ITW n°95: Estelle - K fighter (K of the tongue).
Hello ,
Today the very passionate and luminous Estelle, 23 years old, a recent fan of "Bollywood" dance, gives us her fight against a K of the tongue, fought in 2015, discovered in incredible circumstances, during her cancer internship. ENT .... life sometimes reserves improbable "surprises"...
Now in remission, Estelle wishes to testify because perhaps others will recognize themselves in her story, but above all in her inspiring strength, and her lesson in resilience. Above all, you will discover the intense desire to live of a young woman, full of resources and tips. Who speaks to us with intense emotion and great accuracy, about the needs that we can also feel after the battle of our life, when the word remission has fallen... which is not so easy to manage.
Another great boosting discovery.
Let's get started:
Who are you ?
First name: Estelle
Age: 23 years old
Profession: Speech therapist
Where do you live: Paris
Why do you agree to share your story today?
I decided to share my story firstly to express all my feelings, to put words to all these events but also in a desire to inform, whether other people with cancer or their loved ones. My desire is to make people understand what we can feel in these difficult times. Of course, this remains my story, my feelings and I don't pretend to "past" all this on other people, but perhaps others will recognize themselves. I decided to accept my story, my cancer and all that it implies.
What are your qualities (in a few words)?
Those close to me define me as an enthusiastic, energetic young woman (maybe even a little too much... I have trouble stopping), helpful and generous.
What are your passions (in a few words)?
In truth I like many things but to name just a few and the main ones, I would say that my first passion is food!
Then I really like to laugh and share time with my friends.
Otherwise in terms of activities I like scouting, traveling, reading, swimming, and my brand new passion: Bollywood dancing!
What K (what cancer - grade if you wish / stage ditto):
Cancer of the base of the tongue (basically the back of the tongue, the part which is at the very back and which we almost cannot see) without metastases.
When was it discovered? How old were you ?
Discovered in November 2015, I was 22 years old.
Under what circumstances was it discovered?
That year, I was in my last year of studies and doing an internship in an ENT cancer department. So I knew very well the symptoms of cancers in this entire area (mouth, throat, etc.). I started to no longer feel the taste of food, to feel a sort of discomfort when eating. I was told a lot that I was obsessed with my internship, that I saw symptoms everywhere, ... In addition, ENT cancers are quite rare and mainly affect older people with a history of tobacco and alcohol. Basically nothing to do with me who has never smoked and who drinks very little!
I still decided to go for a consultation (and I did well because we were able to catch the cancer at a not too advanced stage) and the verdict is in!
If you are currently undergoing treatment, or in remission (for how long?)
I've been in remission for about a year and hope to be for a long time!
Can you summarize your (K fighter) story for us ?
My story begins with a crazy coincidence: finding myself doing an internship in an ENT cancer department... I think it may have saved my life.
Then it's the whirlwind, examinations galore, diagnosis, surgery, chemo, re-examinations,... And finally remission.
In all of this, one thing dominates: the desire not to give up and not to “show”. I took on a lot, kept things a lot and since I didn't lose my hair, a lot of people didn't know I was sick. Apart from my weeks of chemo, I continued my studies, my internships (even the one in oncology and that gave me a lot of strength!). I think above all I wanted to remain a person and not become a cancer. I didn't want to let him take anything from me, especially this last year of studies for which I had worked so hard for 5 years! And I succeeded, I completed my year, I graduated with the best honors possible. I'm very proud of it, but I paid the price.
Looking back, I think I was a bit in denial about everything that was happening to me, I didn't want to accept. It was a few months after the announcement of my remission that everything came back to me and it hurt a lot! Cancer changes a lot of things, it changed me and I had a hard time accepting that I will never be the same again and neither will my life. Illness opens my eyes to many things, I saw my whole world collapse, everything I relied on, my certainties, gone. And when we come face to face with ourselves but we no longer recognize ourselves, we no longer really know who we are and that obviously causes a lot of anxiety! Since then I have worked a lot on myself, with a good deal of depression in between, but I am getting better, and I continue to fight to be who I want to be. I decided to enjoy, to do crazy things that come to mind, to try new experiences, in short to live!
What treatment did you have?
chemo: if you have had it: (name of cocktails / number of sessions)
I participated in a therapeutic trial of oral chemotherapy (so pills to take). I had three two-week courses spaced 3 weeks apart of a great cocktail based on Cisplatin and 5FU.
radiotherapy: if you have had it: (number of sessions)
No radiotherapy
operation if you have had one (how long were you hospitalized):
I had surgery to remove most of the tumor. It was a small operation.
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):
My joker card is my mom, who was there during all the chemo moments. She pampered me, smeared me with cream twice a day, prepared great fruit salads for me (the only thing that worked!), … And my father and my sister, who stayed at home, who Skyped me almost every day (they live in the South). Words, text messages, calls from loved ones, etc.
How did you live the day before, the same day, the days after chemo?
and what were your tips?
The day before there is apprehension, we know what is going to happen and we dread it!
The same day there is nausea and pain. Afterwards it's long days of sleep to recover and counting down the days until the next session.
My tips: tons of cushions and hot water bottles to relieve my pain, a huge pot of cream (especially odorless) for drying out the skin, and patience!
