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.

michellesimpson10 | @michellesimpson10 | Nov 22, 2023

Sending you love , hugs and prayers 💜💜💜💜.
In April 2023 I was diagnosed with a NET tumor in the tail of my pancreas and in May I
Had surgery. I haven’t truly processed
The entirety of my diagnosis because I tend to just shut it away and out in a brave smile.
I have times at the most random times where I will get scared and cry and realize that I have cancer
It is true that people don’t always ask about the emotional toll and status
I have turned to my family and church and pray when I feel
Weak.
I have loved having the support here on the Mayo Clinic groups where we can ask any questions and have a loving and supportive response.

cartersgirl2 | @cartersgirl2 | Nov 22, 2023

In reply to @cartersgirl2 "Thank you so much!" + (show)

You will never ever know how much your words mean to me. I am trying to get hep. I saw a counselor who is referring me to a therapist to adjust my meds. She wanted me to be hospitalized and try magnetic therapy of some kind. She says d I may have to try shock therapy I just want to find myself again

richardab | @richardab | Nov 22, 2023

In reply to @wlhickey "Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of..." + (show)

I'm with you. I was recently diagnosed with bladder cancer through a round-about series of events. No blood in urine, an abdominal CT showing bladder thickening and a follow-up cystoscopy showed a tumor. A TURBT with chemo or BCG has been scheduled. Very matter of fact from the doc, no discussion on how I felt. I did get a 2nd opinion, always do so with oncology cases. Good days and bad. I've read how these type of tumors commonly recur. I wonder if I'll be taking treatments the rest of my life and how everything will affect everyday life. Stay strong.

jc76 | @jc76 | Nov 22, 2023

In reply to @liv38556 "It’s true. Emotional health isn’t addressed at all. My cancer issues are compounded by the fact..." + (show)

If you move to an area that has Mayo Clinics you will have outstanding service.

I have found when I have a suspicious area they make what they call an acute visit appointment which has priority.
Good luck. I hear horror stories about the wait for dermatologists appts.

I see a P.A. who is outstanding.

wlhickey | @wlhickey | Nov 22, 2023

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

Rachel, Volunteer Mentor | @rwinney | Nov 21, 2023

@cartersgirl2 Good for you! What a wonderful distraction to keep your brain engaged and positively focused. Creativity has healing powers, just like nature. Do what you got to do to get through one step and one day at a time.

My fellow mentor @jenniferhunter loves to paint and is a very talented watercolor artist. I'm pretty sure painting has seen her through some difficult times as well.

What type of doctor is going to help with your medications? That sounds like a move in the right direction. Are you on board with this?

cartersgirl2 | @cartersgirl2 | Nov 21, 2023

In reply to @rwinney "Hi there, I'm so sorry to hear your words of despair. You can dump here anytime...." + (show)

Thank you. I am going to try to paint today and not cry. I have been referred to someone to get some help with medications. I have never felt so absolutely lost in all my life I am praying. I do trust God but these feels scare me

cartersgirl2 | @cartersgirl2 | Nov 20, 2023

In reply to @lbrockme "I understand that conflict of emotion. Who i was ... was different . I had to..." + (show)

Thank you so much you will never know what that means to me. This is a huge gap in the cancer treatment map that really needs to be addressed. I had a lot of info regarding procedure, pain and healing but not really anything on the emotional trauma. I do covet your prayer and thanks again

Lynne Marie | @lbrockme | Nov 20, 2023

In reply to @cartersgirl2 "Thank you so much for your kind words. It means so much to know that someone..." + (show)

I understand that conflict of emotion. Who i was ... was different . I had to adjust to that over the years.
After my last set of surgeries I found another IV site I hadnt noticed for the first day or two. Despite being covered in multiple incisions etc, this unsettled me. While I appreciated not having to go thru multiple IVs , it felt very dis-empowering . The whole process of cancer can be
I try to look at those emotions and process why I feel that way. Loss of control is a big part for me , I have learned. So I find ways to try and mitigate that a little. Being informed, making sure I'm part of the decision making process, being responsible to do what I can to heal . Not just physically, but emotionally, mentally and spiritually. My faith foundation, my family connections, feeling useful, Ive found all of those are huge in my healing .
It's finding what is for you. Praying you are doing better!