Emotional health after cancer

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?

@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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@susan2018

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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Hi @susan2018,
I hope your husband's appointment goes well. Will you post again?

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@hopeful33250

Hi @susan2018,
I hope your husband's appointment goes well. Will you post again?

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Oh, thank you. I will.

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@susan2018

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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Susan, i am a pancreatic survivor. if you wish to ask questions please don't hesitate to reply to me. Thanks

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I highly recommend sharing this discussion with the patient experience office or patient & family advisory councils at your cancer centers. They need to hear the stuff you've been sharing here – all of you. @dianamiracle I can imagine how much it meant to get a call out of the blue and be genuinely asked how are you doing? I think many cancer centers offer programs and services such as access to a social worker, support groups, classes, etc. However these are all services you have to seek out. It would mean so much to just have someone sit beside you and ask "how are you, for real?"

Has anyone looked into classes or group sessions at the cancer center? Has anyone seen therapy dogs at their hospital?

If your hospital doesn't have therapy dogs, let me bring the dogs to you. I present Caring Canines of Mayo

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@colleenyoung

I highly recommend sharing this discussion with the patient experience office or patient & family advisory councils at your cancer centers. They need to hear the stuff you've been sharing here – all of you. @dianamiracle I can imagine how much it meant to get a call out of the blue and be genuinely asked how are you doing? I think many cancer centers offer programs and services such as access to a social worker, support groups, classes, etc. However these are all services you have to seek out. It would mean so much to just have someone sit beside you and ask "how are you, for real?"

Has anyone looked into classes or group sessions at the cancer center? Has anyone seen therapy dogs at their hospital?

If your hospital doesn't have therapy dogs, let me bring the dogs to you. I present Caring Canines of Mayo

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@colleenyoung Our dog used to be a caring canine at Mayo Jax. While I was going through breast cancer treatment there, my husband trained Molly and she passed the testing with flying colors. After my treatment was done other than scheduled check ups, he enrolled Molly in the Caring Canine program and they went just twice a month because we do live 1 1/2 hrs. away. To be honest, we got lax and didn’t make her “follow the rules” when we were at home in our local neighborhood park with her doggy friends both human and canine. She flunked the test when she had to retest I think 2 years later…can’t really remember. As my cancer was returning, this took a backseat to other priorities. One day during her scheduled hour (and that was Mayo’s limit) we counted Molly’s business cards before starting. John handed out 83 business cards in maybe an hr and 10 minutes (because he was standing in the hall waiting for me to get a prescription filled). She loved it but she was totally worn out when her hour was finished. That is a wonderful program.

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@cwm1

@colleenyoung Our dog used to be a caring canine at Mayo Jax. While I was going through breast cancer treatment there, my husband trained Molly and she passed the testing with flying colors. After my treatment was done other than scheduled check ups, he enrolled Molly in the Caring Canine program and they went just twice a month because we do live 1 1/2 hrs. away. To be honest, we got lax and didn’t make her “follow the rules” when we were at home in our local neighborhood park with her doggy friends both human and canine. She flunked the test when she had to retest I think 2 years later…can’t really remember. As my cancer was returning, this took a backseat to other priorities. One day during her scheduled hour (and that was Mayo’s limit) we counted Molly’s business cards before starting. John handed out 83 business cards in maybe an hr and 10 minutes (because he was standing in the hall waiting for me to get a prescription filled). She loved it but she was totally worn out when her hour was finished. That is a wonderful program.

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@cwm1, so nice to e-meet, Molly. She must bring joy to you and so many. Thank you for sharing her.
Besides canine care, how have you taken care of your emotional health? Who supports you in taking care of your emotional health?

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@colleenyoung. I don’t think I do such a great job of taking care of emotional health. Getting a Stage 4 diagnosis threw me for a loop. We don’t have much in the line of friends since moving here and our 2 good friends moved to KY and the other set are moving to TN in Jan. My husband is the best and we have 3 sons who call almost daily. They are terribly supportive. My parents live a few blocks from us and they Molly sit when we go to Mayo but at 88 and 89, they need more help than they are able to give. I walk on the beach a lot, read and am doing acupuncture which is hopefully going to prevent more neuropathy with this round of chemos and immunotherapy along with relaxing me and all that hoopla which I can’t say I’m convinced of yet. My husband is insistent that I give it a fair shot. Medicare and the supplement won’t pay for it and nothing at Mayo Clinic is cheap so I stress over that too.
When I got cancer the first time, we hired a housekeeping service. I am going to go as long as possible without doing that this time because all I did was see what they didn’t do. My strategy is to accomplish 10 things a day and I keep a list of what I have done…I love lists! They don’t have to be big things and honestly I’m finding that my house is cleaner than it has been in a long time because 70 things a week is a LOT and doing 10 things a day keeps me just busy enough for a few hours (or minutes when I’m doing quick things on Mayo days as we live 1 1/2 hrs away). Last time, my husband took over grocery shopping and a lot of the cooking. He found that he enjoyed it and frankly after 48 years of doing it at that time, I was thrilled for him to do it. He’s pretty much continued that to my delight. After doing it for 3 years, he’s figured out what is likely to end up in the trash and does a better job now.
But the bottom line is that stage 4 triple negative breast cancer has a pretty grim prognosis. My oncologist was quite honest when I asked. I was hoping that she and Dr. Google would have different answers. I’m a big believe in quality over quantity and I don’t want my husband to end up an invalid from overdoing trying to take care of me. We’ve taken care of everything legally and are as sure as we can be that won’t be an issue. My husband refuses to discuss hospice or other end of life issues so we’ll just have to deal with it when the time comes.

