ITW n°20: Julie - K (or JY) fighter.
Creator of the great blog: Feminity & JY , "the blog to stay feminine, beautiful and dignified during the K War :)!!"
Let's get started:
Who are you ?
First name: Julie
Age: 28 years old
Profession: real estate asset manager
Where do you live: Nice
Why do you agree to share your story today?
Through my blog "feminityandjy.tumblr.com" I want to show women who are going through cancer that it is possible to remain beautiful despite the side effects of treatments which deprive us for a time of everything that makes us women. Indeed, I believe that good morale is a huge step towards recovery and that looking good in the morning by making a little effort helps to boost morale.
I'm lucky to deal with the side effects of chemotherapy quite well, so being off work, I'm using my free time to make a contribution to the fight against cancer.
So I created a blog about managing femininity during illness and accepting your new body: feminityandjy.tumblr.com
I am also currently setting up workshops in collaboration with the League Against Cancer and the Antoine Lacassagne Center in Nice in order to teach women affected by alopecia or not to tie scarves/cheches/pareos on their heads. In fact, it's much more fun, folk and beautiful than the little caps we get from wigmakers, which mold the bare skull!
What are your qualities (in a few words)?
Smiling, creative, available, passionate, whole, positive and a go-getter.
What are your passions (in a few words)?
Drawing and art in general, fashion, tattoos, classical dance, skateboarding, surfing, snowboarding, animals, live music forever and to pass it on to others!!!
Can you summarize your (K fighter) story for us ?
Like every year in January I'm going to have a complete check-up (dentist, blood test, gynecologist, etc.)
At the end of January, I see my gynecologist for the annual check-up and he performs a breast exam. he feels a very small lump which he describes as a cyst as it is, without lingering too much. I myself hadn't felt this thing myself.
During February I felt discomfort in the bones of my bra. so I started to look for what was bothering me and I felt a nice lump in my left breast (heart side). I ended up touching this lump to my mother who said to me, "well Julie, don't stay like that, go back and see the gynecologist, I don't really like it..."
Having a very busy job, it is true that I was going to let it drag on a bit because I was light years away from thinking that it could be cancer given that there has never been any cancer in my life. family. However, my mother sent me a message every day to find out if I had made an appointment with the doctor... so I ended up doing so after a few days, and fortunately!
At the end of February I saw my gynecologist again who carried out another breast examination and who told me that the examination was indeed no longer the same as it was 3 weeks ago and that the said lump had tripled in volume. .. he therefore prescribes a complete ultrasound and mamographic examination of the breasts in order to remove all doubt!
Two days after this appointment I got an appointment with a radiologist in Nice who started by doing an ultrasound telling me that it would be a shame to do a mamogram and send me unnecessary rays if the ultrasound only reveals that 'a simple cyst, especially since I have no family history... this morning was surreal: I therefore had the echo, the results of which greatly displeased the radiologist, followed by the mother, then like the The results were still not to my liking, so they did the biopsy on the spot, so as not to waste time, as the nodule was already almost 3 cm...
The same evening I had to fly to Paris where I had an important meeting the next day at noon at the World Tattoo World at Parc de la Villette. There was no way this thing would stop me from living my experiences and my passions. So I left for 5 days to relax in Paris, to enjoy this magnificent city and my Parisian friends.
When I returned the following Wednesday, an acquaintance I had at the hospital had managed to get my biopsy results well in advance and asked me to come by so that I could see a doctor who would explain to me what was happening: So I had grade III, HER2-positive, hormone-dependent breast cancer amplified...
It was a cold shower!!!
At that moment everything happened quickly because we had to do it very quickly!
What K (what cancer - grade if you wish / stage ditto):
Grade III HER2-positive hormone-dependent breast cancer amplified
When was it discovered? How old were you ?
Beginning of March 2015 at the age of 27
Under what circumstances was it discovered?
On a simple revision of 100,000 ;)
If you are currently undergoing treatment, or in remission (for how long?)
