1. < Cancer: Managing Symptoms

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.

nutmeg56 | @nutmeg56 | Apr 12, 2022
In reply to @IndianaScott "Hi @nutmeg56 I am sorry to read of your diagnosis and I certainly wish you all..." + (show)
@IndianaScott

Hi @nutmeg56 I am sorry to read of your diagnosis and I certainly wish you all the best on your journey!

Your post struck a chord with me. My wife and I struggled greatly with several of her doctors who had her as a patient. It's kind of a litany, but I remember we walked out of the first surgeon's office to seek a second opinion more due to his lack of empathy than anything else. My wife's GP for many, many years was so divorced from her emotional needs that we also left her practice. While my wife's surgeon was extremely good at explaining the surgery part of things to her and us, we found that was the extent of his desire to interact with her. He saw his job as surgery and not follow-up or emotional care, etc. I quickly lost track of how many specialists and subspecialists we saw, who were good at their jobs, but didn't really focus on what my wife needed most -- supportive medical care. It wasn't until we connected with the doctor who became her 14+ year neuro-oncologist who looked at her needs as a whole person and not just as a person with a disease. He remains a personal friend to this day. He understood sometimes my wife needed an ear to listen to her as much as an adjustment on one of her dozen meds or the explanation of her recent MRI. He even understood I, as the caregiver, needed that ear for advice and support at times, too.

All this said I heartily applaud you for knowing what you need in your care and, while it takes extra energy to do so, be committed to finding the right kind of supportive medical care you need! It can be worth it! It sure was for my wife.

Also, I discovered the benefits can flow both ways. Not long ago that neuro-oncologist told me he has adjusted how he treats patients differently now based on what HE learned from my wife.

Continued Strenth, Courage, & Peace

Jump to this post

Wow, that is wonderful. Doctors should learn from their patients. We should never stop learning. Drs. can certainly learn from their patients. Things are always changing and I know it must be difficult to work with a patient for a long period of time and then they die. Dealing with cancer they are going to lose patients. Other specialties don't deal with death like cancer surgeons. Oral cancer has a 52 or 53% survival rate so they lose a lot of patients. There hasn't been as much research on it as other cancers. They know a lot less.
Everyone knows about breast cancer, prostate cancer,
thyroid cancer, etc. But not much about oral cancer. I certainly didn't. I don't smoke or drink, which are the main risk factors. It's hard to find a doctor that has the right bedside manner. It can take so little to make a big difference. My first cancer surgery I was a wreck. I hate anesthesia. I am afraid I will not wake up. When the anesthesiologist came over to ask his questions he saw I was nervous. He put in the line, and said don't worry, you're going to be ok. I'm going to take care of you. And he patted me on the arm. It made such a huge difference. I felt safe. Such a small thing can make such a big difference. Only takes a minute.
Maybe they think what matters is doing the surgery successfully. Not so much the emotional side of things.
For me I need both. I'mean glad your wife found someone who can empathize and also treat the disease. I think my doctor feels there should be professional boundaries. On the other hand before my first surgery he gave me his cell number so I could call him if I had questions.
And at the first appointment he said I should call him by his first name. I have called or texted him quite a few times and he usually gets back to me very quickly. I've never had a doctor do that.
I think sometimes I expect too much. More than I deserve.
I'mean afraid if I address the issue he will tell me to find another doctor.
I hope your wife
keeps improving. Having a caring husband like you is a blessing. I hope I get to chat with her one day soon. Take care. Eliza
REPLY
callalloo | @callalloo | Apr 12, 2022
In reply to @IndianaScott "Hi @nutmeg56 I am sorry to read of your diagnosis and I certainly wish you all..." + (show)
@IndianaScott

Hi @nutmeg56 I am sorry to read of your diagnosis and I certainly wish you all the best on your journey!

Your post struck a chord with me. My wife and I struggled greatly with several of her doctors who had her as a patient. It's kind of a litany, but I remember we walked out of the first surgeon's office to seek a second opinion more due to his lack of empathy than anything else. My wife's GP for many, many years was so divorced from her emotional needs that we also left her practice. While my wife's surgeon was extremely good at explaining the surgery part of things to her and us, we found that was the extent of his desire to interact with her. He saw his job as surgery and not follow-up or emotional care, etc. I quickly lost track of how many specialists and subspecialists we saw, who were good at their jobs, but didn't really focus on what my wife needed most -- supportive medical care. It wasn't until we connected with the doctor who became her 14+ year neuro-oncologist who looked at her needs as a whole person and not just as a person with a disease. He remains a personal friend to this day. He understood sometimes my wife needed an ear to listen to her as much as an adjustment on one of her dozen meds or the explanation of her recent MRI. He even understood I, as the caregiver, needed that ear for advice and support at times, too.

