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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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"Despite my partner's perception of me as a hypochondriac due to annual blood work anxiety ..."
This upsets me. Your partner really needs to get on board. I learned a new word a few days ago, "scanxiety" -- the anxiety that people with pancreatic cancer feel as they gear up for the every-3-mos. scan that will tell them whether the cancer has returned. (I'm not there yet but will be.)
They are, QUITE NATURALLY, freaked out because it's a stealth cancer that creates few or no side effects (so we have to rely on scans and blood tests to know whether it has recurred, and even those can be misleading), bc it's a super-aggressive cancer that can do a lot of damage in that 3-mo. spell between scans, **and** bc it has a low survival rate.
I can only repeat: Your partner needs to get on board and start being sympathetic to your completely understandable / completely logical distress.
Also, I'm wondering whether you've ever looked into EMDR, a therapy that works to reduce intense reactions to old traumas.
I wish you well.
I feel for you, and everything you've written -- about how much you're struggling and how bad you feel -- makes perfect sense, given that you've been through intense trauma.
Fwiw, I think that developed nations discourage people from acknowledging the intensity of their traumatic experiences, for various reasons related to consumer culture and keeping the economic machine going. But you HAVE been through trauma, and you need to be clear with yourself about that (as in, "After all I've been thru, it's logical that I can't really function well in the short term"), and kind to yourself as you gradually heal.
I'm not suggesting that you stop taking antidepressants, but they aren't the solution. An adjunct during a terrible time, yes, but not the solution. You need to be able to cry out your feelings and shriek out your feelings in a safe space, with a licensed, experienced therapist. And I wonder whether EMDR (a therapy to address trauma) could help.
Can you talk with someone at the hospital where you've received cancer care? Mine has a dedicated social worker, for ex., who has guided me toward some useful resources. And the Psychology Today website lets you search for therapists by geographic area, but keep in mind that you're better off getting a recommendation for a therapist from someone who knows, or has worked with, the therapist.
Finally, if your insurer is being a jerk and is refusing treatment that you need, call the office of one of your US senators and ask to talk to someone who handles health-care problems -- that person might be able to advocate for you.
I believe that better times are ahead for you; I believe that based on my own ups and downs for most of my life (I'm 62) and based on the reality that every living creature is built to heal. (Yeah, we all break down at some point, but I think you're not there yet.)
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3 ReactionsThank you
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1 ReactionYou're brave for reaching out on Connect and sharing your feelings with others who understand. That is a real good step. Sending you a gentle, virtual hug to remind you that you are not alone.
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1 ReactionI do not. I started seeing someone but I don’t think it was a good fit. I know I need to. It gets dark sometimes.
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1 ReactionDo you work with a therapist, a professional who is trained in cognitive behavioral therapy? CBT is a tool that helped reshape me through a lot of rebuilding of my mindset. Who in your life would be a good accountability partner for you?
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2 ReactionsThank you so much for your kind words. It means so much to know that someone understands when I say I have lost who I was. I don’t know who I am emotionally and definitely don’t like who I am physically. Sounds vain and I never thought I was before.
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1 ReactionHi there, I'm so sorry to hear your words of despair. You can dump here anytime. It's completely understandable why you feel the way you do and are in a hole. Sometimes when we're so lost in our minds we stifle our growth and problem solving skills to see our way out . You have been challenged and overcome quite a lot, be proud of that, be kind to yourself. While I have never had cancer, I do live with chronic pain condition which caused me to lose my career just like you and question who I was and what my purpose is. This rebuilding process takes time and small steps towards finding yourself again. Sometimes the calm after the storm is when we really get lost but please know that through every bad storm the sun always comes out again. Can you think of one small thing that you can do today that may begin forward motion again for you to realize that you count, you matter, and you will get through this temporary setback ?
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2 ReactionsI am truly struggling so very badly and I have no clue as to why I can’t pull myself together emotionally. I have been so very depressed. Not going anywhere not clean, sometimes my hygiene is questionable I don’t understand. I made it through the chemo, a year of Herceptin infusions, implant infections, losing my right nipple, had oxygen chamber therapy 30 times I ended up having to do the diep flap had three fat grafting sessions and now my insurance refuses to pay for more even though it’s horrible looking. Anyway, I am on an antidepressant but I have no desire to do anything or see anyone I think I feel as if I don’t know who I am anymore. I was an RN for years now I can’t work because of fatigue and chemo fog. I am sorry guys I don’t mean to dump but I need help somehow something has got to change or help. I have never had these emotions of no self worth or whatever this is. Thanks for listening.
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6 ReactionsI hear you. It is a trauma inducing situation. A normal reaction to a totally abnormal situation. For me, the down button on the elevator is a trigger. Weird I know ... but down in the basement is where life changed, pain happened, choices in my life were removed and losses in my life multiplied. It is truly like a picture of my life... standing before that button... reaching out to push it ... and hesitating.
It was a choice to make , a courageous choice I now recognize, to push down and not to simply walk out of the elevator. I did walk out once, abruptly to the surprise of everyone in the elevator I pushed aside. But I waited, Took a deep breath and re-entered, pushing the down button.
I dread my favorite season... fall. Because it's the months of my first diagnosis and yearly biggest testing.
As a Crisis trained Chaplain, I know that the best thing to do is have someone talk about their experiences. To process it that way, as soon as possible. But Drs don't want to hear this, really they can't, as their empathy and compassion has to be objective to treat us. And family doesn't really want to understand your hurting, because they don't know how to process it themselves or help you with it as well.
Writing this letter here probably helped you a lot. Maybe finding someone you can speak to who can help you process the pain, fear and anxiety that you feel might help you. A counselor, faith based leader, understanding friend who is willing to hear you.
Just know , we all experience it to different levels and ways.
Do things that ground you, like walking in the sun. In nature, doing things that you enjoy... laughing, loving , living present in each moment. Don't let the inability of others to comprehend your experiences cause you to repeat a negative narrative in your head.
Don't feed on that. Nourish yourself mentally, physically, Emotionally and spiritually with positive things, hope filled things.
Prayers for you
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