I have been undergoing chemotherapy treatment since April 13, 2015.
What treatments do you have?
In March 2015 I went to Bondy in 93 to have my oocytes and piece of ovarian cortex collected for oncofertility purposes in case the treatment made me sterile... the collection is done by sceloscopy. so I have 5 little eggs waiting for me in the freezer in the Paris region just in case...
I am in a particular clinical trial protocol called Bérénice. I am receiving the treatment from the clinical trial. This protocol is longer but there is a one in two chance that on the day of surgery the tumor will have completely disappeared.
So I have 8 sessions of general chemotherapy, one every 3 weeks. The last being September 14, 2015. This will be followed by surgery in October 2015, then radiotherapy in December or January for half an hour for 30 days.
Then 18 sessions of targeted chemotherapy (trastazumab and pertuzumab) in order to consolidate the antibodies to avoid recurrences, also once every 3 weeks... I should finish all of this during the summer of 2016.
chemo: name of cocktails:
general chemotherapy: 4 FEC 100 + 4 taxotere with trastazumab and pertuzumab
In December or January
scheduled for October 2015 and it will be a tumorectomy. the tumor having to date responded very well to the treatment, it is now less than a centimeter.
The tumors having shrunk by 60% at the 3rd chemotherapy, one week after the 4th chemotherapy I was given a reference clip at the level of the tumor because there is an 80% chance at this stage that it has completely disappeared on the day. surgery. The surgeon would then only have to clean the infected area.
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 ;))?
- To find a center specializing in the cancer that affects you and which, if possible, offers clinical trials. In fact, I had virtually no side effects apart from nausea and a little fatigue the week following my chemo.
- Buy a diary to write down all these medical and other appointments because chemo alters your memory a little ;)
- Turn to the League Against Cancer which, in return for a membership of 10 euros per year, offers you various well-being treatments essential to manage side effects and self-esteem. (sophrology classes, reflexology, social beauticians, yoga, chi-kong, art therapy, psychologist, gentle gym, etc...)
- The Belle et bien workshop offered free of charge by the League Against Cancer where women are taught how to take appropriate care and apply makeup; At the end of the workshop, you are given a most astonishing skincare and make-up case made up of major cosmetic and make-up brands. We are super spoiled there!!
- homeopathy to help manage the side effects of chemotherapy (nausea, fatigue, elimination of treatment, drainage). First of all, I recommend drinking rosemary herbal teas every morning and or evening to help drain the treatment. Go see a Homeopath doctor. Aloe vera is also a good help.
1/ chemo: the helmet, your affinities with the nurses,
At my first chemotherapy I was scared, obviously it was the unknown, but I didn't show it, I didn't want to worry my loved ones any more.
I wore the cooling helmet on my head without any problem but my hair still started to fall out after the 15th day following my first chemo.
All the nursing staff have always been great with me, I have nothing to say about that.
The only thing that I find a little archaic is the rooms that I describe as "shooting rooms" where you come to take your dose of chemotherapy.
In fact, during my first chemo, the rooms were individual boxes where a simple curtain or cardboard partition separated us from the other patients. The boxes were so small that it was difficult to have a companion to keep you company...
But my center made service improvements between my 1st and 2nd chemo and the boxes became rooms with more comfortable seats even if sometimes there are 2 or 3 per room.
How do you live the day before, the day itself, the days after?
The day before my chemo I am always a little gloomy and stressed because I am always a little afraid of the side effects... even if I am starting to experience them!
I hate being in a lethargic state that doesn't make me tired enough to sleep and not fit enough to go out... and therefore being in a state that just allows me to do nothing...
During my first 4 treatments, under FEC 100, the 4-5 days following my chemo were off days, where I just couldn't do anything... but from the 6th day until the 20th I was in super shape!
My treatment to change at the 5th treatment... to date it has been 2 days since I did this treatment and for the moment I have no side effects... as long as it lasts...
And what are your tips?
