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MandaMoo's avatar
MandaMoo
Member
12 years ago

LOSER

So please bear with me. This may seem self indulgent. I have to get it out. Maybe I am not alone in my feelings. I work hard to stay positive, to maintain some hope as it seems to be running out. I like to project positive energy believing that we can manifest things in our lives if we try hard enough. But... I'll put it out there. I feel like a failure. In a pink world of battling the beast, of being on a journey that will enrich me, of fighting a war, of being a battler - I'm failing. When I was diagnosed with secondaries, albeit a little sooner than the average Mary JO, my optimistic oncologist said, don't worry, it's a chronic disease, you can live for a long time managing this with medication. I have always been happy to have such an optimistic and proactive oncologist. I thought I would increase my odds of this extended survival throwing myself into lifestyle change, learning to meditate, investigating my spiritual side, exercising. I even swam an ocean race. I learned lots, my life was enriched, I felt healthy and well. My disease however, continued to charge along despite what we threw at it. Don't do chemo at all screamed the alternative corners - poison, totally wrong approach, heal with this powder, this diet, this healer, photodynamic therapy, vitamin C infusions. Let's try another trial, different chemo combination from the other corner. Meld the best of what makes sense. Are you winning? I heard the volunteer ask a lady beside me at day onc... I can't win this one she says... (At that stage I didn't know about my secondaries, I didn't understand the option of not being able to win.) Winning/losing - living/dying This war, battle mentality makes losers of us, failures. Continuously I see on social media when someone talks about their advanced diagnosis - messages of you can do it, you're strong and brave, kick cancer in the butt. Isn't that what we all try to do? Well most of us. we all know some for whom it is all too much. Does anyone give a second thought to how this makes us feel? What about when you try your heart put. You fight for the latest drugs, you go on the trials, you become vegan, you change your life, you address your emotional demons yet still none of it works. I feel like a failure. For me this is not a chronic disease. I've always seen anything less than cure as failure but would have been happy with long term stability. I have failed my family - my husband and children. While I know and understand people will say this is not true, it is how I feel. No mother should leave her children before they are adults. They should not have to see you crying in pain, drowsy from the drugs. No husband should have to say, it's time to manage this differently now. He should be planning hideous driving trips and overseas holidays for our retirement instead of working out how to live and pay for medications and expenses. They will feel abandoned. My Girls understand I may die from this, my boy has no idea. How is he going to feel when one day Mummy just isn't here anymore? I've never failed anything in my life - I'm your classic high achiever. Put my mind to it and it is mine. When I got cancer diagnosed - it didn't even cross my mind that the disease could kill me, when I was told it would I was blindsided and determined to be the one that surprised the drs - if anyone could it would be me. In this, the biggest test, I am failing. So why do we talk like this? How does a dying person feel when the world uses words like 'lost the battle' = LOSER. 'Failed trastuzamab' = FAILURE Why is the person turned into the one who made this happen? Why don't we die of cancer instead of losing the battle? I don't know. Just had to get it out there. I to,d my husband I felt like a failure - he told me I was a hero - but heroes have superpowers and would never die from cancer, would they? A x

22 Replies

  • I know Tonya - I have always been in awe of my body's ability to make these children and sustain them with breast milk alone! I was superwoman. I don't know if its luck or not. I've certainly given it a good shake. I've been determined. We are not sure current chemo has been unsuccessful yet but blood tests indicate it hasn't and my symptoms have probably worsened rather than mproved. We have one more dose before scan. Yesterday I lost all of my hair again. I think it is the marching of symptoms, the cough, the pain from the damage coughing has done to my ribs and back, the lethargy that perhaps makes the mind think such things. Pain is an incredible leveler and I am fortunate it has not been a big part of my disease. I guess I just wish things were different - not a 'why me' moment at all -'why not me?' . A xx
  • “I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don't read a book while the venom sack gradually empties itself into your system, the image of the ardent solider is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.” ? Christopher Hitchens, Mortality In this interview Christopher Hitchens comments on the notion of "battling" cancer. I found comfort in this and perhaps you might too. http://www.dailymotion.com/video/xn1p9k_christopher-hitchens-final-interview-2010-bbc_lifestyle Xxxlouise
  • “I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don't read a book while the venom sack gradually empties itself into your system, the image of the ardent solider is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.” ? Christopher Hitchens, Mortality In this interview Christopher Hitchens comments on the notion of "battling" cancer. I found comfort in this and perhaps you might too. http://www.dailymotion.com/video/xn1p9k_christopher-hitchens-final-interview-2010-bbc_lifestyle Xxxlouise
  • Your blog is very thought provoking.I too,don't understand the use of words like 'battle' and 'winning' to describe breast cancer outcomes.It's just so random as to who survives and who doesn't.Even "lucky'and 'unlucky' don't seem like  appropriate words to use but are probably closer to the reality of bc.It takes alot of guts and bravery to keep going back for more chemo so you certainly aren't a failure Amanda.You've done your personal best with this cancer thing. You are  a lovely mum and have produced 3 gorgeous children - that's a great achievement. How strange that our bodies are so amazing and can produce such little miracles and then can let us down with a cancer we can't control.I am sad that the latest chemo didn't help you  Amanda but I hope you get more time with your family.Far from being a failure or a super hero,I think you are an inspirational woman.

