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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 @palstead, I see that this is just your 2nd post on Connect. As a three-time survivor of cancer, I have some understanding of what you are feeling. On Connect, we have another discussion group for people living with advanced cancer. You might find some of these posts helpful as well. Here is the link to that discussion,
https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/
You do not mention your cancer history. Is this a new diagnosis or have you been treated for many years? I suppose you have sought a 2nd opinion at a cancer center of excellence?
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2 ReactionsI have read most of this thread and it is so helpful. I am in the “surveillance mode” of stage 4 cancer with mestases in a wide variety of places and am having trouble figuring out how I feel. It seems like at this point “there is nothing anybody can do” so it’s watch and wait. I don’t know if my prognosis is ten weeks or ten years. My anxiety level is so high. Someone used the term “scanxiety “ and I sure have that. Trying to live fully each day at a time but it seems that the idea of having cancer is virtually always in the foreground of my thoughts. I will try to follow some of the many good recommendations in this thread.
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3 Reactions@jeffk- Checking in to see how you are doing.
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2 Reactions@sbcook70- Hello. I am not sure who you are responding to. Would you mind inserting an @name (who you are responding to) before your posts? There are many posts here that I want to make sure that I read and help when I can. Thank you
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1 Reaction@jeffk- Good morning. I mentor for the Lung Cancer and Health groups. I also dropped the bucket on this group and I'm sorry for that. I have Multipfocal adenocarcinoma of the lung. My first cancer was 22+ years ago, followed 10 years later with multifocal. I also had and continue to have great faith in my doctors and treatments that have been presented to me. And boy they do well for me!
It takes a lot of hard work, every day to do the right things. Sometimes I often fight myself. Then I have to ask myself what are you doing? I admit, not every day is peachy keen. There are days that I have to force myself out of bed and get on with things. There are days that make me smile before I'm even out of bed.
By working I mean that I have to be careful with where I go and who I am with, especially in the winter. I have to make sure that I keep up with all of my shots (flu and pneumonia and whatever else is recommended for a 73 yrs. old woman). I have to make sure that I sleep well, rest if I need to and eat right and exercise. I fail at drinking enough water and feel it too. All of these things can be exhausting but they are comprised of a fighting spirit! I think to myself, I can control a lot of things! I have experienced so many things that I can't control with having stage 4a lung cancer but there is a lot that I can control! I'm sure that you have felt the same things.
I am very very happy that you have 3 years of being cancer-free. What did you actually do to muster daily optimism?
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3 Reactions@susan2018 It sounds as if you need to enlist more help. Is there a senior advisory board in your area that might be able to provide some low-cost assistance with house cleaning and clearing out your mom's apartment?
Sometimes when we are physically and emotionally overwhelmed (at the same time) it becomes more difficult to cope. Will you look into getting some help with the physical demands?
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2 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 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 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 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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