ITW n°66: Eleonore - K fighter.
Hello,
today the amazing Eleonore, 41 years old, true warrior, passionate sportswoman, "GUERY" for 5 years (yay) of a K of the cervix; delivers his fight to us with pugnacity, resilience and elegance. A great lesson despite its heavy collateral damage (lymphoedema), the never give up remains more relevant than ever if you read his incredible testimony of strength!
Thanks to this life test, Eleonore managed to transform reality into strength by engaging in the fight against K: in sport and good humor, by creating Lympho' Sport because that is also K, rebuilding after the worse ...
Great discovery.
Let's get started:
Who are you ?
First name: Eleonore
Age: 41 years old
Profession: medical sports educator in oncology following my K (part-time)
Where do you live: in Seine et Marne
Why do you agree to share your story today?
to show other patients that we can get through it even with after-effects like me (lymphoedema)
What are your qualities (in a few words)?
combative, dynamic and annoying! (according to my husband)
What are your passions (in a few words)?
travel, fashion, sport
What K (what cancer - grade if you wish / stage ditto):
cervix, grade 2/3
When was it discovered? How old were you ?
Christmas 2009, 35 years old
Under what circumstances was it discovered?
smear
If you are currently undergoing treatment, or in remission (for how long?)
5 years of remission passed, I am cured
Can you summarize your (K fighter) story for us?
Here is my story:
5 years ago at the age of 36, I was diagnosed with cervical cancer and was immediately treated at the Gustave Roussy Institute.
As a result of this cancer, I developed LYMPHOEDEMA OF THE LOWER LIMB in my thigh and small pelvis – which changed my whole life.
Previously, my life was busy because I was working as the manager of an all-sports association, I had a 16-month-old baby and a former triathlete, I ran and swam every day.
I therefore attacked my treatments with a very good initial physical condition, concentrating on the treatments as for a
competition:
- Brachytherapy: 7 days in a lead chamber irradiated into the vagina. Horrible !
- Total hysterectomy: BYE BYE my little ovaries and HELLO menopause
- Total pelvic lymph node dissection
- Lumbo-aortic lymph node dissection
- 45 Radiotherapy sessions
- 6 Chemotherapy sessions every week, where I had the size of a model because of the nausea!
The day after the operation, deciding to do a stretching session with my IV, I got up, discovering like 2 bags of cement on each of my legs, a pubis swollen like a tennis ball and pants that had become too small. !
The tumor and metastases had disappeared but instead I discovered secondary lymphedema of the lower limbs on the right thigh and genitals.
The 3 cm difference between my two legs, the permanent pain in the pubis and the risk of infections quickly obsessed me. It was difficult for me to learn to live and touch this unknown body, which until now had been a muscular and sharp performance tool!
I then realized that this swollen leg would no longer allow me to do sports, on this point I was fortunately wrong ;-)
A big fan of fashion, I nevertheless said goodbye to my “LOUBOUTIN” pumps with 10 cm heels as well as my shorts and sandals
….
I was lucky enough to start medical treatment very quickly, 1 month after the onset of lymphedema, with MANUAL LYMPHATIC DRAINAGE sessions and the PRESCRIPTION of daily COMPRESSION STOCKINGS…
I groped around to find the right Lymphatic Drainage technique that best relieved my OL and my physiotherapist became my best friend for life!
Every week for 5 years, my physiotherapist drains my lymph nodes and drains my entire body, and in particular my right leg and my small pelvis, congested with lymph.
- Daily wearing of compressive stockings in winter and summer (especially at 40 degrees) and from the moment you get out of bed
- Daily wearing of compressive stockings in winter and summer (especially at 40 degrees) and from the moment you get out of bed
- Wearing a compression girdle (not sexy)
- Very significant infectious risks such as erysipelas and lymphangitis.
After 3 years of difficult “cohabitation” with my lymphedema because I was afraid to run because of the shocks and to start mountain biking again because of the risk of falls. I quickly understood that sport was essential to managing my edema.
I now swim 4 times a week at a swimming club, more than 10 km per week, and the competition bug has caught up with me!
I participated in the SWIMMING MASTER interclubs within the CNMVS club in 100 meter breaststroke.
I also do 2 Nordic walking workouts per week.
What treatment did you have?
Brachytherapy
Removal of uterus, ovaries, tubes
Complete pelvic cleaning
Complete lumboaortic dissection
Chemo
Radiotherapy
chemo: if you have had it: (name of cocktails / number of sessions)
Cisplatin 6 sessions
radiotherapy: if you have had it: (number of sessions)
45 sessions
operation if you have had one (how long were you hospitalized):
3 / 1 month
other:
lymphedema of the pelvis and thigh
What tips directly related to K do you want to share (your feeling with your doctor, your good plans for organizing treatment, anything that seems useful to you ;))?
Request a letter “needs priority, difficult to stand” from my surgeon to enter 1st at the VUITTON sales (I did it)
1/ chemo: (ex: your tips, the helmet, your affinities with nurses):
don't eat too much
How did you live the day before, the same day, the days after chemo?
I vomited my guts out
and what were your tips?
Drink coke
2/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I am a believer so I prayed
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
shopping on the net!
And a Champagne aperitif with my husband!
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
Very nice Caudalie products
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
Loose dress, support stockings, new balance and lipstick
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
Lots of sports, swimming and Nordic walking
4/ hair problem (eg: did you wear a wig, scarves, hats)
Chemotherapy for the cervix does not cause hair loss but damages the ears
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
I made myself look beautiful: makeup, jewelry...
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
You're alive so don't complain!
How did your loved ones support you?
Very good !
My husband made me little trays in bed: pizza AND Hagendaz ice cream
And what advice could you give to loved ones who accompany a K fighter?
love him
What has the K changed in your life...?
I retrained thanks to K!
In November 2014 I managed to integrate (20 places throughout France) the training offered by CAMI SPORT ET CANCER: a DU of Medical-Sports Educator in CANCEROLOGY University of Paris 13
And in December 2015, I became a SPORTS AND CANCER MEDICAL EDUCATOR.
This allows me to work with patients undergoing treatment to improve their quality of life, fatigue, pain, etc. thanks to sport.
It’s a nice snub to cancer!
I also became a NORDIC WALKING COACH in order to supervise patients during and after cancer with or without lymphedema within the LYMPHO'SPORT association (here) that I created.
Free field ;)
tell us what you want (which might not be in my questions):
I have been cured of my K since this year but it left me a nasty gift A BIG THIGH or LYMPHOEDEMA* of the lower limb.
*LYMPHOEDEMA, which can also affect, but more rarely, the arm after certain K of the breast, occurs after the destruction of the lymphatic network following lymph node dissection, and/or radiotherapy.
Hence my reconversion!
I now speak at conferences on sport & cancer and on lymphedema.
So yes I often have pain in my leg, yes I am menopausal, yes I am getting older, yes I wear granny compression stockings in winter and summer, but 5 years after my cancer, things have come full circle. , and life has brought me many beautiful surprises ;-)
Kisses to tutti
Eleonore
‐‐‐‐‐‐‐‐‐‐‐
Many thanks Eleonore for this precious testimony and this beautiful lesson in resilience.
If like Eleonore 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
Many of you send me your testimonies, thank you for your precious trust, for this same reason, the broadcasts of your interviews will sometimes be broadcast in several months, but know that I keep and transmit absolutely ALL the testimonies that are sent to me, Thank you for understanding.
Please note that I do not retouch any Interview, they are completely free, it is your freedom, your story, I just add my personal touch with the illustration, they are delivered as they were sent to me ;)
NEVER GIVE UP!!
Charlotte
