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.

@naturegirl5

@rainyp I was told by many sources (my radiation oncologist, my nurse practitioner, Cancer education group at Mayo Clinic) that this anxiety is very common and normal after treatment. You have been through something that none of us imagined and we weren't prepared for any of it. I became depressed about halfway through my radiation treatments and I did talk with the radiation oncologist about it. That's how I got involved in the Cancer Education group.

Before my first two appointments after I finished radiation I was very, very anxious to the point that I had to intentionally practice my cognitive-behavioral skills to reframe my thinking and practice mindfulness medication all day before my appointment. It's been one year and I was less anxious at my most recent appointment (in mid-December).

Do you have a mental health therapist you work with? If not, can your oncologist refer you to a mental health therapist who is skilled in working with cancer patients? I believe our needs do differ just enough that it helps to have someone who is skilled in this area.

It's a good insight that you pretended to be fine when you weren't. Some people aren't even aware that they are doing that and our providers tend to believe what we tell them instead of looking at our faces and body language and listening to our voice that are telltale signs that we very frightened.

What can you do for yourself that is soothing? Take bath? Listen to music you like? Watch a favorite movie? Practice yoga?

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Truthfully I do Crossword Puzzles, & watch a good Movie. Get myself so tired I fall right to sleep, but I often wake up sweating with Anxiety about what maybe tomorrow & that's so wrong, I have to start getting out more & joing Groups in my area, it's just hard..but I'm thankful I'm here, just wish I was stronger..

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@jbj

Truthfully I do Crossword Puzzles, & watch a good Movie. Get myself so tired I fall right to sleep, but I often wake up sweating with Anxiety about what maybe tomorrow & that's so wrong, I have to start getting out more & joing Groups in my area, it's just hard..but I'm thankful I'm here, just wish I was stronger..

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@jbj Do what you can, and please do not beat yourself up for not "doing more". Honor yourself that way, and know you are a strong person! We all have anxiety over something in our journey, whether it is an upcoming scan, or labwork, or current meds. Deep breaths, you are not alone.

Gentle as you go,
Ginger

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@rainyp

I am 3 weeks out from my last treatment and am super anxious about my scans in 3 weeks. I was super depressed during my treatments and I don't know why but I pretended I was fine to everyone including my doctors. I've always been a strong person but currently feel very scared and fragile.

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I felt like there was more stress and worry as the treatment ended than during treatment, when you feel like you are doing everything as a team to fight your disease. My oncologists and nurses at Mayo agreed with that and suggested therapy with an experienced counselor. I felt helplessness at the end of treatment, just waiting for scans and the return of cancer. Starting an immune therapy from out of the country at this time is what helped me feel I was still fighting the cancer. Also, educating myself on diet and other complementary therapies gave me knowledge and strength to feel empowered. Anxiety with scans is a given, but it gets better with time. Going in with a knowledge that there could be bad news is better than expecting an all clear. I am almost 11 years since my first surgery, radiation and chemo. I have had a few metastases over the years addressed with surgery and now an immunotherapy. A friend shared his analogy with us of just keep kicking the can down the road.....new treatments and research is always changing the cancer field so it can be an endless road. A few good books to help combat your anxiety and give you a positive direction: How Not To Be My Patient by Edward Creagan MD, Radical Remissions by Kelly Turner and her newer book Radical Hope, The Rebel's Apothecary by Jenny Sansouci. Complementary therapies may not have the accepted medical testing your doctors demand, but there is a lot of anecdotal evidence of benefit from good nutrition and supplements like Beta Glucan. Good luck to you.

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Throughout my treatments I totally dreaded weekends. Those were days when it felt as if nothing was being done to rid me of this disease. It was also a time when everything seemed to go awry. A leaky pick line created a double saddle blood clot over both lungs and my heart, putting me in the hospital for the next week. Pneumonia after one of the chemo sessions popped up on a weekend. I simply was more comfortable on the days I was being monitored. Now, as I am making the decision to stretch my appointments out to a year, I feel anxious about the prospect of not being seen for that period of time. I know that I am very fortunate, but ridding myself of the thought of how quickly the cancer presented itself creates a constant consciousness. I need to wean myself off of the comfort I feel after being monitored and get some of my invincibility back.
Good luck to all of you going through your treatments. This too shall pass.

