ITW n°92: Marie - K fighter (K of the tongue).
today the luminous Marie, 38 years old, comes forward to tell us about her K of the tongue (the treatments for which ended in February 2016). The story of a mother who never stopped thinking about fighting for her children, the image she gave them to remain a wonder mother, and reading it seems successful.
Despite a story with significant and mutilating physical after-effects, we remember above all an overwhelming (even inspiring) dignity, that of an inveterate positive person (and then a bit of a compulsive buyer too hihi), passionate about trivialities, which in reality are not trivialities. , Marie defends what I also fight for, how coquetry is a driving force when we go through the worst, and that thanks to that and of course the love of our loved ones we draw resources from warriors who allow us to move mountains.
Thank you Marie for this beautiful testimony full of hope and beautiful vibes. Another great lesson in resilience.
Very nice discovery.
Let's get started:
Who are you ?
First name: Mary
Age: 38 years old
Where do you live: Finistère
Why do you agree to share your story today?
because I feel ready now. I think it will do me good and maybe it will help other people.
What are your qualities (in a few words)?
generous, funny and courageous it seems!
What are your passions (in a few words)?
reading, writing, sewing, … my children and my husband!!
What K (what cancer - grade if you wish / stage ditto):
squamous cell carcinoma of the tongue if I believe what I have read, stage 2 or even 3
When was it discovered? How old were you ?
on October 22, 2015, I was 37 years old
Under what circumstances was it discovered?
I had paid little attention to this canker sore since it started when I was pregnant, then I gave birth and took care of my baby in addition to my 2 daughters. But I was starting to have trouble speaking, eating and I had started to lose weight. So after seeing several doctors several times, my GP, who sent me to an ENT, who asked a dermatologist for his opinion, who referred me to the ENT, they ended up doing a biopsy.
If you are currently undergoing treatment, or in remission (for how long?)
I finished radiation and chemo on February 12, 2016. I'm waiting until February 12, 2017 to be told I'm in remission!
Can you summarize your (K fighter) story for us ?
You should know that this type of cancer is most often found in men over 60 who are alcoholics and smokers.
It's the story of an ordinary drama worthy of bad American films!
My journey began with surgery 2 weeks after diagnosis. It took 7 hours of surgery to remove 3 cm of my tongue! I was in intensive care for 24 hours and had a tracheotomy for 4 days. No normal diet but through a nasogastric tube for 10 days, then I was able to eat soft foods: purees, flans, yogurts…
I was operated on a second time, for the second surgical phase, to place a jejunostomy in anticipation of feeding difficulties linked to the rays, and to install the implantable port.
In the meantime, to make matters worse, I also went back to the operating room to drain an abscess that had developed just under my chin at the end of the scar.
I started chemo and radiation on December 29th, and finished on February 12th. The doctors made the decision to “bombard” me because I am young and to limit as much as possible all the risks of recurrence. I had no metastases, just 2 affected but encapsulated lymph nodes.
The rays burned my throat, mouth and skin and caused very serious yeast infections which prevented me from eating for 3 months. I lost a lot of weight… but not my hair!!!
Today I eat almost normally but the treatments cause side effects requiring other treatments, etc. I still have medications, deficiencies and I have had high doses of morphine (among other painkillers) that we decrease little by little.
I am monitored every 2 months and I do blood tests and other various checks! I do rehabilitation, speech therapist and physiotherapist, but it's really for comfort today. When I speak you can't guess that 3 cm of my tongue was removed!
I had my jejunostomy removed in June and my implantable port 1 month ago.
What treatment did you have?
cisplatin 3 sessions with hyperhydration before and after each time
33 radiotherapy sessions
tongue surgery in two stages: removal of the tumor initially with creation of a cheek flap attached to the healthy tongue (basically an autograft) then 1 month later release of the flap, i.e. to say that it was detached from my cheek. To be able to remove the entire tumor, a molar and a premolar had to be removed, and my jaw dislocated. But without that, I would have had to split my jaw in two by my chin. I was hospitalized for 2 weeks the first time, and 24 hours the second time.
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):
I'm very lucky not to have lost my hair! On this point I can't advise anything! But I talked with other women who were there at the same time as me and we laughed a lot about what we were experiencing. We made a mockery of the situation. Despite the kindness of the nursing staff, they are very busy, so do not hesitate to seek advice or just chat with the people who are there to receive treatment, and be accompanied by someone if you feel the need. You must learn to accept support and help from those close to you, even if it is difficult, it is essential! However, I am not a champion in this area!