All this said I heartily applaud you for knowing what you need in your care and, while it takes extra energy to do so, be committed to finding the right kind of supportive medical care you need! It can be worth it! It sure was for my wife.

Also, I discovered the benefits can flow both ways. Not long ago that neuro-oncologist told me he has adjusted how he treats patients differently now based on what HE learned from my wife.

Continued Strenth, Courage, & Peace

Jump to this post

So, Scott, you wife got lucky twice. The first time in having you as her husband and, years later, finding a doctor who understands healing in its multiple facets.

REPLY
1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 13, 2022
In reply to @callalloo "So, Scott, you wife got lucky twice. The first time in having you as her husband..." + (show)
@callalloo

So, Scott, you wife got lucky twice. The first time in having you as her husband and, years later, finding a doctor who understands healing in its multiple facets.

Jump to this post

Good morning @nutmeg56 and @callalloo Thanks for your kind words. Unfortunately, my wife passed away from her disease, but we always knew this was the most likely outcome from the time of her initial diagnosis. Yes, we were really lucky to find her neuro-oncologist for sure! The first time we met it was about 2:00 am in my wife's hospital room while she was still in a post-op coma. He was sitting on the foot of her bed when I woke from dozing in the chair in her room. I asked him why he was there. He said, "I have a feeling this is going to be very challenging for your wife as well as her medical team and I felt the need to meet her right away". It was quite a way to bond...

Strength, Courage, & Peace

REPLY
lisaok | @lisaok | Jun 24, 2022

You are so right about how loaded and complex the internal reaction is to that seemingly benign question, “How are you?” Is after a cancer diagnosis. I go to the clinic, get poked, squeezed, and and inundated with information and possible treatment options. I am grateful I am in good care. I had been planning and waiting for this summer to complete some updates and repairs in my home that have been started. Then I get a cancer diagnosis just in time to derail everything I had looked forward to fixing before we hunker down for winter again. Rage kicks in an I find myself asking to push surgery and treatment out further and further so I can get my plan back on track. I have a manic panic rage driven anxiety that is allowing me unnatural levels of energy and it’s destructive. Pretty much everyone in my family has been “ripped a new one” for not caring. My demands and expectations of them have changed in my panic to complete work before I have surgery and become completely useless. I perceive their seeming lack of motivation or interest in helping me as unsupportive. My reasoning is that all the debris, filth and lack of functioning bathrooms will be detrimental to my recovery. Why don’t they care? Well it’s probably because I’m in a state of self-absorption, and unmerited self-pity. That’s what I gather. I must be the problem and cancer has exacerbated my maladjusted personality. I just feel a little insignificant and uncared for in a critical time of accepting I am a cancer patient. Ugh!
“How am I doing?” I’d rather not say.

REPLY
2 replies
Merry, Alumni Mentor | @merpreb | Jun 25, 2022
In reply to @lisaok "You are so right about how loaded and complex the internal reaction is to that seemingly..." + (show)
@lisaok

You are so right about how loaded and complex the internal reaction is to that seemingly benign question, “How are you?” Is after a cancer diagnosis. I go to the clinic, get poked, squeezed, and and inundated with information and possible treatment options. I am grateful I am in good care. I had been planning and waiting for this summer to complete some updates and repairs in my home that have been started. Then I get a cancer diagnosis just in time to derail everything I had looked forward to fixing before we hunker down for winter again. Rage kicks in an I find myself asking to push surgery and treatment out further and further so I can get my plan back on track. I have a manic panic rage driven anxiety that is allowing me unnatural levels of energy and it’s destructive. Pretty much everyone in my family has been “ripped a new one” for not caring. My demands and expectations of them have changed in my panic to complete work before I have surgery and become completely useless. I perceive their seeming lack of motivation or interest in helping me as unsupportive. My reasoning is that all the debris, filth and lack of functioning bathrooms will be detrimental to my recovery. Why don’t they care? Well it’s probably because I’m in a state of self-absorption, and unmerited self-pity. That’s what I gather. I must be the problem and cancer has exacerbated my maladjusted personality. I just feel a little insignificant and uncared for in a critical time of accepting I am a cancer patient. Ugh!
“How am I doing?” I’d rather not say.

