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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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@miriam57 Miriam, being in the hands of one of Mayo’s amazing cancer teams, you are in the best possible care! They want a positive outcome for you too! Are you having any reactions to the initial infusion?
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2 ReactionsThe muscle pain/ nerve pain took me down for about three days solid. I took Tylenol and put ice on my legs since I didn’t know what to do. Had anal bleeding, not much appetite and weakness for about 5 days and slowly came back. Headache and sort of slight electric feeling in my head. Thankfully no nausea yet. Some various abdominal pain and some things I forgot about already. The Nurse practitioner heard my situation and came up with some things that I think helped.
I have some red bumps/ rash on my head and she gave an an antibiotic cream.
So hydration added during Chemo, icing hands and feet during Taxol for three hours, adding vitamin D, multivitamin and really trying to stay hydrated 24 hours a day. All seems to have helped, crossing my fingers.
Just one day at a time.
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4 ReactionsI am praying for you! I know exactly how you feel. I am going through this with my husband . I don’t really think he has accepted it yet either. They want him to go into hospice and he said I am not ready for it yet! I have a lot to live for. We just take one day at a time .
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1 ReactionLove this . I have a west highland and my trainer rued skiing me into doing this because of his outgoing personality . I wished I would of followed through with this but now he is 4 and it is too late.
Thank you for the slide show I enjoyed
Glad you are finding some relief. Dont be afraid to ask for the pain meds sometimes they are necessary as the pain can get unbearable. I remember.
Praying for you Miriam.
This 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 ReactionsYour words are so poignant and true. Life is precious and the emotional fight is a tough road.
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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 ReactionsThank you. So kind. Donna
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