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.

@angiemal

Hello! , I started my hormonal therapy 6 months ago. I thought I was doing ok however during the last weeks I've been crying more than usual . I'm going to mental theraphy once per month and I think I'm discovering some feelings from the past that I think I just ignored during long time. Those are related to my father's illnes , he had Alzheimer during 10 years and died 5 years ago. During all these years I never shared with anyone how sad I was after my father's diagnosis. He was always my super hero , a strong and smart guy that I loved with all my heart and I stop checking on him I guess because I was scared of seeing how deteriorated he was ... I blame myself for this , and for not asking him how we was dealing with all this. My therapist said that I need to stop asking why I developed cancer but now I can't stop thinking that all these feelings that I suppressed during all this time were somehow doing damage in my body and now they are coming to the surface , and that's why I've been crying latetly ... or is just a secondary effect of hormonal therapy? . I struggle sharing my feelings with others and definitely I appreciate this space to share... thanks for reading.

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Angie,
Thank you for having the courage to share your feelings. I'm not a doctor and I think your sadness could be coming from both the hormones and the past thoughts. It's good you are dealing with some of these past thoughts so you can walk through them and get past them. There are no right or wrong feelings. It is important to pay attention to your feelings and just let them sink in and really feel them. Journaling can sometimes help. It's going to be okay. Your feelings when your dad had Alzheimer's and you didn't want to go visit him, because you were afraid to see him that way - that is a normal feeling and you aren't the only one has done that. You can forgive yourself-you are human and humans are not perfect. It sounds like you might be blaming yourself , that you did something to get your cancer - I think that's a normal feeling too. No one knows exactly why any one person has gotten cancer. Don't blame yourself for your cancer. Try to focus on the good memories you have of your dad. He would want you to be happy. Be kind to yourself. Try to talk to yourself like you would talk to a friend. I care about you. Sometimes we are too hard on ourselves.

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@angiemal

Hello! , I started my hormonal therapy 6 months ago. I thought I was doing ok however during the last weeks I've been crying more than usual . I'm going to mental theraphy once per month and I think I'm discovering some feelings from the past that I think I just ignored during long time. Those are related to my father's illnes , he had Alzheimer during 10 years and died 5 years ago. During all these years I never shared with anyone how sad I was after my father's diagnosis. He was always my super hero , a strong and smart guy that I loved with all my heart and I stop checking on him I guess because I was scared of seeing how deteriorated he was ... I blame myself for this , and for not asking him how we was dealing with all this. My therapist said that I need to stop asking why I developed cancer but now I can't stop thinking that all these feelings that I suppressed during all this time were somehow doing damage in my body and now they are coming to the surface , and that's why I've been crying latetly ... or is just a secondary effect of hormonal therapy? . I struggle sharing my feelings with others and definitely I appreciate this space to share... thanks for reading.

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You cry because you’re sad and there is nothing wrong with that. I find the sadness a very powerful manifestation of love and the true lesson that people do not have control over everything in life. It’s probably just as okay to suppress feelings as it is to move on with life. You don’t have to share your feelings with others but it sometimes helps. I hope for the very best for you!

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Hello! , I started my hormonal therapy 6 months ago. I thought I was doing ok however during the last weeks I've been crying more than usual . I'm going to mental theraphy once per month and I think I'm discovering some feelings from the past that I think I just ignored during long time. Those are related to my father's illnes , he had Alzheimer during 10 years and died 5 years ago. During all these years I never shared with anyone how sad I was after my father's diagnosis. He was always my super hero , a strong and smart guy that I loved with all my heart and I stop checking on him I guess because I was scared of seeing how deteriorated he was ... I blame myself for this , and for not asking him how we was dealing with all this. My therapist said that I need to stop asking why I developed cancer but now I can't stop thinking that all these feelings that I suppressed during all this time were somehow doing damage in my body and now they are coming to the surface , and that's why I've been crying latetly ... or is just a secondary effect of hormonal therapy? . I struggle sharing my feelings with others and definitely I appreciate this space to share... thanks for reading.

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@mchris327

I’m newly diagnosed so it hasn’t really set in yet. It’s been 2 days and I am a wreck . Don’t know what to expect yet. But I feel you. A hug and maybe a comforting word or two from the caregiver would mean more than anything. Thank you for sharing your thoughts . And good luck to you. I love you!

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Thank you.

