Post 1: ONCE UPON: I empty my saK...
1. PRESENTATION
to listen to this post :) click here ==>> presentation-misterkfighting-kit-bycharlotteHello everyone, I'm Charlotte, I'm 28 years old, I'm a stylist at Sézane , and I live in Paris....
My story is long, you will discover it gradually ;), since September 2014, I have been in remission.
Remission of what?
Mister K (cancer) of the ovaries, or more precisely, of serous carcinomatosis of ovarian origin: grade 1 – Stage: 3c, discovered on April 4, 2013, charming program.
Today I decided to create my “Kit” through this blog, to share my experience and above all my practical – practical tips: “Mister K fighting Kit” practical – practical in short ;)
- History of my K or how it started
The saga begins like this:
For almost 2 years I suffered from acute stomach pains, which started in the lower abdomen and migrated throughout the intestine...
In August 2011, I began my first 4 visits to the emergency room in 10 days, between August and September 2011, I was then diagnosed: functional colopathy * by Doc Fidel Gastro (glamorous and not so faithful ;)) who would follow me afterwards (It wasn't really the best idea I had).
* in summary, functional colopathy is the term used for people suffering from unexplained stomach aches (well yes we had to find a little name for them that no one understands), it is often linked to stress / anxiety / diet , or for me “young women’s problems”…
The other mistake is my “Doc Gyneco”… Who clearly never took my alarm bells into consideration, and who will also blame my pain on stress, caused by the fashion world so anxiety-inducing ;)!
July 2012, new visit to the emergency room, new diagnosis of functional colopathy, but all the same the emergency doctors ring the bells for me, telling me to be careful: “you were two fingers away from occlusion”.
The day after this eventful night, I rushed to “Doc Gyneco” & “Doc Fidel Gastro”, who without having consulted each other, tuned their violins and prescribed me Spasfon and Nurofen (the friend of painful periods) and above all THE hot water bottle which will become my best friend in the months to follow! Of course, despite my concern, no one will give me a more in-depth examination (scan/echo or other).
Result, as I always trust them (they were not the 2 specialist doctors among “the most renowned in Paris”), I comply, I “drug” myself with the Spasfon / Nurofen cocktail, but obviously I have still very bad!
October 2012, Dad tells me that we have just discovered that Mom had “1 tiny breast cancer”, badaboum, the real stress is coming, I want to be 200% behind my Warrior Mother, I forget the pain, It doesn't matter, I have no right to complain about “so little”, I have to be on top to sponsor Mom, who by the way also has morale of steel and a fighting women's personality! (today she is also in remission since August 2013).
Well, in reality, I'm in more and more pain, but I don't say anything, I don't want to alarm anyone... I can't fasten any pants anymore, I spend my evenings on my couch with P. (my wonderful +1: )) and my super hot water bottle that we adopted.
I can see that P. is worried, but he respects my silence... In December, I will still say hello to “Doc Gyneco” to talk to him again about my pain, and inform him of Mom's K (which could have tipped him off….but no), I come out with my pill and my hot water bottle!
In February 2013, I had the belly of a 4-month pregnant woman, even though I was 1m76 and weighed 55kg.
In March 2013, P. pushed me, I had to consult again! It's not normal to have such a big stomach with my body shape, and especially to suffer so much. Plus, damn, Mom noticed. She decides to accompany me to see "Doc Fidel Gastro", he finds me super stressed, don't panic, we're doubling the doses, still no exam in perspective... There Mom is screaming! So he finally prescribed an “abdominal pelvic” ultrasound for me under our threats. On the echo we see a large pocket of fluid in the “Douglas cul de sac” (I don't know who Douglas is, but I don't feel him), I call "Doc Fidel Gastro" who tells me that it It's linked to inflammation, it's not serious. Panicked, I call “Doc Gyneco” who doesn’t answer and will never call back. So I call Doc Gastro back ( he's tired of having me on the phone ), he sends me to a fellow gynecologist. Who will stay on the functional colopathy, but he at least makes me take a blood test. My CA 125* is at 129 (it should normally be less than 35), I'm worried, he tells me that it's linked to inflammation, if I still have pain in 15 days I have to call him back….
* CA 125 is a very reliable marker for ovarian cancer, but which can also be linked to inflammation, when you have, or have had, a K of the ovaries you become a little obsessed with the evolution of this marker, it must be below <35
At that moment I might as well tell you that I no longer trust anyone, I suffer martyrdom but I can no longer supervise any Doc, I suffer, too bad, I have learned to live with the pain for almost 2 years, I am stealing a super powerful P. anti-inflammatory will do the trick!