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@rggj

Throughout my treatments I totally dreaded weekends. Those were days when it felt as if nothing was being done to rid me of this disease. It was also a time when everything seemed to go awry. A leaky pick line created a double saddle blood clot over both lungs and my heart, putting me in the hospital for the next week. Pneumonia after one of the chemo sessions popped up on a weekend. I simply was more comfortable on the days I was being monitored. Now, as I am making the decision to stretch my appointments out to a year, I feel anxious about the prospect of not being seen for that period of time. I know that I am very fortunate, but ridding myself of the thought of how quickly the cancer presented itself creates a constant consciousness. I need to wean myself off of the comfort I feel after being monitored and get some of my invincibility back.
Good luck to all of you going through your treatments. This too shall pass.

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Hello @rggj,

You have certainly expressed the feelings of a cancer survivor well! I appreciate your words. Life after cancer treatment represents a new way of living and it is a process, and this process may take time. There was a certain comfort in the follow-up appointments and the monitoring. However, as we come to a place where that is no longer necessary, we need to look for other ways to support ourselves emotionally.

Sue, @sepdvm, had a great thought when she posted about seeing a counselor. This may just be the professional support that would be good for you at this time. Also, this is a good time to explore some activities that would help you to feel good. Whatever interests you in the way of physical activities, reading, movies, lunching with friends. All of these can be emotionally healing.

Do any of these ideas sound like they might help you to focus on life after cancer treatment?

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I just found this thread and have read through most of the comments. I'm 2 months post radiation after having chemo, then bilateral, then radiation for TNBC and I'm BRCA2+. I was fortunate to have minimal side effects from all my treatment. I'm still working and getting ready to retire and I find some days I get nothing done at work - fortunately I still work remotely - but the work that needs to get done, I'm completing. But some days I just don't want to focus.

My emotions are all over the place - I provide care for my 96 YO mom that still lives alone and close to me (her wish); so I can provide immediate care if I need to. Going through my treatment was a roller coaster ride - telling my mom only enough so she knew things were progressing positively so she wouldn't worry. I know in the back of her mind there was the question - if something happens to me (my mom) who is going to take care of her. All my siblings live in other states and I'm not sure what would have happened. My husband is a good man but provides NO emotional support. If I tell him I need a hug, I'll get one - but he's not intuitive enough to sense I need one without asking - sometimes that's a good thing - other times I wish I didn't have to ask. I know its a no-win situation

With active treatment completed - I'm waiting for approval for my maintenance med - it's odd. Sometimes I feel as if I'm sleep walking or just going through the motions. Other times I'm excited - but in the back of my mind there is this little voice that tells me to be "thankful" I've done everything medically current that I can do for my dx and it's time to get started on that bucket list I have. Which I am doing - but emotionally I never learned how to release that pent up feeling. I'm trying to learn yoga and meditation - but I don't know how to get "unstuck". I've reviewed the signs of depression and I don't meet that criteria - but maybe I need to talk to someone. I have found this board and many of the discussion groups informative and sometimes helpful.

Thank you for listening to my rambling - today is another unfocused day. Tomorrow will be better - I hope.

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@bpknitter53. I hear you! While I’m not taking care of an older parent (both died well before my cancer diagnosis) the emotional aftermath has been a rollercoaster. My initial diagnosis of endometrial cancer was in 2019 right after I retired. Good timing, right? Fortunately it was caught early and it was staged 1a following a hysterectomy. During a cancer surveillance follow-up in late 2021 a little polyp-like growth was found on the vaginal cuff. The polyp was sent to pathology and it was a recurrence. Within a few weeks I started radiation therapy and had to live away from home for 6 weeks.

