• For Stage IV patients only, please: How do you find purpose or meaning in your life knowing that you have a terminal disease?

    Asked by EmpathAgain on Thursday, August 30, 2018

    For Stage IV patients only, please: How do you find purpose or meaning in your life knowing that you have a terminal disease?

    Just having an existential crisis over here. Wondering how other metastatic patients cope, grow, and are able to keep getting up each morning and live their life, knowing that they are dying?

    38 Answers from the Community

    38 answers
    • Julia468's Avatar
      Julia468

      Hi, I'm so sorry you are going through this right now. i have never asked what stage I am specifically. My first chemo treatments helped in one area, but my cancer spread while I treatment to three bones and a pelvic lyphnode. I'm currently waiting to see if I'm eligible for a clinical trial. I get up to fight to get as many days that I can feel like myself as possible. I get up each day to be as mindfully present as I can. To sip coffee on The front porch and watch the birds, smell pine trees, watch a thunder storm. I want to see mountains and walk on the beach. Talk to my friends. I get up for the small stuff. I don't know how you feel overall, but you could volunteer somewhere. As corny as it sounds, I like to find three things about my day that were good or that I am thankful for.

      over 1 year ago
    • GregPWN's Avatar
      GregPWN

      I was stage IIIA, but I understand what you're feeling. I thought it was all over. I was told my survival rate was less than 50% and most of the statistics didn't look good. I was ticked off and was starting to plan my funeral and final arrangements. Luckily it didn't turn out that way.

      We have several people here that were told the same thing. @LiveWithCancer @JaneA @BuckeyeShelby @BoiseB are just a few that pop to mind. As soon as some of them see this they will have some experiences for you. All of us on the Team and WhatNext are wishing you the best.

      over 1 year ago
    • LiveWithCancer's Avatar
      LiveWithCancer (Best Answer!)

      Absolutely. Stage IV cancer made me appreciate life more but it surely has NOT made me quit living life.

      In the last few months, I've embarked on an entirely new field of interest - I can't believe I got interested in them, but I really got interested in essential oils. I'm now in the process of becoming a Certified Aromatherapist (with certifications from two different schools because I couldn't decide which one I liked the best and they're quite different from one another. I'm hoping I might be able to work with hospice patients ... or something ... I'm actually not 100% certain what I'll do with the knowledge or the certification. BUT, here I am, a 6 year, stage IV lung cancer survivor who was supposed to live 4 months ... embarking on life in a whole new direction... Living life to the fullest.

      Because I have been so interested in the essential oils and studying is all online, I started worrying that I wasn't getting out of the house enough. So, I signed up to go to several events during the course of the month that were sponsored by Cancer Support Communities. I went more to get out of the house than because I was incredibly interested in them.

      I'm getting ready to book a trip to Israel with another stage IV lung cancer survivor. We're both still in active treatment (well, she has an active tumor; she is in hiatus as far as treatment goes). I think there might be a book in there somewhere ... I plan to take a lot of pictures to document and then see if a book idea ensues when we get back home.

      I ran my dogs in agility from diagnosis through last year. I went all over the country with friends and their dogs to participate in trials. I had radiation last year which zapped my energy ... plus my dog is getting older ... so I haven't done my favorite sport in a year ... I'm not sure if I am prepared to take on a new puppy ... or if my energy levels have really gotten good enough to run. So, I've filled my time/life with other things...

      And, all of this at age (nearly) 65 ... You have cancer, but you are still alive and you are young and there's a lot of living left to do, my friend!!! You are brilliant and have a lot to offer. Don't let cancer deter you.

      over 1 year ago
    • Sunshine61's Avatar
      Sunshine61

      My wife has had stage4 bone cancer that was metastatic from breast cancer she got at 39, she is now 53 and has had stage 4 for 4 years. We try to look past that and try to make the most memories together we can when she fills like it, We took hot air balloon ride couple of years ago. No one is guaranteed tomorrow so we need to live one day at a time and try to find something that can give you joy. It could be reading a book taking dogs for walk going to movies or out to eat, or watching TV.

