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MandaMoo
Member Posts: 500 ✭
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
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
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Comments
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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
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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
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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.
xox0 -
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.
xox0 -
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
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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
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“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
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“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
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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 xx0 -
Yes relationships through the cancer maze are a challenge all of their own - partners, parents, friends, children, caregivers. Sometimes it feels right other times so incredibly wrong.0
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Just a snapshot in time as each of my posts are. Sometimes you are up and others you are down. I don't believe in positivity per se but authenticity. Acknowledging how you really feel and learning from that. We can be blinded by this think positive, be brave, fight, fight, fight mentality but for me that is not real. The reality is very differently- moments do despair and moments of joy and elation, moments of fear, moments of courage. They are all valid.
It's as simple as me feeling I have failed - no, it doesn't help me or anyone else. It doesn't even make sense but its how I feel and I had to get it out there.0 -
We are all so different. It seems taboo to say such a thing as I feel like I've failed but it is how I feel in a culture focused on winning. When I break it down, I know I've done what I can here in Australia. If I lived in the US I may have many more options yet. I am comfortable with the treatment choices I have made along the way. I have always believed you can influence your outcomes and that has driven me for the last few years so it is no surprise I suppose that I am disappointed with the outcomes.
I also don't feel failed by the system because they don't know how to treat this disease, I feel angered by the spin that this disease at this stage is treatable - I truly wonder what percentage because while I know and love some miracles, too many friends are gone.
And yes, I slept we'll in a drug induced haze to alleviate this back pain (caused by coughing) - I've woken feeling refreshed. I'm not actually contemplating stopping treatment even yet but it is time to address managing my symptoms.
I actually woke feeling hopeful this morning! Hah!
Thank you.0 -
I too believe in healing. The book you mention is very wise and sits beside my bed.
Death is a part of life as I tell my children, it happens to all of us. It's not death that I see as failure - it is being unable to control and manage the disease. I could die any number of ways, I just have forward warning. I've tried to embrace that and I live my life fully every day (with ups and downs). I've tried to see an upside to cancer and no I don't see it as a gifts- I reckon I lived pretty fully and happily before my diagnosis. I have probably become much more mindful though.
Perhaps one of the ways I deal with the fear is to write - its a public forum and can be interpreted in many ways by people who do not know me. That's ok. I learn from the responses, I learn about me too.
Thank you and I think I will pull Rachel's book out for a little read today.
Another book I've found incredibly healing is Anita Morjani's Dying to Be Me - her story is amazing but her message if living life fearlessly is compelling.
A x0 -
What an interesting quote and interview.
I think we all see cancer differently. Whether it has grown from within or we fee it invaded us, whether we battle or cajole it to be gone.
I've personally never felt passive. I've felt empowered and informed in my choices and realities about the possible impact of the choices.
For me I never liked battling. Struggling, challenged - yes - in command of my body. Focused on living as best I can.
No matter how old we are there seems to be more one wants to do, see, achieve.
Thank you. X0 -
I am so very glad you awoke feeling hopeful. Everything always feels better when that's the way our emotion compass is pointing. And at times, there's a lot to be said for a drug induced haze if it means sleep and a little escape.
I couldn't agree more wholeheartedly with you on the issue of spin: I don't know what shocked me more, diagnosis or learning that even with it not in my nodes, excised with a mastectomy, body awash with chemo and living with an essentially oestregen free body, the darn thing can come back. They just don't quite sell that message in all those too-pink ad campaigns do they?
There's no question you've made all the right choices, and availed yourself to all the best we have on offer. I'm sorry if I was clumsy in what I wrote re the medical system failing you...I meant only that it hasn't yet caught up to the cure stage, all any of us wish for, not only for ourselves and each other, but the women who will follow us. From what you've shared, it sounds like you are in the care of an extraordinary team of professionals who've been as determined to want to influence the outcome as you have.
Thanks again for sharing with such honesty Amanda. You keep it real, authentic, and that's worth so much more than the bubblegum flavoured pink candyfloss some serve us.
May the symptom management plan fall into place for you with relative ease I hope.
Here's to a good day.
xo
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