ITW n°38: Mathilde - K fighter.
The superb Mathilde, 17 years old, tells us about her fight against Osteosarcoma which she fought and has now been in remission for 4 and a half years "total recovery soon"!!!
Hello pretty Mathilde,
it's yours ;)
Let's get started:
Who are you ?
First name: Mathilde
Age: 17
Profession: Terminale S
Where do you live: Asnières
Why do you agree to share your story today?
Because I think it can help affected people feel less alone, and above all I want to prove that it is possible to recover from it :)
What are your qualities ?
I have character
What are your passions (in a few words)?
The piano, the theater, and listening to music
What K (what cancer - grade if you wish / stage ditto):
Osteosarcoma located in the left fibula and a second in the right femur
When was it discovered? How old were you ?
The diagnosis was confirmed on May 7, 2010 on my birthday, I was 12 years old.
Under what circumstances was it discovered?
I noticed that my left leg was strangely swollen, at first I didn't say anything, I didn't have any pain, and one day I showed it to my father who made an appointment with the general practitioner, then radios, Necker and Curie.
If you are currently undergoing treatment, or in remission (for how long?)
Remission for 4 and a half years (soon “total cure” :))
Can you summarize your (K fighter) story for us ?
I first did a biopsy at Necker, which confirmed my osteosarcoma, then I was referred to Curie, pack placement, start of chemo which did not go badly.
Then, two operations:
- one to amputate the affected fibula (but I still have the tibia, so I still have my leg :p)
- one to remove the diseased part located on the right femur, and put a plate to consolidate. Long live the pain, but I got over it, I was very well looked after!
After more chemo, then one fine day remission, which lasts for the moment :) I sometimes feel a certain nostalgia for the hospital.
What treatment did you have?
chemo:
Methotrexate
Adriamicin
VP16
Cis platinum
operations if you have had them (how long you were hospitalized):
- Biopsy (3 days of hospitalization)
- Installation and removal of the pack 4 operations in total (my first pack failed me)
- Fibula amputation (10 days of hospitalization)
- Removal of the diseased part of the femur (12 days of hospitalization)
- Straightening of the left ankle (for “practical” mobility reasons) (10 days of hospitalization)
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):
Accept the chemos and do everything to have a “good time”. We're tired, we're obviously not in good spirits. But all the same, get dressed, keep yourself busy, leave your room if possible, even if only to take a walk in the corridor... :) Have a little fun with the nurses (I had very good affinities with them) :)
How did you live the day before, the same day, the days after chemo?
and what were your tips?
The day before: no apprehension, almost a little haste, because each chemo attacks the cancer, and pushes it a little further away from us!
The same day: sometimes a little vomiting, otherwise no worries, we take care of what we can!
The days after: few side effects, a little fatigue, rarely fever, but in any case always good (at least, moral)
2/ hospital: (e.g. contact with nurses / doc / caregivers):
I had very pleasant contact with the nursing staff, I found them very kind and efficient. I didn't feel at all embarrassed talking to them about what was wrong. They were great!
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I saw a lovely psychologist, but I told her more about my day than anything else, since at the time I wasn't particularly psychologically affected by the circumstances, at least I managed to get by :)
Otherwise, my parents and my best friend. Always present :)
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I talked with my parents, I watched movies, I did the best I could to get on with my life
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
Moisturize the skin well with a gentle cream (eg: Nivea); If you like to apply nail polish, don't hesitate, it's always nice to have beautiful nails and to feel beautiful even when you're sick :p
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
My favorite clothes, the important thing is that we are well dressed, whether our style is dress, leggings or jogging
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
I did physiotherapy every day after my operations, meditation I never tried, and the readings were essentially the complete Lou comics on repeat :p
4/ hair problem (eg: did you wear a wig, scarves, hats)
Throughout my illness, I had a hard time accepting the absence of my hair. So I wore a wig almost all the time, and at night I wore bonnets
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 didn't want them to see me as weak or different. That's why I wore a wig. Over time I learned to ignore the views of others, and even to understand them. After all, I think they are just curious ;)
Looking back, I tell myself that there was absolutely no need to worry about their looks. If I had to do it again, that would be the last of my worries.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“Good luck”: Yes, I have it, it’s okay, no need to repeat it to me a thousand times
“Well, it’s okay, you don’t have your cast anymore, get up!” »: So no... I'm going to need months of physiotherapy
“Would you like to take off your wig to see, I'm curious”: Live with the mystery because I will NEVER take it off in front of you, especially after this sentence :'D
But I would like to point out that I absolutely do not blame these people, because they thought they were doing the right thing and didn't realize :)
How did your loved ones support you?
My parents were always there, reassuring me and making me think of other things;
My family a little further away constantly checked on me and called me often;
My best friend came to sleep at my house, she had absolutely no pity on me and made me laugh and have extraordinary times
And what advice could you give to loved ones who accompany a K fighter?
Do not pity the patient, tell him unusual, slightly funny stories about everyday life, do not talk about his “problems” while the K fighter is fighting to save his life (this generally goes badly ) and… Simply be there :)
Did you find out about K on the internet?
No, my doctors weren't hiding anything from me, so there was no point
If so, does it make you feel good?
If I had done it, it probably would have freaked me out more than anything else.
What has the K changed in your life…?
It really put things into perspective for me. I became aware of the value of life, and the importance of not wasting it. I was able to recognize my true friends, and finally, it reassured me in the choice of my vocation: doctor :p
Free field ;)
tell us what you want (which might not be in my questions):
If you feel sluggish during your treatments, think about the future, that one day, all this will probably be behind you. That's how I held on. And, once it's over, it may seem strange but you will undoubtedly have a big drop in morale, even anxiety attacks. This is what is happening to me. I just wanted to clarify that this is completely normal. But in any case, keep fishing and fight. After all, we're K fighters, right? :p
Thanks to the entire medical team who saved me.
Thanks to the Matelots de la vie association which gave me a wonderful journey just after my illness
And finally thank you to my loved ones <3
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Thank you again for your testimony and for sharing your experience, you are amazing, what a great lesson in life force!
If like Mathilde you want to tell your story 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
Lots of beautiful positive thoughts and all my wishes for this new year, full of love and strength!!
See you soon
Charlotte
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