Keeping our mental game strong during treatment

Tamlen
Tamlen Member Posts: 343 Member
edited February 2022 in Uterine/Endometrial Cancer #1

One challenge I faced during chemo was my head game, so I thought I'd start a thread on this to gather experience and wisdom from all of us who have been through it. Maybe future visitors will benefit.

By "head game," I mean the mental "game" that helps us navigate very difficult circumstances. I don't mean toxic positivity, but more the mental tricks and attitudes we believe help us when we needed it most.

I'll start:

I kept moving to remind my body I want to live. Soon after I joined the forum there was a post sharing what one woman's doctor had told her: Keep moving during treatment -- it tells your body you want to live. That really stuck with me. Chemo's worst effect for me was the severe damage it did to my hemoglobin, and, therefore, my ability to breathe. I was so anemic by the 5th cycle that I could barely walk across the room without gasping for breath. It took several minutes to climb the stairs at bedtime. I'd been a runner before chemo. I ended up needing multiple blood transfusions between and after the last two chemo cycles. But, remembering that post, I forced myself to move. I walked half a block and back each day. I hiked flat woodlands with my husband, even when I had to pause after every step. It was really hard, but it lifted my spirits to be out in nature. I was reminded of this when I read this recent study.

I visualized the tumors being destroyed. Early on in treatment I read a study where children with cancer were taught to play a game like Pac-man, then taught to visualize Pac-man chomping on their tumors. It had a positive impact. I wish I'd kept that study to refer to! After reading it, I'd lay in my chair when I was sick with chemo and picture little Pac-mans being released and chomping bit-size pieces out of my lung nodules. Once I was recovering from chemo and could really exercise again, I started visualizing a blue radioactive mist filling various areas (lungs, vaginal cuff, liver, etc) to kill off cancer cells while I was working out. When I was working really hard and out of breath during exercise, I'd visualize a terrible blue lightning storm with lightning strikes zapping the tumors in my lungs, turning them to toast or zapping off their blood supply. All the while, I'd think, "die, suckers, die!" I still do this today when rowing, now focusing on errant cancer cells circulating in my blood.

I made my peace with death. My sister and I had a terrible falling out over this -- "I don't want to hear anymore about death. You are not permitted to think about death! You can only think about life!" Talk about toxic positivity. My prognosis was not considered good, and it looked unlikely I'd make it several years, and I decided the only way to live joyfully was to just accept my potentially imminent death, get my affairs in order, and then enjoy whatever time I had left. It turned out to be very freeing for me and lightened my days substantially.

I played lots of word and number games and taught myself some basic website coding. About halfway through chemo I struggled with noticeable cognitive decline. I remember standing in my garden, trying to put together a garden border fence I use every year to keep the groundhogs out -- and I couldn't do it. My brain was like sludge, where before chemo I had a mind like a steel trap. My oncologist gave me some good advice: Put your brain to work, hard work. She said that being away from my job and being so sick from chemo were leaving my usually active brain pretty inactive. So my husband and I started playing board and card games that made me think and calculate and I started teaching myself new things. I really didn't believe my oncologist, thinking it was mostly chemo to blame, but she was right. It really made a huge difference in my cognitive function.

Ok, your turn! What did you do during treatment (any treatment -- chemo, immunotherapy, radiation, hormone therapy, etc) to help keep your head game strong?

Tamlen

Comments

  • Tamlen
    Tamlen Member Posts: 343 Member

    Whoops, here's a link to the study I referenced above. Whenever I try to edit a post I get an error code and it locks the post, so it's easier just to put it in a comment:

    Exercise program could improve cancer treatment

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member

    What an interesting topic, Tamlen. I found it so interesting that it was something you read shortly after joining that gave you help.

    I know I found this after all my treatment had ended and I had gone through it pretty much on my own. That is an interesting journey as you can imagine. I know I still struggled to find information on my cancer and others who had or were dealing with it this was such a happy landing. I did find that that there were posts I could not and chose not to read back then and the more I get in to survivorship I see differently.

