Stop The Bullshit!!
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Gayle Taylor
Member Posts: 93 ✭
I am so glad I got to 5 years, and I am hoping to another! My breast cancer was trying to kill me! I fought hard, but I also recall the moments where I caved and wished I would die!
Every one around me tried to shower me with fairy floss and cotton wool, and sugar coated BS!!.... "You'll be fine Gayle! You'll beat this! Stay strong and stay positive!!"
... I was positive! I was positive I had a cancer that was killing me and I was going to die! I hated all that happy cheery shit! Because as much as I took it in, I'd go home to my lonely bed ( hubby slept in another room to give me space to throw up! ) and hug my bucket, and my pink blanky ( Thanks to my cancer care nurse ), and I would cry my eyes out! No one could convince me otherwise. My bloods hadn't changed, my body was failing on me! I would cower down in the shower, pushing my shit down the plug hole because I couldn't control the body fluids, my nose would poor blood, I'd vomited so much I got a hernia! My heart pounded out of my chest, and I still have it after 5 years, a weak heart muscle that gets hiccups... my liver is on the border of failure, but I drink alcohol later in the day to turn my head off! .... I am not my friend, who had both small breasts off, went through a milder form of chemo, no radiation, and can run a marathon every month, paddle board on the lake, ride a skinny bike in a race.... I am not her.... I am 15kg heavier and can't shake that spare tyre around my middle. I am lop sided with an annoying prosthetic boob in my bra, I am the wife who hides from her loving husband who turns away when I undress anyway, who no longer wants to race me off to the bedroom, or do me on a kitchen chair like we use to! I am the wife who catches him looking at nice perky breasts, and just laughs it off!! ( Damn the weather girl!!) .... I am the woman who hates what happened just as my life was going to be amazing!! I am the unemployed, unemployable due to "medical background risk" ... I am a realist!! .... But I am still alive and breathing, and I will still soldier on!!
Every one around me tried to shower me with fairy floss and cotton wool, and sugar coated BS!!.... "You'll be fine Gayle! You'll beat this! Stay strong and stay positive!!"
... I was positive! I was positive I had a cancer that was killing me and I was going to die! I hated all that happy cheery shit! Because as much as I took it in, I'd go home to my lonely bed ( hubby slept in another room to give me space to throw up! ) and hug my bucket, and my pink blanky ( Thanks to my cancer care nurse ), and I would cry my eyes out! No one could convince me otherwise. My bloods hadn't changed, my body was failing on me! I would cower down in the shower, pushing my shit down the plug hole because I couldn't control the body fluids, my nose would poor blood, I'd vomited so much I got a hernia! My heart pounded out of my chest, and I still have it after 5 years, a weak heart muscle that gets hiccups... my liver is on the border of failure, but I drink alcohol later in the day to turn my head off! .... I am not my friend, who had both small breasts off, went through a milder form of chemo, no radiation, and can run a marathon every month, paddle board on the lake, ride a skinny bike in a race.... I am not her.... I am 15kg heavier and can't shake that spare tyre around my middle. I am lop sided with an annoying prosthetic boob in my bra, I am the wife who hides from her loving husband who turns away when I undress anyway, who no longer wants to race me off to the bedroom, or do me on a kitchen chair like we use to! I am the wife who catches him looking at nice perky breasts, and just laughs it off!! ( Damn the weather girl!!) .... I am the woman who hates what happened just as my life was going to be amazing!! I am the unemployed, unemployable due to "medical background risk" ... I am a realist!! .... But I am still alive and breathing, and I will still soldier on!! 2
Comments
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Hurrah! Finally someone who speaks out and says that breast cancer is not a bed of roses. We are all different. Thanks for posting.. Your world has been turned upside down,so has mine. I recently spoke to someone who said overcoming illness is all in the mind.Really? I said is diabetes,asthma etc all in the mind. How your body reacts to chemo ,radiation and medication is how your body reacts. You have some control over how you will react mentally but thats it. For some their journey will be easier than others. I miss my freedom . I cant drive at the moment . I went thru all treatment only just recently have a shoulder injury. My shoulder should heal over several months ,Great. As you said we can only soldier on.