2/ hospital: (e.g. contact with nurses / doc / caregivers):
I think compared to others, I haven't been to the hospital much. I experienced all of this a lot more from home. As a healthcare worker myself, I think it gives me a different vision of hospitals and the people who take care of me when I am a patient.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I did a lot of acupuncture and Chinese medicine with a doctor I knew well and in whom I completely trusted. It did me a lot of good, it helped me a lot to calm the pain and the burning sensations.
Otherwise I did a little yoga when I had the energy and meditation.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
To take my mind off things, I made myself a good meal because I knew it was going to be a hassle afterwards! I was watching a good comedy film snug in my bed.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
I used the Triderm Alfa Base Riche cream a lot, for me it was the only one that I could tolerate in terms of smell. And she's really, really, really rich. Otherwise for the skin also, Bi-Oil.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
My look was very comfortable leggings with a big, all-white, soft fleece vest with a fleece hood. Very soft Eskimo slippers and on top of all that a good, very soft blanket too! In short, just sweetness!
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
I slept a lot, at least 14 hours a day. The rest of the time I tried to entertain myself with series and films.
I didn't do sports because I was too tired and I hurt everywhere. In terms of food, as long as things were going well, I ate whatever I wanted!
4/ hair problem (eg: did you wear a wig, scarves, hats)
I didn't lose my hair, but it was still less full, flatter and less shiny... I tried to do masks regularly and pamper it.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
I was very concerned about this aspect, in fact I was very anxious about the idea of losing my hair. I did everything not to look sick.
I didn't want to become a cancer and I still don't want to. I wanted to do “as before”, as if nothing had changed. Sometimes I went beyond my limits in terms of fatigue and I paid dearly for it.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“You know, you're lucky though, it could have been worse. People die from it every day. " NO KIDDING !
“It's okay, you look normal, you don't look too sick. »
" But it is okay ? Are you living it well? »
“You know, I understand you, right now I hurt everywhere. A bit like aches and pains you know? » Yes I see clearly, but how can I tell you that I have the impression that my bones are twisted and broken inside my body so your aches...
And many others …
How did your loved ones support you?
My family was great, they handled it all very well even though I know it was very hard for them too. In terms of my friends, I had a little bit of everything. Some have been incredible, real resources for me. Others were more frightened I think and did not know how to react, how to “take me”, what to say,…
It was difficult for me to deal with.
And what advice could you give to loved ones who accompany a K fighter?
Be yourself, be sincere, that’s the most important thing and that’s what we remember. It doesn't matter if you don't know what to say, listen to us, that's what we need most. Make us laugh, tell us your little stories like before. In short, be natural and don't be afraid, it's not contagious!
Do you find out about K on the internet?
I did it and sometimes regretted it afterwards. There really is everything so you have to select the sources of information carefully.
If so, does it make you feel good?
It all depends on what I read, the blogs, the sharing pages are really good. It's a real driving force for me. Unfortunately we see that we are not alone but somewhere other people are going through the same thing and they are getting through it so that encourages you, it makes you want to fight even more!
If so, what would be the useful (internet) links that helped you during K?
I don't have all the names but of course:
-Mister K fighting kit
-Fuck cancer
…
What has the K changed in your life...?
This is a very big question!
First of all, cancer has changed me, in who I am, what I love, my way of living,… I am no longer the same Estelle inside. And this new me is still under construction!
I think I dare more things and I live them to the fullest. For example, when I had the right and the energy to do sport again, I did a lot of research to find the acidity that would please me. One evening I saw an Indian dance video on Youtube, two days I attended my first Bollywood dance class and honestly I've loved it ever since!
Cancer allowed me to give myself priority again, to allow myself to take time for myself, to accept having limits, to not be able to take on everything, to please everyone,… Somehow it is very positive! I also learned to refocus, to prioritize things, to stop doing things that didn't really make me happy, that I did out of obligation. I also stopped idealizing certain relationships and certain people, it hurts but it's necessary.
I try to enjoy and let the little annoyances pass, but it's not always easy.
Free field ;)
tell us what you want (which might not be in my questions):
What I would like to say is that cancer changes us, it changes everything and we need help. I would like to send a message to people with cancer or their loved ones, don't let the disease win and make you a cancer. We are above all people and we need love and presence.
Another thing that is very important to me, cancer does not stop when you announce remission. At that moment, we open a new page, we have to rebuild everything and we need support. Don't be afraid to ask for help, whatever it may be! We must learn to live with the fear, with the after-effects, with all the changes that cancer involves. All this is very little known: in remission we inevitably get better. We have to smile, be happy, be full of energy, ... But sometimes we can't, the hurricane has broken everything inside. You have to take the time to rebuild yourself.
NEVER GIVE UP! Together we are stronger. Courage to all, you are wonderful!
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Thank you Estelle, for the sincerity of your words, we wish you so many good things for the future.
You can leave comments below.
If like her, you want to tell your story, your projects and share your tips, go here , send me your questionnaire and 1 photo of yourself so that I can draw you ;) to: interview@mister-k-fighting-kit.com
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NEVER GIVE UP!!
Charlotte