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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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Hello Laurie no you’re right life will never be the same it will be better!! And you’ll go through the tests with anxiety but happiness when you get a clean bill of health. I was diagnosed in 1995 with breast cancer 1 month after my wedding. Appts are still a little unnerving but it does get a lot better as the tests come back clear. You’ll be ok I’m 25 years now and life isn’t the same because my cancer journey made me appreciate life so much more. My positive vibes are coming your way 👍🏻🌻
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5 ReactionsPS: I was 38 when I was diagnosed lumpectomy chemo and radiation...
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2 ReactionsI agree. The simple question :how are you?" definitely has a complex and much deeper response for a cancer patient. And I often feel too guilty to give my true response. I don't want pitty but I can honestly use some kind comfort at times because I am often emotionally exhausted. I get you!❣🦓
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4 ReactionsI found that emotionally I had to have hope and faith in the doctors and the treatment plan. Once I was on the path I mustered daily optimism that this will be successful and it has been three years now that I am cancer free. It clearly was worth the journey no matter haw difficult and challenging.
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5 Reactions@jeffk Your response is so uplifting! Did you do anything specific while undergoing treatment to keep your spirits up?
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3 Reactions@hopeful33250 I lost track of this post. October seems ages ago now. My husband is in the midst of his 8th cycle of chemo now in February. He has much fatigue and has lost about 30#. He missed one session because of low platelets. Side effects have been varied, he has some neuropathy in hands and feet and had a siege of hiccups and throat spasms. Overall, even though he is 2/3 of the way done, the time is growing long. I’m tired of the worry and confinement. In addition my mother fell and broke her hip and collarbone on New Years Day and is now in a nursing home. I have her apartment to deal with. It’s all a bit much.
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4 Reactions@dianamiracle You responded to a post some time ago. I’m wondering how you are doing and what your experience with treatment for pancreatic cancer was like. My husband had Whipple surgery at Mayo the end of August 2019 for an IPMN pancreatic cyst which turned out to be malignant. All surgical margins were clear, all lymph nodes were clear. He recovered without any major complications. He currently is finishing his 8th cycle of Folfirinox chemo, 4 to go. It’s been a tough slog and we’re both pretty tired. He’s had one CT scan since beginning chemo, which showed no evidence of disease and his CA-19s have all been within normal range—even the one before surgery. I have to say I feel like I’ve lost touch with my former life. I’m wondering what life will be like after chemo, and how to deal with the uncertainty of the future.
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4 ReactionsGood morning. I only did five flofoinox and this was pre surgery. My body couldn’t take any more of it. I followed with radiation and tried the oral chemo but had to stop it as once again my body’s did not react well. It was a choice to either eat or do the oral chemo. Eating was more important. I was supposed to do between 9 and 22 chemo sessions after the radiation but my body could only handle five. As my scans and numbers were fine we opted to discontinue the chemo. Listen to your (his) body and talk with your doctors. Life gets better, but I no longer set an alarm in the mornings and take it easy on a daily basis. Am starting exercising more vigorously lately. Moving is essential. I did see a psychiatrist and it really did help. I highly recommend this part of the treatment. Eat healthy and look to your higher power for strength!
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6 ReactionsHello @susan2018,
You have certainly been through a lot in the last six months. My heart goes out to you!
I feel concerned for you when you say, "... the time is growing long. I’m tired of the worry and confinement." That is all very understandable and I'm wondering what you are doing to take care of yourself.
Self-care is so important when you are providing care to others, especially in your case where you now have an ill husband and mother. Are you taking time out to see a movie, go out to lunch? Can you enlist some friends to help you with your mother's apartment?
I would encourage you to take a look at the Caregiver's Discussion group on Mayo Connect. @IndianaScott is the volunteer mentor of that group and I'm sure he will welcome you and you will find others, like yourself, who are dealing with these compounded tasks of caregiving.
Here is the link to this discussion group, https://connect.mayoclinic.org/group/caregivers/
I would love to hear from you again, will you post and let me know how you are progressing in taking care of yourself?
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3 Reactions@hopeful33250 , thank you. Yes, I have been intentional about self care, everything from lunch out to massages to enlisting a girlfriend support system via Facebook. Maybe I would feel worse if I didn’t do those things but they don’t provide much relief. I have no close family nearby so am on my own. it’s a strain constantly being on guard and on deck.
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4 Reactions