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?
Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
Agree 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.
@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.
@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.
@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/
@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.
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.
@schindler,
I would encourage you to check out the support groups. Support is so very important when you are dealing with a chronic illness like metastatic breast cancer. You will meet others in these support groups who will have similar concerns as you do and it will help you to learn coping skills and how to find some happiness in the midst of it all. You will also feel less alone, which is important right now.
Give the support groups that @colleenyoung mentioned a try and see how it works for you. I would also like to invite @trixie1313 to this discussion. She is active in the breast cancer discussion group.
Will you report back with an update as to how you are doing?
I do look at support groups including breastcancer.org and they are very helpful especially if there is no live support group in your home town. So thank you and I will give an update.
Janine
Very great share and insight. You inspire us all.....especially this Ph.D., former Hospice clergy man with bone marrow cancer. You are warmly inspiring!!!!!
Keep moving forward!!!!
Steve