    Fortunately I think since I found this so long ago I do think there is more out there as newer platforms continue to be developed.

    Thank you for bringing this topic to the top of a new thread. I agree moving is a good way for everyone to keep us healthier in body and mind.

  • CSNSupportTeam
    CSNSupportTeam admin Posts: 225

    Hi Tamlen,

    I am so sorry you are getting error messages when you try to edit posts. You should have one week to edit posts, but we are still working out some kinks on our end. Could you please message us the exact wording of the error message you received, or a screen shot?

    In the meantime, I would suggest you clear your cache. This has resolved the issue for some other CSN members.

    We apologize for the inconvenience and appreciate your assistance in this matter,

    Emily

    CSN Support Team

  • cmb
    cmb Member Posts: 1,001 Member

    I hesitated to respond to this thread since I didn't really do any of things that others have written about during my own treatment. I didn't make any improvements to my diet, nor did I use any dietary supplements or take anti-anxiety medication. I also didn't practice meditation, visual imagery or other stress-relieving techniques and I only read a couple of the self-help cancer books that friends gave me.

    I worked and exercised modestly during my "phase 1" chemo, but didn't do much of either during "phase 2" chemo when I was really fatigued and weak. My concentration was also very bad during "phase 2."

    Although I hoped that my treatment would buy me more time, I knew the odds weren't really in my favor. But I had put my financial affairs in order some years earlier, so I didn't have to worry about those matters.

    I'm usually pretty pragmatic, so I while was certainly very sad and prone to bouts of weepiness at times during this period, I didn't find that my mood was all that different the rest of the time. I will say that my usual snarky sense of humor definitely took on a "gallows" tinge at times, which probably made others uncomfortable. But they were good sports about it for the most part and my attitude worked for me.

    When I first started reading the board after my treatment was over, I felt a bit inadequate that I hadn't tried many of the things others did to improve their lives during treatment. And I still admire all those who have made life styles changes for the better. But in my case, even the prospect of imminent death didn't motivate me to make any substantive changes. I guess that makes me a cancer survivor slacker.

  • Ribbons
    Ribbons Member Posts: 154 Member

    Lol, cmb, I guess I would be a slacker too! I didn’t really do anything special, just had that 3 week chemo schedule stuck in my head, first week tired and sickish, second week better, third week almost normal just in time to do it again. I didn’t think much about the cancer except to believe it was all gone. Don’t know if that was mental strength or just denial.

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member

    Tamlen - the work to keep it together is important, and I remember reading about your pacman visualization! That was helpful for me.

    I tried saying to myself every morning as I put my feet on the floor, "Today is going to be a great day." I got that from a book about Small Habits (sorry, title escapes me, but you get the picture).

    I exercised as much as I possibly could, although I often didn't feel like moving. I was depressed, anxious, and a wreck, and told myself that those feelings were pretty normal. I researched feelings of others related to cancer, and discovered I was getting seriously short-changed in mental health help, so made efforts to talk with others about my feelings. I decided I didn't want to deal with counselors. The reflective listening, silent nodding, and etc. just annoyed me, so I worked on my own healthy habits: positive self-talk, writing, taking care of my body, reasoning with my very anxious and depressed self.

    My hobbies and interests: I exploited every interest I could barely muster interest in! I played piano and violin a lot. I played with my band as much as I could, and I performed when I was only six weeks off radiation. Two nights in a row, packing equipment in and out, setting up, sound checks, and full on performance. It kicked my ***, but I did it---not so much for me, but for my band mates. I tried to keep things normal. I grew fruit, and canned fruit. I canned hot pepper jelly. I went shopping at thrift stores. If I liked it before, I pulled it out of the closet and tried to like it again---even when I didn't much even like myself, my body, my new body with pain and swelling, and all that. I forced myself into the shower every day (missed a few).