Drink rosemary herbal tea and take two organic desmodium capsules every morning or drink detox tea like the kusmi tea detox range, the citrus yellow being rather cool to reduce the chemo taste that you can sometimes have in your mouth. ..
2/ hospital: nurse / doc / caregiver contact
Impeccable follow-up and help in my care center, Le Center Antoine Lacassagne in NICE
3/ alternative medicine, if you have done so
Homeopath, sophrologist, reflexologist, psychologist
What do you do to clear your mind/clear your head (before chemo, surgery & co)?
I went back to art school, I go to the League Against Cancer for treatment, I go for walks, skateboard, I take care of communication and broadcasting a Var festival, I read a lot of magazines beauty and well-being and I am making plans for the future ;) and above all every morning I make myself beautiful.
What practical tips can you advise us?
- Give your tumor a little name, personally I called him Jean-Yves because I don't know any and this name always made me smile! So what better way to take the drama out of things? Besides, his first name is included in the title of my blog, because from now on Jean Yves is part of my life..
- Doing homeopathy treatments can't do any harm but it can do some good ;)
1/ beauty: magic creams / scars & co:
Wash with very moisturizing shower oil, I use the RIVADOUCE or LA ROCHE POSAY or AVENE range. and after the shower use very moisturizing creams preferably for atopic skin from these same ranges.
Don't forget to put a factor 50+ sunscreen on top of your moisturizer, also on your face, without forgetting your hands and feet!
I use the LIPIKAR BAUME cream for atopic skin from ROCHE POSAY and as a total screen I use the BIODERMA gun which is very simple and practical for application.
As a scar cream, nothing beats LINIMENT, a preparation based on olive oils perfect for scars. Otherwise the good old homeoplasmin and all the oils in the VEA range which are at the top of the best because they are based on pure vitamin E.
2/ look, your favorite look chemo, hospital, every day to feel good
90% of me wear scarves and pareos that I tie in my own way on my head. you should choose them preferably, in noble materials (except silk which slips): cotton, modal, bamboo. Cotton and bamboo are the least warm during this very summer period!! and what I therefore highly recommend.
As for tying, I have different ways, which can be found on my blog with video tutorials to come: gipsy, African, flirtatious, pin-up, Greek princess, etc.... all with square scarves, pareos or scarves and decorated with false fringes of all kinds (blonde, brunette, redhead)
I also purchased a wig, just in case, which I had a lot of trouble finding. I told myself that I would get a wig with a cut and a color that I would never have dared to wear... but it wasn't that simple... I ended up getting a platinum blonde wig with a cut short and disheveled so as not to suffer too much from the heat in summer and to be easy to take off the wig the day my hair grows back. memo: don't take a long wig because it's harder to remove afterwards!
As for the clothing, it's Rock and folk!!!
3/ daily (sport, food & co)
I try not to get up too late, because I want to enjoy every day where I feel 110% in shape.
Before my cancer I was very sporty, practicing twice a week 1.5 hours of classical dance and 2 hours of Zumba.
Without forgetting winter sports, living only 1 hour 15 minutes from the slopes, I did a snowboarding session almost every weekend.
However, now I use a lot of my energy on other things like my drawing classes, my blog, and my K projects, leaving me less energy to use on my sports... and my thighs feel it! a lifetime of sport only to find yourself all soft in just 3 months :( boredom!!
Well, I still do a little skateboarding from time to time, it's good for the cardio!!
Concerning food, I have a terrible fear of gaining weight.. being a small model of 1m59 and 50 kg, if I take 500 g it is visible immediately, so as my treatment is supposed to make me gain weight at Because of water retention, I try to pay attention to what I eat, favoring white and lean meats, cooked vegetables and salads, cottage cheese between 0 and 3% because you need a lot of protein for the body during chemo which attacks the muscles a lot. As well as calcium for the bones to avoid too premature osteoporosis...
Finally, you should above all eat everything in reasonable quantities because it is also important to treat yourself from time to time ;)
Are you concerned about the views of others, are you afraid that their views will change? what do you do to counter it?
