ITW n°41: Stéphanie - K fighter.
today the amazing Stéphanie (ex K fighter), 31 years old, bookseller, tells us about her fight against a K of the tongue, in order to better raise awareness of this Cancer that we rarely talk about and "give hope"! A very beautiful testimony full of beautiful vibes and sincerity, great discovery:
Let's get started:
Who are you ?
First name: Stephanie
Where do you live: on the French Riviera near Cannes :) long live the sun and the sea!
Why do you agree to share your story today?
Today I agree to share my story in order to give hope to patients. I also want to make my K known in relation to better known Ks such as the k of the breast or the lungs. And then, I must admit, I talk very little about my fight. I want to share it with my loved ones. Some people don't dare ask me questions for fear of my reaction. I am very open about my illness. For me, it is part of my daily life. I live it very well :)
What are your qualities (in a few words)?
My qualities hummm persevering, attentive and passionate
What are your passions (in a few words)?
I made my passion my profession. I am addicted to reading. It allows me to develop the imagination and escape from everyday life. I have loved cycling since my childhood. I am addicted to the Tour de France and other cycling races. I had the opportunity to make several stops, it's always a moment of conviviality.
During my treatment, I discovered a passion for genealogy. I delved into the online departmental archives. It allowed me to clear my head. I searched for hours for my ancestors.
I have to admit, I'm also a real argh fashion victim girl....I love fun sneakers, makeup and beauty products. My bathroom can't take it anymore :)
What K (what cancer - grade if you wish / stage ditto):
tongue cancer T4N2M0 (and yes I don’t do things by halves)
When was it discovered? How old were you ?
January 26, 2014 at age 29
Under what circumstances was it discovered?
My first symptoms appeared in August 2013. I felt pain on the right side of my tongue. I wasn't particularly worried. I thought I had a canker sore.
In September 2013, I noticed that I had a small hole and a lump on my tongue. Treatments for canker sores had no effect. I'm looking online to find out a little. I came across articles on tongue cancer. I decide to consult a young ENT replacement. She listens to me and reassures me. I definitely bit my tongue while sleeping. She explains to me that the lump is distended ligaments. She consults her colleague and gives me a mouthwash treatment (medication for stomach ulcers) over the phone. Thanks to this treatment, the symptoms are reduced.
In October-November 2013, I was training for my job to access an assistant position. I am very tired. I am in a period of change and training. I do not worry.
At the end of December, I return to my family for the end of year holidays. My tongue pain is starting to flare up again. The hole is very visible and the ball is growing. This has been preventing me from eating properly for some time now. I become sick. I have a fever and a bad cold.
At the beginning of January, I consulted the ENT again. She panicked when she looked at my tongue and prescribed an MRI in 15 days. My friends advise me to consult a great Stomatologist. When I visit him, he explains directly that 50/50 but given the state of my tongue he suspects carcinoma. He moves my MRI very quickly and directs me to an ENT cancer surgeon at the Lacassagne hospital in Nice. This surgeon confirms to me that it is a tumor that is already very advanced. It must be removed quickly. I spend 3 days in the hospital for additional tests (pep scan, CT scan; biopsy). I came home on the weekend and February 3, 2014 I had surgery.
If you are currently undergoing treatment, or in remission (for how long?)
I have been in remission since May 2015. For ENT cancers, you have to wait 1 year after stopping treatment to speak of remission.
Can you summarize your (K fighter) story for us ?
I had a major operation for a tongue transplant. It lasts from 8 a.m. to 4 p.m. The surgeon removed skin, veins and an artery from my right arm to replace my tongue which had been invaded by the tumor. He also opened my neck to remove the overgrown lymph nodes. So I woke up in intensive care. I spent 15 days in this department.
For 10 days, I couldn't speak because I had a trach to avoid infections in my mouth. I communicated only by slate (this gave my loved ones a vacation). I also had a nasal tube to feed me because I couldn't feed myself through my mouth.
When the healthcare team removed my trach I started to speak again but with great difficulty because I had to get to grips with my transplant.
I left intensive care for another department. I was really well received. I was the youngest in the ENT oncology department, the average age is more like 50-60 years old. My room was super big and I even had a bed for my mom. She came to sleep with me at the hospital from time to time.
I had a second operation to put a tube in my stomach. I still couldn't eat through my mouth, so they gave me my nutrients through a tube.
I left the hospital 1.5 months after my operation. The return home was very difficult. I was very afraid to return home, the shock of seeing my sweet home again after all this time. I was still fed by tube, my provider came every 10 days to bring me my nutrients. I kept my operation probe from January to December (almost 1 year).
I have gradually resumed eating by mouth but I only eat in mixed form. My transplant does not allow me to completely replace my tongue. I eat everything, it's just that it doesn't have the same consistency. As for speech, it is improving but it takes time and patience.
What treatment did you have?
3 Cisplatin chemos
I had 35 radiotherapy sessions.
a tongue graft operation with lymph node dissection (1 and a half months of hospitalization)
an operation to put a tube in my stomach
What tips directly related to K do you want to share?
(your feeling with the doctor, your good treatment organization plans, anything that seems useful to you ;))?
1/ chemo: (ex: your tips, the helmet, your affinities with nurses):
No real trick, a friend found the magic phrase to make me more zen “chemotherapy cleanses your body, it is there to prevent a recurrence. Go ahead and with a smile ;)
How did you live the day before, the day itself, the days after chemo?
and what were your tips?