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@cwm1

@colleenyoung. I don’t think I do such a great job of taking care of emotional health. Getting a Stage 4 diagnosis threw me for a loop. We don’t have much in the line of friends since moving here and our 2 good friends moved to KY and the other set are moving to TN in Jan. My husband is the best and we have 3 sons who call almost daily. They are terribly supportive. My parents live a few blocks from us and they Molly sit when we go to Mayo but at 88 and 89, they need more help than they are able to give. I walk on the beach a lot, read and am doing acupuncture which is hopefully going to prevent more neuropathy with this round of chemos and immunotherapy along with relaxing me and all that hoopla which I can’t say I’m convinced of yet. My husband is insistent that I give it a fair shot. Medicare and the supplement won’t pay for it and nothing at Mayo Clinic is cheap so I stress over that too.
When I got cancer the first time, we hired a housekeeping service. I am going to go as long as possible without doing that this time because all I did was see what they didn’t do. My strategy is to accomplish 10 things a day and I keep a list of what I have done…I love lists! They don’t have to be big things and honestly I’m finding that my house is cleaner than it has been in a long time because 70 things a week is a LOT and doing 10 things a day keeps me just busy enough for a few hours (or minutes when I’m doing quick things on Mayo days as we live 1 1/2 hrs away). Last time, my husband took over grocery shopping and a lot of the cooking. He found that he enjoyed it and frankly after 48 years of doing it at that time, I was thrilled for him to do it. He’s pretty much continued that to my delight. After doing it for 3 years, he’s figured out what is likely to end up in the trash and does a better job now.
But the bottom line is that stage 4 triple negative breast cancer has a pretty grim prognosis. My oncologist was quite honest when I asked. I was hoping that she and Dr. Google would have different answers. I’m a big believe in quality over quantity and I don’t want my husband to end up an invalid from overdoing trying to take care of me. We’ve taken care of everything legally and are as sure as we can be that won’t be an issue. My husband refuses to discuss hospice or other end of life issues so we’ll just have to deal with it when the time comes.

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Colleen, I went from being told stage 2 pancreatic cancer based on PET MRI to being told two days later it was stage 4 based on biopsy of a small liver spot they found during laparoscopic exam. This too has a pretty poor prognosis, but I've done very well with chemo at Mayo. My partner does the cooking too, but he's always been a better cook than I anyhow. I too do acupuncture and understand that it addresses our mind, sprit and emotion in addition to the physical, so I plan to continue. I read a good book – Radical Remission by Dr. Kelly Turner. It gave me hope and ideas of how to supplement the chemo with other things. I love your ten things a day list and I'm going to try it. Also please consider writing a sheet of your own final wishes even if he cannot discuss it. I want to die in hospice, not at home or hospital. Hospitals are impersonal and crowded, but in hospice, nurses can keep you clean, keep your morphine coming, suction you, etc. so loved ones only have to be fully present for you. They can step out for a breather when needed.
I have designated the music I want played, the hand lotion I want, and instructions like no political discussions or contentious arguments in my room even if I appear to be sleeping or unconscious. Hope this helps and wishing you peace and all good.

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@susandc

Colleen, I went from being told stage 2 pancreatic cancer based on PET MRI to being told two days later it was stage 4 based on biopsy of a small liver spot they found during laparoscopic exam. This too has a pretty poor prognosis, but I've done very well with chemo at Mayo. My partner does the cooking too, but he's always been a better cook than I anyhow. I too do acupuncture and understand that it addresses our mind, sprit and emotion in addition to the physical, so I plan to continue. I read a good book – Radical Remission by Dr. Kelly Turner. It gave me hope and ideas of how to supplement the chemo with other things. I love your ten things a day list and I'm going to try it. Also please consider writing a sheet of your own final wishes even if he cannot discuss it. I want to die in hospice, not at home or hospital. Hospitals are impersonal and crowded, but in hospice, nurses can keep you clean, keep your morphine coming, suction you, etc. so loved ones only have to be fully present for you. They can step out for a breather when needed.
I have designated the music I want played, the hand lotion I want, and instructions like no political discussions or contentious arguments in my room even if I appear to be sleeping or unconscious. Hope this helps and wishing you peace and all good.

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Thanks Susandc. BTW, I am Connie, not Colleen. I love the idea of your list. I will do that. I also want both of us to make a list of jewelry and family items that we want our children and grandchildren to have. Many years ago when I was still a teenager our family dentist got a terminal diagnosis and they put everything in his wife’s name. She was in an accident and passed away before him and he had a nightmare straightening it out while ill. I keep telling him that no one on this earth knows our expiration date and while it would appear to be obvious, sometimes it isn’t.

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