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Emotional health after cancer: How are you doing really?
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?
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Thanks for the info. As I have metastatic breast cancer my treatment is never over. So I believe I am always in a critical medical stage. So not sure if connections with cancer survivors would help me. I will check out your reference however.
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5 Reactions@schindler, I almost forgot this online event coming up on April 28, 2021
- REVITALIZE YOUR WELLBEING: Breast Cancer Survivorship Care Planning Wellness Webinar https://connect.mayoclinic.org/event/revitalize-your-wellbeing-breast-cancer-survivorship-care-planning-wellness-webinar/
It's free and available online.
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3 Reactions@schindler, it is true that the medical attention turns to routine follow-up after active treatment is complete. This leaves some people with a feeling of relief and others feeling abandoned (and possibly many other emotions in between). Emotional health can get lost in the fray.
Should you be looking for continued support or have unaddressed needs, I have a few suggestions for you:
1. Ask for a referral to a Mayo Clinic social worker specializing in cancer. Read more here (including the comments:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
2. Follow the Breast Cancer group and connect with other members for continued peer support
- Breast Cancer https://connect.mayoclinic.org/group/breast-cancer/
3. Join the monthly breast cancer support group on Zoom https://connect.mayoclinic.org/event/breast-cancer-support-group/
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2 Reactions@schindler I can relate to that little deflated feeling after being the focus of so much attention initially during treatments. But in reality, I’ve learned over my cancer journey that I’m in their sights, just not the immediate focus of a critically ill patient. Look at it as sort of a graduation. You are doing so well or progressing in your treatments that it HAS become routine because you are no longer in immediate crisis. Does that make sense? If you have a problem I know the team would be reorienting around you.
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3 Reactions@schindler- I empathize. It can seem like this because, at first, we have tons of lab tests, treatments, scans, and whatever. We learn new vocabulary and meet new people and make life-changing and challenging decisions. It established what I needed, and how I needed to change my life. It gave me time to get used to it, ask and think about earthly questions concerning life and death and thinking the worst. Life was anything but stable.
I can understand if you aren't getting the attention that you need, or get treatments or have questions asked, but do you really want to go back to all of that stress? With cancer, we never know what's ahead of us (unless we do) so this might be a good time to revel in it before things change again. Does this make sense? I don't want to go back to that.
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3 ReactionsAgree and I love the Mayo breast cancer team but it seems as if once you are started in treatment and you meet up regularly with your team things turn to routine. But not for we the patients! The attention I got initially has become less and less.
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2 ReactionsThank you. So kind. Donna
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1 Reaction@rhongirl- Good morning and welcome to Mayo Clinic Connect. I am a mentor for lung cancer and lung health for Mayo Connect. Although I have not had breast cancer I can well understand how you are feeling because I am also a 23+ year lung cancer survivor with two surgeries, radiation, and chemo. I remember waking up on my first morning home from my first surgery and thinking, "Ok, now what?" And then when there were no answers other than "live your life", from my surgeon, I thought, "oh my word, how do I do that?" There are no rule books or guide books to know what to expect physically, never mind emotionally. And you are recovering during a pandemic. I can't imagine anything more confusing or scary.
So up until now, for a year you have undergone the scare of breast cancer, tests upon tests, surgery, and chemo and reconstruction. And you are waiting for more surgery. How could you not cry? Where would your energy come from? A lot of people only have one surgery to think about and look at what you have endured! Like me, you are expecting way too much of yourself.
Have a final cry for the day and maybe think, "ok, I'm tired, I have some discomfort (pain?). I'm stiff and achy. So just lie back and nap, do what you can and then say to yourself and everyone around you, "I can't do anything else right now." You should be proud of your decisions and what you have been through. You have saved your own life!
There is no joy in learning that you have cancer. It is terrifying and mysterious and you have to learn so much new medical stuff it's overwhelming. Your life has changed forever and with the decisions that you have made you have also changed the way you look. You are also in mourning for the loss of the parts of your body that society has made us feel are things that make us feminine. Why would this bring you joy?
You have bravely made decisions that have altered your whole being in order to survive and you are exhausted from these decisions and the healing that comes with them.
I hope that someone who has had breast cancer and reconstructive surgery will chime in to tell their story so that you will feel safe and part of this wonderful group. And also know that you are not alone.
https://connect.mayoclinic.org/group/breast-cancer/
One more thing. Your joy will come. Try and replace it with pride. It will be different most likely, but it will come. There is probably a lot more thinking and pondering to go through.
Have you considered joining a group of breast cancer survivors?
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3 ReactionsYour words are so poignant and true. Life is precious and the emotional fight is a tough road.
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1 ReactionThis is such a great post/topic. I went through breast cancer in 2020. Here, in March, 2021, I am waiting for my final touch-up surgery in April (double mastectomy 6/2020, reconstruction 10/2020). I managed the chemo and surgeries, but no one told me about the emotional aftermath from cancer care . . . I am physically tired most of the time, my initiative (that seemed inexhaustible before) is so low, and I spent the past three months crying all the time. I wrestle with feeling guilty because though the cancer is gone, I do not yet feel that joy I used to have. I can't seem to will myself to feel normal again. I've been told to give it time. . . . I want to be an encouragement to others, but I'm still struggling keeping myself "up".
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3 Reactions