      over 1 year ago
    • Songwriter's Avatar
      Songwriter

      It is what it is....The only gift that my disgusting cancer gave to me is to realize that all we or anybody else has is Right Here Now. Today is the first day of the rest of our lives so we need to do is LIVE IT. Our future is right now.

      over 1 year ago
    • TheProf's Avatar
      TheProf

      We all have a terminal disease...it's called "life" There is nothing like a cancer diagnosis to spur one to be thankful for the sweet times with family and friends. We all will die, no one is sure of when, so then prepare now and then life fully, trusting in the Goodness of God, appreciating those around us and being thankful. Concentrate on these things. (I'm writing this in the middle of the night... too much pain to sleep and I have no more pain pills and can't afford more. I'm in the coverage gap... but that doesn't mean I have to be in the "thankfulness gap."

      over 1 year ago
    • merpreb's Avatar
      merpreb

      Do we really have to have a purpose to live life fully? Who said that we had to have a purpose? If you want to use the word purpose ( and I do understand how you feel) than what about to just enjoy multi-nodal adenocarcinoma of the lungs which means that my lungs love to grow lesions and some of them turn into cancers. I've had 6 of these things over a space of 21 years this October. I've had two lobectomies, chemo and two different types of sbrt treatments. I have lesions in my lower left lobe that are being watched. One is new. Unless you want to totally give up and die- and I don't think that you sounded as if you did you go on, it just happens because there really is just one other choice. Hang in there please- walk in the woods, along the ocean, hug someone and have them give you a hug. And you just never know what is around the corner!

      over 1 year ago
    • JaneA's Avatar
      JaneA

      I am a Stage IV rectal cancer survivor - 4 years since diagnosis and NED. Despite the odds, there are survivors. Perhaps everyone should live like they were Stage IV. I am happier and my life is richer because I'm finally fulfilling some of my hopes and dreams.

      I try to find beauty every day and record it through photography. I reach out to try to help those newly diagnosed with cancer. I participate in a cancer wellness class where we support each other whether they are NED or in active treatment.

      Life is a terminal condition. I'm am retired so it's inevitable that I will die - will it be from rectal cancer or something else? I don't know and I really don't care anymore.

      Life is a precious life to be embraced daily through experiences and helping others.

      over 1 year ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I was diagnosed with stage IV endometrial cancer in Aug 2012. I was dumb enough to look at the stats at that time. Gee, I had a 15% chance of lasting for 5 years. At the time, I freaked out. I drove through the campus of the local hospice affiliated with my hospital of choice -- that is where I'll die soon. Should I renew my magazine subscriptions? Who will take care of my cat? My mom will be devastated... Then my oncology team and I came up with a game plan. As soon as I knew what we were going to do, I was fine. And I've officially bypassed that expiration date. And I DID renew the subscription to my magazines. And the only reason I went back to that hospice was their team took care of my mom when it was her time, and I utilized their bereavement services. And both those cats also died, but I do have another one, and I told one of my friends that if anything happened to me, she was HIS problem...

      I was able to work through treatment and am still employed. I keep moving to keep me and the cat fed. And this is the best place. Yeah, I don't agree w/everyone all the time. And some people annoy me, but I ignore them -- I don't read their posts. But most people are wonderful. And I love paying it forward. Those are the kinds of things that get me through. I hope things turn out not to be as scary as you fear.

      over 1 year ago
    • BoiseB's Avatar
      BoiseB

      Stage IV is a life sentence not a death sentence. I am 76 years old and am an 8 1/2 year survivor of Stage IV esophageal cancer. I am also a 5 year survivor of an agressive uterine sarcoma. Since diagnosis I have changed my lifestyle. The odds of surviving esophageal cancer any stage are 20% the odds of surviving stage IV are 4% I made it a game to beat those odds.

      over 1 year ago
    • KB2013's Avatar
      KB2013

      Stage IV means it currently means it can not be cured.
      Terminal means you have been told you have two weeks or less to live.

      over 1 year ago
    • gpgirl70's Avatar
      gpgirl70

      I'm only stage IIIc but have some experience with stage IV cancer. My mother has been stage IV for 11 years. She had been dealing with back/hip pain for over a year before finally getting the stage IV diagnosis. At that point she couldn't walk. She did radiation and has taken a variety of aromatase inhibitors and now oral chemo that has kept her cancer at bay.

