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Tips for fighting the dark clouds

KiwiCatMom
KiwiCatMom Member Posts: 2,337

I've started this thread at the urging of fellow Stage IV sisters. I've been fortunate enough to get a lot of really good advice from friends, healers, therapists, etc., on how to fight the dark clouds that come with Stage IV. Not everything will work for everyone and not everything will work all the time. But hopefully some of these will resonate and be helpful. I'll post some of the ones that have worked for me and hope that others will share theirs as well!

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Comments

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Here are a few things that have helped me. Note that I am currently stable, have not had chemo, and thus far have had a fairly easy ride, at least physically. So some of these may not resonate for those of you who are having nasty physical symptoms.

    • Ask yourself: Am I ok right now? Chances are that you are ok right now. You might be in pain, you might feel sick, but you're alive. And if you're alive, you're ok. The main thing with this tip (and most of the others) is that it helps break the cycle and make you stop and change your thinking.
    • Change "but" to "and". I love to do photography but I have cancer. Versus I love to do photography and I have cancer. In the "and" sentence, the two can coexist and are not mutually exclusive. So change your buts to ands.
    • Practice mindfulness. Take joy from the moment. I'm not as good at this as I'd like to be, but I'm getting better at it and it does help.
    • Ask yourself: why would I let something that I don't like rule my life? This is more appropriate for those of us who are NED or newly diagnosed - why let cancer dictate how you live? It's part of who you are, not all of who you are. Why give it any more power than you have to?
    • You know that you have a serious disease. One that may take your life. Or not. I know of people who were in hospice waiting to die and were offered an experimental treatment. One of them was "dying" of cancer in the late 1970s. He's still alive today - the treatment they tried actually has put him into lifelong remission. He's in his 80s now and still living a great life - still golfing and having fun. So it can happen. At the end of the day, all we can hang onto is hope.

    Will share more later and hope others will join in!

    Hugs to all,

    Terre

  • divinemrsm
    divinemrsm Member Posts: 5,975

    Kiwi, your tips are excellent suggestions.

    There's much to be said formeditation, exercise and stress relief. I do those things. Initially, tho, it was necessary for me to find the right medicine to help me cope, and that came in the form of anti-anxiety Meds. Other women find antidepressants to be helpful. Some will get these thru their onc or primary doctor while others see a psychiatrist.

    I was one of those women who'd never taken anything stronger than Tylenol. I had to push past the pride of "I'll handle this on my own" and make the choice to ask for medicine to help me. When I found something that worked, I felt like I got my life back. "Better living through chemistry."

  • sueopp
    sueopp Member Posts: 238

    Divine: I can really identify with your comment about trying to handle things on your own. Me too -matter of pride. But didn't always work out and part of this process for me has been to learn to accept and even reach out for help when I need it.

    Terre, what wonderful thoughts on chasing the dark clouds away. I'll keep this thread on hand to re-read when the gloom starts blowing in. Thanks. SUE

  • teacher911
    teacher911 Member Posts: 152

    Terre, wonderful tips and certainly good things to think about. Thanks for posting.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,692

    Terre,

    Thank you! Whether we live for a year or ten years after a stage IV dx, finding a way to live in the light is a victory over bc. I too am on board with better living through chemistry and happily swallow my Effexor each night. No shame in that 😉.

    I have no great tips or strategies but I try to be active, whether physically or mentally, so that bc is not dominating my mind. Learning new things, reading and watching documentaries on everything from black metal, punk rock, the Norman conquest and cheese making are my weapons against bc. Yes, I have also learned a lot about my disease, but occupying mind and body with new knowledge and skills is far more satisfying (first attempt at cheese making was not so great, but still tasty!).

    Mostly, I just think, " Am I dying? Yes, but not today." Since I have little control over what bc may do to my body, my weapons of choice are my heart, mind and attitude. My weapons may not vanquish bc in the end, but they will make my life easier in the meantime. I won't put my foot in the grave before I have to!

    It has been over 4 years since my dx and I feel strong, like a conqueror, because no matter what the future holds, I know I have not given my soul over to bc. If it kills me tomorrow, I am still a victor.

