Emotional health after cancer: How are you doing really?

Posted by azkidney57 @azkidney57, Oct 6, 2019

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?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@boathouse

Love your honesty and frailty of your fears.
I like you look forward and not behind me- I am looking at a life I can live with my “new normal”!
Stay focused - have a better day everyday!

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Crying is OK.
My supportive friends say so!

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Going to art therapy today.

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Survivor guilt. Yes. That wasn’t even on my periphery, but it found me anyway. I am nearing my 3-year anniversary of my BC diagnosis, 2 1/2 years cancer free. The emotional aftermath is a reality to work through, and then there’s survivor guilt added. A friend of mine has been battling BC for four years. Relentless. I’m heartbroken for her and the journey she has been having to take. At the same time, I want to have joy for my own life. What a conflict. I’m just giving myself time to reconcile. Grace and patience til I settle with it.

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Thank you for those powerful worlds. I personally have felt that there is not a lot of support out there. I try to rely the most on my family, friends and faith. One thing that does annoy me are these random people whom I barely know, asking how I am. I am originally from a small town and unfortunately gossip abounds. I have asked friends and family not to discuss my trials but of course many have not listened to me. This has upset me greatly, but I am trying to get by it.

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@sm22

Thank you for those powerful worlds. I personally have felt that there is not a lot of support out there. I try to rely the most on my family, friends and faith. One thing that does annoy me are these random people whom I barely know, asking how I am. I am originally from a small town and unfortunately gossip abounds. I have asked friends and family not to discuss my trials but of course many have not listened to me. This has upset me greatly, but I am trying to get by it.

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@sm22 It can really seem to set you back when people come to you with information you didn't know they had, doesn't it? Where did they hear it, how accurate is it? Who shared it "on your behalf"? Biggest issue for me, why do they feel they have the okay to share?

My neighbor and friend has done just what you mentioned, telling people I don't even know very detailed information about my medical conditions! While a lot of it is things I told her in confidence, I never figured she was off spreading it around. And she being a "Dr. Google" person with hypochondria herself, she has embellished along the way. Frustrating to the nth degree! I have decided to back off sharing with her,.

We come here to this discussion and find kindred spirits. We can support each other, bolster each other, and find the similarities. Face to face feels best, but in these times going to Zoom meetings held by different support groups/organizations we still get the facial expressions and connection that mean alot to us.
Ginger

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@gingerw

@sm22 It can really seem to set you back when people come to you with information you didn't know they had, doesn't it? Where did they hear it, how accurate is it? Who shared it "on your behalf"? Biggest issue for me, why do they feel they have the okay to share?

My neighbor and friend has done just what you mentioned, telling people I don't even know very detailed information about my medical conditions! While a lot of it is things I told her in confidence, I never figured she was off spreading it around. And she being a "Dr. Google" person with hypochondria herself, she has embellished along the way. Frustrating to the nth degree! I have decided to back off sharing with her,.

We come here to this discussion and find kindred spirits. We can support each other, bolster each other, and find the similarities. Face to face feels best, but in these times going to Zoom meetings held by different support groups/organizations we still get the facial expressions and connection that mean alot to us.
Ginger

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I couldn’t have said it better myself. I’m glad to know I am not the only one who feels this way or who has experienced this. Thank you.

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I am 3 weeks out from my last treatment and am super anxious about my scans in 3 weeks. I was super depressed during my treatments and I don't know why but I pretended I was fine to everyone including my doctors. I've always been a strong person but currently feel very scared and fragile.

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@rainyp

I am 3 weeks out from my last treatment and am super anxious about my scans in 3 weeks. I was super depressed during my treatments and I don't know why but I pretended I was fine to everyone including my doctors. I've always been a strong person but currently feel very scared and fragile.

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I was OK during Treatment, I felt safe, it was rough, was it ever, I worry more now about recurrence than I did with my initial diagnosis.
It may never happen, God willing but Scary..

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@rainyp

I am 3 weeks out from my last treatment and am super anxious about my scans in 3 weeks. I was super depressed during my treatments and I don't know why but I pretended I was fine to everyone including my doctors. I've always been a strong person but currently feel very scared and fragile.

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@rainyp I was told by many sources (my radiation oncologist, my nurse practitioner, Cancer education group at Mayo Clinic) that this anxiety is very common and normal after treatment. You have been through something that none of us imagined and we weren't prepared for any of it. I became depressed about halfway through my radiation treatments and I did talk with the radiation oncologist about it. That's how I got involved in the Cancer Education group.

Before my first two appointments after I finished radiation I was very, very anxious to the point that I had to intentionally practice my cognitive-behavioral skills to reframe my thinking and practice mindfulness medication all day before my appointment. It's been one year and I was less anxious at my most recent appointment (in mid-December).

Do you have a mental health therapist you work with? If not, can your oncologist refer you to a mental health therapist who is skilled in working with cancer patients? I believe our needs do differ just enough that it helps to have someone who is skilled in this area.

It's a good insight that you pretended to be fine when you weren't. Some people aren't even aware that they are doing that and our providers tend to believe what we tell them instead of looking at our faces and body language and listening to our voice that are telltale signs that we very frightened.

What can you do for yourself that is soothing? Take bath? Listen to music you like? Watch a favorite movie? Practice yoga?

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@naturegirl5

@rainyp I was told by many sources (my radiation oncologist, my nurse practitioner, Cancer education group at Mayo Clinic) that this anxiety is very common and normal after treatment. You have been through something that none of us imagined and we weren't prepared for any of it. I became depressed about halfway through my radiation treatments and I did talk with the radiation oncologist about it. That's how I got involved in the Cancer Education group.

Before my first two appointments after I finished radiation I was very, very anxious to the point that I had to intentionally practice my cognitive-behavioral skills to reframe my thinking and practice mindfulness medication all day before my appointment. It's been one year and I was less anxious at my most recent appointment (in mid-December).

Do you have a mental health therapist you work with? If not, can your oncologist refer you to a mental health therapist who is skilled in working with cancer patients? I believe our needs do differ just enough that it helps to have someone who is skilled in this area.

It's a good insight that you pretended to be fine when you weren't. Some people aren't even aware that they are doing that and our providers tend to believe what we tell them instead of looking at our faces and body language and listening to our voice that are telltale signs that we very frightened.

What can you do for yourself that is soothing? Take bath? Listen to music you like? Watch a favorite movie? Practice yoga?

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My Social Worker was my Angel, she was there 24/7, she had group chats, She pulled me through, and even now I call her. As I still get bad Anxiety even though radiation therapy is done, I worry about recurrence which she gives me breathing exercises & does it with me, it helps, everyone should contact there Social Worker at there Hospital, she also put me in touch with a Mentor & he calls every week, as he to went through alot, but he's 6 years post & everything he says & did made sense
Hugs to all,

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