      Three years ago, I got my cancer diagnosis and my sister has just had her third recurrence of lymphoma. Both my sister and mother, make plans and look forward to these future plans. It is very hard to have a positive attitude when faced with all this cancer in our family but what's the alternative. Since my mom's stage IV diagnosis, she's traveled across the US twice, gone to Europe for 6 weeks, and now is planning a trip to New England and Nova Scotia. In addition, she looks forward to family events like graduations, weddings, etc. She also has a lot of hobbies that are important to her and get her out socializing. She belongs to a quilting group and a rug hooking group.

      I agree with KB2013 don't think of it as terminal but as something that currently can not be cured.

      over 1 year ago
    • BoiseB's Avatar
      BoiseB

      I am planning my 100 birthday April 26, 2042. Everyone is invited

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      People can make a difference in the world from wherever they are, touching other people's lives in a positive way. I recommend you focus on helping other people rather than yourself. If you have trouble doing that, go to a counselor.

      I read your Wall and saw that you had lost hope and that you have a Ph.D. in Experimental Psychology. You know from your schooling that when someone loses hope, they should tell their Primary Care doctor and discuss treatment for depression. Best outcomes are achieved with a combination of medicine and therapy.

      Count your blessings. Be thankful you haven't died yet. Learn to be more flexible with your goals. Social Security allows someone on disability to work part-time without a reduction in their check, and even helps you get a job through their program.

      Remember, the Bible says God helps those who help themselves.
      Best wishes with taking action.

      over 1 year ago
    • Carool's Avatar
      Carool

      BoiseB, thank you! My birthday is April 29, and I'll be 94 in 2042. May we share that party! I don't travel beyond the NYC tri-state area, but I'll make an exception for this.

      over 1 year ago
    • Carool's Avatar
      Carool

      I'm not stage 4, so maybe I shouldn't be on this thread - but I'm going to say this anyway. Most of us here are no longer young. We don't want to die, but (speaking for myself only) if I die soon, I'll at least have lived to old age. It's very different for someone young, like you, EmpathAgain. I get a little crazy when I see young people with stage 4 cancers. There's no one to blame, of course, but it is so rotten and unfair. I hope you remain at stage 4 for decades, until science finds even better treatments than now.

      over 1 year ago
    • leslie48240's Avatar
      leslie48240

      I'm so sorry. I am also Stage IV but still here and enjoying life ...11 years after diagnosis and over 9 years testing clear. I know I am one of the lucky ones...so far...and have to honestly say that I do live in fear of it coming back. However...I try to put that aside and use it instead to get me going and doing stuff I love. I hope you can find some comfort and hope along the way. Wish I could give you a big hug.

      over 1 year ago
    • Cobokat's Avatar
      Cobokat

      I am Stage 4 Breast cancer with Mets to my lung and lymph nodes since November of this year. Whew! Hearing that took my breath away…I have been on Keytruda since then and am feeling very well until my last scan when I learned that the cancer has appeared to progress. I am still on Keytruda for the next two months when I will have another PET scan to confirm if the Keytruda has obviously failed (they are researching my options in the meantime).

