ITW n°28: Sarah - K fighter.
The bubbly Sarah gives us today her story and her tips, on her war against her Ewing Sarcoma, today Sarah has been in remission for 4 years :)!!
Hello Sarah,
First of all, thank you very much for agreeing to share your K's story, it's really courageous and generous of you :)
Together we are stronger !
Let's get started:
Who are you ?
First name: Sarah
Age: 30 years old
Profession: 3rd year nursing student
Where do you live: near Pau in the Atlantic Pyrenees
Why do you agree to share your story today?
Why not... it can help, entertain, make you smile or cry...
What are your qualities (in a few words)?
Kind (too much so it seems..), gentle and funny!
What are your passions (in a few words)?
My nursing studies, my little family (my partner and his 9 year old daughter, my sisters and my father) and my friends (few but so perfect!)
Then the mountains and canyoning especially with my boyfriend!
Can you summarize your (K fighter) story for us?
What K (what cancer - grade if you wish / stage ditto):
Ewing's sarcoma at the level of the sacrum (bone at the base of the spine) only problem, it's a Cancer that only children have and only on the tibia... Too bad, I'm 20 years old and it's on the sacrum ! JACKPOT!
When was it discovered?
November 2005
How old were you ?
I was 20 years old
Under what circumstances was it discovered?
At the age of 20, I was hospitalized for sciatica which did not go away despite treatment. A month in a wheelchair later, I was told of my Cancer in an unknown language and asked to make my choice for my first chemo between Paris and Bordeaux for departure in 6 hours… Go to Paris…
If you are currently undergoing treatment, or in remission (for how long?)
Remission for 4 years
What treatment did you have?
chemo:
yes: name of the cocktails I don’t remember…. Sorry
radiotherapy: if you have had it:
Yes
operation if you have had one (how long were you hospitalized):
yes, heavy operation lasting 13 hours, with bone autograft. My left fibula was removed and grafted in place of the part of the sacrum they removed. I have a large scar on my left calf, stomach and back.
I also had a stoma for 3 months to optimize the graft…
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 ;))?
In Paris I saw a surgeon while my very first chemo was flowing through my veins... He explained to me the operation he was going to perform on me: cut my sciatic nerve and make me disabled for life with my right foot which would hang and be straightened by an external splint for life. He asked me if I had a question!
I asked to leave his office and be transferred to Bordeaux, to the Bergonié institute.
A surgeon from Bordeaux came to see me one evening in my room at 10 p.m., he took an hour of his time to talk to me and explain the heavy operation he had planned for me and not to handicap me... I I loved it from the start! I AM NOT DISABLED!!!
Give your opinion, your feelings, your feelings…. It's your body, your life so it's up to you to choose! The proof ! ;-) Doctors are human beings!
1/ chemo: the helmet, your affinities with the nurses,
how did you live the day before, the same day, the days after?
and what were your tips?
I never had the helmet, I lost my hair from the first chemo and I shaved my head after the second
The day before I didn't want to go...
The same day was like every other day! strangely zen...
The days after: I had 4 days of non-stop chemo every 15 days!
So, during chemo I was sleepy, nauseous, tired and in a bad mood.. I ate absolutely nothing during chemo, only blue mister freezes and cold water!!! it's a mystery !
Back home: still a Mac!!!!!!!!!! then very tired two days after returning, still!
2/ hospital: nurse / doc / caregiver contact
Excellent contact, very good memories despite the context, great people that I will never forget!!!!!!!!!!!!!
3/ alternative medicine, if you have done so
No not done
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I listened to a lot of music and saw a lot of my friends at the time
What practical tips can you advise us?
1/ beauty: magic creams / scars & co
I was recommended a cream for the face and scars which is fabulous!
It's a restorative and healing cream that we recommend to women who have rays on their face... It's CENTELLA ASIATICA cream! only plants… since chemo, my skin reacts to everything except organic and plants! It's still my go-to face cream and it's great!
2/ look, your favorite look chemo, hospital, every day to feel good
Very soft wide pants, t-shirt and very soft jacket! so sweet!!!
3/ daily (sport, food & co)
Fruits, vegetables… and above all what we like to eat!!! :)
Walking is good for the body and the mind!
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 wear a wig. I wore scarves like the women of the desert... I had them in all colors to match my clothes!!
I put on wooden jewelry, wooden necklaces and I continued to make up the right eyelash and the two left eyelashes with mascara!!!!!! lol!
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
- This is the first time I've seen a live Ewing sarcoma! (radiologist)
- You are losing your hair ma'am, it's nonsense (hairdresser)
- At least chemo is a diet (I lost 15 kg during chemo) (ex friend)
How did your loved ones support you?
My family has always been there for me and they are amazing!!!! they listened to me and supported me!
And what advice could you give to loved ones who accompany a K fighter?
Be present, attentive but not stifling!!!
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..?)
We are told that we will enjoy life if we heal… but it’s not that simple!
Personally, I mourned the loss of my life when I was told that I didn't have much of a chance of getting out of it, so once you're told it's okay, you don't know. not much more how to enjoy life…. Still afraid of the return of the K..
But my vision of life has changed, I try to worry less about trivialities but I remain me! I try !
Physically, I have changed (scars, look). I am more limited in my activities than people my age because of my back and the many pins inside... but I know myself like never before and I know how to interpret my body.
I'm fully into my nursing studies... revenge? !
Did this ordeal push you to change your life? (with new projects, changes in your life?)
Yes….. My friends from the time are not so much anymore (with some exceptions).
I wouldn't be a mother at the same time as my friends my age... I would have graduated at 31... but never mind... that's my life and nothing else!
Free field ;)
tell us what you want (which may not have been in my questions):
I was full of dreams and projects when I was diagnosed with this K… MY CRAB…
Today, 10 years later, it seems like it was yesterday in my head. I still have dreams and plans but they are no longer the same!
They are better, more passionate, more desired!!!! I have had a golden darling for almost 5 years, who loves me and accepts me despite my marks of war against my crab!
LIVE !!! it is the most important ! <3
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Thank you again for your testimony and for sharing your K/tips ;)
Lots of nice positive thoughts
See you soon
Charlotte
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