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.

stevecando54 | @stevecando54 | Jan 31 6:01am

I'm truly sorry for your journey. Just know that you can deal with the outcome of your tests. Please keep reading on here, so many people who are in the same boat. When I finally went to see a doctor, I already had stage 4, in the bones prostate cancer. Almost 2 years now and I get by. I didn't have all the anxiety you are going through now wondering the what if. I do wish you the best on your journey, you can do this and you should seek support from family and friends, it is so helpful. Best to all.

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theanomaly | @theanomaly | Jan 30 5:01pm

I don't even have verified cancer yet and its depressing. Just the very real possibility 40% high risk each and every year was enough to throw me into a depression, lose interest in my hobbies and just ruminate over all the possible worst case scenarios my mind can conjure up. Making it worse is the fact that I'm fiercely independent and refuse to ever become a burden to anyone. I would never want my son to see any of this so Id just hide it for as long as possible and still push everyone away from the shame and the guilt of failing health. I have PIRADS 3 and 4 lesions and A.S.A.P cells suspicious as cancer yet no definitive diagnosis. The battle began the moment the doc called me after a very rapid rise in PSA 2.48 to 3.44 a .96 rise in one year. I was chasing storms in Kansas that day when I got the call. Doc said "I'm very worried you may have prostate cancer." I couldn't keep chasing I was just numb and couldn't function for a while after all that. Being faced with ones own mortality can really lead to a downward spiral.

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dbamos1945 | @dbamos1945 | Jan 5 9:57am

@azkidney57: Feelings like we have of loneliness, Guinea pig, invisible to “normal people”, burden to family, and the lowest priority of our oncologist seem to be a universal complaint of cancer patients. I too am searching for a way to be treated with respect. I’m not wanting others to cry with me - just look into my eyes and care that I have been chosen to wear the CANCER badge. Many people I thought were friends, act as though they could “catch it” if they actually admitted that I have cancer. Society has a lot to learn about “acceptance of cancer” and how to treat everyone with care and respect. I’m grateful for forums like this one where we are urged to “tell it like it is” regardless of how low we feel. Thank you all!

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carmita | @carmita | Jan 5 9:24am

You are so right. There are some people that genuine want to help,yet they don't understand. My faith in God is what keeps me hopeful,a d most of the times happy,joyful.
Helping g others is another thing that takes me out of feeli g sorry for me. I'm looking por for groups that meet in person or zoom that are going trough the same thing.
Blessings.
Carmen ivanov

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LisaY1 | @lisay1 | Dec 20, 2024
In reply to @gisellef "The possibility of a recurrence is often uppermost in survivors’ and caregivers’ minds. It is easy..." + (show)
@gisellef

The possibility of a recurrence is often uppermost in survivors’ and caregivers’ minds. It is easy to say don’t worry but hard to do.
I have a few suggestions for you and others who are struggling with these thoughts.
1. Find a physical activity that you enjoy—preferably that involves others if you are not already exercising. EG. Anything from pickle ball to line dancing if you are not in a regular strength/cardio activity. This will actually help avoid a recurrence, but while you are active you can’t think about having been ill.
2. Absolutely, change your diet if you are currently eating a high carb/high Sugar diet and make sure you add foods known to be high in cancer fighting antioxidents.
3. Tale up a hobby or activity that fascinates or absorbs your thoughts.
4. Find the humour in life. Take some time every week to read or see a movie that makes you laugh.
5. Get involved in a project that is bigger than ourselves that is meaningful to you in your community or in the world.
6. If this is something for you—maybe not for everyone, speak with a therapist or join a survivors group to meet others who will understand the concerns (and some of whom you may bond with).
Finally, consider this thought. You have completed your treatment and have been well for three years. That is a wonderful an accomplishment for you and your health care team. Best wishes for continued good health.

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What a lovely reply and very helpful suggestions.
Best wishes to you and thank you for your thoughtfulness.🌷

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gisellef | @gisellef | Dec 20, 2024
In reply to @lisay1 "For me, I think one of the hardest things is will the cancer return. Every ache..." + (show)
@lisay1

For me, I think one of the hardest things is will the cancer return. Every ache and pain sends me to that way of thinking. It's been three years since a double mastectomy with lymph node removal and I'm hoping that it will diminish each year. Best wishes all!🦋

