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.

@wyngnit

After reading these posts I am very very touched. I am three months post and going in for blood tests this weekend and then see both my oncologist
breast cancer lumpectomy all removed
my first oncologist said your cancer is cured then ...but we need radiation AI. ONCOTYPE Tests
I’m thinking about changing oncologist and having a second opinion
we have a oncologist social worker I can talk to. We primarily do video visits because of Covid.
I felt like where I was going for my radiation were very caring and when it was over they celebrated I had to bang a gong and they gave me a plaque
at first it felt silly but it helped and validated my time
One of the best helps going through treatment was a video my friend sent me of Freddy, From Queen, singing “another one bites the dust”
he had prostrate cancer radiation treatments
it helpt and made me laugh!
the main thing I’m dealing with is just anger mixed w grief
I don’t wanna be here in this situation

Jump to this post

Hello. I got a second opinion and my surgeon was a Harvard graduate. It's always a good thing for a second opinion, especially when you feel the way you do. You should never feel bound to any doctor if you aren't getting the treatment that you need or if you are uncomfortable with them.

REPLY
@wyngnit

After reading these posts I am very very touched. I am three months post and going in for blood tests this weekend and then see both my oncologist
breast cancer lumpectomy all removed
my first oncologist said your cancer is cured then ...but we need radiation AI. ONCOTYPE Tests
I’m thinking about changing oncologist and having a second opinion
we have a oncologist social worker I can talk to. We primarily do video visits because of Covid.
I felt like where I was going for my radiation were very caring and when it was over they celebrated I had to bang a gong and they gave me a plaque
at first it felt silly but it helped and validated my time
One of the best helps going through treatment was a video my friend sent me of Freddy, From Queen, singing “another one bites the dust”
he had prostrate cancer radiation treatments
it helpt and made me laugh!
the main thing I’m dealing with is just anger mixed w grief
I don’t wanna be here in this situation

Jump to this post

@wyngnit - Great job making it to where you are today. Life does not always deal us the best cards so it is an adjustment to work with those you have. Keep looking for those things that make you “laugh”..

Positive thoughts will be with you this weekend as you have those tests.

I encourage you to reach out when the need arises, can you do this?

Take care!

REPLY

Yes. Thanks. I actually have a great support family and friends kind words and this forum helps my heart

REPLY

After my cancer surgery, I was a hospital in-patient for 7 days and there was a minor procedure that needed to be done. The tech tried it twice and it didn't work; then the charge nurse ried it and it didn't work; then the PA tried it and it didn't work. Somewhere, during these 4 times, and I was terrified because the first time I was more or less ripped in a sensitive part of me and so I was apprehensive after that - some where, some time, a patient tech took my hand and held it during the procedure. She held it tight and she never let go. I was not alone. I loved her for the compassion she showed me,without a word or a hug, it was that hand that reached out and went straight to my heart. Bless whoever she was, because she has the soul of the caretaker and she understands us. Thank you my dear perfect stranger!

REPLY
@earscan

After my cancer surgery, I was a hospital in-patient for 7 days and there was a minor procedure that needed to be done. The tech tried it twice and it didn't work; then the charge nurse ried it and it didn't work; then the PA tried it and it didn't work. Somewhere, during these 4 times, and I was terrified because the first time I was more or less ripped in a sensitive part of me and so I was apprehensive after that - some where, some time, a patient tech took my hand and held it during the procedure. She held it tight and she never let go. I was not alone. I loved her for the compassion she showed me,without a word or a hug, it was that hand that reached out and went straight to my heart. Bless whoever she was, because she has the soul of the caretaker and she understands us. Thank you my dear perfect stranger!

