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.

Lori, Volunteer Mentor | @loribmt | Feb 5, 2021

In reply to @miriam57 "These stories are all reminders to me that it is possible to get better. Thankyou all..." + (show)

@miriam57 Thank you so much for your positive comment about the stories posted on Mayo Connect, reminding you that it’s possible to get better! There is hope shared on this site. The inspirational stories of struggle, tenacity, and achievement are so uplifting. That spirit of endurance while we’re on a desperate journey is shared among this community.

How are you doing with your latest treatments? I hope you’re responding well and growing stronger daily. Wishing you all the best, Lori

miriam57 | @miriam57 | Feb 5, 2021

In reply to @loribmt "@miriam57 Thank you so much for your positive comment about the stories posted on Mayo Connect,..." + (show)

I just had my second round of chemo for recurrent metastatic endometrial cancer. I packing my feet and hands in ice for 3 hours during Taxol. It May have helped with the muscle and nerve pain. Also taking Vitamin D, multi vitamin and B6 per the nurse practitioner. I have one more round and they will do a scan on March 4. I am not sure what is next or what I should expect. But it is good to see people living longer with this disease.

Lori, Volunteer Mentor | @loribmt | Feb 5, 2021

In reply to @miriam57 "I just had my second round of chemo for recurrent metastatic endometrial cancer. I packing my..." + (show)

@miriam57 I’m so sorry you’re having to go through treatments again. It’s always disconcerting when our cancer foe makes a return visit. Stay optimistic that these latest rounds of chemo will take out the cells once and for all. Do you have lingering nerve and muscle pain after your Taxol or is it only during the infusions? Is icing done to preempt the issue? I’m not familiar with Taxol but after reading about it just now, it sounds like you’re receiving the very best option for your endometrial cancer. So stay the course and trust your team!
What I learned on my cancer journey, is to take each day as it comes. Sounds so trite but it’s true. Giving up hope was never an option and remaining positive was foremost in my mind. Worrying about what was coming next did nothing but waste my strength and energy because whatever I imagined, never happened. It’s the stories we tell ourselves that create unnecessary stress.
Stay strong, stay positive! You’ve got this! Lori

miriam57 | @miriam57 | Feb 6, 2021

Lori, I appreciate your words of support. I am still trying to figure out that chemo could get rid of the cancer. Is that really possible? The icing, I had, read or heard and Mayo seems to support the idea, if you ice pack your feet and hands during the whole time you receive the Taxol it could help. I am not sure if this was it alone, but it did seem to work. Especially compared to my first time. I will know more when I do it again next time. I am willing to try anything...

Lori, Volunteer Mentor | @loribmt | Feb 6, 2021

In reply to @miriam57 "Lori, I appreciate your words of support. I am still trying to figure out that chemo..." + (show)

@miriam57 Hi Miriam, yes indeed, Chemo can get rid of the cancer! I’m living proof of that and so are millions of other people. There are so many kinds of chemotherapy. Some are more aggressive than others depending on the target. Cancer cells are crafty and need to be hit hard and fast. The Taxol interferes with the growth and spread of cancer cells in the body so it’s exactly the aim of your oncologist to rid your body of those cancer cells.

When you were on Taxol before did you experience any side effects? Were you given any educational background as to what to expect while on chemo? Because anytime you’re on a medication that disrupts fast growing cancer cells, it can also interfere with the other fast growing cells in your body such as soft tissue in your mouth which can get sore and tender, there can be a loss of taste, it can cause some hair loss and possible nausea. These are all temporary issues while you’re going through chemo and can linger a while afterwards. But our bodies have remarkable abilities to heal and regenerate. We just have to get rid of the offenders first!

I’m posting some links below that can help you better understand the possible side effects of chemo and what to do about it. Just know that you are not alone here! So many of us have similar journeys of cancer, chemo and recovery to a full and happy life.
Hugs! Lori
https://www.mayoclinic.org/tests-procedures/chemotherapy/in-depth/get-ready-for-possible-side-effects-of-chemotherapy/art-20111159
https://connect.mayoclinic.org/page/cancer-education-center/tab/nutrition-and-cancer/

mmurray | @mmurray | Feb 7, 2021

In reply to @loribmt "@miriam57 Hi Miriam, yes indeed, Chemo can get rid of the cancer! I’m living proof of..." + (show)

Living proof here, too, after chemo treatments in 2007 and 2011. I was diagnosed with Stage IV breast cancer in 2011. Guess I beat that, huh?

miriam57 | @miriam57 | Feb 7, 2021

In reply to @mmurray "Living proof here, too, after chemo treatments in 2007 and 2011. I was diagnosed with Stage..." + (show)

This is so good to see!!!!

gigitoava4 | @gigitoava4 | Feb 7, 2021

In reply to @loribmt "@miriam57 Hi Miriam, yes indeed, Chemo can get rid of the cancer! I’m living proof of..." + (show)

Yes I am living proof also chemo gets rid of cancer. 10 year breast cancer survivor. My cancer was chemo resistent. I had adrimysen, abraxane it was new 10 years ago and cytoin. I had very strong dosage of each drug infusion through a port in my chest. I tolerated it very well. I lost all my hair but was prepared as my daughter astually both are cosmotologists. We went wig shopping before hand and for skull caps that hold the wig in place. I had beautiful human hair wigs. When my hair started falling out after 2nd infusion went to her salon and she shaved my head. We both cried. She cut the wigs to my style and put one on and I felt some what normal. The eyebrows and eyelashes also will fall out. Your oncologist will give you scrips for nausea. Everyone is different. My tastes buds were strange. Everything tasted like metal. You may get Nulasta shots to make your bone create white blood cells faster which can cause severe bone pain which I developed.

I also developed severe pheriphial neuropathy in my feet and legs which has never gone away in 10 years. It has gotten progressively. I have a fabulous pain management physician who has given me quality of life. You will come out of treatment a different version of yourself. I am so greatful to be alive the neuropathy is a small price for beating cancer. Now I help others through their journey by volunteering at American Cancer Society Facilities such as Hope Lodge.

gigitoava4 | @gigitoava4 | Feb 7, 2021

In reply to @mmurray "Living proof here, too, after chemo treatments in 2007 and 2011. I was diagnosed with Stage..." + (show)

What a great story. Cheers!

miriam57 | @miriam57 | Feb 7, 2021

In reply to @loribmt "@miriam57 Hi Miriam, yes indeed, Chemo can get rid of the cancer! I’m living proof of..." + (show)

Hi Lori, this is my first time with Chemo. Last April I met with Mayo, had surgery on May 12, it was stage 1A. They recommended 3 vaginal brachytherapy ( radiation) to reduce a 25% chance of recurrence to a 5% chance. On Dec. 17, they did my first scan and it had returned in some pelvic lymph nodes and 3 masses attached to various areas. So after being in shock to starting Chemo on Jan. 11, I am learning a lot. Seeing posts about getting better is helpful. Thank you for the links.