Except that on April 1, 2013, P.'s birthday, head to the emergency room! It's worse than anything... I will have emergency surgery during the night for an intestinal obstruction (exactly: exploratory laparoscopy converted into laparotomy visceral enterolysis by laparotomy for obstruction). Happy birthday P.! And on April 4 they explained to me that I therefore have grade 1 – Stage 3c cancer which has metastasized to the peritoneum, my stomach is infested with nodules, I have projections all the way to the spleen....
Oh well, that's what it's like to be stressed!
So this will be where the story of my K (during & after) begins… to be continued (see post 2 for the after discovery – how this page began).
- Why write now / goals
Too busy for a year and a half fighting against Mister K , it wasn't the time to tackle other activities (probably also a little out of superstition if I'm honest).
Remission is not a very happy term, but it has the merit of being the path towards recovery. It is above all a door that opens towards a new horizon: the future…
That's precisely why I said to myself, go, it's time to share.
Quite an ironic idea in the end, because during this entire period and even today I forbade myself from going to look on the internet... I knew that I would not find there the good positive vibes that I needed to arm myself with courage . Today, however, it is through this means that I decide to communicate. Funny contradiction...
“Life is too short to spend it regretting everything you didn’t have the courage to try”
- Marie Claude Bussières – Tremblay-
So let me explain, I want to make sense of it all, some have a tattoo, I have a 33cm scar in an almost straight, vertical line: from 16cm above the navel to 17cm below. So, even with the greatest imagination in the world, it's difficult to pretend that nothing had happened. This is my new trademark, and I would like to modestly share this experience with those who live, have lived, or wonder about what life is, during and after K.
I just want to point out that I have no ambition to get into your heads and take the place of your ordeal.... I am well aware that all cancers are different, unique, singular, personal and that we Everyone experiences this war differently in their own way....
Telling my story is just giving my version, my tips. Maybe give a wave of hope, of smiles, and try in my own way to dust off this image, this taboo that Mister K represents. By living this “hellish saga” I learned to know myself and I believe I got the most out of it. deep within my being, the most beautiful resources that I have within me, I believe that it is important to transmit this force that has driven me…
This illness will have been an opportunity to refocus on my essentials, it is the most beautiful lesson in humility, life, love, meetings and revision of priorities that we can know.
I work in fashion (stylist) , I assure you, I have not become mystical, I still like spending the money I don't have, on trivialities! But I have clearly revised my priorities!
An invisible thread binds us, I believe, us, the “ex-patients” or those currently undergoing treatment. With one glance in the street, you know as soon as you meet someone who lives, or has lived, this damn K. If we approach to talk, we instantly become familiar with each other.
We often feel so alone during and even after, that we feel we can only talk about it among ourselves, we K initiates. This is also not very fair, for those around us who support us tirelessly, but it is a reality. So through these words I also hope to be able to address them, our supporters in the front row, to address them, so that they can find the breach to enter, understand this “apart” universe…
It is perhaps by laughing about it, and by lightening the image of everything that these treatments represent, that we would open the door to those who need the strength to understand, tame and better help the person they love who must fight like a beast!
- My idea
My idea: make a blog / journal / Kit / tips during & after the K.
Relay my practical – practical tips (I would like to point out that I have no ambition to get into your heads and take the place of your test). Through illustrations / photos / texts, transmit as many positive vibes as possible to face all this. Share my experience, embrace the future, share what moves me and makes me smile, follow the road ahead...
Follow the leader ! Follow my Kit! Trust me, RESILIENCE is the key word, I cried a lot. I was very, very scared, very, very often, still sometimes now. Well yes, we're not going to lie, we don't really want Mister K to show up again, and to remember we have some good reminders:
1) as soon as we have pain somewhere we think of a recurrence, or a new K... we immediately call our oncologist, we get stressed and we contaminate those around us,
2) for me the program is very regular monitoring for 10 years, oncologist / imaging / blood test:
- every 3 months for 2 years since September 2014
- after these 2 years, for 3 years every 6 months
- then for 5 years every year.
But let's not forget the most important thing to remember, everything beautiful/good we get from this “adventure”. I also laughed, loved, and always tried to see the bright side of things to keep my strength intact! Supported very closely by a great team who were my first booster. I fought for them too: my incredible P. pillar, my wonderful parents, my incredible “boy band” friends/girls team friends, and my professional “lucky star” meeting…
- Conclusion
This: Mister K fighting Kit will hopefully help those who want it, and personally help me rebuild myself.
