Emotional health after cancer

Posted by azkidney57 @azkidney57, Sun, Oct 6 10:39am

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?

These are very powerful, valid and true feelings.
Thank you for sharing your feelings. I hope it was a healthy, productive mental release for you. I'm sorry for your diagnosis

I do not have cancer but diagnosed with a disease to which there is no cure or concrete treatment, yet.

I spend every Monday in the apherisis/Infusion unit of the hospital for over 5 hours. I am surrounded by patients of various needs. We all get wrist bands. People of all ages and walks of life. There is no discrimination when it comes to illness. My heart struggles when I hear babies crying and small children screaming. I sit there hooked up knowing there is nothing i can do to comfort them. Some days I'm not sure if i worry more for others or myself. I have been known to unhook for a rest room break and make my path past them to simply say hello, with a smile, and show them my wrist band too.

I hear what you say about the very common "how are you" question. It indeed is a loaded question. One that can have so many layers of an answer but in all honesty is just easier to reply "ok" to. My new reply has been, "hanging in" because generally I'm not "OK".

There have been many times during my infusion, as I sit alone, I have cried. At times peacefully to myself and other times behind the curtain uncontrollably.

It would be comforting to have someone on hand for mental support. That hug, the touch of a dog, etc…

I wish you the best in your journey and again thank you for being real with such sincerity. May good health find it's way to you both physically and mentally.

Rachel

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Hi @azkidney57 You bring to light a very important question I think. Personally I think the ignoring of mental/emotional health is endemic to our entire society. Plus I saw this same thing at work with my wife and with me. During my wife's war with her brain cancer only one of her doctors ever would ask about her emotional wellbeing. Additionally when I would go in to see my GP she would most often say this exact sentence "Scott, you look exhausted and worn out. How are you doing?" Then she would totally ignore anything I said! I especially recall one time answering "Actually, I am very depressed right now!" She said 'oh' and moved on without addressing it at all.

I also recall when my wife's surgeon told our daughter her mom would 'be back to normal'. She never was and when I told him sometime later that was a poor choice of words — he responded that my wife was back to being able to do normal things like talk, walk, eat, etc. He had no awareness of the fact she was extremely disabled emotionally and mentally. As a surgeon he was looking at the physical aspects only.

In my opinion the medical establishment needs to pay far greater attention to their patients' emotional wellbeing!

Strength, courage, and peace!

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@rwinney

These are very powerful, valid and true feelings.
Thank you for sharing your feelings. I hope it was a healthy, productive mental release for you. I'm sorry for your diagnosis

I do not have cancer but diagnosed with a disease to which there is no cure or concrete treatment, yet.

I spend every Monday in the apherisis/Infusion unit of the hospital for over 5 hours. I am surrounded by patients of various needs. We all get wrist bands. People of all ages and walks of life. There is no discrimination when it comes to illness. My heart struggles when I hear babies crying and small children screaming. I sit there hooked up knowing there is nothing i can do to comfort them. Some days I'm not sure if i worry more for others or myself. I have been known to unhook for a rest room break and make my path past them to simply say hello, with a smile, and show them my wrist band too.

I hear what you say about the very common "how are you" question. It indeed is a loaded question. One that can have so many layers of an answer but in all honesty is just easier to reply "ok" to. My new reply has been, "hanging in" because generally I'm not "OK".

There have been many times during my infusion, as I sit alone, I have cried. At times peacefully to myself and other times behind the curtain uncontrollably.

It would be comforting to have someone on hand for mental support. That hug, the touch of a dog, etc…

I wish you the best in your journey and again thank you for being real with such sincerity. May good health find it's way to you both physically and mentally.