Jump to this post

The possibility of a recurrence is often uppermost in survivors’ and caregivers’ minds. It is easy to say don’t worry but hard to do.
I have a few suggestions for you and others who are struggling with these thoughts.
1. Find a physical activity that you enjoy—preferably that involves others if you are not already exercising. EG. Anything from pickle ball to line dancing if you are not in a regular strength/cardio activity. This will actually help avoid a recurrence, but while you are active you can’t think about having been ill.
2. Absolutely, change your diet if you are currently eating a high carb/high Sugar diet and make sure you add foods known to be high in cancer fighting antioxidents.
3. Tale up a hobby or activity that fascinates or absorbs your thoughts.
4. Find the humour in life. Take some time every week to read or see a movie that makes you laugh.
5. Get involved in a project that is bigger than ourselves that is meaningful to you in your community or in the world.
6. If this is something for you—maybe not for everyone, speak with a therapist or join a survivors group to meet others who will understand the concerns (and some of whom you may bond with).
Finally, consider this thought. You have completed your treatment and have been well for three years. That is a wonderful an accomplishment for you and your health care team. Best wishes for continued good health.

REPLY
1 reply
LisaY1 | @lisay1 | Dec 19, 2024
In reply to @azkidney57 "You shouldn’t be alone during your infusions! That’s what mean that the emotional needs of anyone..." + (show)
@azkidney57

You shouldn’t be alone during your infusions! That’s what mean that the emotional needs of anyone with a chronic disease process is often ignored. I use to work at a dialysis center and they had a lady that would visit patients and sit next to them. I thought what a great idea! I later found out the woman was there on her own and not a paid employee. Thank you for sharing. Rachel. I was touched by your story. We are not alone! Stay strong!

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My 28 year old son has Chrons disease. Does not want me to hang out for infusions. Meets a lot of the same patients because they are on the same schedule. Better thing.

I went for radiation for breast cancer. Honestly, something difficult I prefer to do by myself. Otherwise I feel the need to chat with the other person so they are not uncomfortable. Met so many nice people in the waiting area. With radiation it's a daily thing and I met a people that I think about to this day

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LisaY1 | @lisay1 | Dec 19, 2024

For me, I think one of the hardest things is will the cancer return. Every ache and pain sends me to that way of thinking. It's been three years since a double mastectomy with lymph node removal and I'm hoping that it will diminish each year. Best wishes all!🦋

REPLY
1 reply
angiemal | @angiemal | Dec 12, 2024
In reply to @katiegrace "Angie, Thank you for having the courage to share your feelings. I'm not a doctor and..." + (show)
@katiegrace

Angie,
Thank you for having the courage to share your feelings. I'm not a doctor and I think your sadness could be coming from both the hormones and the past thoughts. It's good you are dealing with some of these past thoughts so you can walk through them and get past them. There are no right or wrong feelings. It is important to pay attention to your feelings and just let them sink in and really feel them. Journaling can sometimes help. It's going to be okay. Your feelings when your dad had Alzheimer's and you didn't want to go visit him, because you were afraid to see him that way - that is a normal feeling and you aren't the only one has done that. You can forgive yourself-you are human and humans are not perfect. It sounds like you might be blaming yourself , that you did something to get your cancer - I think that's a normal feeling too. No one knows exactly why any one person has gotten cancer. Don't blame yourself for your cancer. Try to focus on the good memories you have of your dad. He would want you to be happy. Be kind to yourself. Try to talk to yourself like you would talk to a friend. I care about you. Sometimes we are too hard on ourselves.

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Thanks for taking the time to read and respond. You are right I have a lot of beautiful memories with my father and I’m grateful with him for all the things that he did for me and my sisters. I’ll try to be more focused on that and be compassionate with myself. Thanks for your wise advise.

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abob | @abob | Dec 11, 2024
In reply to @angiemal "Hello! , I started my hormonal therapy 6 months ago. I thought I was doing ok..." + (show)
@angiemal

Hello! , I started my hormonal therapy 6 months ago. I thought I was doing ok however during the last weeks I've been crying more than usual . I'm going to mental theraphy once per month and I think I'm discovering some feelings from the past that I think I just ignored during long time. Those are related to my father's illnes , he had Alzheimer during 10 years and died 5 years ago. During all these years I never shared with anyone how sad I was after my father's diagnosis. He was always my super hero , a strong and smart guy that I loved with all my heart and I stop checking on him I guess because I was scared of seeing how deteriorated he was ... I blame myself for this , and for not asking him how we was dealing with all this. My therapist said that I need to stop asking why I developed cancer but now I can't stop thinking that all these feelings that I suppressed during all this time were somehow doing damage in my body and now they are coming to the surface , and that's why I've been crying latetly ... or is just a secondary effect of hormonal therapy? . I struggle sharing my feelings with others and definitely I appreciate this space to share... thanks for reading.

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I’m glad you are seeing a therapist you can talk to. I hope it’s helpful. Cancer is very difficult.

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