Sent from the all new AOL app for iOS

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@rosie100

I relate to all you are saying. It is good to know someone else is going through the same as me. I have tongue cancer. Have feeding tube, am talking better. Hope to be able to eventually vho back to eating normally. I will be 76 Dec 15th. Feel pretty good. But I get very depressed. I live with my son and have before I developed cancer. I have a daughter who helps aldi. I feel like a burden to them both. I worry too much about everything and everyone else. I always care more for others. I have to put myself first and take care of me. But that is hard to do. What is to become of my life? How can I be happy. I am thankful that I am still alive. But what can I contribute to others. It's hard for my friends to understand how I feel to be with them when it's hard to talk and I can't eat with them. Help me to understand and make them understand. It sounds like I will never be healthy enough.

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What you are doing here, responding to others is huge. It will make a difference for others facing the same challenges.

I thought my life was over with stage 4 lung cancer. I share my story regularly. People I know sent newly diagnosed friends to me who heard my story and decided to go ahead with treatment. They've seen graduations, weddings, grandchildren, or great grandchildren born.

It's not too late to start something you always wanted to try but put off because you cared for others. I took up jewelry making. You might paint or make pottery.

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It breaks my heart to hear how you are suffering.

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I relate to all you are saying. It is good to know someone else is going through the same as me. I have tongue cancer. Have feeding tube, am talking better. Hope to be able to eventually vho back to eating normally. I will be 76 Dec 15th. Feel pretty good. But I get very depressed. I live with my son and have before I developed cancer. I have a daughter who helps aldi. I feel like a burden to them both. I worry too much about everything and everyone else. I always care more for others. I have to put myself first and take care of me. But that is hard to do. What is to become of my life? How can I be happy. I am thankful that I am still alive. But what can I contribute to others. It's hard for my friends to understand how I feel to be with them when it's hard to talk and I can't eat with them. Help me to understand and make them understand. It sounds like I will never be healthy enough.

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Azkidney57. Your comments struck more than one chord with me. I believe I understand most of what you said. I've been something of an emotional wreck for over a year, and it wasn't until this week, when I had a phone call from a wonderful Doctor, that I have begun to feel better. I'm 83, and really thought that nothing could get me down. Cancer, two distinct types, did. My wonderful, understanding, and empathetic wife gets me. The professionals I see ask about my physical health; "On a scale of one to ten, what is your pain like"? Not a thought regarding emotional health. Well, I determined that I can handle it, and as long as my wife has my interests at heart, perhaps that is all I need. I'm the only one responsible for how I feel. Though it would be nice, every now and then, if someone really cared about how people that have life changing diagnoses really think and really feel, and thought to ask us.
I hope you stay strong and know that here are, indeed, people that care about your emotional well being. I do.

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@scottbeameup: Cancer is the pits! I feel your discomfort in being forced into life-altering health decisions! Just remind yourself that you have made the best decision and will continue to keep updated on treatments available… just in case of tumor progression. Knowledge will give you confidence.
You are the same nice person you have always been and cancer doesn’t change that! The future is unknown for everyone, but we have constant reminders of our mortality due to our diagnosis. Hang in there - we can be our best each day! I just passed my 3 yr mark and about to finish a series of infusions hoping to add yrs of good quality life. Best to you…

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My last post on this topic was back in August. I was in the thick of Androgen Deprivation Therapy (chemical castration) for prostate cancer and it felt as if someone had reached into my body and pulled out my soul and I was just watching this other person who was me, but not me, walking around. The other me cried A LOT and got angry A LOT.

The medical establishment basically said "yeah, those are side effects" so I decided, on my own, to reach out to a psychotherapist and have been working with them for about four months now and things are much better. I began taking a mild antidepressant which stabilized the crazy mood swings caused by the lack of testosterone (and estrogen).

My treatment ended October 31 and I am going for my first post-treatment testosterone test next week. It's too soon to tell how much T, if any, came back. That said, however, I know *something* good is starting to happen because the brain fog is beginning to lift and my insomnia is getting better.

In December I will get my first post-ADT PSA test which will be an early indicator of whether the treatment worked or not, with tests every three months for two years. I have a lot of anxiety about this because if the treatment doesn't work I will have to choose between ADT for life or accepting a shorter life and, remembering how bad my QOL was, I'm not sure which one I would choose.

The hardest part right now is not knowing whether an ache or pain is just an ache or pain, or is it a side effect of treatment, or is it cancer coming back again? In the BC (before cancer) times, an ache or pain would just be an ache or pain.

All of that said, the past week has been really good. I've been exercising outdoors a lot, seeing friends I didn't have the energy to see during treatment, etc.

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