ITW n°34: Wonder Sabou - K fighter.
Hello Sabrina / Wonder Sabou,
First of all, thank you very much for agreeing to share the story of your K, what a beautiful example of strength, rage for life, resilience, elegance, reading you I must admit that I was amazed by so many maturity and beauty of soul, you command respect! Let's remember this beautiful phrase from the wise Sabrina: " everyone is unique, you have to be aware of that! ", I'll let you discover the amazing Sabrina:
Let's get started:
Who are you ?
First name(s): Sabrina, Sab, Sabou, sabounette, bionicwoman, Warrior..
Age: 18 years old (01/29/1997)
Profession: Permanent contract (permanent chemo
Where do you live: between Paris and Ivry
Why do you agree to share your story today?
Because I think sharing my story can help a lot of people affected. And talking about the illness freely allows us to have an untabooed look at Mister K.
What are your qualities (in a few words)?
Listening and present for the whole world. Pragmatic too! Above all!
What are your passions (in a few words)?
Eat !!!!! I'm hanging out at the "loulou friendly" dinner next to the Institut Curie.
I really like theater, judo and boxing as well.
What K (what cancer - grade if you wish / stage ditto):
Osteosarcoma of the left femur metastasized to the lungs in CDI
When was it discovered? How old were you ?
In 2010 at the level of the femur I was 13 years old I relapsed two years after the treatments at the age of 15 this time the lungs as well.
Under what circumstances was it discovered?
I had a lot of pain in my knee, it had tripled in size, I did a lot of judo, we thought it was an injury, I had a competition, I didn't go to the doctor, I waited 3 weeks, then everything happened. I was quickly diagnosed and sent to Curie.
If you are currently undergoing treatment, or in remission (for how long?)
In treatment since 2010 I just had two years of break (remission) out of these 5 years
Can you summarize your (K fighter) story for us ?
First of all, June 2010, I joined Curie. I wasn't allowed to put my leg on the ground at the risk of the bone breaking.
The first treatments, the first difficulties but a smile on your face!
Very quickly, in October operation to put a femur knee reconstruction prosthesis. Everything went well or almost. I had to be hospitalized for a month at Curie because I had a stretched sciatic nerve. I screamed for a month in that room without them really being able to calm my nervous pain. It wasn't joyful but my loved ones were there. I got up. Between hospital and rehabilitation to walk. No more school, no more home. There, joy of living, I walk again. The treatments are calming my nerves more and more.
I finished around May-June: Remission.
No euphoria for me, sad to leave the hospital. It will have lasted two years.
July 2013, relapse above the prosthesis and metastases in the lungs and the pleura is believed to be affected. Outch.... the results don't look good. We quickly forget about the magnificent hair that had grown back and here we go again. Heavier chemo, we're holding on. My loved ones very very present. Very quickly, I understood for myself that I was going to have an amputation (pragmatic, I told you), so I quickly had an appointment with my surgeon.
Well, I was right ;). Come the amputation October 2013 everything is going well, I have medication for phantom limb syndrome and my surgeon grafted the tibia which was healthy onto the rest of my femur so that my stump is long enough to have a femoral prosthesis without belt around the waist (THANK YOU). I continue with an operation on the right lung, 25 nodules are removed, then the left 24, and no affected pleura in sight, phew!
Note that I am so muscular that they had to cut my muscles a little to get to the lungs. Following that, chemo chemo chemo and when we have a little time... that is to say, I almost never have a prosthesis made.
In June 2014, I have a mechanical prosthesis; I walk quickly and easily with it and a crutch for safety. We start a new chemo in July which will not work. We will discover in October 2014 micro lesions in the lungs which are increasing. The treatments that don't work come one after the other, the lesions increase, my breathing deteriorates a little.
Ah yes, June 2015, I finally have an electronic prosthesis, no more crutches, I wander everywhere, it's magical.