                            love and hugs,Tonya xx

  • Firstly a big hug. I had a dear friend who was one of the most amazing, beautiful, strongest, determined, funniest and delightful person I have ever had the pleasure of knowing.  She recently passed away from her breast cancer, leaving her 4 kids and husband behind. She was not a failure. Her life means so much to those of her who knew and loved her and the fact that her cancer got her in the end, is no reflection on her or that she failed.   In the end we all die, whether it be of old age or sooner with disease, we will all pass away. Dying is not a failure on our behalf, it is part of life.  

    There is a difference between a cure and healing, and I wish for you healing. Of course I pray that you are around for a long time yet and that your disease can be held at bay in the years ahead, but please go gently on yourself.  You may find this book by Rachel Naomi Remen helpful. It has really soothed and calmed me over recent months, particularly when I was first diagnosed. I love how it starts off talking about  life force and resilience. It brought me a lot of peace when fear threatened to take over. I had a hard copy but have also rececently downloaded it onto kindle through Amazon. http://www.rachelremen.com/books/kitchen-table-wisdom/

    Will hold you in my thoughts.

    Ngaire

  • Amanda, I cannot for one minute pretend to know what you are going through; for now I only live with the fear of secondaries, not the reality as you do. And yet so much of what you write -- as always -- resonates. You have the gift of being a beautiful writer, the gift of being an extraordinary communicator, and in these fields you most definitely can take comfort in not being a failure. But what comfort can that bring you when you are staring death in the face sooner than you wished? When you ache at the goodbyes you know will come, to your husband, your children, the others you love, who love you? But I'd proffer that it is not you that is failing. What is failing you is a medical system that won't offer you treatments without crippling financial cost; science and research that just can't come quickly enough for you; the genetic lottery that wrote this code and destiny into your genes and gave you no say. I keep tapping more and deleting and trying again and failing to be able to communicate adequately just how distressed I am for you. You have had such a deep impact on me since I joined this site on diagnosis 11 months ago. Barely a day goes by I don't think of you and wonder how you are. And that will be a lasting legacy - you've touched lives well beyond your inner circle. You've shared beauty and pain; joy and heart ache; wisdom and wit and lessons learned with a generosity of spirit that is remarkable. I won't tell you to be strong or hopeful or that most dreaded of cliches -- 'let's kick cancer in the butt' -- but I do hope in coming days you come to a place of peace that you have not failed, but life and circumstances have failed you. May tonight find you asleep wrapped in your loving husband's arms, and even if for a few short hours, you both feel no pain, no fear, just dream the dreams that make your spirits at least flutter if not soar. With love. xox
  • Amanda, I cannot for one minute pretend to know what you are going through; for now I only live with the fear of secondaries, not the reality as you do. And yet so much of what you write -- as always -- resonates. You have the gift of being a beautiful writer, the gift of being an extraordinary communicator, and in these fields you most definitely can take comfort in not being a failure. But what comfort can that bring you when you are staring death in the face sooner than you wished? When you ache at the goodbyes you know will come, to your husband, your children, the others you love, who love you? But I'd proffer that it is not you that is failing. What is failing you is a medical system that won't offer you treatments without crippling financial cost; science and research that just can't come quickly enough for you; the genetic lottery that wrote this code and destiny into your genes and gave you no say. I keep tapping more and deleting and trying again and failing to be able to communicate adequately just how distressed I am for you. You have had such a deep impact on me since I joined this site on diagnosis 11 months ago. Barely a day goes by I don't think of you and wonder how you are. And that will be a lasting legacy - you've touched lives well beyond your inner circle. You've shared beauty and pain; joy and heart ache; wisdom and wit and lessons learned with a generosity of spirit that is remarkable. I won't tell you to be strong or hopeful or that most dreaded of cliches -- 'let's kick cancer in the butt' -- but I do hope in coming days you come to a place of peace that you have not failed, but life and circumstances have failed you. May tonight find you asleep wrapped in your loving husband's arms, and even if for a few short hours, you both feel no pain, no fear, just dream the dreams that make your spirits at least flutter if not soar. With love. xox
  • I read this with tears feeling your frsutration at the world and the words used to describe this insideous thing and how we manage it.

    When you have given it all you have, when you have tried all you are a hero. Every time you manage to do things like swimming in a race you are showing the world you are a hero.

    I feel the biggest test is in how we manage our relationships whilst we are on this journey and I am sure that you are doing that just fine.

    You are in my thoughts and prayers.

    Donna

  • I read this with tears feeling your frsutration at the world and the words used to describe this insideous thing and how we manage it.

    When you have given it all you have, when you have tried all you are a hero. Every time you manage to do things like swimming in a race you are showing the world you are a hero.

    I feel the biggest test is in how we manage our relationships whilst we are on this journey and I am sure that you are doing that just fine.

    You are in my thoughts and prayers.

    Donna