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.

dianemb | @dianemb | Aug 12 10:02am
In reply to @stevecando54 "thanks so much to all of you, I know I'm not the only one but sure..." + (show)
@stevecando54

thanks so much to all of you, I know I'm not the only one but sure does help when you can read of others. I'm stage 4 prostate. I remind myself it's been 17 months and I'm still going forward. It just wears you down, my biggest side effect from meds is fatigue. I get it, it's better then the pain I had before starting treatment but doesn't mean that all is okay now. And yes, waiting for lab results each month gets your attention. I understand we need to fight through this every day and it's surely not an easy thing to do. I wish the best to all on this journey.

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I understand you are tired of the fatigue. I went through about 18 months of it with all my medication trials. Just try to find the good in each day.

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scottbeammeup | @scottbeammeup | Aug 12 11:23am

When I started treatment in April, I was given a survey about my mental health. After that, no one has ever asked me about it again. There's really no follow up of any kind and I go to a MAJOR cancer center that's considered one of the Top 5 in the country--I can't imagine what it's like elsewhere. For example, I have prostate cancer and was treated with radiation.

Beforehand, I had minor surgery to insert Fiducial Markers for beam tracking. It hurt a lot the next couple of days. Even a brief call from a nurse to say "hey, how are you feeling after surgery yesterday" would have been meaningful.

Same thing after finishing radiation. My first follow-up isn't until the end of this month, three months later. They've been responsive when I contact them about side effects but it would be nice to feel I'm more than just a datapoint on a nomogram.

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wooldridgec | @wooldridgec | Aug 12 1:26pm

I have stage 4 metastatic prostate cancer too. My wife asks me all the time - "Where is your head". It s obvious when I am upset because I become quiet and closed off in my own head. I've been fighting this now for 27 months. I have PTSD from the bone pain I suffering in the beginning. I never want to experience that again and it scares me more than dying. Most days I do fine. What is fine when you are facing stage 4 metastatic prostate cancer? I guess it is accepting that this is a new normal for my life. I feel good that I fought very hard in the beginning by taking radiation to my back and ribs, ADT, Darolutamide, followed by 10 chemotherapy treatments. I as able to endure more treatment then most men can handle and it has payed off. But, there was a price to pay. 10 chemo treatments has taken a very long time to recover. Radiation the worst. It is hard when I get a simple infection, lay me out. But I keep going. I get up and go to work everyday to provide for my family. I live as normal a life as I can. I accept I am not 6"1 238lbs of muscle anymore. I am thinner with les muscle. But, I can work, I can play, I have my family and I have Jesus. I get my strength through Jesus. But, there are some days I do get down, but I keep going and believing I will have a full life despite this horrible disease. Find a purpose in life. Find or restart a hobby. As for me, I used to be a pretty good Jazz Guitar player. I'm trying to work my way back. Puzzles are also helpful too. God Bless everyone. Praying for your healing.

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1 reply
stevecando54 | @stevecando54 | Aug 12 4:37pm
In reply to @wooldridgec "I have stage 4 metastatic prostate cancer too. My wife asks me all the time -..." + (show)
@wooldridgec

I have stage 4 metastatic prostate cancer too. My wife asks me all the time - "Where is your head". It s obvious when I am upset because I become quiet and closed off in my own head. I've been fighting this now for 27 months. I have PTSD from the bone pain I suffering in the beginning. I never want to experience that again and it scares me more than dying. Most days I do fine. What is fine when you are facing stage 4 metastatic prostate cancer? I guess it is accepting that this is a new normal for my life. I feel good that I fought very hard in the beginning by taking radiation to my back and ribs, ADT, Darolutamide, followed by 10 chemotherapy treatments. I as able to endure more treatment then most men can handle and it has payed off. But, there was a price to pay. 10 chemo treatments has taken a very long time to recover. Radiation the worst. It is hard when I get a simple infection, lay me out. But I keep going. I get up and go to work everyday to provide for my family. I live as normal a life as I can. I accept I am not 6"1 238lbs of muscle anymore. I am thinner with les muscle. But, I can work, I can play, I have my family and I have Jesus. I get my strength through Jesus. But, there are some days I do get down, but I keep going and believing I will have a full life despite this horrible disease. Find a purpose in life. Find or restart a hobby. As for me, I used to be a pretty good Jazz Guitar player. I'm trying to work my way back. Puzzles are also helpful too. God Bless everyone. Praying for your healing.

