ITW n°89: Maelle - K fighter (thyroid).
today, the inspiring Maelle, 29 years old, gives us her fight against a K of the thyroid, fought at the age of 18, the testimony of an optimistic young woman "who became an adult earlier than expected, with unfailing positivism. And the desire to control things for fear of being caught off guard again." A lesson on life, very true words, thank you Maelle for giving yourself to us with so much sincerity, and for instilling in us, since everything you have been through, this “furious desire to live” to inspire others who are fighting.
Let's get started:
Who are you ?
First name: Maëlle
Age: 28 (soon 29!)
Profession: Social worker
Where do you live: Yvelines
Why do you agree to share your story today?
Because my first fight will soon celebrate its 10th anniversary! (HB!!) Happy to soon celebrate this birthday, I didn't realize that a “nasty microbe” was invading my body again. Second fight in progress... because I'm certainly not the only one to have a series of battles so at my little level I hope to re-boost those who are going through the same thing as me. Together we are stronger!
What are your qualities (in a few words)?
My unshakeable faith in Life, my smile and my optimism.
What are your passions (in a few words)?
Photography, or how to immortalize unique moments.
What K (what cancer - grade if you wish / stage ditto):
Papillary thyroid cancer.
When was it discovered? How old were you ?
End of 2006, at the dawn of my 19th birthday.
Under what circumstances was it discovered?
Summer when I was 18, I coughed a lot, a lot, too much! Stress from the baccalaureate it seems, cough syrup and bac obtained I go to work two months in Auvergne (land of origin). October, back at university, I am still coughing, my sides cracking from my coughing fits. I decide to consult, Dr S does not find this normal = blood test immediately the results are not good. Ultrasound not much more glorious, any history? Whoa Yes! K of the breast and K of the ovaries are known enemies of a large part of the women in my family.
Puncture “it’s going to hurt!” » indeed... a few days after 9 p.m. Dr. S calls me and calls me to see Mom the next day (I'm pissed! Why with Mom! I'm 18, damn it, I can handle it alone!)
The next day, Dr. S announced “it's cancer, we need to operate quickly”… Mom is crying and I… I think that this famous next day my brain stopped, until the day before the operation.
I don't remember the days, the weeks that followed... no memory, no emotion.
If you are currently undergoing treatment, or in remission (for how long?)
Remission!! But lifelong treatment, very nice endocrine hormones to take every morning otherwise I turn into like the Hulk!
What treatment did you have?
A month after Dr. S's shocking announcement, between Christmas and New Year's Day I had surgery.
Day before the operation, shower with betadine… my brain wakes up, I collapse “fuck!” Damn I have cancer! »
Looooong operation which will leave me with a very nice scar which I will have to tame.
Conclusion of the operation “K was there dormant for a while” given the state of my thyroid.
A few weeks later I was treated with IRA therapy. In short, I was confined in a hospital room with the sign 'Caution radioactivity' on the door. The doctor opens a large refrigerated box in which there is a small radioactive capsule that I swallow and which should destroy what remains of K in my body.
I stay in this room for days and days. The time to no longer be radioactive and therefore potentially dangerous for others.
Traumatic experience, no one to talk to, no one to confide in and no one to explain to me.
My connection with healthcare workers:
My young age made me a VIP patient, very surrounded and paradoxically I suffered a lot from the little explanation I was given. And for a long time I didn’t understand and felt guilty “why me? ".
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
At 19 years old ! Of course the views of others mattered. I felt like I had been disfigured by the operation and I had to learn to tame my scar. Scar that I hid for a long time under scarves and necklaces.
The look of others changed, their looks of desolation made me angry. I couldn't stand their compassionate looks... "because they couldn't understand they weren't going through the same thing as me."
People didn't know what to say to me anymore and I didn't want to talk either. It took me time to face, accept and expose my scar to others.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“You put on makeup, that’s okay then.”
“If you don’t do chemo, it’s not really cancer”
“It’s okay, it’s just thyroid cancer, there’s worse!” »
… no, but shut up! (Pardon)
This sentence has long reassured me in the idea that I should not complain. And I felt guilty for feeling so bad when it was “just thyroid cancer”
How did your loved ones support you?
I was young and so were my friends, they left. Considered the end of the group, the one who drives the ideas, organizes the outings, who smiles all the time suddenly I represented death (according to my psychologist) so they fled.
My family, they opted for a human defense mechanism, silence. Addressing cancer with your child, your granddaughter, is not easy, especially when she is as young as I was. They were there, sometimes clumsy but always kind.
And what advice could you give to loved ones who accompany a K fighter?
