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Emotional health after cancer: How are you doing really?
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?
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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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4 Reactions@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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3 ReactionsColleen, 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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4 ReactionsThanks 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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3 ReactionsHi @susandc I just wanted to add a real world example of how solid your thoughts on writing down your final wishes is.
My wife dictated to me her final wishes. She picked the music, the celebrant, location (our home), food, wine, eulogists (not me as she said I would talk too long and cry too much), cremation, locations for her ashes to be scattered, and for a variety of personal reasons she even had me write down who she wanted invited. As she put it, rather indelicately, 'Scott, I don't want anyone standing around in our home blowing smoke up your (body part) telling you how much they cared about me after I'm dead when they didn't give a (you can guess what) about me when I was alive.' She then shared this information with our adult children and her best friend so there was a core of folks who knew what was to go on and why.
She also decided to give her favorite jewelry and art to some family and friends before she died. She said she wanted to be the one to personally hand it to the next 'owner' and be able to tell them each why their item was special to her and why she wanted them to specifically have it.
She was in home hospice for the last 14 months of her war with brain cancer and we both were very pleased that she made this choice.
Not for everyone I am sure, but just wanted to share our experience with this.
Strength, courage, and peace.
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2 ReactionsThe emotional roller coaster of cancer drastically effects your life.
I am 64 women with breast cancer living by myself. I have finished my scheduled treatments and in Dec will have scans done to verify no cancer remains. At first friends and family are very supported. Like dianamiracle, a nurse from Blue Cross even called to see talk about treatments.
Now that I am done with treatment, people think your cured and life goes back to normal. I might look better on the outside, but the mind and body is still recovering. You have the fear that the next test may show more cancer. I still have problems with fatigue and being nausea, and then there is side effect of drugs.
After isolating for over year due to fatigue and not wanting to be exposed to germs, I am slowing adding activities to my life. At this stage, I thing being around people and exercising benefits me the most.
I do not think life will ever be the same as before cancer, I just have to accept a new normal.
Laurie
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2 ReactionsI am in my late 70's and just had surgery for what was referred to as early lung cancer. My wife and daughter both have great cancer and my daughter is 48 and has completed a lt of treatment. They will have their annual exams this month and I will go back in 2 months for another scan. Yes we have a new normal but I have learned that life is full of change even on a daily basis. Our future was unknown even before cancer, and I try to guide myself by recognizing that there are new and very effective treatments for cancer especially immune therapy which has been working.My doctors mother is 84 and was diagnosed with stage IV lung cancer. She was treated and now is on a form of immune therapy and is in remission, and playing tennis. Let's all hope and pray together. Good Thoughts.
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1 ReactionI am working full time now after I had my kidney removed in May and I don’t have the energy level I once had. So I look OK on the outside but I tire more easily and I can be an emotional wreck on some days. I have scans this month so I have scanxiety. My friends don’t get it that things are different now after a cancer diagnosis. My life will never be the same. I am getting accustomed to my new normal as it unfolds. It’s like a “re birth” of sorts. Priorities have changed my goal is to simply my life. You need to do whatever works best for you! Cancer patients all need and deserve on going care not just medical but emotional as well. I feel insurance companies should include home health visits for all patients that have gone through treatment especially for people who live alone. One may not have cancer in their body right now but the emotional scars cancer leaves behind deserve attention. My PCP asked me , “ so you’re ok now?” as he was walking out the door. My oncologists never ask how I am dealing with a cancer diagnosis their focus is medical. I am glad this site is here. I find it very helpful. I hope your scans are clean in December Laurie. I love your pic looks like you have a best friend!
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1 Reaction@azkidney57 Your post is so ‘right on.’ I call cancer and some autoimmune diseases ‘invisibles ‘. When there are no visible signs, everyone thinks you’re just fine. But, we’re not. Just not. Please take care of yourself. I’m sending you a hug. Becky
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1 ReactionThank you Becky I never refuse a hug! 😊
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