How did you live the day before, the same day, the days after chemo?
and what were your tips?
With hyperhydration it was rather restrictive. I preferred to stay at home rather than being hospitalized the day before. They put the IV in around 8 p.m. and took it off me the next morning. I did chemo and the nurse came back as soon as I got home to put an IV back on, then the next morning to remove the IV and the needle. For the first chemo I was terrified. I was afraid of being sick. But I tolerated them very well thanks also to all the preventative treatments that doctors prescribe today. But it must also be said that I only had 3 treatments. I tolerated all 3 of them well.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
I was taken care of by extraordinary people. They took their time with me, responded immediately when I needed something. Beyond the medical care, they showed incredible kindness and helped me stay strong and cope with all of this.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I used a magnetizer to try to limit the effect of the rays. I prefer to tell myself that it would have been worse if I had done nothing... but I'm not convinced... although I believed in it.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I did a lot of anti-stress coloring! I loved it! it was meticulous work that made the time pass more quickly! But I was also exhausted and sleeping a lot. I watched a lot of television too. Particularly the entire first season of “once upon a time”. As soon as I could, I went out to breathe the sea air! and then I did what I could to take care of my children. Let's say that I was witnessing their lives without really being able to do much, but at least I was there!
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
Because of the rays located at the neck level I was not allowed to put anything on my face except the eyes. So I focused on nail polish, eye shadow and mascara for doe eyes, clothes, and of course my hair since I didn't lose it. You can't say that I had flamboyant hair, far from it! It was even more of a disaster, but at least I had my hair! I realize how lucky I was! Even if I only went out to go to radiotherapy I took the time to dress well. It helps you maintain a positive self-image.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
At home I made myself comfortable. I admit it was T-shirt and jogging pants. I also had the probe attached to my stomach which is not very elegant. But to go out, it was jeans, a top and a jacket, and heels! I was also limited because I was only allowed to use natural materials: cotton, linen or silk! so a little scarf that goes well for hiding burns! All of this was super important to me! It allowed me to maintain a positive identity and image.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
My general condition didn't allow me to do sports, but now I've taken up dance classes, which I probably would never have done if I hadn't had this cancer! It frees my body and mind! and it contributes to my rehabilitation!
I also started reading again. For months I no longer read even though I am a real bookworm. I rediscovered this pleasure, and I started writing very intensely even though I had only done it occasionally. I exorcise!
Diet is at the center of my illness. I didn't eat for weeks and my tastes changed a bit, but even with chemo I didn't lose my taste and my tongue surgery didn't take away that privilege either. On the other hand, eating, which was an exquisite pleasure for me (I'm a terrible gourmand to begin with!), has often become a chore. It's getting better but it will still take time. I eat very slowly and my salivary glands have been very damaged from the rays. There too it is improving but it takes a long time to recover.
4/ hair problem (eg: did you wear a wig, scarves, hats)
I didn't lose them, and I didn't ask why! The doctors warned me from the start. Now I would like to know why.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
It was especially the look of my loved ones that mattered to me. That of my children in particular. I was afraid they would be scared. And my husband's. Above all, I didn't want to inspire pity in anyone. It would have been unbearable for me. I had become a weak and fragile, frail little thing, at least in appearance and I especially didn't want to be associated with this image so on the outside I made sure that it was seen as little as possible.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
I haven't had any unpleasant comments except once. The person didn't realize what he was saying. She had let slip a systematic screening exam that she had to do and I warned her even though she's not my type, but she's a person very close to me. She replied, “In any case, it can be treated well now. » I was shocked by her response, even though she saw me at the worst of the treatment.
How did your loved ones support you?
All my loved ones were very present. Many people in my family put their lives on hold to help us cope with everything and give the children as normal a life as possible. They were wonderful, each naturally taking their place and giving me mine when needed and when I could. My husband carried everything at arm's length for several months. It was all the more difficult as he has important functions and a lot of work. He was also very well supported by his colleagues. I received a lot of testimonials and encouragement from people I didn't even know. I was very touched by it and it helped me a lot. My work colleagues have always been there in one way or another. We also had some disappointments. People we thought were close and who didn't come forward, or very little. It allows you to sort things out a little…
And what advice could you give to loved ones who accompany a K fighter?