When I was told I had cancer, the only thing that worried me was what I was going to look like... being very flirtatious by nature, and having always had long hair, which for me was the symbol of femininity , I was going to lose them... as well as my eyebrows, and my long eyelashes... without forgetting that it was possible that one of my breasts would be removed!!! so yes at the start I was very concerned about all that. but I adopted a progressive strategy which helped me a lot from a psychological point of view.
I started by gradually cutting my hair, going from long to long bob, then to the crazy horse type short bob, then to the ultra sexy 90s boyish cut which I loved by the way, and ended up completely shearing my hair. head! therefore the acceptance of my new image happened gradually and the hair loss was more easily accepted and digested. the next step being having the courage to go out onto the street bald! and I work there!!
Then I chose a wig and learned to tie hairstyles on my head so that I always looked stylish.
As for the oyster complexion, falling eyelashes and eyebrows, there are different tips to find on my blog soon which I will reveal to you in preview ;)
For the face, use a tinted sunscreen cream, I use LANCOME SOLEIL BRONZER index 50 then I mattify with a powder foundation from BENEFIT.
Then I put pink or coral blush on the cheeks and by by gray mine, neither seen nor known we are fresh!
For my eyebrows, my treatment center personally offered me a dermography session for a semi-permanent eyebrow tattoo in order to preserve the line.
Otherwise you always have the option of redoing your line every morning with a long-lasting eyebrow pencil. it's important for the look of the eyebrows, don't forget them!
For the eyelashes, I put on makeup by applying a bit of black eyeliner (preferably waterproof) in order to compensate and camouflage the lack of eyelashes. but the eyelashes protect against dust so when you no longer have any, don't forget to go out with glasses or sunglasses so as not to get stuck in your eyes :-/
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
When I received a call on my cell phone when I was in Paris just after my biopsy from a cancer center in Nice when I still had not received the results of my biopsy and I did not yet know that I was sick... the oncologist who called quickly hung up when he realized that I didn't know yet...
How do your loved ones support you?
The hardest part was telling my mother...it was worse than telling her that I had made a big mistake. But I knew how to find the words without ever saying the word cancer but while making it understood.
My loved ones were great even though I had a bit of all the reactions around me and I learned to no longer trust and judge everyone's reactions.
Despite everything, I lost friends in the battle who had a hard time taking the news and preferred to move away from me, taking what was happening to me too much to heart in order to preserve themselves...
Aside from that, I always have my mom with me during my chemos and the week that follows to help me at home.
And what advice could you give to loved ones who accompany a K fighter?
To be present, merciful, patient and to show joy.
What would be useful (internet) links that help you during K?
What has the K changed in your life...?
Wow, a lot of things: I didn't believe it when people told me, you'll see, it's going to change your outlook on life, thinking that it was a generic phrase that was used for all people who had a difficult experience... but I must say that yes, it changes a lot...
Today I savor every minute, every moment of my life, which I live to 110%.
Life no longer has the same flavor, it is better!
At the risk of shocking, I see more positive than negative in my cancer. in fact it allowed me to refocus on myself, I had forgotten myself for too long... to do things that I love, to dream of new projects, and to put them into place. Without Jean-Yves, I wouldn't do everything I'm doing right now!
I want to remain involved even after my recovery in the fight against this disease by giving my time to help women who are going through this ordeal and who are fighting for their lives.
In any case I want to change my life, refocus on the simple pleasures that life offers me, work, but without necessarily forgetting myself, and always think about my pleasure... I don't want to be stressed anymore!!!
But also give my time to others and pass on the positive attitude ;) to those who wish it.
Free field ;)
The hardest part of this illness is not understanding “why”! Why does it happen, why does it develop?
It's complicated to ignore this question, but it's necessary to be able to move forward and stay positive.
Regain confidence in your body, see what it can endure to save you!
the final word: “ WE CAN DO IT”
Thank you again for your testimony and for sharing your K/tips ;)
Lots of nice positive thoughts
See you soon