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Whoa! I can see someone needs to vent and have a hissy fit! Go ahead as that is what we are here for! I have to say I struggled with your heading, but that is me, perhaps a bit prudish at times!
Can't compare yourself to others as it only does your head in as I can see in this vent! Eventually you will find acceptance, or perhaps you already have, as I think you said in another post it has been 5 years however your vent is a little like someone just starting out! Anyhow, maybe you'll be on your way to smiling at the skinny bike race and say oh well I'm not 18 anymore but if I was that might've been me!
Alive and breathing is a good way to be! Don't think much of the alternative, do you?
Take care and sending you a virtual hug1 -
We are never the same person, like a broken chalice, with cracks and chips, and loss of lustre. However we have integrity, bravery, insight and courage. We have been through experiences that are difficult to describe to others, understanding that it is difficult for them too.
These qualities shine well above those who have not travelled on our path, and we have the ability to enlighten, support and provide an easier path for those who follow in our footsteps. Never discount how special and loved you aware, and how your example inspires others. Sending you a big wobbly cuddle, Trace1 -
Gayle, just wanted to pop in and acknowledge your Post. I for one have never sugar coated my experience, so I do appreciate when other people don't. We all have different experiences through BC and some a hell of a lot worse than others, but I believe its all relative. First of all Id like to say that its fantastic that you got to 5 years, wishing you many many more! I made it to 4yrs then hit with a recurrence and whole lot worse of a journey....yeah I kicked and screamed even saw the depths of hell and can be brutally honest and say I did have moments that I thought the alternative was better than how sick I was. I did get through it, no clue how as a single parent 6yrs hard slog I wont deny. I never thought Id get to the end of treatment, but I did, it changed me in so many ways, but it also allowed me to sit back and really look at myself. Sure I still have days where I dont like who I see,yep heavier, even aged. But I figured as I currently recover from a Mastectomy/Diep Flap recon in a bit of pain...I can hate what this journey has done to me the past 6yrs or I can appreciate the challenge that I never asked for, that allowed me to rise, to redefine myself, to say NO, to put ME FIRST and to accept I am forever changed but what I never ever thought I would have learnt or found to this point...that I would learn to love myself 100 times more than I think I ever gave myself credit for. All my life living for other people...now I live for me...life is still challenging but I have 2 beautiful healthy children who weathered these years with me, who learnt to never quit...who see beauty where I never could..they SEE ME. To be 6 months in a new relationship at diagnosis ready to be abandoned...nope....2yrs later still here...still seeing beauty where I couldn't...he sees me.
Thankyou Gayle, nobody but nobody can tell their story like the person living it can...it is their story wholly...nope it is not a bed of roses...and all the positivity in the world will not change what you have to go through. I actually dont look too far ahead to the future at all, but in this moment inspite of all of this...I somehow did find peace and had I not been challenged or broken the way this did, I would never have found me.
Hugs Melinda xo3 -
@Gayle Taylor
I hear hurt and pain in your words.
I see my life now after cancer with all the gifts that chemo etc leaves behind as blessed.... I am here for my children longer than I thought when diagnosed back in 2012.
YES there are problems my gut is not healthy anymore my hernia is a pain my lack of strength in frustrating and my neuropathy and lymphodema piss me off at times, but I have let the angst go so that I can enjoy what my new normal is now....
I recently read about Kintsugi a Japanese tradition... and it resonated with me I am sharing it here to give an understanding of how I have accepted the changes that cancer brought me.... I had a bilateral Mastectomy and no reconstruction.