“And if we tried to be happy, if only to set an example”
-Prévert- _
During the K “war” it was really tough, but strangely afterwards it wasn't an easy thing either... I still have my demons, my friend: A. (who accompanied me to almost all my chemos <3), recently sent me a link from the Huffington Post , I understood that through these lines she was reading into me; Marie Semidei summed up my vision of the future exactly, and she explains it better than me ;) so also read...
6. Special dedications & huge THANKS (even if thank you is nothing on the scale of everything that happened) to:
the characters:
- my wonderful parents: Dad & Mom <3
- P. obviously, my extraordinary + 1 :) <3
- My friends, the amazing girls team: A., PP, M, C, V, Z., & co
- My friends, the boy band: C., A., N. & co
- Parents/sisters: family of P.
- Morgane & Corentin: who waited for me and trusted me :)
- David: the Coach booster of my head who has followed me since 2011, my super confidant / advice
- Vero, who frees my energies since the hospital and who made these difficult times sweeter
- Wonder Ilona (who experienced K at the same time as Mom & me) as strong as us.
The team of doctors/nurses & co thanks to whom I can write these lines today:
- my oncologist “Doc L.” so considerate, patient and available
- my surgeon “Dr P.” thanks to whom we discovered my K in April 2013 after my occlusion
- my surgeon “Prof L & his whole great team” who saved me
- my wonderful egg surgeon “Prof M”, thanks to whom I could perhaps realize my dream of being a mother, with my own team of oocytes (by GPA of course * ;))
- “Prof B” who freed me from pocket hell
- my great team of nurses at home: Emilie & Francisco who managed to keep me smiling despite everything
- all oncology nurses
- all the interns, nurses & caregivers in the HEGP gynecology department who supported and accompanied me so much during the worst month of my illness (October / November 2013).
* GPA subject: all comments/debates on this subject FOR and AGAINST , please abstain, I am not doing a blog of debates/opinions, I remind you that this part is my personal story/ my freedom . Thanks for taking it into account :).
Pros/friends who helped me:
- The talented Mr Pierre (thanks to whom the blog was able to take shape), without him, very clearly I would still be tearing my hair out over the tutorials! Huge thanks to Pierre for all the time you took and the super positive energy you deployed to support me in this implementation.
- Laeticia: the talented LL, (thanks to whom the logo will be so pretty - currently being created ;) ), I have blind confidence in her tastes, I greatly admire her talent & her pencil strokes! Thank you a thousand times LL (for your patience and for taking the time, I know that your time is very precious…)
The most touching thing is that you two, like all those who advise me, did not bat an eyelid for a second when I asked them for this project and I can tell you that it is a wonderful booster!!
Thank you all for listening to me & supporting me in this great project, but above all for supporting me so much in this long fight, it is also thanks to all of you that I can write these lines today :) <3
Charlotte: Mister K fighting Guide :)
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1. ABOUT
Hello Everybody,
My name is Charlotte, a 28 year old designer living in Paris....
My Story, is long, you'll discover it little by little, since September 2014, I am in remission.
Remission of what?
Mister K of ovaries (ovarian cancer), or more precisely of a carcinogenic ovary origin: Level 1- Stage: 3c, discovery on 4 th April 2013, pleasant program ahead.
Today I have decided to create my “Kit of Tips” through this blog, to share my experience and most importantly my handy - useful tips: “Mister K fighting kit ” Handy – Useful in sum :)
2. Story of my Case or how it all started
This is how the saga began:
Since almost 2 years I had been suffering from acute stomach pains, they started in the bottom of the stomach and slowly migrated towards the intestine…
In August 2011, I start with 4 visits to the Emergency room in 10 days, between August and September 2011, I will be diagnosed: irritable bowel syndrome * by the Doctor Fidel Gastro (glamorous but not very trustworthy ;)) who will follow me in the future (not the best idea I had)...
* To summarize "irritable bowel" syndrome is the term used for persons suffering from unexplainable stomach aches (ohh yes, there needed to be a term for this that no one would understand), it's usually linked to stress/anxiety/nutrition, or in my case “problems of a young women”…
The other mistake is my “Doctor T”… who clearly, never listened nor paid attentions to my alarm bells, who will also put those pains in the stress basket, produced by the fashion world who is anxiety-provoking ;)!
July 2012, a new visit to the emergency room, new diagnosis of an irritable bowel syndrome however the doctors will ring my alarm bells by telling me to be careful “you were very close to an occlusion”.
