving skills to see our way out . You have been challenged and overcome quite a lot, be proud of that, be kind to yourself. While I have never had cancer, I do live with chronic pain condition which caused me to lose my career just like you and question who I was and what my purpose is. This rebuilding process takes time and small steps towards finding yourself again. Sometimes the calm after the storm is when we really get lost but please know that through every bad storm the sun always comes out again. Can you think of one small thing that you can do today that may begin forward motion again for you to realize that you count, you matter, and you will get through this temporary setback ?

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@rwinney

Hi there, I'm so sorry to hear your words of despair. You can dump here anytime. It's completely understandable why you feel the way you do and are in a hole. Sometimes when we're so lost in our minds we stifle our growth and problem solving skills to see our way out . You have been challenged and overcome quite a lot, be proud of that, be kind to yourself. While I have never had cancer, I do live with chronic pain condition which caused me to lose my career just like you and question who I was and what my purpose is. This rebuilding process takes time and small steps towards finding yourself again. Sometimes the calm after the storm is when we really get lost but please know that through every bad storm the sun always comes out again. Can you think of one small thing that you can do today that may begin forward motion again for you to realize that you count, you matter, and you will get through this temporary setback ?

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Thank you so much for your kind words. It means so much to know that someone understands when I say I have lost who I was. I don’t know who I am emotionally and definitely don’t like who I am physically. Sounds vain and I never thought I was before.

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