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.

Colleen Young, Connect Director | @colleenyoung | Mar 4, 2020

In reply to @nobody "Here is the DNA study that was done at Duke along with the VA. It’s a..." + (show)

Hi @nobody, As Merry suggested I removed the family chart from your post above. If you removed your full name from the top left corner, you can post it again, since it contains only first names. Keep in mind that Mayo Clinic Connect is an open forum and we want you to share safely. Don't hesitate to contact me, if you have questions about online sharing https://connect.mayoclinic.org/contact-a-community-moderator/

Merry, I like how you said, the community here has wide shoulders. Indeed we do.

Merry, Alumni Mentor | @merpreb | Mar 4, 2020

@nobody- We are not medical people on Connect. I wouldn't know how to interpret this. Connect discourages everyone from posting personal information, charts, blood work and graphs such as you posted. I hope that you don't mind but I have asked Colleen to delete this from this discussion.
Regardless of the DNA testing results I still stand by what I suggested. You all share the same DNA and it would be wonderful if you all could support each other, give each other love and understanding. There is no one at fault here. If there was then you would have been given the choice of what DNA factors you wanted to inherit. We can't help what we inherit. We just have to learn, somehow, to live with it, accept it and fit it into our lives. Don't you think that by confiding in your daughters it will bring you closer? Do they blame you for their illnesses?

nobody | @nobody | Mar 4, 2020

Here is the DNA study that was done at Duke along with the VA. It’s a scary situation for my children.

Merry, Alumni Mentor | @merpreb | Mar 4, 2020

@nobody- Pity parties are very welcome on Connect. We have big shoulders! Ok, you are not anymore responsible for anything genetic that you passed on, anymore than your folks were. I know how you feel, though. I have a son and my family has some not so good DNA too. It sounds as if your daughters might have the same type of illnesses that you mentioned. Why not get together and be a support system for each other instead of walking on egg shells and hiding it?

nobody | @nobody | Mar 4, 2020

In reply to @merpreb "@nobody- I can really identify with your struggles. I recognize your description of yourself, strong, nothing..." + (show)

Thank you so much for your input. You are spot on. Seems all my life I have been put in the category of you can do anything and everyone else expects you never to be anything less. I guess I am having a pity party today. I usually do not get emotional. I just carry on. Think the thyroid surgery in November has me on a downward spiral. I feel like I am just a piecemeal out to the multiple doctors each one only looking at their specialty and no one looking at the whole me.
I have two wonderful daughters who have no clue what I have been going through for the last 8 months. I don’t want to give them more on their plates. Both have severe health issues
And I feel I am to blame. Seems I passed down to them through our DNA the deadly diseases from toxic environmental exposures while on a military base
My two sons are deceased due to the exposure. So I am totally alone walking this path. I don’t see a future here.
Thank you so much for your good advice.

Merry, Alumni Mentor | @merpreb | Mar 4, 2020

In reply to @nobody "You nailed it. Never read a more accurate narrative on how we feel. Today I am..." + (show)

@nobody- I can really identify with your struggles. I recognize your description of yourself, strong, nothing bothers me, I can handle anything. And as you so aptly indicated, it's a facade. My emotions are always in a tizzy because I too hold things in. I now fear that they are too close to the surface and I'm not liking that one bit! You have certainly endured quite a bit and deserve a break from all of it. After my last cancer, almost 3 years ago, after 3 other lung cancers (22+ years) I felt like this too. I didn't see how I was going to look at anything in the future with a smile, or even have a future. I was told that I had cancer in me, and would have forever. That I was a stage 4A. I have a funny type of cancer that has me making lesions that grow, and more than one at a time in my lungs. It's very slow-growing and doesn't metastasize the way other cancers do. I thought that I was at the end. But, I kept asking, why hasn't anyone explained what was going on and I pursued this until I finally got answers. I do think that there are so many things that seem up in the air to you for you. DOn't you think that it's time to sit down and have a one on one talk with your doctor to find out what needs to happen, step by step. If you aren't satisfied with that then find someone who will. Once you have all the information then you can make decisions based on that.
Do you have a family member that can go with you to make sure that everything is written down and for a shoulder for comfort and support?

Here is a link to a discussion about DIA, or what it is often referred to as a stiff heart.: https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/

nobody | @nobody | Mar 4, 2020

You nailed it. Never read a more accurate narrative on how we feel. Today I am an emotional wreck. Everything is folding in on me. A new illness has cropped up. Went back to Wake to see endocryologist. They did a new ultrasound and found a new nodule on the thyroid right lobe.
Left lobe was removed November 26 and was positive for Hurdle Cell and Follicator. You would have thought the surgeon would have taken the whole thyroid while I was still under. Guess he wanted s two-fed?? I also was told I was in DIA congestive heart failure. WOW guess the heart will take my life before the cancer. So recap breast cancer and thyroid non metastasis (different types)
After this week and new diagnosis I think I am just about to give up. I thank you for your post. It is extremely helpful. May God bless us all.

Scott, Volunteer Mentor | @IndianaScott | Feb 29, 2020

In reply to @jimmy2248 "@palstead .hello. I also have Mets. Mine are in liver and lungs. I am off All..." + (show)

Very nice thoughts and approach @jimmy2248 During my wife's battle with brain cancer she often took a similar approach -- only difference was she added a piece of dark chocolate to her coffeetimes 🙂

jimmy2248 | @jimmy2248 | Feb 29, 2020

In reply to @palstead "I have read most of this thread and it is so helpful. I am in the..." + (show)

@palstead .hello. I also have Mets. Mine are in liver and lungs. I am off All treatment sine last May. In may I had radiation for spot on left adrenal gland. I also am on a "watch and see" program. 2yrs into this "adventure".
I just turned 72. Iv wasn't sure if I would see my birthday. I find peace in the ordinary days. No doctors no reports. Just being alive with "normal" thoughts. Sitting in the quiet of the day. With coffee or tea
Reflecting on all I am.

Merry, Alumni Mentor | @merpreb | Feb 28, 2020

@palstead- I hope that you don't feel pressured into doing the virtual exercise program. It starts out 5 min. warm-up and you can do this in your home. If you feel that you can't walk outside right now that's fine. But no matter what your time frame is with your cancer it's still better to move than sit and wait. May I ask you where your primary cancer was? When did it start? What treatments have you had? I am a stage 4A with lung cancer.