It's not contagious! And morale is the first strength to heal and face treatments. If you don't know what to say, say it! just say “I’m thinking of you!” » Just knowing that at some point during the day someone thought of you and wondered how you were doing warms your heart.
We think that everyone talks about cancer freely today, that's not true. There is a monumental taboo on this subject. Many people don't dare say the word! It feels like Harry Potter when you don't have to say the name of the evil wizard! “he-whose-name-must-not-be-spoken”, Voldemort lest he appear. It's exactly the same thing!
It probably depends on each person's temperament, but talking about it helped me a lot and still helps me. I have no problem telling stories if I'm asked, but without being trashy either, I don't use filters. I tell it as it is, without pretense.
Do you find out about K on the internet?
at the very beginning yes but not at all afterwards. There are too many things on the internet and we cannot make generalizations. Each case is unique and we are quick to misinterpret certain things. But I work in the medical field and I have some foundations that maybe make it easier for me to understand certain things, and I also have doctors in my family. And then the doctors who take care of me are quite available and attentive and answer my questions quite easily. It is enough for me.
If so, does it make you feel good?
the few things I read rather terrified me!
What has the K changed in your life...?
All ! or almost ! I realized that I was much stronger than I believed and also much more loved than anything I could have imagined. It seems that I am brave!
I learned about suffering, fear, sorrow, injustice… I could go on and on, but I decided to only keep the positive. I learned even more love, patience, my attachment to my children. I decided from day one that I was going to fight like a lioness for my children, because, even if I am not the best mom in the world, I am their only mom. I measured the love my husband had for me and the panic fear he had of losing me. I measured the self-sacrifice of my parents in the face of their suffering child. I learned to be calm.
I gained confidence and self-confidence. I decided to no longer bother with things and people that annoy me. I learned the value of time and its elasticity!
I decided that it would be a springboard to be better, that it shouldn't all be in vain. I have decided that I will not be bitter or angry, that I will not hold a grudge against the whole earth, that I will be kind to others. Being sick does not give you the right to be mean or pretentious. I wasn't before, but I now have a heightened awareness of how lucky I am to live, of the wonderful family I have, of the magnificent life that is available to me. I've gotten into the habit of saying that even shit serves as breeding ground for beautiful things to grow.
I learned to live intensely, to be master of my life, I learned happiness.
Despite everything, there remains a fragility that I didn't have before and sometimes the feeling of an abyss in front of me into which I could fall at any time. I guess it's called fear!
Free field ;)
tell us what you want (which might not be in my questions):
I'm not at all good with computers, so I don't really know how to send photos! So I'm going to describe myself! I'm small (1.57), I now weigh 50 kg (after 3 pregnancies that's not bad! Well, there was cancer that happened, okay!). I have green eyes, not very light, which turn gray on stormy days, I am brunette, short hair at the back, asymmetrical plunging bob in the front (I know it looks weird but it's rather pretty, well I think…), I almost always smile in photos because it seems that I have pretty teeth! I have scars on my neck and a few burn marks but in reality it's not really visible. I'm not disfigured!
What else can I say? It's not so much the physical aspect that is important in the end. I love clothes (especially since I started dressing in 34-36!) and I'm crazy about handbags and shoes! I wear pants, skirts, dresses, necklines in front, necklines in back, peter pan collars, crew necks, loose and tight. In short, I wear everything as long as I like it!
I have become a bit of a spendthrift, but not just for myself! I like buying things for others.
I like to laugh, especially at myself!
I love reading and meeting people in stories; I don't like TV as much as I used to. I feel like I'm wasting my time!
I am a good living person. Like - share. And at the same time I love the softness and calm of my cocoon, I also like being alone sometimes. Not always easy with 3 smurfs!
I live by the sea, I like to smell its scent in the morning and go look at it even for a few seconds.
There you go, that’s a little bit of me.
Thank you for giving us the chance to tell our stories.
I've been doing it for myself until now and I'm going to continue writing. Maybe one day it will turn into something concrete. It's a bit of my secret dream!
I hope it wasn't too long and boring!
Thank you Marie, for this break which gives strength, and above all keep writing!
You can leave comments for Marie below.
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NEVER GIVE UP!!