You shouldn't be afraid to talk about it. There is a form of mysticism around cancer, we don't dare say its name. Yet when he is there as a K fighter it feels good to talk about it, to play down the drama, to answer questions.
Did you find out about K on the internet?
NO, my doctors have always strictly forbidden me to do so. J
What has the K changed in your life...?
(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)
My way of life was completely changed. I locked myself in a shell for fear of being disappointed again by life and by others. I have become selective about who I share my life with.
Suddenly the problems of people my age seemed very futile to me, I took a slap in the face of maturity! I had a lot of trouble putting up with the bobology of others, but I am becoming more tolerant, we each have different degrees of suffering.
I became an adult earlier than expected, with unfailing positivity. And the desire to control things for fear of being taken by surprise once again.
Almost 10 years later I am still working on the wounds that K left behind after his passing.
What remains is a furious desire to LIVE and share with the people who matter.
Free field ;)
tell us what you want (which might not be in my questions):
My story doesn't end there... after a first fierce fight from which I emerged victorious by knockout and a beautiful marriage...
January 2016, in the shower I feel cervical lymph nodes on the right, they are deforming my neck. Don't panic, I work a lot and it's almost the holidays, I have a sore throat, that's all. I will go to the doctor….
A few days later, Monsieur told me that he was asking for a divorce, I was happy, I didn't understand anything, I didn't see anything coming... I collapsed and forgot about these nasty lymph nodes which took the opportunity to grow. I take refuge with Mom and spend my days crying. She realizes these lymph nodes and sends me a kick in the butt to the doctor. Rebelote… blood test, ultrasound, scan… There are dozens of them, each bigger than the other, fighting for the place in my neck, under the collarbone and one in the right breast. I return to Yvelines, hematologist Dr A, ENT… we remove two just to see what it says. It smells scorched all the same, this time my brain assimilates that something is happening, -12kg, no appetite, 41 fever several times a day, night sweats, itching and so on.
New summons, Mom is there faithful to the post and my two nurse friends (they record the information for me)... the diagnosis is made, necrotic lymph nodes, K is back, non-Hodgkin's lymphoma.
My head is in place, 10 years have passed and I am approaching this fight differently (while managing the divorce of course!). I'm getting used to the idea of losing my hair, an operation is scheduled to remove my ovaries and put them in the freezer. “The chemo is going to be aggressive” it seems.
My friends are in place too and are organizing a weekend in Spain before starting the fight. The day before the removal of the ovaries, Dr. A called “WE STOP EVERYTHING!” ". The second blade reading invalidates the first. It's not lymphoma, you have to find out what it is. What follows is hospitalization and examinations, each more unpleasant and painful than the last. A hell of a team of doctors surrounds me, we have to find what’s eating away at me.
Finally two weeks ago the diagnosis came “Kikuchi Fujimoto Disease”, exoticism but no dreams. Rare disease = no treatment = we try, we grope... I'm on the 3rd and this feeling of poisoning me every time. The days pass for more than 8 months, the fight is daily. My muscles are diminishing day by day, the pain is sometimes there when I wake up or wakes up during the day. Sometimes shampooing is painful as hell but I grit my teeth. I want to work again, I want to win, I want to resort, I want a day without pain, without nausea...
Next exams at the end of October to see how my muscles and nerves communicate with each other.
This time the fight is completely different, 10 have passed I accept being reduced without making it inevitable. I'm no longer afraid to say that things aren't going well, if I'm in pain I cry, if I'm well I burst out laughing, I no longer try to act tough. And above all I am not alone, Mom, my friends are there, they are fighting with me.
Obviously I will come out of this new fight changed but even more positive! I am godmother to a one-year-old Doudoune, she takes care of me with her innocent smiles. I would teach her to experience all emotions, to be courageous and above all to believe in life. Because after a fight against K and a new one against Kikuchi I believe in life! And my new +1 proved it to me, happiness is never far away even in the worst moments!
In conclusion, let's be fighters, fierce, cry and laugh out loud in the same day, perched on our heels!
To all the K, kikuchi and other crap… WE WILL WIN!
I cannot close this testimony without thanking those without whom this fight would not be the same. My two personal nurses show up every day and continue the fight with me. Their loving husbands who protect me with their unfailing friendships and good humor.
Mom who worries but doesn't say anything, it will be fine, I promise, serenity will return.
My brothers for whom all this is very abstract, their I Love You are so many blows to the disease.
Grandma and Grandpa praying for me.
My +1 who treats my sores and ailments with love, and shampoos my shampoo with care.
The brilliant team of doctors led by Dr. A hematologist and human who made me smile even in the worst moments.
To all those who are fighting… we are not alone! ♡
Thank you Maelle, for this very beautiful testimony.
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NEVER GIVE UP!!