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thank you for sharing, I am in the same boat, although I didn't receive radiation, which let's be honest puts you ahead of me in treatment. After reading on here, I'm in no hurry to go that route. I'm 17 months in and every day is a fight. I used to have "good" days but lately it's been a struggle. I know I need to shake it off and bounce back. When having a good day, body is still beat up from fatigue but my head is in a good place. It sure does help reading of others battling through this. Best to all.

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eyeoftheestorm | @eyeoftheestorm | Aug 16 7:21pm

Wonderful write up , and oh so very true ! Big Hug To You !!!!

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abdullah | @abdullah | Sep 20 6:37am
In reply to @grandpabob "I am happy to hear your lab work is normal. That is a win in anyone’s..." + (show)
@grandpabob

I am happy to hear your lab work is normal. That is a win in anyone’s books. I too have found scans to cause anxiety. I concur that friends are great but not always what we need in the moment. It is comforting to know that your dog provides a great amount of comfort, pets do indeed have a calming effect. Never feel bad that your mood is not exactly the same as the next person. Treatments and that knowledge of having cancer effects us all in different manners. Have you tried a “meditation” app when your anxiety builds?

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It's wonderful to hear that your lab work came back normal—definitely a win! I completely understand how anxiety can build up around scans, and you're right, everyone experiences these moments differently. It's great that your dog brings you comfort—pets can be such a calming presence. Meditation apps can be really helpful when anxiety strikes, and it might be worth exploring if you haven’t already. Stay strong, and don't feel pressured to react in the same way as others—everyone’s journey is unique.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 20 7:57am
In reply to @abdullah "It's wonderful to hear that your lab work came back normal—definitely a win! I completely understand..." + (show)
@abdullah

It's wonderful to hear that your lab work came back normal—definitely a win! I completely understand how anxiety can build up around scans, and you're right, everyone experiences these moments differently. It's great that your dog brings you comfort—pets can be such a calming presence. Meditation apps can be really helpful when anxiety strikes, and it might be worth exploring if you haven’t already. Stay strong, and don't feel pressured to react in the same way as others—everyone’s journey is unique.

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Hello @abdullah and welcome to Mayo Connect. I appreciate your post on anxiety and cancer. You are right when you say that "everyone's journey is unique."

As this is your first post on Connect, please share as you are comfortable doing so, a little about yourself. Have you personally had an experience with cancer that you would like to share?

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isadora2021 | @isadora2021 | Sep 21 8:08am

@azkidney57 Thank you for sharing. Reading your post made me realise how very very fortunate I have been with my medical team from the get go, including the wonderful nurses in the infusion centre I attended fortnightly for a few hours then saw again for my 46 hour take home pump to be detached. My mental health and how I’m going personally has been front and centre at all times with my oncologist, nurse practitioner and GP.

I’m over 2 years NED after a full on treatment plan. Thank you to all those medical practitioners who DO get how important in the fight the mind is. Big shout out ♥️

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abob | @abob | Sep 21 10:27am

Thx for asking. What my husband and I have learned that perhaps “cancer free” means only at that moment. Sadly, NSCLC seems to be ongoing, popping up again at any moment even tho you remain diligent with treatment. Sigh.

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flowergal | @flowergal | Sep 21 11:36am
In reply to @becsbuddy "@azkidney57 WOW your discussion is powerful! And so true. I’ve been thinking if there was just..." + (show)
@becsbuddy

@azkidney57 WOW your discussion is powerful! And so true. I’ve been thinking if there was just someone to talk to honestly. I do see a wonderful therapist but she’s not there 24/7. And most people don’t really want to know.😥 one thing I do know having been a nurse on an oncology unit for 11 years. Nurses cry all the time, either with the patient or at the nurses station or in the break room. We ran out of tears sometimes.
Have you thought about finding a good therapist?

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True that most people don't want to know. I can see in their eyes they don't really want to know. Sometimes it's because they don't want to face their own mortality.
When I found out I had cancer my neighbor/friend of 15+ years happened to be there. I was emotional and told her why (she didn't ask). As I was telling her what was happening she answered her cell phone(!) . I knew she was not an empathetic person so I should have known better. Since then she has never asked about it.

I have an appointment with a therapist at my oncology office next week. Long overdue since all this started. It is hard.

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