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 Support Group.

@scsteve

Very great share and insight. You inspire us all.....especially this Ph.D., former Hospice clergy man with bone marrow cancer. You are warmly inspiring!!!!!
Keep moving forward!!!!
Steve

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Hello @scsteve Reading through some of your previous posts I’ve noticed you were recently diagnosed with multiple myeloma. Receiving a diagnosis with news of a blood cancer can certainly shake someone’s world. I know this from experience! How are you fairing with the diagnosis mentally?
Fortunately most cases of MM progresses slowly over time. Are you on any medications or is this a wait and watch phase for you?
Did you have a bone marrow biopsy to help with your diagnosis?
I’m so happy you found Connect. You’ll find it’s a wonderful community forum to help provide you with inspiration, encouragement and any information we can help you find. Lori

https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

Were you searching for information about your diagnosis when you found Mayo Connect? We have a number of group discussions with other members with MM.
https://connect.mayoclinic.org/discussion/multiple-myaloma/

https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
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Besides the depression and anxiety that come with a cancer diagnosis, there are studies indicating that stress hormones hamper apoptosis in cancer cells.

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Very helpful,I am a caregiver and hear people ask those to my wife.New diagnosis and both struggling.

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@sobafish

Very helpful,I am a caregiver and hear people ask those to my wife.New diagnosis and both struggling.

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Hello @sobafish Being the caregiver of someone with cancer is a gift of love but it surely can be stressful and emotional. I’m so sorry you and your wife are going through this journey. You’ll find a world of support here in the Connect forum as many of us are either cancer survivors, caregivers, family members and friends of someone who have faced a challenging battle. May I ask what is your wife’s cancer diagnosis?

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We are not sure at this time; we are waiting for results of the biopsy.The port was placed yesterday.This is all so new ;I’m just trying to prepare us for what may be coming.I just found this site and thought I would seek help.Thanks for replying. Wayne

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@sobafish

We are not sure at this time; we are waiting for results of the biopsy.The port was placed yesterday.This is all so new ;I’m just trying to prepare us for what may be coming.I just found this site and thought I would seek help.Thanks for replying. Wayne

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I’m here to help, Wayne. I’m a cancer survivor too. And as soon as you have a diagnosis there are many members who have had different cancers who will be more than happy to offer you a lifeline as well.
Is your wife in the hospital now? If the port is already in place she must be expecting treatment soon. What type of biopsy is she having?

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@IndianaScott

Hi @azkidney57 You bring to light a very important question I think. Personally I think the ignoring of mental/emotional health is endemic to our entire society. Plus I saw this same thing at work with my wife and with me. During my wife's war with her brain cancer only one of her doctors ever would ask about her emotional wellbeing. Additionally when I would go in to see my GP she would most often say this exact sentence "Scott, you look exhausted and worn out. How are you doing?" Then she would totally ignore anything I said! I especially recall one time answering "Actually, I am very depressed right now!" She said 'oh' and moved on without addressing it at all.

I also recall when my wife's surgeon told our daughter her mom would 'be back to normal'. She never was and when I told him sometime later that was a poor choice of words -- he responded that my wife was back to being able to do normal things like talk, walk, eat, etc. He had no awareness of the fact she was extremely disabled emotionally and mentally. As a surgeon he was looking at the physical aspects only.

In my opinion the medical establishment needs to pay far greater attention to their patients' emotional wellbeing!

Strength, courage, and peace!

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This is so very true. I was diagnosed with oral cancer 10/2020. Three operations so far. When I first found out I cried. My dr. was kind, said "I know this is devastating". But now I feel he doesn't see the emotional side. The worry & fear. I had a lot of anxiety before the first surgery and after talking about it a few times he said I should speak to a therapist. I was doing that already. I thought I could tell him how nervous I was; I wanted empathy. Just to let me know he understands. Even a pat on the arm and saying I'm going to do everything I can. That would make a big difference. I know he is doing everything he can; but hearing the words can make a difference when you're so frightened.

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@nutmeg56

This is so very true. I was diagnosed with oral cancer 10/2020. Three operations so far. When I first found out I cried. My dr. was kind, said "I know this is devastating". But now I feel he doesn't see the emotional side. The worry & fear. I had a lot of anxiety before the first surgery and after talking about it a few times he said I should speak to a therapist. I was doing that already. I thought I could tell him how nervous I was; I wanted empathy. Just to let me know he understands. Even a pat on the arm and saying I'm going to do everything I can. That would make a big difference. I know he is doing everything he can; but hearing the words can make a difference when you're so frightened.

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@nutmeg56 When we have a diagnosis that makes us feel unstable and emotionally leaves us drained, it's the little things that mean so much, don't you agree?

All through Covid-19, my oncologist kept a safe distance, fist bumps at best. Imagine my surprise and delight when he gave me quick hug last week! The sought-after words and a connection can indeed make a difference. Is there a support group through your cancer center or in your area that can provide you needed interaction?
Ginger

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I am doing this for the first time and only have a phone, no computer. I wrote a few paragraphs and somehow lost them before I could post. My phone is 6 years old & breaking down so this kind of thing happens often. I was gifted a Kindle but WiFi is too expensive in New York City.
Anyway, thanks for your response. I just joined and everything I've read is so amazing and helpful. This is a great resource. Everyone is trying to help; this helped me, maybe it can work for you. I'm so glad I found this forum. I have severe bone on bone arthritis in both knees. No cartilage at all. Been this way for several years. I couldn't pay for surgery and government insurance has very few specialists. The orthopedists I saw were awful. I was afraid I would be worse off post surgery. I walk with a cane and also need someone to steady me. So I don't get out much. My insurance situation changed recently and I hope to have knee replacement surgery in the next month or so. It will
be life changing.
My surgeon referred me to the head of Orthopedics and he will do the surgery. I am so very grateful.
I'm sorry for going on about this.
I've had 3 operations on my tongue. Lesions keeps coming back in the same spot. I thought after the last surgery in November it would not come back. But within a month it was back. Very frustrating; makes me feel hopeless.
I remind my myself that many people have it a lot worse. Anyone who wants to talk please respond to this. I want to listen. Sometimes good things happen. I never expected to get referred to a top surgeon that treated me even though he doesn't accept the insurance. Operated twice; told me not to worry about his fee. I never felt I was treated differently
than any other patient. I found out I'm not the only one he has treated for free.
I never imagined there were doctors like him.
I'm blessed.
I hope everyone reading this has a good, pain-free day. ♡

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@mmurray

Living proof here, too, after chemo treatments in 2007 and 2011. I was diagnosed with Stage IV breast cancer in 2011. Guess I beat that, huh?

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As someone with a Bad News Biopsy last September, and lumpectomy and kind of Good News genetic testing for risk of recurrence the following, it helps a lot to read about surviving, yet alone more than once. Cancer is indeed a wily little guy and, though part of my brain finds the science behind it fascinating, I have no desire to meet up with it again. But knowing that even that us not necessarily a visit from the Grim Reaper is very important to read.

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