    ** tiny footnote- I have been called a Pollyanna, unrealistic, in denial etc. No matter, I have lived life with bc the best I know how and I am happy. Nothing wrong with that.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107

    Terre, thanks so much for starting this thread! I am very new to my stage 4 diagnosis after being what I thought was cancer free for 7 years. Any tips on how to deal with the initial shock? I do tell myself that for today I am ok, able to do everything I always did and relatively pain controlled. It does help that my onc is very positive that this can be controlled for quite a while. It just hits me at different times...we went to the beach as we do every year, and I stood in the ocean and sobbed like a baby. I was remembering last year when I stood there as a healthy person, or so I thought, and wondering if I would stand there next year. I love readings hen positive stories and tips a that help make this a little easier . I like knowing that I am not alone in this. You ladies get it like no one else does.

  • Fitztwins
    Fitztwins Member Posts: 144

    My strategies:

    • Get on some good antidepressants/anxiety drugs...can't go it alone
    • sleeping pills or something to shut off the mind at night
    • Getting my affairs in order now, when I feel good, so that I don't need to think about it again.
    • read about death and dying, fear of the unknown is worse for me, for some reason this helps me a lot
    • know that today is not my day to die
    • Just live each day with peace in my heart knowing IT is What IT is and NO amount of worry will change anything.
    • Fill time up with things I love to do
      • going to concerts
      • go on vacation (something to look forward to)
      • spending time with friends who make me laugh
      • just hanging out with my family
      • a good glass a wine
      • reading
      • movies
      • enjoying every sandwich
  • 3-16-2011
    3-16-2011 Member Posts: 279

    Terre

    Thanks so much for starting this thread. I believe we are the best suport and wisdom for each other. I love your suggestion to use and instead of. but. I use this idea to work on accepting my saddness and grief so I can let go and move forward.

    It has been hard for me to plan at times. One victory I had was to plant my garden this year. I included a picture of my crazy pumpkins. I will have to get out. there and trim some vines. Gardening is hope for me. I encourage everyone to hang. on tlo the things they love.

    One other recomendation: I joined the live strong program at my Ymca. It is helping me in ways I never imagined. It has. become a fabulous place for support for me with other cancer patients.

    Enjoy Sunday. Everyone

    image

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,692

    "Just live each day with peace in my heart knowing IT is What IT is and NO amount of worry will change anything." -Fitztwins


    The is the essential truth of living with stage IV. Worrying about things that haven't happened yet only robs you of today. Make that your mantra!
  • bestbird
    bestbird Member Posts: 232

    This thread is fabulous, and the tips are very helpful! I think it's perfectly normal to let our feeling ebb and flow. If we tried to be upbeat all the time, we'd probably all end up in 3-16-2011's Pumpkin Patch!

    That said, I know this may sound strange, but trying to help others with this disease helps me feel better.

    I've also found that Acupuncture, walking, and watching comedies all help to lift my mood.

    Keep those suggestions coming!

  • Teakie88
    Teakie88 Member Posts: 97

    I find that the very best therapy for me includes the following:

    Walking--I walk three times a day (2 miles each time) and with those walks, on the days that are more "dark", I am able to dissect and "sort through" my feelings about things in general. I have found that it has helped me so much that when I walk I can go for blocks and blocks and not remember how I got from Point A to Point B. It is very therapeutic for me because it is quiet time where I'm not distracted by too much of anything, and it just allows me to think about me and whatever that entails that day, good or bad.

    Hope--I consider myself a "hopeless hopeful"--one who believes that maybe the cure won't be found tomorrow but maybe enough science is now out there that we may live for so many more years than ever before--maybe even our lifetime. As they say, "hope springs eternal", and although I am a realist about serious this disease is, I believe that hope is a tremendously powerful ally when things look bad. If you don't have hope, what else is left?

    When first diagnosed with Stage IV, it took me months to quit thinking about it every second of every day. There was no room for anything else in my life. Now, instead of dwelling on it all the time, I keep busy with a million projects I have inside and outside my house. I am an Ebay seller so I love to go to auctions, thrift shops, and pickers I have, etc. to find items to list. It's what drives me some days, and I love doing it. Anything you love doing is a plus for sure. I find when I'm busy or enjoying myself with family or friends, cancer is out of the picture. It promotes a good mental attitude.

    Diet and exercise--on those days when I wonder what my cancer might be up to down the road, I tell myself that with my oncologist and myself working together as a team, we are doing everything possible for me to have the best quality of life and longest period of life as possible. She takes care of the medical end of it, and I do my part by exercising daily, using visualization skills, and developing a diet that promotes the best possible health outcomes for me.