Hugs
Soldier Crab
http://www.drgajdos.com/Articles/KintsugiAndOurBrokenness.htmlMind Matters — Kintsugi and Our Brokenness
Kintsugi, translated as “gold joinery,” is the Japanese craft tradition of repairing broken pottery with gold filled resin. Now artisans use a variety of materials to connect the shards, but the message remains the same. Instead of the mend hiding the formerly broken pieces, kintsugi proudly proclaims the damage visibly with defined lines.
In Kintsugi, the fact of brokenness represents a history beyond newness and, therefore, the object is even more beautiful.
What an allegory for our lives in a culture where new is “improved” and age is to be defied. Kintsugi can be applied to all of us so that we indeed see that we are both beautiful and strong in our broken places. With this sense, we derive meaning from our suffering, our woundedness, our aging.
The power of kintsugi was brought home to me by singer-songwriter John Flynn. I was not familiar with the term until I heard Flynn’s composition eponymously named.
The lyrics of his song bespeak how the analogy of a broken bowl made whole meets our deepest experience:
“Rejoining shattered pieces …
in a whole new way. … You
are beautiful because your
heart is broken … because
you have the wisdom, kindness,
grace … let me kiss the tears
upon your face. …”Recently, I wrote about family. Ironically, soon after that column, I learned that a relative had died suddenly. I want to dedicate this entry on kintsugi to my extended family who now grieve the loss of my first cousin’s youngest daughter, my god child, Julie. At forty-four, she had an aneurysm and died soon after. Part of my extended family’s sense of kintsugi, I think, is in the meaning they have found in Julie’s legacy to live on in others, not only spiritually, but also by her organ donations. Her memorial service honored her giving even in death, and we were all urged to do likewise.
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Well shared Soldier Crab, what an inspiration. Cuddles, Trace xxxx0
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Yep. All that. No idea what to say that may be helpful or I'd have said it to myself and be all better now.
I sneer with disgust when friends send me motivational memes or pathetic platitudes and have to remind myself that they think it may be helpful. In reality it just illustrates how different our mindsets are; even though I've known some of many for years, and it drives a wedge between us. How could they know so little about me--particularly since a couple went through this with me ten years ago-- that they would even consider doing that?
The next person who pats me and tells me I'm strong and it will all work out is likely to get a punch in the face. Given my present condition I may as well throw a wet lettuce leaf at them. I frigging hate people feeling sorry for me, thankfully there are a few around who do not. Marg
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Vent away, I am so glad that I am not the only one that has had to push poop down the plug hole!!! Who would of thought that both bladder and bowels succumb to the course of time?? I hope that the vent has helped you continue to soldier on, its all we can do.1
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Thank you Gayle. There are some things in those words i have thought but never dared to express
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Thankyou sweetheart. I have my days, and this was one of them. I vented here a long long time ago, and I learned from others here too, I was scared, pretty much alone, and out of control with what was going on with me and around me. Cancer pushes you through door after door, and fog after fog. I came out of that fog 3 years ago... they don't tell you what it will be like on the other side, because they don't want to be sued!! ANd that's what we sign all those papers for!! xxxfairydust said:Hurrah! Finally someone who speaks out and says that breast cancer is not a bed of roses. We are all different. Thanks for posting.. Your world has been turned upside down,so has mine. I recently spoke to someone who said overcoming illness is all in the mind.Really? I said is diabetes,asthma etc all in the mind. How your body reacts to chemo ,radiation and medication is how your body reacts. You have some control over how you will react mentally but thats it. For some their journey will be easier than others. I miss my freedom . I cant drive at the moment . I went thru all treatment only just recently have a shoulder injury. My shoulder should heal over several months ,Great. As you said we can only soldier on.0 -