The day after this rough night, I run to “Doctor T” & “Doctor Fidel Gastro”, who after speaking together agreed on my sickness and prescribed me antispasmodic and Tylenol (the friend of painful periods) and mostly THE hot water bottle who will become my best friend in the coming months! Even though I was worried no one will try to look more in depth (scan / ultrasound or other).
Even though I still don't trust them (It wasn't the 2 most known specialists in Paris), I execute, I drug myself with the cocktail antispasmodic and Tylenol, but of course it still hurts a lot!
October 2012, Dad announces that we just discovered that my mother had “a small breast cancer”, Boom Boom… the real stress gets me, I want to be 200% with my Warrior mother, I forget the pain, it's okay, I have no reason to complain for “so little”, I have to be on top of myself to sponsor my mother who also is a very though women with a very strong personality of af ighting women! (Today she is also in remission since August 2013 ☺)
But me on the other side the pain gets thougher, but I don't say anything I don't want to alarm anyone… I cannot close any pair of pants, I spend my evenings in my sofa with P. ( My marvelous +1 ☺) and my amazing hot water bottle that we adopted.
I can see that P worries but he respects my silence…
In December, I will go and check out my “Doctor T” to share my pains and my mother's situation (which could have made him rethink twice… but no), I leave with my pill and my hot water bottle!
In February 2013 , I have a belly of a 4 months pregnant women, even though I am 1m76 for 55kg…
March 2013, P. insists, I need to go and see someone! It isn't normal to have such a belly with such a morphology and mostly to suffer that much. And also, shit, Mum has noticed. She decides to come with me to see Doctor Fidel Gastro, he feels that I am very stressed, no panic we'll just double the pills, still no exams to come… there Mum starts to shouts!
So then he prescribes a pelvic examination under our threats.
At the ultrasound you get to see a very important pocket of liquid in the “ass of the pocket of Douglas” (I do not know who is Douglas but I do not like him.) I call Doctor T who says that it is linked to the inflammation, that it's nothing. Panicked, I call Doctor Fidel Gastro (he gets tired of having me on the phone) send me to a colleague gynecologist. He'll stay on the irritable bowel syndrome ☹, but him at least will prescribe a blood test. My CA 125* is at 129 (normally it should be lower than 35) I worry, he tells me that it is linked to the inflammation, if it still hurts in 15 days I should give him a call…
* CA 125 is a marker very reliable for an ovarian cancer, but can also be linked to an inflammation, when you have, or when you had a K with the ovarians, you become a little obsessed with the evolution of this marker, it should be under <35
At this moment, let's be honest I don't trust anyone, I suffer martyr and I cannot see anymore Doctors, I suffer, it's okay, I learned to live with the pain for almost 2 years now, I'll steal a very strong painkiller from P., and it will help me! At least for time being….
Except that the 1st April 2013, Birthday of P., we are heading to the emergencies! It's worse than ever… We'll operate me in emergency in the middle of the night of an intestine occlusion (to be very exact: a keyhole surgery converted in a laparotomy viscero enteroclysm for laparotomy for occlusion). Happy Birthday P.! And the 4th of April they explained that I have a cancer level 1- Stage 3c who has spread in the peritoneum, my stomach is infected by tubercles, It has touched the spleen ☺
How stressed I was...!
That's where my story of my K (before & after will start)…. To follow (see post 2 after the discovery - how this page started).
- Why write now / Aim
Too busy during one year and half fighting against Mister K , it was not really the moment to put myself in other occupations (probably also a bit linked to superstition if I can be honest).
Remission isn't a very positive term, but it is the door towards recovery. It is most importantly a door towards a new horizon: future…
That's why I told myself GO, it is the moment to share.
Idea a bit ironic if I can say, as during the period I was ill and even today I forbid myself to go and look on the internet…
“Life is too short to spend it regretting everything that we have the bravery to try”
- Marie Claude Bussières – Tremblay-
I explain myself, I want to give a sense to this, some have a tattoo, me, I have a scare of 33 cm, a line almost straight, vertical: 16 cm on top of my navel and it continues 17 cm below. Even with the biggest imagination ever, I could not pretend like nothing ever happened.
This is my new motto, and I would like to share this experience with those who are, have been, or are wondering what is life, during and after the K.
I want to specify, that I take the side of sharing MY K in this Kit, I am very well aware that all the cancers are different, unique, personal and that we all experience it in different ways (sometimes even with a dramatic end) .
Sharing my story is just giving my version of it, my tips. Maybe give a glint of hope, of smiles and to try from my perspective to undo this image, this subject that represents Mister K.