      The average life expectancy for my type of cancer is not good. I don’t think about that. Mostly I think about what I want to do. Our mind can only think one thought at a time. When negative thoughts come - I change to positive. Whatever time I have, I want to enjoy it. It’s how I want to be remembered.

      over 1 year ago
    • SandiA's Avatar
      SandiA

      Hi! I was diagnosed stage IV four years ago. Beating the odds so there’s always hope. When I was first diagnosed I lived my life centered around appointments, working and resting. I finally decided that wasn’t going to work. I started adding more fun things into my schedule. A group of ladies would come over now and then and basically take over my kitchen. I had to provide the sangria and they did the rest. Little by little I also started buying the concert tickets and planning vacations. I was afraid to do that at first but I found having something to look forward to and a goal helped. I also learned to find joy in the simplest things. Things I probably won’t have given much thought to before. It dawned on me one day when I was getting scans. Hard to find joy in that. There was a nurse there and she had transferred from another department and basically needed someone willing to allow her to access their port so she could show them she knew how to do it. Apparently learned years before but had not done it in a while. So they asked if I would volunteer and I said yes. Everyone was stunned, apparently lots of people had said no. I am not sure who was more nervous. She was a little nervous everyone around was nervous and I was nervous not for me but for her. She did it! Did it perfectly. She hugged me and thanked me over and over again. Everytime i see her she hugs me. It dawned on me that day that I could find joy and a purpose in unexpected places. So basically for me it was taking baby steps!

      over 1 year ago
    • GeeKay's Avatar
      GeeKay

      I was diagnosed with Stage IV colon cancer in May 2017 and told I had 12 months. The treatment was for chemo till my body could no longer take it. That was not a plan that I could accept. Saw 2 doctor’s outside my medical plan who both recommended CRS with Hipec with a third doctor. I did that in April and am now NED.
      While I know that we all have a finite time on the planet, this disease has given me a perspective on that . I am so grateful to still be here for my kids. Surround yourself with positive people, lean on friends and family when you need them, get some meds for depression....really does help!
      Create situations for FUN! Laughter is also medicine. Get out and be with friends often or invite them in. I have found delight in things that I took for granted.
      My best advice? Talk to someone about meds for depression and anxiety. It is a game changer.

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Have you read Senator John McCain's story? As a son and grandson of two Navy Admirals, he had planned on a Naval career until he crashed his plane in Viet Nam and was captured and held as a Prisoner of War (POW) for over five years. Because of torture he received as a POW, his body was permanently damaged, and he realized he couldn't have the career he had planned in the Navy, so he retired and began a different life that he loved.

      He was known to have often said he "was the luckiest man in the world" to have lived his life. There are photos of him getting off the bus from the Hanoi Prison Camp with a huge smile on his face!

      Please call your Primary Care doctor about depression meds and a counselor. Then read about Senator John McCain's life.
      Best wishes.

      over 1 year ago
    • Razmataz's Avatar
      Razmataz

      Listen, I know and understand what your going through. Through the last metastisis to the bone the pain was so great that my quality of life was diminished. I was at a hopeless point and thought I just wanted to hurry up and die as my pain was distressing the people I loved. Here I am 6 months later with minimal pain and NE of cancer but the promise that it will be back as it is incurable. I am told to go enjoy my time as when it comes back it might hit hard. I cried at the words incurable and surgery was not to cure but for quality of life. I do have a faith and no that I do have a hope just might not be here on earth. Doesn't mean that fear doesn't overwhelm me at times or that its hard to make long term goals or plans heck its hard to make daily plans as I never know how much strength I will have each day. At first my family would get so mad because I'd make comments like I don't know if I'll be here next year or when I die I want... etc. They think its not believing for the best...I tried to explain its being realistic. So there have been overwhelming days of how do I go on...but since pain is not as big of an issue (I also take pain meds) I see the good and fun things. My son and I go places where before we would make excuses not too. I give freely to those I love as I know when something happens to me I don't want them to think of me as a selfish person but rather a loving and giving person. I made a pact to myself quite a few years ago to make sure those who have made an impact on my life know that they have. We are in fact lucky as we have time to pretty for our death so to speak. We have time to prioritize what is important to us, make ammends if need be, and create our ending. Many people wake up dead with no warning... My son once (ok more then once) was super angry and said what is wrong with God... My response was simple, the scan that found a blood clot could not have been done...twice. The metastisis that the dr missed gave an extra month for a new trial to come out for me to be involved in... The second metastis missed and then thought to have doubled...allowed me to go to neurosurgeon and have removed... Sometimes mistakes or mishaps are to me Gods way of watching out for me. I was not and am not a religious person but I am spiritual. We all have our own journey and deal differently. I am here for you if you just need to talk or unload. Ask the dr.'s for what you need...push for it. I was and am upfront with my dr. I won't go through alot of suffering needlessly. I want to be "coherent " for those I love but if I'm miserable I'm sure they would rather I have meds to make me feel better. Comfort first before trying "new" cures... Hugs...