    Here's hoping that there are no dark clouds for any of you today, only warm sunshine and peace. Best to you all. Ann

  • Tomboy
    Tomboy Member Posts: 2,700

    Terre, thank you! Many of these things are helpful for me, too. Wishing all of you the very best.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    KiwiCatMom, this is a topic I was considering starting, so thank you. I feel like I'm in the middle of figuring out a mindset that is neither despair nor denial. Two helpful items I can contribute so far:

    My therapist says that I am grieving, and that people get through grief and then feel better. It's not permanent.

    And to help stop the fearful thoughts about the future from wrecking the present: "That day may come, but it's not today."

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Awww...so heartwarming to see that this thread is welcome. I didn't want to appear like I thought I have all the answers, because I certainly don't. Fitztwins - great sentiment - it is what it is. When I first went to see a counselor after dx, my husband tagged along. She asked him: how do you feel about this? And he said "shit happens and being unhappy about it won't change things."

    Sorry..got interrupted half way through this post. Anyway, while "shit happens" may sound cold hearted, it's true - it happens and there's not a lot you can do about it.

    I just finished reading The Power of Meow (by the Dahli Lama's cat). Quite a fun read, and the whole gist of things is that happiness comes from doing for others and focusing on making other people's lives better. When we do this, we feel good about ourselves. So the less "I" focused we are, the happier we'll be. Easier said than done, but I know from working with charitable organisations in the US and to an extent here, it does help! And well said, Bestbird!

    Will do some more writing later...back to work!

    Terre

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,692
    Wonderful topic, indeed! To expand on bestbird's suggestion, I thinking helping others in any way you can is really useful for getting away from yourself (in a good way).
    Caryn
  • annieoakley
    annieoakley Member Posts: 653

    Terre, thanks for starting this thread, so much good information and ideas being posted here. So much of what has been written here are things I've already been doing, I still have the occasional dark day but for now they are few and far between and I hope to keep it that way. Any distraction from my cancer works well for me. A day out shopping with my girls, lunch with friends, projects around my home. I try very hard to plan something fun everyday, and if my energy is low that day, I just re-adjust my plans to suit how I'm feeling. And what Caryn said about helping others is something I always do, I have a neighbor who is away for 2 weeks so I am taking care of her flowers and getting her mail. That kind of thing makes me feel really good. I especially love Fitztwins enjoying every sandwich!

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Just scanning back through the beautiful posts. Shetland - love the "And to help stop the fearful thoughts about the future from wrecking the present: That day may come, but it's not today." Beautiful.

    Teakie, Mrs. M, 3-16 - great posts! I learned from you. Love the concept of planting the garden as a sign of hope. I bought bulbs at the start of winter - I'll be here for them in the spring. Your pumpkins look amazing. And yes..I take Prozac. Keeps things more level for me. Teakie - staying busy, exercise, etc., is definitely helpful, as is having a good medical team behind you.

    Lynnwood - I don't have a magic bullet, but it does get easier with time. The things I posted above helped me get through the day by day. And as Teakie said - it's all consuming at first. A lot to come to terms with. I have mostly good days now, but something will happen that triggers crying. Hearing certain songs on the radio makes me cry.

    Caryn, thank you for my new mantra: The is the essential truth of living with stage IV. Worrying about things that haven't happened yet only robs you of today.

    Tomboy, Teacher, Sueopp - hope some of the ideas here help. Lots of great ideas and knowledge being shared, which is so cool!

    Another one of my visualisation things: When I get really down, I imagine the dark cloud sitting on top of my head. Then I remember that I'm a giraffe and I can extend my neck..and there's sun up there. Silly visualisation, I know, but a) it distracts me from dark thoughts, b) it kind of makes me feel empowered, and c) it reminds me to take a step back and get some perspective.

    I try to find something to smile about every day. Some days it's harder than others, but I go to the warm fuzzy owls, etc. page and there's always something there to smile about. Or I go to the www.damnyouautocorrect.com page which makes me laugh until I cry. Note that my really crap times over the past year have been more about my job than my cancer. So I guess that's good news.

    Sending hugs to all, and so happy you've joined this thread!

    Terre

  • jobur
    jobur Member Posts: 493

    Terre, Thank you for starting this thread! I'm feeling good lately, but I know it will be helpful to read over again in the future when dark clouds return.

    When I get really down, I force myself to do something, anything. Start a small project around the house, go for a walk, clean something, whatever. Just to get my thoughts off of me me me. In my darkest days after dx, doing little things for my MIL was one of the things that helped me. And it always makes me feel better to get outside. (Not so easy during Wisconsin winters though.) Little getaways even if only for a few days have really helped to lift my spirits as well.