Jump to this post

@lisaok- Welcome to Mayo Clinic Connect. I agree that cleanliness is very important for good healthy recovery. However, I'm not sure that pushing people away because of your expectations is healthy. Perhaps a compromise might be in the making?

No matter who gets cancer - those of us who weren't surprised but shattered and those of us who were both shattered and surprised cancer will interrupt everyone's lives. In my house, we had to decide many things that would need to change- mainly schedules, travel and a partial remodel of one of our rooms. Is there a way that a bathroom update for the one that you will use post-op be done and leave everything else for when you can have it done?

I have found that expecting people to react to things the way I do is a dangerous road to travel on. I have over-the-top expectations and have to be very careful with this. I sometimes forget that no one else is in my position.

"I'm the one with cancer and in need of treatment. I'm the one who sees all of these things around me that need to be fixed..and no one seems to understand." They can't possibly see things through your eyes. Can they?

REPLY
jldavis823 | @jldavis823 | Jun 25, 2022
In reply to @lisaok "You are so right about how loaded and complex the internal reaction is to that seemingly..." + (show)
@lisaok

You are so right about how loaded and complex the internal reaction is to that seemingly benign question, “How are you?” Is after a cancer diagnosis. I go to the clinic, get poked, squeezed, and and inundated with information and possible treatment options. I am grateful I am in good care. I had been planning and waiting for this summer to complete some updates and repairs in my home that have been started. Then I get a cancer diagnosis just in time to derail everything I had looked forward to fixing before we hunker down for winter again. Rage kicks in an I find myself asking to push surgery and treatment out further and further so I can get my plan back on track. I have a manic panic rage driven anxiety that is allowing me unnatural levels of energy and it’s destructive. Pretty much everyone in my family has been “ripped a new one” for not caring. My demands and expectations of them have changed in my panic to complete work before I have surgery and become completely useless. I perceive their seeming lack of motivation or interest in helping me as unsupportive. My reasoning is that all the debris, filth and lack of functioning bathrooms will be detrimental to my recovery. Why don’t they care? Well it’s probably because I’m in a state of self-absorption, and unmerited self-pity. That’s what I gather. I must be the problem and cancer has exacerbated my maladjusted personality. I just feel a little insignificant and uncared for in a critical time of accepting I am a cancer patient. Ugh!
“How am I doing?” I’d rather not say.

Jump to this post

I can truly relate. I had the master bathroom started when I got my diagnosis. I started chemo less than two weeks later, with the interim filled with Dr appointments and surgery to get my port inserted. I almost died from the first treatment and was hospitalized for a week to stabilize me. They removed one of the medications from my cocktail that they thought caused the problem, but I was bedridden for most of the months of chemo. I was lucky because I had disability insurance thru my employer, because we had to hire a caregiver for me. All this time the bathroom closest to me was out of order. My husband decided to bite the bullet and take out a home loan to finish the bathroom and add UV and hepa filtration for the furnace so clean the air for my health.

I don’t know your circumstances, but I started living by an adage when I got cancer the first time in my twenties. “The only thing you can control in life is your attitude.” Think about your perspective. In the scheme of things, life comes first. Get your health taken care of. The bathroom won’t matter if you die. Your family could care less about the bathroom and only care about you. If it means taking out a loan enough just to get it usable, you can worry about the rest when you are healthy. Otherwise, your family will have to worry about the bathroom after they bury you. I don’t want to be harsh, but as a two time cancer survivor, your health and your family’s peace of mind should be first!

REPLY
remington | @remington | Oct 3, 2022

WOW! Talk about a Higher Power at work! Just 20 minutes ago I answered the Connect survey and said I needed more emotional support and this 3 year old thread pops up.
I received my advanced prostate cancer diagnosis almost a year ago, started hormone therapy in Dec, radiation in Feb, and second hormone in July. Radiation went very well and I actually was extremely positive about everything until about two months ago. While it appears the cancer may actually be under control I am having trouble dealing with the side effects of treatment. I'm always tired, sever joint pain, some minor cognitive issues, weight gain, urinary problems.... On top of it I really don't trust my urologist. Her treatment plan is working but she didn't communicate well to prep me for what laid ahead.
With all of the doctors I've seen it was my primary physician who noticed I seemed depressed and discussed possible treatments.
Being a 68yo male unable to do so many things I used to enjoy has been stressful. I'm glad I may have found a new outlet to discuss my feelings.
This is going to be an unpopular opinion, but please be careful about bringing companion pets into health care facilities. Many people are highly allergic to animals and don't expect to go to a clean environment only to be made sick by someone's pet.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 4, 2022
In reply to @remington "WOW! Talk about a Higher Power at work! Just 20 minutes ago I answered the Connect..." + (show)
@remington