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Razmataz, best wishes to you. EmpathAgain is only about 35 according to her Profile.

      It seems to me that we need to accept that our goals should be flexible with other things going in our lives, not just sickness, but changes caused by being a wife, parent, or other desired family situations. Not to be flexible with goals is a set-up for disappointment.

      Best wishes to everyone.

      over 1 year ago
    • kalindria's Avatar
      kalindria

      We're all dying every day anyway, cancer or not. Instead of focusing on that, I prefer to live as I always have, focusing on being a creative person, good to my family, and supportive friend.

      When I was diagnosed, nearly 5 years ago, I only had a 12% chance of being here today. I told my oncologist that someone had to make up that 12% and I planned to be a part of it. So far, so good.

      It may be simplistic but if you look at the time left, imagining it ticking away, you'll get sad and depressed. But realistically, everyone is living on limited time. We just don't know when our time will run out. Since we can't control that, I prefer to value my days and do something creative in every one of them. It helps feed my soul.

      Take good care of yourself. Treat yourself. If you're newly diagnosed, understand that this is part of the process. If you've been on this cancer journey for a while, has anything helped you previously? Can you try that again?

      If you are able, volunteer. Helping others can shake us out of our self-pity. I can't do a lot and am often neutropenic so crowds are out but I manage the Facebook page for the county Sierra Club group. It's fun and I feel great that I can do something to help out a cause I believe in. They are thrilled to have my help as they're not terribly tech savvy so it's a match made in heaven. Perhaps you can do something like that?

      Whatever you do, please know that a lot of folks are in the same or a similar position. This journey is a tough one and makes many of us question all kinds of things in our lives. Those questions aren't always easy and we don't always like the answers we find. But we learn about ourselves and we grow from seeking those answers.

      We care. Hugs.

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Kalindria, you are so right. I challenge anyone to spend some time in the waiting area at the local VA Hospital watching patients. Many of hose veterans are folks who are worse off than we are. Go there to make yourself feel lucky.

      Nobody promised us a rose garden. . . .

      over 1 year ago
    • Razmataz's Avatar
      Razmataz

      Thank you for your kind words...

      over 1 year ago
    • Nana52's Avatar
      Nana52

      I have cancer, cancer does not have me! I don't think about my Stage IV lung cancer. I have developed very good relationships with medical personnel at my hospital and enjoy seeing them every week just to chat. It passes the time. I love my life, great husband, children and grandchildren, great friends. I took an early retirement at age 62 so that I could do things without having to worry about going to work everyday. I had to put my priorities in line. I have 4 dogs that I love who make me get up each morning and spend time with them throughout the day. I've been on cancer drugs for over two years now. It is what it is. I believe in enjoying my life to the fullest while I have the time. Wouldn't have it any other way.

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      EmpathAgain, please update us on how you are feeling and what your doctor says. Best wishes.

      about 1 year ago
    • BeckyTice's Avatar
      BeckyTice

      My doctor told me I was terminal after my cancer went to my belly. Then, after chemo and surgery... he claimed he didn't say that.... that was in October 2015. Now I've got little squamous cell cancers popping up on my arms.... just had the second one taken off. They say that's supposed to be a sign of some kind.... probably just that the cancer and the chemo have messed up my system.

