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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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Do 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 ReactionsI 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 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 ReactionThank you
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1 ReactionI 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 Reactions"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.
Thank you so much!
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3 ReactionsThank you so much. The support found within this group has been palpable.
Having a place where people are having the same experiences and fears have been a comfort. I feel less alone.
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5 ReactionsI am so sorry you are struggling. You have had trauma after trauma. Your body has gone through a lot. You have gone though a lot. I recognize some of the same losses in my cancer journey. Loss of normalcy, loss of who I was, loss of who I thought I was going to be and how life would be. Loss of my self confidence and self suffecincy. But your reactions are a normal response to all these challenges. I experienced periods of low motivation and I guess loss of hope.
I believe you can find your way thru this. You've come so far already and survived such hard times.
You have a lot of good suggestions for you already, and I echo them, find someone to talk honestly with, get out in nature even if it's only to sit in the sun.
Do something you enjoy... create something... something new. Paint, write use you creative parts. Journal if it helps... I did one word journals ... just one word to describe how I felt at that moment . It helped me process and took little energy .
You'll have to be brave some more... just to make yourself do these... but you've got this!
Prayers for you !
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2 ReactionsAnd here I was checking in on you today only to find some beautiful responses from members with a lot of empathy encouragement and motivation. The one thing I wanted to share based on my experience at the Mayo Clinic Pain Rehabilitation Center, was the importance of feelings thoughts and behaviors. Research shows that making a positive change to any one area of thoughts feelings or behaviors can lead to positive change in the other two. Negative thoughts are hard to change when you're feeling so down however recognizing that you're living in the negative world can be such a helpful first step. I learned a phrase during rehab called "catch and correct". I am 3 years graduated and still have to work on catching and correcting myself during difficult times. But I can attest to the fact that the more I've practiced this the more it's become second nature. It works like this - instead of saying I can't cope replace it with I will do my best, instead of saying no one wants to be around me, replace it with I make mistakes but I will work to do my best, instead saying I will always be sick say I have handled tough times before. Instead of saying I can't do anything or I'm unable think what can I do how am I still able . Positive self talk is where change can begin. People can offer all sorts of great advice but unless the person hearing it chooses to be an active participant in their own care, that advice falls flat.
That's my tip of the day as I am getting ready to go force myself to exercise. Another phrase I learned is "march before you feel like it" and that's what I'm about to go do!
Wishing you and all who are reading this... a pleasant warm day filled with happy thoughts.
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