    Family dynamics: I allowed myself to be angry at people who disappointed me, and although I couldn't forgive all of them for being distant when I needed to talk (they were afraid and incapable of supporting my feelings), I tried to understand what I interpret as gross inadequacy in empathy and love. Yep, gross inadequacy in empathy and love! If I were to grade some of my nearest and dearest, they'd get a full on F, perhaps a D. Ha! We must be able to smirk, if not laugh, about our beloveds' inabilities to just freaking listen, for God's sake.

    I tried to not be negative, speak lovingly, help, prepare meals, and be kind on the homefront, even when I felt horrible. That said, when I had radiation sickness, I stayed home alone with one foot on the floor and a glass of water nearby and didn't do a thing. If I felt "that bad," I honored it.

    Fruits and vegetables--these increased. That said, if I really wanted ice cream, I ate it.

    When my gyn oncologist disappointed me tremendously with his inappropriate exam and rude discussion, I left that clinic and got a whole new team. I honored my judgment and gut reaction.

    When I felt stressed or confused about my feelings, or my physical problems, I forgave myself for my imperfections and tried to keep moving forward. I very much adopted the "one day at a time" motto, and at times, went one hour at a time.

    After some time, I began to limit my "cancer research" hours, as I was basically devouring everything I could learn. As a teacher--and a very successful university student--I'm a researcher, and will not stop until I know my area of deep interest. I will figure it out, whatever "it" is. As with most great questions, sometimes with health issues, the quantity of variables make absolute knowledge and understanding unattainable. I got close, though! I got the answers I needed to understand my personal situation. I had to let go, however. Let go and just breathe, sip water, sleep, work, play music, and let the doctors do some of the worrying. Seriously.

    Thanks for allowing me to share some of my strategies.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    Hey, Ladies!

    Good idea, Tamlen!

    I’ve waited a few days to reply cuz I wasn’t sure I had a “mental game,” and I’ve decided I really didn’t! I’m like cmb & Ribbons…so somewhat a survivor slacker! 😁

    Mostly what I remember was that I was angry. NOT angry that I had cancer, but it started with me being angry with the GYN’s bad job AND the repeated lying afterwards! Then I was angry after 2nd surgery (thanks to the GYN!) because I came home with a catheter & bag I had to lug around for a week! And I was a little angry those many times when I was up with violent vomiting in the middle of the night! Not angry because I was vomiting, but because the acid made it so painful!

    Other than that, I remember lots of sadness. Again, not sad because I had cancer, but how it was ruining my body. Sad because I was so weak that I felt like it was dangerous to be in the shower alone. Sad that I felt basically worthless around here. My husband was totally wonderful with every single thing, so it was just my own feelings.

    So, to cope, I did do like Tamlen and tried to keep moving! If all I did was walk 30 yds down the street and come right back, at least I was trying. On days when I could do more, I did!

    And I watched a lot of old movies! I checked the “guide” every few days and recorded them on the DVR. I watched many I’d never seen and many that I know the dialogue by heart! It really is the great mental escape for me! I’ve always been a voracious reader, but reading was tough because it required concentration skills I was too tired to muster.

    As horrible as COVID has been, I will say, that at least I didn’t feel like I was missing out on anything! I said many times, Well…if you’re gonna be this sick…and you can’t go anywhere anyway, this is a good time to be sick.

    All in all, and y’all have read this from me before, I wanted to get back to being ME! That was the prize I kept my eye on! And I did it! If I envisioned myself in any way along the ride, it was as a bull charging forward!

    😘, Alicia

  • Lyn70
    Lyn70 Member Posts: 214 Member

    Tamlen,

    Love reading your 'head games' and I will reread them and the responses of others. I still need them, post chemo,post radiation, pre scan and in the dessert of no active treatment.

    I did some visualization myself. I read about killer t cells and helper t cells. Killer t cells kill cancer directly and helper t cells orchestrate and organize the attack. I felt well enough to walk about 3/4 to 1 mile during chemo. I would visualize my t cells attacking cancer cells with an audible "Charge" voiced from the helpers. Then "go t cells go" within my brain. I still walk and cheer on the t's!