No real tips either, I was counting the chemos to get to the end. I mainly communicated with my loved ones by text message during my chemo. The days after chemo were complicated, a good week to hope to eat properly again through the tube. I always told myself that there will be better days.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
At the top, always a kind word. The resuscitation staff really took care of you. As soon as the intensive care nurses had a little time, they would stop by to chat, braid my hair, etc. They even explained to me how they monitored patients with IT. My surgeon is top notch. He gave me a nice transplant. I had very good follow-up. I knew all the details of my operation, I was even shown around the intensive care unit and introduced to the nurse who would take care of me when I woke up. I have check-ups every 3 months and nutritional monitoring.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
No, very little apart from a little homeopathy
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I cleared my head by listening to music, that was my escape and then reality TV is nothing better to think about nothing ;)
I also spent hours exchanging text messages with my friends :) and I always agreed to have visitors. It allowed me to have a social life.
I immersed myself in genealogical research on the internet. I spent hours finding my ancestors.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
I have quite a few scars on my neck and arms. So, I moisturize them daily with cream and I even do scrubs. I use aloe vera gel and rosehip oil.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
My everyday look during chemo and radiotherapy was braids ;) otherwise jeans and sneakers.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
sophrology before each chemo
4/ hair problem (eg: did you wear a wig, scarves, hats)
I lost a lot of my hair but I always had it. In fact, my hair loss was not due to the chemo but to the stress of the illness. They started falling 3 months after the announcement. So, I bought RF80 Concentrated Anti-Hair Loss Treatment from René Furterer . It is a super effective treatment but not immediate. You have to wait about two months to see a clear improvement.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
Yes, I had a major operation and as a result visible scars on my neck and my right arm. I also have a swollen face. I adapted over time. I wear a lot of scarves around my neck to hide my big scar and for my arm I most often wear a lot of bracelets. I wear different makeup to try to elongate my face. It reduces the hamster effect on my cheeks a little lol
At first, I was afraid that people wouldn't understand me. It happened but I'm not discouraged. I talked a lot with my loved ones and frankly today even if my voice is not like before I am understood well ;) There are still words that I cannot pronounce.
On the other hand, I still can't answer my caller on the phone. It's easier for me to see the person. I can tell if I'm understandable, if I'm speaking too quickly....
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
people don't say that meanly but the simple phrase “if you need help or anything I'm here”,
well yes ok but he doesn't take action when you go to the hospital for your chemo for example no one comes with you to support you.
People who talk about their lives, their problems, but in the end who don't ask you how you are.
How did your loved ones support you?
Alright. Family and friends are my driving force, they’re what kept me going when I wasn’t doing well. I have really great family and friends (if you're passing by I'll love you ;) I have a great mom. She lived with me for a year. She lives near Nantes and I live near Cannes. She is always there, to accompany me to the doctor etc. A top mom ;)
And what advice could you give to loved ones who accompany a K fighter?
You have to stay yourself, not change your daily life. The person with K should not be shown to be ill. Talk about everything and nothing, be present, accompany him to the hospital for chemo etc. And above all, give him lots of love because that's half the cure.
Do you find out about K on the internet?
At first yes, now no. Every person is different so I prefer to focus on my emotions.
If so, does it make you feel good?
No, we read everything and anything. It didn't help me and my cancer is rare in young people.
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..?)
oula... lots of things.
Now I live day by day. I no longer dwell on details. I enjoy precious moments with my loved ones. I have pleasure ;)
On the other hand, I am more selfish. I think of myself before thinking of others (before my cancer it was quite the opposite).
As much as some people surprised me during my treatments, others disappointed me a lot with their behavior. They walked away, not hearing from him. I can understand, illness is scary. On the other hand, I decided not to dwell on them. For me, it's not worth the hassle ;). Life is too short. I don't care if people think I'm nice or not. I am what I am. Before my K, I always went with people. Today, I live my little life with my loved ones. I leave the people who hurt me. I also ask myself fewer questions. I live day by day. In short, I'm enjoying life. Finally, I'm more fulfilled personally....
Free field ;)
tell us what you want (which might not be in my questions):
Medicine cannot find the origin of a K and how to treat it. So, I made up my own mind. Everyone interprets it as they wish. For my part, the factors triggering my K were: a lack of communication, a painful breakup, a dose of stress, fatigue....and that's favorable ground ;)
I can't eat like everyone else. That is to say that I eat everything but only in the form of puree, soup, yogurt. At first it was really hard. I was frustrated especially when I had my tube to feed me through my stomach. Now I have adapted. It no longer does me anything, I even cook for my loved ones, on the contrary it gives me pleasure. We must never despair, we have an incredible capacity to adapt.
Today, I am part-time in therapy. I have a job adaptation. I am still in contact with customers but I do not answer the phone. At first, I was apprehensive because I don't speak correctly, but as time goes by it gets better and better. You understand me ;)
When I look back, I am proud of myself, everything is always possible, you should never give up. Life has some nice surprises in store for us...my last biopsy in November was good...so enjoy ;)
Thank you again, Stéphanie, for this beautiful testimony full of hope and sincerity!
Lots of beautiful positive thoughts to everyone!!
@ very quickly