    Lynwood, I'm sorry I don't have any magic to help you through the shock and pain of your stage 4 dx, but I so relate to your feelings. I think I spent the first 4 months crying almost every day. One day as I started sobbing for the umpteenth time (while cleaning the bathroom of all things!) I realized I was going through the same emotions that I felt when losing my very DSIL to cancer. But this time I was grieving for me, for the life I had lost. I'm afraid this is something we all have to go through, but as ShetlandP's therapist said, it is not forever and you will feel better. I hope it will be soon. Life will never be the same, but it can still be good.


  • GG27
    GG27 Member Posts: 1,308

    Thanks Terre for starting this thread. I was able to get over the shock & dismay of the return of my BC fairly quickly, due in no small part to my husband who, is the strong silent type & just knows when to be there for me & when to just go out to his shop & leave me to contemplate life.

    I'm a bit of a polly anna I'm afraid. When I'm feeling good, I just putter along as if nothing has changed, when my bones ache, I talk to my Dr's about it & am getting rads to "hopefully" blast those d*mn tumors to death. Or I take drugs!! :) I was never one to take anything, not really even aspirin.

    DH & I plan more trips & see more concerts, we bought a sports car, we eat out more, sit in the garden & enjoy our life more, spend our retirement $, because we know that there will come a time when I won't be able to or won't feel up to this life we're living now.

    I spend a lot of time in the garden & working on the house. While a lot of people might think this is work, for me, it is very therapeutic. I think that getting my hands in the dirt gives me a connection to the earth (wow, did I just really say something that hokey? )

    My friend Susan who is dying of colon cancer has regrets about not retiring when she could have 5 years ago. She just retired in June, now she can't travel, she doesn't even feel like leaving the house much, getting out in her garden which she loved. I don't want to have these regrets.

    I hope everyone has a lovely day, I'm going out in the garden to celebrate BC Day (British Columbia, not breast cancer)

    Cheers, Dee

  • Missy328
    Missy328 Member Posts: 9

    I just want to thank you ladies for this thread. It came on a day I really needed it! I was diagnosed "off the bat" with Stage IV in December 2014 after 9 years cancer free but I had so much hope. I was HER2 positive at the time but am now triple negative. I feel like I've lost most of that hope now. I have inflammatory on top of this so physically seeing the cancer spread before my very eyes doesn't help! I had to stop Taxol due to high liver enzymes and then stop Cisplatin due to no response (along with stopping Herceptin and Perjeta for obvious reasons. I am trying to stay positive but am finding it very hard. I will definitely try the above suggestions and check in on this thread more for inspiration. Thank you again

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Jobur, Dee, and Missy - welcome to the thread and thanks for posting!

    When I was 30, I went through a horrific divorce (I'll spare the details). I wanted a child, was living in my dream home with a man I loved, had a great job, etc. And it all evaporated in a flash. I ended up in Counselling (smartest thing I've ever done). My counselor talked about "grieving the loss of expectations". Acknowledging that your future is not what you thought it would be, and giving it the honour of a grieving process. That's helped me with cancer too. We have this vision/idea of what our lives will look like - our expectations. And then one day, they're stripped away. Our hopes, dreams, are suddenly taken away with a Stage IV diagnosis. Or at least it sure feels that way. I spent the first few months crying spontaneously, grieving, and just freaked out. And grieving the loss of expectations. Then it finally dawned on me that I need to create a new set of expectations and vision of my life. One that includes doing things I want to do, not putting things off, and being as happy as possible. Also, I refuse to call the things I want to do a "bucket list". I call it my "to do" list. Much more positive for me. :)

    Dee - my heart so goes out to you and I'm so happy you're strong enough to be there for your friend Susan. Reminds me of something my mom said when she was dying. She said "I don't regret anything I've done, only things I haven't done." Glad you can get out and garden. I enjoy it too. What kind of sports car? :)

    Jobur - I grew up with South Dakota winters, so I empathise with Wisconsin winters. Burrr! Gives "make hay while the sun shines" true meaning. Love the idea of quick getaways. They do help - just a change of scenery.

    Missy - glad you found the thread and hope it helps. Can't imagine how terrifying it must be for you. Sending you hugs.

    Best get to work...