Rachel

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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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@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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This may sound a bit out of the norm, but Blue Cross/Blue Shield of Florida called me "out of the blue" to see how i was doing. They have a free program where certain people are flagged in the system if it appears they are going thru extreme medical situations. This is a RN, and she was very good about asking the right questions. I had pancreatic and metastatic breast cancers simultaneously. Depression was the worst. i would sit and just cry a few times every day just because. She recommended me seeing a psychologist and gave me a list of doctors in my area from which i could choose. I am not on any medication for this, but she is a licensed professional who has helped me so much thru my ordeal. Although I still feel sad/depressed at times, it is much better. As i am emerging from the chemicals (chemo, radiation and pills), procedures and surgeries, I can't recall the past two years. But it does get better if you find someone to talk it out with. I was never a believer in this, but it works. Support groups can depress you as well, so please be careful with them. Good luck in your search – once you find the right person to talk with you will see that it will make you better.

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@dianamiracle

This may sound a bit out of the norm, but Blue Cross/Blue Shield of Florida called me "out of the blue" to see how i was doing. They have a free program where certain people are flagged in the system if it appears they are going thru extreme medical situations. This is a RN, and she was very good about asking the right questions. I had pancreatic and metastatic breast cancers simultaneously. Depression was the worst. i would sit and just cry a few times every day just because. She recommended me seeing a psychologist and gave me a list of doctors in my area from which i could choose. I am not on any medication for this, but she is a licensed professional who has helped me so much thru my ordeal. Although I still feel sad/depressed at times, it is much better. As i am emerging from the chemicals (chemo, radiation and pills), procedures and surgeries, I can't recall the past two years. But it does get better if you find someone to talk it out with. I was never a believer in this, but it works. Support groups can depress you as well, so please be careful with them. Good luck in your search – once you find the right person to talk with you will see that it will make you better.

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Thank you for sharing.

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@dianamiracle

This may sound a bit out of the norm, but Blue Cross/Blue Shield of Florida called me "out of the blue" to see how i was doing. They have a free program where certain people are flagged in the system if it appears they are going thru extreme medical situations. This is a RN, and she was very good about asking the right questions. I had pancreatic and metastatic breast cancers simultaneously. Depression was the worst. i would sit and just cry a few times every day just because. She recommended me seeing a psychologist and gave me a list of doctors in my area from which i could choose. I am not on any medication for this, but she is a licensed professional who has helped me so much thru my ordeal. Although I still feel sad/depressed at times, it is much better. As i am emerging from the chemicals (chemo, radiation and pills), procedures and surgeries, I can't recall the past two years. But it does get better if you find someone to talk it out with. I was never a believer in this, but it works. Support groups can depress you as well, so please be careful with them. Good luck in your search – once you find the right person to talk with you will see that it will make you better.

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Dianamiracle, I am glad you are getting support. That is unusual for an insurance company to check in on patients and provide assistance that’s something I wish happened more often. No one should have to deal with a major illness alone. Cancer takes a huge toll on physical, emotional, and financial aspects of a persons life. Hang in there! I wish you the best!

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First you are a very excellent writer and I share your thoughts. After going through VAT surgery a few weeks ago I am slowly feeling better. I had a follow up with the surgeon and I don't need chemo now and that was very helpful. Throughout the entire process I have not heard an encouraging word. I first began my journey at Mayo and then had surgery in Chicago to be near my family. I no longer read the information on the internet as it is too depressing. The health care providers are so accustomed to dealing with cancer they seem to ignore our emotional side. I am trying to get back to what used to be normal but it is a struggle. When I went back to the oncology department for my post op visit there were many patients with various types of cancer and all ages, but mostly older look me. I was amazed that they seemed to be in good spirits and I said to one of them that this is not where I want to be. She replied that we were in good hands. So knowing we are in good hands with our medical team and the Lord will guide us through our journey. For me I am trying to take one day at a time and on occasion one hour a time.