    I will share a story. One day while walking and crying feeling very very sorry for myself, I decided to take a shortcut across the grass rather than stay on the path. Big mistake! The ground was so wet at one point near a slight run off creek bed, both my feet sunk down into gunk up to my knees. I stood there thinking now what? I looked around, no one! I wondered if I could pull out, would my shoes be left behind? I laughed. Golly! You are on your own, kid. I leaned over, grabbed the gunk on the ground curled my toes inside my shoes and crawled up the bank. Whew! I really felt that God showed me what a real pit was and I crawled out.

    I love tv, always have. I had a hard time reading during chemo, too. I read and reread, retaining nothing so I borrowed Northern Exposure from the library. I watched all 6 seasons. I felt like the character Fleishman and myself shared a 'fish out of water' vibe along with the challenge of isolation. The love exhibited between these characters and their various philosophy on life uplifted me everyday.

    I still prefer kinder/gentler fare and am currently viewing That Girl. I think Marlo Thomas is a lovely person and her connection to St. Jude is wonderful. I love the retro fashion, too. I fall asleep to Ann Marie's escapades every night.

  • Tamlen
    Tamlen Member Posts: 343 Member

    I love that goal you had of getting back to being YOU. I'd forgotten about thinking about this as well -- not about getting my life "back" per se, but just wanting to feel grounded in being me again.

  • Tamlen
    Tamlen Member Posts: 343 Member

    Your story about the muddy pit made me laugh right out loud. Talk about the universe sending a message! I also love that you re-watched all of Northern Exposure -- we enjoyed that show so much when it was on. Bingewatching shows was definitely a help to me when I felt sickest during chemo.

  • Tamlen
    Tamlen Member Posts: 343 Member

    What a great list of coping/responding strategies! I love that your gardened and canned -- I did the same, as I do every year. I almost abandoned the canning the August when I was finishing chemo because I was so sick, but I decided it was good for me to can food as it was a commitment to the future -- eating all that good salsa and pepper jelly throughout the next winter.

  • Tamlen
    Tamlen Member Posts: 343 Member

    Yeah, good point about choosing to read or not read certain kinds of posts at certain times. Seasons for reading some things, other seasons for reading others, right?

  • Tamlen
    Tamlen Member Posts: 343 Member

    Ha - "cancer survivor slacker." That made me smile. I was kind of one too, in that regard. I didn't make sweeping changes in my diet or lifestyle. Actually, didn't change my outlook much either -- I'm generally an optimist with a healthy dose of skepticism and a dash of fatalist tossed in. My gallows humor self kicked in too; at first my husband winced, but eventually even he started with it. We had some good laughs.

    Your gallows humor comment reminded me of this email I received the day immediately after receiving my cancer diagnosis. I kept the screenshot of it because it made me laugh so hard that my husband came running into the room thinking I was choking!


  • Lyn70
    Lyn70 Member Posts: 214 Member

    Cmb, Tamlen and all Lovely Ladies,

    The email 'Ready to say your goodbyes' cracked me up! Talk about timing!

    I can relate to your gallows humor. Sometimes life just forces us to emote humor with skepticism and sarcasm. The Dark Force. I confess, it frees my fears better than pity.

    I take quite a few supplements and food additives. A couple of friends were curious about my tumeric usage so I was telling them how I add it to casseroles and such. They asked if I felt it was beneficial. Then I added, "Oh, yes! Look at me, I have had two separate cancers dx's in 8 years" I am not certain I gained any tumeric converts.

  • Lyn70
    Lyn70 Member Posts: 214 Member

    Harmony,

    I just wanted to reinforce your feeling of disappointment over the lack of empathy and support from SOME family members and friends. I found there can be a shelf life to that support. I am 6 months post chemo/post radiation...the cards stopped coming along with the checkup calls about the time my hair came back in. I am pretty much considered back to normal by my family.

    That is why I am on this site, too. I want to speak to and support ladies who experienced the initial shock, treatment side effects, weepy days, recurrent fears and sadness. It is here and thru a fellow surviving mentor, that I get my HOPE. I am so grateful for the site.