    Terre




  • Xavo
    Xavo Member Posts: 244

    Terre, love this thread and marked it as my favorite in order to visit it often. Although it's been almost 6 months since my stage IV diagnosis, I still often felt very sad. Reading you ladies' wise and courageous words warmed my heart. Missy, my heart goes out for you.

  • Freygea
    Freygea Member Posts: 217

    Thank you for starting this thread. I have it now as a favorite.

  • LindaE54
    LindaE54 Member Posts: 1,379

    Terre - Thank you for starting this thread. You as well as all others who responded have very good tips. My Yoga teacher who is also very spiritual talked about the four "As" in French all the time in every aspect of our lives: acceuillir, accepter, adapter et ajuster. A very rough translation is: welcome, accept, adapt and adjust. Since my dx, I had to stop some activities, mainly physical, and have replaced with new areas of interest of activities. This sort of mantra for me goes beyond cancer. It brings me back to the present and tells me when I have no control and don't want the situation to control me. I also believe in living better through chemistry. Compassion towards ourselves and others is important. Help others and also learn to accept help. Will keep this in my favorites and come back here as much as I need.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Welcome Xavo and Freygea! And thanks for the great advice, Linda!

    Definitely another mantra for me. :)

  • Rseman
    Rseman Member Posts: 69

    Terre, this thread is great. Do you really like photography? I am diving into a project to avoid the dark clouds. I am def going to check out the Power of the Meow. It sounds like something I would really enjoy. That is after my indulgence with the Twilight Series. Please don't judge!!

    Fitztwins, could you recommend some reads? I feel like a lot of my anxiety comes from the unknown and maybe if I just educated myself I would feel a lot better.

    I love all the suggestions here. Running has been a great escape for me but not a perfect remedy for dark clouds. Today has been a particularly bad day and as I was sulking and even worse, someone asked me how my weekend was and it was great. So I tried to just focus on the stuff I had done over the weekend to get through the day. And took some xanax :)

    Go away clouds!

    Renee

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Welcome Bon!

    Renee - I would never judge what anyone reads - I was raised by librarians. :) I have a one hour commute on the train each way to work, and I am prone to murder mysteries. Absolute escapist stuff. There's another one that probably should be read before The Power of Meow, but it's optional (I read Power of Meow first) The Dalai Lama's cat. I got a lot more out of the The Power of Meow, however. Last winter, we got a fantastic room at my favourite hotel in New Zealand. It had a huge jacuzzi tub. My husband went and met with his buddies and I stayed behind in the tub with a glass of wine. Every time I get super stressed, I think back about how I felt in that tub and it helps. And I love photography. My husband has a degree in technical photography and is really good. I'm more of a happy snapper, but 3 of my photos were selected to go up in our new office at work, and they are spectacular, if I may say so myself. Quite proud. :) If you're interested, I'll message you my flickr link. It's mostly stuff I share with friends, but there are a few good ones there.

    Pouring rain and flooding here ... again. So I definitely need to drive clouds away! I'm totally over winter!

    Hugs to all,

    Terre



  • debiann
    debiann Member Posts: 447

    Kiwi, your thread is success! So nice that people have a warm, friendly place to support and inspire each other.

  • GG27
    GG27 Member Posts: 1,308

    Missy, I hope this thread helps, even just a little bit. Sometimes for me, just knowing that someone "gets it" will help me a lot.

    Linda, Love your motto! In french or english, it's all good! Hope you're doing well.

    Renee, hope you are feeling better now.

    image

    Terre, We bought a Honda s2000 that we named Clyde! LOL! DH always wanted one but we couldn't afford them until they were 15 years old. We love it, take it out or rather Clyde takes us out whenever we can & he is guaranteed to drive away any black clouds!

    Xavo, it took me almost a year before I was feeling better. The first year I would say, is spent getting used to the new normal. For myself, I kept wondering when I was going to be dying, now I try not to focus on it at all & just live every day & not waste opportunities to get out with friends, volunteer at our local shop or things as simple as watching some birds in the garden. Easier said than done sometimes.

    I'm trying to get packed to head down to Victoria for radiation on my spine, rib & sacrum on Wednesday. Oh fun stuff!! :) Cheers all! Dee

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Thanks Debiann. I wouldn't have done it without prodding from others, so the credit doesn't go to me. But glad you and others are enjoying it.

    Dee - I LOVE Clyde! Awesomeness! Are you taking Clyde to Victoria? It might make the trip more enjoyable. Sending good thoughts your way for your radiation. Hoping it helps.

    Hugs to all,

    Terre