This sickness will have been the opportunity to focus on my essentials, it's the most beautiful lesson of humility, life, love, encounters and priority thinking that one can live.
I work in Fashion (Designer), I assure you, I haven't become mystic, I still like to spend money that I do not have on things that I do not need! But I have clearly learned to rethink my priorities!
An invisible line binds us I believe , us the “Ex sick” or those still in treatment.
In a look in the street, we know when we meet someone who lives it, or who has lived it, if we get closer to speak, we tame instantly.
We often feel very lonely during and even after, that we believe that we can only talk about it between ourselves, us the K insiders?
It's not always very fair, for our environment that supports us without giving up, but it is a reality, so with those words I would also like to address myself to them, our supporters in the first row, so that they can find the path to introduce themselves, understand this universe “apart”…
It's maybe by laughing, and by making the image lighter that all those treatments represent, that we would open the door to those who need strength to understand, an approach to better understand their loved ones who are fighting against it!
- My idea
Create a blog / Diary / Kit of through & after the K
Share my handy-useful tips (I would like to clarify here that I do not have the ambition of entering into your mind and taking over your battle). Along illustrations, photos, texts, to share a positive wave to be able to confront all this.
Share my experience, apprehend the future, share what touches me and makes me smile, share the road of the after…
Follow the guide! Follow my Kit! Trust me, RESILIENCE is the key word, I cried a lot. I got very very scared, very very often, and still today. Oh yes, let's be honest here, we do not really want for Mister K to come back in our lives and not forget that we have some very nice reminders:
1) Every time we have a little pain somewhere we think relapse or new K…. We directly call our oncologist, we stress and we contaminate our environment,
2) For me the program is a very strict follow up during 10 years, oncologist / scans / blood proof:
- Every 3 months during 2 years since September 2014
- After those 2 years, during 3 years every 6 months
- Then during 5 years every year.
But let's not forget that the most important to remember, is everything that we learn / discover during this “adventure”. I have laughed, loved and always tried to look at the bright side of things to keep my strength! Followed very closely by the greatest team who became my first Boost. I fought for them too: my incredible pillar P, my amazing parents, my incredible guy friends “the boys band” / girlfriends “girls team”, and my meeting with this “lucky star “ professionally…
- Conclusion
This: Mister K fighting Kit will I hope help those who want and will personally help me to reconstruct myself.
“What if we tried to be happy, even just to show the example”
-Prévert- _
During this “war” of the K it was honestly though, but strangely the after isn't an easy piece either… I have still have my devils, my friend A recently shared a link of the Huffington Post, I understood that through those lines she could read in me;
Marie Semidei summarized my vision of the after, and she explains it better than me ;-) to read! link: (in french) Huffington Post
6. Special Thanks to:
Personal:
- my incredible parents: Dad & Mum <3
- P. of course, the man of my life ☺ <3
- My girlfriends, the incredible girls team: A, PP, M, C, V, Z., & co
- My guy friends, the boy band: C., A., N. & co
- The parents / sister: family of P.
- Morgane & Corentin: who waited for me and had faith in me ☺
- David: the booster coach of my head who follows me since 2011, my amazing confidant / counselor
- Vero, who liberates my energies from the hospital and who makes those difficult moments easier
- Wonder Ilona (who had the K at the same time as Mum & me, as strong as us)
The team of doctors / nurses & co thanks to whom I can write those lines today:
- my “oncologist” Doc L.” so caring, patient and available
- my surgeon “Prof L & and all his amazing team” who saved me
- my amazing egg surgeon “Prof M”, thanks to whom I can maybe one day I realize my dream of becoming a mother ☺(by using a surrogate mother)
- “Prof B” who liberated me from the hell of the pouch☺
- “Prof B” who freed me from pocket hell
- my amazing team of nursers at home: Emilie & Francisco who managed to make me keep smiling even though
- all the nurses in the oncology department
- All the interns, nurses & intendants of the gynecological service of the HEGP who were there for me and followed me during the worst month of my sickness
The pros/friends who helped me:
- Pierre (thanks to whom this blog exists), without him, I would clearly still be fighting in trying to understand the tutorials! A big thanks to Pierre for all the time he gave me and for the positive vibe that you have given to accompany me on this nice set up ☺
- Charlotte's angel :) thanks who all the blog can be translated into English, because I am terrible in English ;)
The most touching is that you 2 as everyone who helped me didn't blink a second when I asked them to help me and I have to say that it is the best Booster ever!
Thank you everyone for having listened & supported me in this beautiful project ☺
Charlotte: Mister K fighting Guide :)
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