      I've heard people say "Only God knows" about so many things and they don't mean it. I've been running a Bible Study for years and years.... and I'm convinced... "Only God knows" when my last breath will be.... but until then... I still have a husband to feed and a house to clean and kids to worry about... and Bible Studies to get ready for publishing.... I don't have time to be terminal.

      Oh and if you care to follow... here's the link.... http://forums.somd.com/forums/30-Religion

      about 1 year ago
    • BoiseB's Avatar
      BoiseB

      Becky your story is so inspirational. Your Dr. sounds like my Dr. On April 1 2013, he told me I had a 1 in 100 chance of being cancer free in 2018. I said wanna bet. He was too chicken to face up to that bet. He got a cushy grant to do full time research. Best April Fools joke ever

      about 1 year ago
    • petieagnor's Avatar
      petieagnor

      Thanks everyone for your input. I felt like EmpathAgain. I asked the Dr. for some help. I took the meds for depression, but didn't like the side effects so told everyone to deal with me. We don't always fit into the pigeon hole family wants us in. Everyday is a new day. I live it to the fullest that I can. I do what I can, when I can. Sunshine61 gave me hope as my MBC is where it was in 8/2016. I've had some set backs, but still feel I have a handle on my life. Everyday I say, "This is my life, no cancer's".

      about 1 year ago
    • Sunshine61's Avatar
      Sunshine61

      Thank you petieagnor I am glad I could give you hope, that made my day. Don't give up on your meds they can be life saving. Sometimes you have to try several different meds to get the right fit or feel. Its like trying on a pair of shoes.

      about 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Petieagnor, I agree with Sunshine 61 about your depression meds. Please discuss the side effects with your doctor and ask if another drug or lower dosage would work better for you. Low-dose antidepressant drugs are also helpful for pain, but sometimes you have to adjust to get it right. Best wishes.

      about 1 year ago
    • BeckyTice's Avatar
      BeckyTice

      petienagnor.... if you were taking high blood pressure medicine or insulin... would you stop? I know a wonderful caregiver [ovarian cancer survivor herself] who stops taking her estrogen because she feels better and then she gets in trouble. Sometimes she can't afford her anti-depressants so she goes without and she gets in trouble. I once had a doctor who wouldn't listen... I have one now as a matter of fact.... don't let that ignorance stop you.... KEEP TAKING YOUR MEDS and KEEP CONTACTING YOUR DOCTOR ABOUT YOUR SIDE AFFECTS.... I find if I leave a message in their voice mail every day... a nice message saying "I'm not well please advise" gets their attention.

      about 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      EmpathAgain, please reply. We want to know how you are doing. I've been depressed for a couple of years after losing both of my parents, so I understand how permanent change can impact your life. Thankfully, I'm much better now than at the beginning.

      about 1 year ago
    • Carool's Avatar
      Carool

      EmpathAgain, I'll second BarbarainBham's request. Please let us know how you're doing.

      about 1 year ago
    • PatriSolo's Avatar
      PatriSolo

      From the day you are born, we all are dying. Being diagnosed Stage IV only means I need to monitored regularly (like high BP or diabetes) and treat my recurrences. I plan on living till my 90’s, I am so healthy that my non-oncology doctors (GP, cardiologist (treated me for 17 years but now told me don’t come back) are amazed how my healthy lifestyle has made me twenty years younger.

      about 1 year ago
    • mofields' Avatar
      mofields

      My husband was diagnosed with Stage 4 liver cancer after undergoing chemo for CLL. At the time of his surgery (last November) we were told 18-24 months, maybe not into 2019. Well, right now the disease is "stable" - which means not growing or changing and our son could graduate from college in December (if needed), but we're now looking for him to stay and graduate in May of 2019 - with his Dad hopefully in the audience. Keep optimistic - the current chemo regimen seems to be working at this time. We know there is not a cure, but there is a treatment - for now. Of course, you could get hit by a bus and die - which has nothing to do with your cancer. So live!!

      about 1 year ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more breast cancer questions.  Also, don't forget to check out our Breast Cancer page.