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.

@cartersgirl2 Good for you! What a wonderful distraction to keep your brain engaged and positively focused. Creativity has healing powers, just like nature. Do what you got to do to get through one step and one day at a time.

My fellow mentor @jenniferhunter loves to paint and is a very talented watercolor artist. I'm pretty sure painting has seen her through some difficult times as well.

What type of doctor is going to help with your medications? That sounds like a move in the right direction. Are you on board with this?

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Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

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@liv38556

It’s true. Emotional health isn’t addressed at all. My cancer issues are compounded by the fact that I am being required to travel 3 hrs away at times for Dermatology appointments. I just had to cancel one today because I just couldn’t make it and it was probably a fairly important appointment. A full body skin examination. Could I find a Dermatologist closer? Maybe but that is compounded by them taking too long to get me to be seen. One office put me off 2 months even after I was referred by an Oncologist. After that I didn’t trust that Dermatology office to provide me with the best care. We are trying to move to another part of the country where we are more familiar with and who has more of a heart for their residents medically.

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If you move to an area that has Mayo Clinics you will have outstanding service.

I have found when I have a suspicious area they make what they call an acute visit appointment which has priority.
Good luck. I hear horror stories about the wait for dermatologists appts.

I see a P.A. who is outstanding.

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@wlhickey

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

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I'm with you. I was recently diagnosed with bladder cancer through a round-about series of events. No blood in urine, an abdominal CT showing bladder thickening and a follow-up cystoscopy showed a tumor. A TURBT with chemo or BCG has been scheduled. Very matter of fact from the doc, no discussion on how I felt. I did get a 2nd opinion, always do so with oncology cases. Good days and bad. I've read how these type of tumors commonly recur. I wonder if I'll be taking treatments the rest of my life and how everything will affect everyday life. Stay strong.

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In reply to @cartersgirl2 "Thank you so much!" + (show)
@cartersgirl2

Thank you so much!

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You will never ever know how much your words mean to me. I am trying to get hep. I saw a counselor who is referring me to a therapist to adjust my meds. She wanted me to be hospitalized and try magnetic therapy of some kind. She says d I may have to try shock therapy I just want to find myself again

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Sending you love , hugs and prayers 💜💜💜💜.
In April 2023 I was diagnosed with a NET tumor in the tail of my pancreas and in May I
Had surgery. I haven’t truly processed
The entirety of my diagnosis because I tend to just shut it away and out in a brave smile.
I have times at the most random times where I will get scared and cry and realize that I have cancer
It is true that people don’t always ask about the emotional toll and status
I have turned to my family and church and pray when I feel
Weak.
I have loved having the support here on the Mayo Clinic groups where we can ask any questions and have a loving and supportive response.

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@wlhickey

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

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I had a similar diagnosis in 2022-papillary tumor with micropapillary features. TURBT to surgery was less than 6 weeks. It’s scary- I’m the type that just pilots my head down and bulldozes tgrough things like this. I’m a year and a half post-radical cystectomy and I still struggle emotionally- I have days like today where it takes everything I have to not fall apart, and then I have weeks of forgetting the whole episode ever happened. I guess what I’m trying to say is that I felt all those feelings-and still do- so I think it is pretty normal.

Without knowing your exact diagnosis, it’s hard to know what to recommend regarding surgery. I had a neater and am doing pretty well with it- back to riding my horse and doing lots of physical activities. There is life after this- it’s just a different one. ❤️

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@wlhickey

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

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I understand it’s scary. Hang in there and lean on your family

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@wlhickey

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

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@wlhickey, so many emotions! I know you have loads of questions. While surgery asap is being recommended, you have time for questions and, if necessary, a second opinion. Questions I would ask include:
- What type of cancer do I have?
- What grade?
- What are the treatment options?
- What is the effectiveness and the risks of each option?
- Where should I get a second opinion?

You can see more questions at the bottom of this webpage from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/bladder-cancer/diagnosis-treatment/drc-20356109

How are you feeling today? If you know the type of bladder cancer you have, let me know. I can connect you with others like you.

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@colleenyoung

@wlhickey, so many emotions! I know you have loads of questions. While surgery asap is being recommended, you have time for questions and, if necessary, a second opinion. Questions I would ask include:
- What type of cancer do I have?
- What grade?
- What are the treatment options?
- What is the effectiveness and the risks of each option?
- Where should I get a second opinion?

You can see more questions at the bottom of this webpage from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/bladder-cancer/diagnosis-treatment/drc-20356109

How are you feeling today? If you know the type of bladder cancer you have, let me know. I can connect you with others like you.

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Thank you so much!!!! I don't know yet the type yet. I'm full of varied emotions, right now I'm great lol!

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