Jump to this post

@earscan, sometimes those smallest gestures can have the largest impact. Thank you for sharing this moment! You’ve certainly gone though so much with your cancer and treatment. It’s frightening just having any type of cancer. We long for some moment of comfort and safe harbor during what can be overwhelming times, to say the least. It’s those little moments such as the tech holding your hand during the procedure which can give us the needed hope for the future. Empathy is a gift not everyone possesses.
My personal moment of inspiration was during a particularly dark moment in my cancer treatment. My night nurse whispered in my ear, “The only thing stronger than fear is hope.” I’ve later learned it’s a quote from a famous author. But since that moment, that quote has impacted the rest of my life. Where are you on your cancer journey? Are you in remission and doing well?

REPLY

I am recovering and everything looks good. I thought I wasn't going to make it, so the fact that everything eventually turned out ok is great. However, my emotional level is not up to chitter chatter of every day conversation; things seem so superficial and mundane when before I was so happy-go-lucky. Sometimes the emotional content takes longer to heal than the physical. I am fighting though it, seeing friends, talking to others on the phone and realizing that my journey was totally personal and it is real to us who are on Connect to share with each other and grow strong. Thank you for your feedback! Gina

REPLY
@earscan

After my cancer surgery, I was a hospital in-patient for 7 days and there was a minor procedure that needed to be done. The tech tried it twice and it didn't work; then the charge nurse ried it and it didn't work; then the PA tried it and it didn't work. Somewhere, during these 4 times, and I was terrified because the first time I was more or less ripped in a sensitive part of me and so I was apprehensive after that - some where, some time, a patient tech took my hand and held it during the procedure. She held it tight and she never let go. I was not alone. I loved her for the compassion she showed me,without a word or a hug, it was that hand that reached out and went straight to my heart. Bless whoever she was, because she has the soul of the caretaker and she understands us. Thank you my dear perfect stranger!

Jump to this post

@earscan- After my last lobectomy, one of my infusion needles was very uncomfortable. It was an antibiotic and I had to have it replaced. Several male interns couldn't reinsert the IV. When the 3rd one started to try I told them, not one more needle goes in my arm. Finally, the female intern came in and did it in a blink. She had turned it into fun and got me out of exploding! I really liked her a lot. We women just have a way!

REPLY
@earscan

I am recovering and everything looks good. I thought I wasn't going to make it, so the fact that everything eventually turned out ok is great. However, my emotional level is not up to chitter chatter of every day conversation; things seem so superficial and mundane when before I was so happy-go-lucky. Sometimes the emotional content takes longer to heal than the physical. I am fighting though it, seeing friends, talking to others on the phone and realizing that my journey was totally personal and it is real to us who are on Connect to share with each other and grow strong. Thank you for your feedback! Gina

Jump to this post

@earscan The fact that you’re recovering is wonderful news. How long ago was your treatment? From personal experience, going through a cancer journey is a singular experience. We can have the most amazing caregivers and friends who are with us every step of the way. They’re well meaning and devoted. But unless someone has gone through the experience themselves they can’t feel the depth of the emotional toll. You are so right about mental healing taking much longer than our bodies did to recover.

It’s not uncommon for us to feel a sense of PTSD. My recovery has gone well, but it was about 16 months later when the gravity of my situation, what I accomplished and survived really hit home. I never realized I had this little “dark shadow of doubt” lurking over my shoulder. It was vague and internal. Facing that triggered a release. It’s now gone! I feel released, energized and back to my old self.
I also found art to be very healing. It gave me momentary periods of escape. Being so focused on what I was doing, allowed for incremental healing to go on in areas of my brain that welcomed the distraction. Do you have any hobbies or outside interests?

From my personal perspective you’re doing everything right. Keeping in touch with friends and family really helps. Though Covid has dealt us a nasty setback in that area. Does your cancer center have any local support groups you could attend? I’m happy you’ve joined us on Mayo Connect. There are so many wonderful people in this community who all work together to assist each other.

Hugs, Lori.

REPLY

These stories are all reminders to me that it is possible to get better. Thankyou all for posting these.

REPLY
@miriam57

These stories are all reminders to me that it is possible to get better. Thankyou all for posting these.

Jump to this post

@miriam57- Good morning. Survivors equal HOPE!

REPLY
Please sign in or register to post a reply.