Forum Discussion
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
"Jim did not lose his battle - we just ran out of options" This is the current ad with Jim Styene's wife. He always came across as such a strong determined man - and I am sure he was. Reality would assume that he had "bad days" as well. He too had a young family that he was determined to not let go of. During this bc journey I have encountered so many incredible amazing human beings. It is difficult to comprehend how "they keep on trying to ...." so hard to put into words. I am just "blown away" by the resilence, determination etc etc etc. I know WHY but I am still blown away. I am not going to say it breaks my heart....that's just so shallow and all about me. I just can't fathom exactly WHY human beings have to "do" this challenge. I have read loads of spiritual books and can only reason that "this is our learning for better things" . It is hard to learn at the expense of loved ones though. I have experienced and "learnt" so much from these special people (including YOU Amanda) that my head spins. Some of us are teachers, some of us are followers, some of us "way above the lot". You Amanda are in the last category who will never stop questioning. XLeonie
"Jim did not lose his battle - we just ran out of options" This is the current ad with Jim Styene's wife. He always came across as such a strong determined man - and I am sure he was. Reality would assume that he had "bad days" as well. He too had a young family that he was determined to not let go of. During this bc journey I have encountered so many incredible amazing human beings. It is difficult to comprehend how "they keep on trying to ...." so hard to put into words. I am just "blown away" by the resilence, determination etc etc etc. I know WHY but I am still blown away. I am not going to say it breaks my heart....that's just so shallow and all about me. I just can't fathom exactly WHY human beings have to "do" this challenge. I have read loads of spiritual books and can only reason that "this is our learning for better things" . It is hard to learn at the expense of loved ones though. I have experienced and "learnt" so much from these special people (including YOU Amanda) that my head spins. Some of us are teachers, some of us are followers, some of us "way above the lot". You Amanda are in the last category who will never stop questioning. XLeonie
Hi Amanda
I know how you feel. I have had many moments when I feel like I am letting my family down. When we got married my husband and I envisaged growing old together, seeing our children grow up etc. Now I have to try and focus on today but that isn't always easy. My children have no idea just how ill I am - I don't want to spoil their childhood until I can't hide it any more. I want them to have a carefree childhood like I did - sadly, this probably won't be the case as they will have to deal with death a lot sooner than I ever had to. Until then, I will let them have their carefree days and I will keep going on dealing with each day as it comes.
The whole belief that breast cancer is curable is very frustrating for those of us living with Stage 4 who know differently.
Keep your family and loved ones close - a life well lived, no matter its length, is definitely not a failure.
Amy xx
- Hi Amanda , if being hard on yourself helps you go ahead because your giving yourself a good thrashing, it's so great to blog out the things that sit in our brain or the words we say to our mirror in our bathroom on this site with no guilt, and maybe that's what it really comes down to is our inner guilt, you are so right we all want that bit extra and it's not greed or anything it's just our natures, but you sweet lady have the guts to put it out there .and if you were in America l think your so great you would have your own reality show ha ha , (a dig at humour) I love kitchen table wisdom I always feel good when I read it, it seems to centre me when l need it. Don't be hard give yourself a hug at what great foundations you are laying down for your kids, and in the end that's what your trying to do, make great foundations so the building doesn't fall down. Love from adean
you have reminded me of Christopher hitchens--fantastic articles in vanity Fair and he wrote with such honesty and clarity about a range of things but what was so touching was his articles about his health --thankyou
Thank you for sharing how you feel.
I cannot even begin to imagine what it would be like to go through this disease with young children (mine are all adults).
I hate the terms "fight", "battle", "winning" and "losing" BUT most of all I hate being told that the "key" to my survival is to remain "positive".
I am so sick of hearing that.
It seems that everyone is scared of cancer....and they don't like being around someone who is struggling with anything whether it is depression or any other chronic illness.
This is a journey that you do with your very few people.....only the tough can stick out the intensity of this journey. If you are fortunate, these people are the ones who meant the most to you before your cancer.
The beauty of forums like this is that you can let it all out to us....and we will understand......sometimes it is not possible to let it out to your family as you are burdening them unnecessarily.
- 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
- 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. X
- 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 x
- 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.