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@woodedareas

First you are a very excellent writer and I share your thoughts. After going through VAT surgery a few weeks ago I am slowly feeling better. I had a follow up with the surgeon and I don't need chemo now and that was very helpful. Throughout the entire process I have not heard an encouraging word. I first began my journey at Mayo and then had surgery in Chicago to be near my family. I no longer read the information on the internet as it is too depressing. The health care providers are so accustomed to dealing with cancer they seem to ignore our emotional side. I am trying to get back to what used to be normal but it is a struggle. When I went back to the oncology department for my post op visit there were many patients with various types of cancer and all ages, but mostly older look me. I was amazed that they seemed to be in good spirits and I said to one of them that this is not where I want to be. She replied that we were in good hands. So knowing we are in good hands with our medical team and the Lord will guide us through our journey. For me I am trying to take one day at a time and on occasion one hour a time.

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Time is moving forward but sometimes I feel like I am standing still and life is moving forward and it’s a blur. I take one day at a time one moment at a time as well. I believe it is a protective defense mechanism. Some days are better than others. I also notice at my cancer center some patients seem happy while I dread being there. There is laughter while I feel like crying. It is all a matter of prospective. I don’t want to be a cancer patient but I am. I think because it is still new to me. It’s been 4 months since my surgery. I have scans this month so that is making me nervous. Scanxiety is a word someone coined and it is appropriate. I have it and I need to practice to be positive because I need to be scanned. My lab work is normal I just found out yesterday. That made me glad. Living with a cancer diagnosis is rough. It takes a toll. You must do what feels best! Some days I want to be around friends other days I prefer to be alone. My dog is a great comfort. He is always there for me. He makes me laugh. He can be such a silly boy. I relish in the simple things and that helps me. I also take lots of walks it clears my mind. Keep strong and push forward. No one has a promise of tomorrow.

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@azkidney57

Time is moving forward but sometimes I feel like I am standing still and life is moving forward and it’s a blur. I take one day at a time one moment at a time as well. I believe it is a protective defense mechanism. Some days are better than others. I also notice at my cancer center some patients seem happy while I dread being there. There is laughter while I feel like crying. It is all a matter of prospective. I don’t want to be a cancer patient but I am. I think because it is still new to me. It’s been 4 months since my surgery. I have scans this month so that is making me nervous. Scanxiety is a word someone coined and it is appropriate. I have it and I need to practice to be positive because I need to be scanned. My lab work is normal I just found out yesterday. That made me glad. Living with a cancer diagnosis is rough. It takes a toll. You must do what feels best! Some days I want to be around friends other days I prefer to be alone. My dog is a great comfort. He is always there for me. He makes me laugh. He can be such a silly boy. I relish in the simple things and that helps me. I also take lots of walks it clears my mind. Keep strong and push forward. No one has a promise of tomorrow.

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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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@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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I appreciate your thoughts Bob. I have never tried meditation before. It’s worth a try. That just might help.

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@azkidney57

I appreciate your thoughts Bob. I have never tried meditation before. It’s worth a try. That just might help.

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I have the same feelings as you have. I'am trying to get up each day and go to my office for at least a while, go for a short walk and I have found reading books on my IPAD to to very helpful in reliving some stress. I am doing whatever I can to return to what normal used to be. This is not where I want to be but we are all here. Have a good day.

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@woodedareas

I have the same feelings as you have. I'am trying to get up each day and go to my office for at least a while, go for a short walk and I have found reading books on my IPAD to to very helpful in reliving some stress. I am doing whatever I can to return to what normal used to be. This is not where I want to be but we are all here. Have a good day.

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@woodedareas I'm pleased that you have found a variety of activities to help relieve your stress. That is so important! Your normal has definitely changed and it is important to adapt to a new way of life.

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@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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Hello @grandpabob, you are right when you say, "that knowledge of having cancer affects us all in different manners." There is not a one-size-fits-all way to deal with this type of stress. You have brought up some good ways that you have dealt with anxiety, Since you mentioned pets, I thought that you might enjoy reading a Connect discussion on the way pets can help us with health and healing. Here is the link, https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/

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I was very interested in your thoughtful post. Today we go to the cancer center for the very first time for my husbands pancreatic cancer. I will pay very close attention.

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