WOW! Talk about a Higher Power at work! Just 20 minutes ago I answered the Connect survey and said I needed more emotional support and this 3 year old thread pops up.
I received my advanced prostate cancer diagnosis almost a year ago, started hormone therapy in Dec, radiation in Feb, and second hormone in July. Radiation went very well and I actually was extremely positive about everything until about two months ago. While it appears the cancer may actually be under control I am having trouble dealing with the side effects of treatment. I'm always tired, sever joint pain, some minor cognitive issues, weight gain, urinary problems.... On top of it I really don't trust my urologist. Her treatment plan is working but she didn't communicate well to prep me for what laid ahead.
With all of the doctors I've seen it was my primary physician who noticed I seemed depressed and discussed possible treatments.
Being a 68yo male unable to do so many things I used to enjoy has been stressful. I'm glad I may have found a new outlet to discuss my feelings.
This is going to be an unpopular opinion, but please be careful about bringing companion pets into health care facilities. Many people are highly allergic to animals and don't expect to go to a clean environment only to be made sick by someone's pet.

Jump to this post

Hello @remington,

You bring up such a good point! Cancer patients (or any patients dealing with chronic illnesses) have a change in lifestyle and need a place to discuss those feelings of uncertainty and frustration.

Cancer causes a change in our perspective. Whereas, we might have had physical outlets for stress, we now find ourselves needing to schedule social and physical activities around treatment appointments and the reality of fatigue.

As you are comfortable sharing and kicking off this discussion: What has been the biggest change for you?

REPLY
1 reply
ken240 | @ken240 | Oct 4, 2022
In reply to @remington "WOW! Talk about a Higher Power at work! Just 20 minutes ago I answered the Connect..." + (show)
@remington

WOW! Talk about a Higher Power at work! Just 20 minutes ago I answered the Connect survey and said I needed more emotional support and this 3 year old thread pops up.
I received my advanced prostate cancer diagnosis almost a year ago, started hormone therapy in Dec, radiation in Feb, and second hormone in July. Radiation went very well and I actually was extremely positive about everything until about two months ago. While it appears the cancer may actually be under control I am having trouble dealing with the side effects of treatment. I'm always tired, sever joint pain, some minor cognitive issues, weight gain, urinary problems.... On top of it I really don't trust my urologist. Her treatment plan is working but she didn't communicate well to prep me for what laid ahead.
With all of the doctors I've seen it was my primary physician who noticed I seemed depressed and discussed possible treatments.
Being a 68yo male unable to do so many things I used to enjoy has been stressful. I'm glad I may have found a new outlet to discuss my feelings.
This is going to be an unpopular opinion, but please be careful about bringing companion pets into health care facilities. Many people are highly allergic to animals and don't expect to go to a clean environment only to be made sick by someone's pet.

Jump to this post

I am 66 and due for my second Folferinox tomorrow, but I feel ok today, but know that I will feel terrible for several days. I feel like I have to do everything I can today before tomorrow. But, I can't do everything, and it's hard because I am task oriented. I have get used to relying on others, and that's hard, too. It's a big unwanted lifestyle change for sure. Best wishes.

REPLY
remington | @remington | Oct 4, 2022
In reply to @hopeful33250 "Hello @remington, You bring up such a good point! Cancer patients (or any patients dealing with..." + (show)
@hopeful33250

Hello @remington,

You bring up such a good point! Cancer patients (or any patients dealing with chronic illnesses) have a change in lifestyle and need a place to discuss those feelings of uncertainty and frustration.

Cancer causes a change in our perspective. Whereas, we might have had physical outlets for stress, we now find ourselves needing to schedule social and physical activities around treatment appointments and the reality of fatigue.

As you are comfortable sharing and kicking off this discussion: What has been the biggest change for you?

Jump to this post

Thanks for the response.
My biggest problem is the sever joint pain. I can't walk very far and as such can't do much. I don't want to go places because the walk from the parking lot to the venue is too much. I don't hunt anymore. I only sail on calm days ... Secondly would be the fatigue which has lead to falling behind on simple tasks including organizing my business affairs. Third would be urinary issues. That's pretty much the rank order of what I wish I could fix.
Yet, I'm alive and my oncologist says I'll probably stay that way for awhile. Now I just have to find new ways to enjoy it.

REPLY
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