My partner believes he provides emotional support because he goes with me to all my appointments at Mayo Clinic which is 450 miles away. I certainly appreciate that. Like your husband, I do need to tell him when I need support like a hug. It’s very difficult for me to ask for emotional support. I don’t expect him to “know” but it’s still hard.

I wasn’t depressed during the radiation therapy or afterwards. But like I have periods of time when I feel very anxious and well, stressed. I lose focus and need to remind myself with a hand over my heart (that’s how I bring self-compassion to myself) that it’s OK if I’m not busy and productive every waking moment. It’s OK to have an off day.

Some of us will continue to re-visit our diagnoses and experiences and wonder, what’s next? Others I know who have had more advanced or agressive cancers are able to let all that go and live their lives with grace.

This post is all over the place and I hope you can figure out what I’m trying to communicate. Life is a blessing and living with cancer is also a blessing because we are alive. Can we remind ourselves of the beauty of nature (that’s where I get the most solace) and live a day at a time? And give ourselves the grace to make mistakes with that?

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@naturegirl5

@bpknitter53. I hear you! While I’m not taking care of an older parent (both died well before my cancer diagnosis) the emotional aftermath has been a rollercoaster. My initial diagnosis of endometrial cancer was in 2019 right after I retired. Good timing, right? Fortunately it was caught early and it was staged 1a following a hysterectomy. During a cancer surveillance follow-up in late 2021 a little polyp-like growth was found on the vaginal cuff. The polyp was sent to pathology and it was a recurrence. Within a few weeks I started radiation therapy and had to live away from home for 6 weeks.

My partner believes he provides emotional support because he goes with me to all my appointments at Mayo Clinic which is 450 miles away. I certainly appreciate that. Like your husband, I do need to tell him when I need support like a hug. It’s very difficult for me to ask for emotional support. I don’t expect him to “know” but it’s still hard.

I wasn’t depressed during the radiation therapy or afterwards. But like I have periods of time when I feel very anxious and well, stressed. I lose focus and need to remind myself with a hand over my heart (that’s how I bring self-compassion to myself) that it’s OK if I’m not busy and productive every waking moment. It’s OK to have an off day.

Some of us will continue to re-visit our diagnoses and experiences and wonder, what’s next? Others I know who have had more advanced or agressive cancers are able to let all that go and live their lives with grace.

This post is all over the place and I hope you can figure out what I’m trying to communicate. Life is a blessing and living with cancer is also a blessing because we are alive. Can we remind ourselves of the beauty of nature (that’s where I get the most solace) and live a day at a time? And give ourselves the grace to make mistakes with that?

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@naturegirl5 - thank you for your kind words. I forget that I find a calm in just walking and listening to music - some makes me smile - other songs make me feel it's OK to cry (not sure why I feel that makes it OK to cry, but somehow it does). I need to do that more often when the emotions get overwhelming. Learning what self-care looks like gets challenging and finding what fits the moment can be trial and error - but the more suggestions we get from others the greater our chances of something that works for us for that instance.

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@bpknitter53 It’s so true. Self-care comes in so many ways and there are days that one thing works and another day that doesn’t work as well. I agree that getting suggestions from others is helpful and increases the possibility that we will find something for ourselves.

We’ve adopted a new strategy I read about recently in The NY Times. At least I have. When I intuit that my partner needs support (no surprise that I might be better at this than he is!) I can say “Do you want to be helped, heard or hugged?”. I told him about this and he liked the idea. Let’s see if we can use it in actual practice.

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Early on I found out there is a huge difference between cancer treatment and cancer care. My team at Mayo Clinic is a care team. Yes, I get the treatment but that's just expected. I spend my day there with people who have come to know me, who care about me, who know all the non-medical details of my life. I routinely spend an hour of each appointment with my oncologist talking about life and maybe five minutes of that is about my Stage IV NSCLC. We will get three or four chemo nurses at a time in the treatment room carrying on a dozen conversations. At one appointment another patient passed by in the corridor outside my room and said "I want to be in here next time." My treatment at Mayo has been anything but routine.

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