I didn't mention that this was my 2nd cancer... I got bladder and uterine wich spread to my urethra in 1998. to cut years off the story, I now have a SPC, a catheter under my belly button to pee out of. It's of no problem, not now anyway, I had multiple surgerys to try and pee properly over the years, and begged for the SPC to be put in, I couldn't live with the pain anymore!! I want Quality of life!!!.... So, I have false teeth from a car accident, False urethra, False boob in my bra, and no spleen or uterus. No sex with my husband for years!! But we get around it, he's happy ( giggles ) I am an UP person, but when this after effect gets me I am angry as it reminds me of the lack of information about 'after cancer' I was given! THEY KNOW!!! THEY JUST DON'T TELL YOU!!.... It's swept under the rug because if anyone starts asking questions, they deny, and ignore. .... what if.... what if someone spoke up and did sue them for the damage caused to the body by that drug? Am I grateful it killed the cancer? yes!! Am I thankful enough to just "GET ON" with life and pay no attention to the fact that my heart muscle is weak enough to die on me oneday, or that my gut problems are so bad at times I can't hold down a normal job, or that I fear my husband sleeping with someone else for sex, or that I have to buy a new boob because this one is failing, and I can't come up with the $500 first ( oh that's right, I don't work!! I'm on disability )... I have ( and others ) EVERY RIGHT to be angry!! I'm expected to just carry on as normal when I am no longer normal! Before going into the treatment I had no counselling or consult, I was given a diagnosis, sent home, sent to 50 tests to see if I could withstand the onslaught, and on my 1st day I cried and was told to "Toughen up love, it gets worse than a prick in the arm"... yep, that happened!!! 8 hrs after my 1st dose, I ended up in hospital for 4 days, and 5 - 10 after EVERY HIT!! AND, then the Onc says " we may have overdosed you, we'll try half dosage... NOPE THATS NO GOOD EITHER!! So, I quit!!..... I live every day hoping it doesn't return. Every time my bones ache I think I have it. Everytime my liver twinges I think I have it. ... Today was a bad day, and I spoke up!! It's not okay to shut up and be polite!! I am NOT that kind of woman! I call a spade a spade... And if others think I'm brash, then I am, but my friends wouldn't have me any other way!!HIT said:Vent away, I am so glad that I am not the only one that has had to push poop down the plug hole!!! Who would of thought that both bladder and bowels succumb to the course of time?? I hope that the vent has helped you continue to soldier on, its all we can do. Thankyou for understanding! xx
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Gayle...I actually have no words for everything you just said. I had 4 FEC too and I ended up in hospital after each infusion, it was relentless and I was incredibly ill and even on Taxol too. It is true though, they dont tell you everything, I know even now when Ive told my Oncologist of things going on he really doesnt say anything at all.
Melinda x 1 -
Don't keep it in sweety.... let it out!! We are expected by others to be tough, and to be "nice". I kept journals all through my journey, and every page of everyday explains exactly what I went through, every damn emotion, every test, every bodily fluid that flooded from me, and "WTF IS THAT GREEN SEAWEED COMING OUT OF ME??" lol... It is a horrible thing to go through!!... so you tell me!! You tell me how you feel!!Annedipa said:Thank you Gayle. There are some things in those words i have thought but never dared to express
xx
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Because honey, if they tell us, or agree, they will lose out on everything!! We sign a lot of paperwork before entering into that boxing ring, clauses we don't see that deems them safe! .... All I was told going in was "There are NO Gaurentees that this will even work!" ... seriously, it's a game of hit or miss. And no liability! No ownership!melclarity said:Gayle...I actually have no words for everything you just said. I had 4 FEC too and I ended up in hospital after each infusion, it was relentless and I was incredibly ill and even on Taxol too. It is true though, they dont tell you everything, I know even now when Ive told my Oncologist of things going on he really doesnt say anything at all. Melinda x0 -
Oh Gawd your time on chemo sounds horrendous. But look at you ...a Survivor and certainly a fighter. I hope that now you get some joy back in your life and look forward to many more years with some fun in your future.
Is it time to think reconstruction so that you feel comfortable in your own skin? Just reading between the lines here. It might be the right time to consider those options now you know you are going to be around to enjoy them .
And yes chemo sucks ...but friggin cancer sucks more. Take that B! tch ...another one you failed to get.
Look forward to reading many more posts.
Kath x4