To this day the treatments still don't work, we're waiting for a miracle treatment, I'll start on Tuesday, November 10, we believe in it.
In total, I only lost slightly:
And almost 50 pieces of lungs, that's not much :)
What treatment did you have?
So are you ready?
4 vp16 ifosfamide
5 Cysplatin Adriamicin
4 gemzar taxotere
3.4 months of regorafenib
4 cures of iondelis
Then endoxan rapamune
And it's going to be cabon
We are not going to count 2 biopsies and 2 pac placements
A femur knee reconstruction prosthesis installation
Right lung operation
Left lung 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 :
Stay up, get out of the room, get busy!
How did you live the day before, the same day, the days after chemo?
and what were your tips?
I had a very good experience with my treatments
The day before I had no apprehension, but sometimes I was still happy that my blood test was not good and that we therefore could not do chemo. It was always a little more strength before starting again. The same day I was on top. And afterwards for the weaker ones nothing or a little fatigue and for the stronger ones often aplastic, feverish, so still in hospital :D
2/ hospital: (e.g. contact with nurses / doc / caregivers):
Very good relationship with all the staff.
And thanks to my age we have a golden teen young adult facilitator, with whom we mess around all day long, that helps!
3/ “parallel” medicine :
From the love of cuddles! I'm sure they're doing well! ;)
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
To see friends ! It's super important to keep a link with people outside the hospital!
And thanks to the P´tits cracks association, I went on equestrian trips and benefited from a good number of cultural outings
I was going on vacation to Spain for a few days
I'm lucky to have golden friends to have been able to do all this
Going far away does me good.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
Continuing to be a flirtatious woman is important. Well I don't spend more than 10 minutes taking care of myself but before it was zero so it's a lot ;)
I like l’occitane creams in Provence
And in terms of makeup, I get my supplies from Melkior
I like bodyshop too
Essential for me: a cream or bb cream, a blush, mascara and cherry labello
If no eyelashes pencil and eyeliner
Afterwards I don't have any reactions so I don't use any special products
PLEASE NOTE A BRAND OF COSMETICS FOR WOMEN WITH CANCER IS LAUNCHING: “SAME” follow them on Facebook .
When my hair grows back I use monoi, it nourishes it well.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
Jogging to be comfortable!
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
I did a little boxing, it felt good to evacuate!
I've tried a little meditation but I'm having trouble staying focused.
In terms of food, I followed my desires.
4/ hair problem (eg: did you wear a wig, scarves, hats)
My first time, I refused to wear wigs I didn't want to dress up I wore scarves
Then the second time I started with scarves then I had fun trying on wigs with a friend from the hospital and I got into the game.
Are you concerned about the views of others, are you afraid that their views will change? What are you doing to counter it?
I was never afraid of people's looks, on the contrary I confronted them
But all the same we quickly realize that it's more curious looks than mean looks.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
Knowing that I am an amputee: “when you have no head you have two legs..”
My mother who bought me a new brush even though a week later we knew I was going to lose my hair
How did your loved ones support you?
My loved ones were very present, whether my friends or my family. I am very lucky to be so well surrounded
And what advice could you give to loved ones who accompany a K fighter?
Keep going, don't feel sorry for the sick person, continue as if everything was going well in the best of all possible worlds and above all be present, take the time is important
Do you find out about K on the internet?
No, not really, I only read half, there is everything and nothing on the internet , everyone is unique, you have to be aware of that!
If so, does it make you feel good?
It doesn't matter to me, I don't take what I read to heart
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..?)
Before it was: School, judo, sleep, today I discovered life, the pleasure of living, taking advantage of every moment that is given to me, I lived 18 years, it's already crazy, it's is huge, others didn't last until 10 years, I'm not complaining.
Free field ;)
tell us what you want (which might not be in my questions):
Thank you to all the associations who got me out of my house.
Thank you again Wonder Sabou, for your superb testimony, full of strength and hope ;)
Lots of nice positive thoughts
See you soon