ITW n°83: Juliette - K fighter of the Ovary.
Hello,
today, the young and positive Juliette, 27 years old, tells us about her fight against a K of the ovary (sister of K ) discovered in 2012 at the age of 23, with incredible mental strength, Juliette retraces her journey, the spirit of a warrior passionate about sport (baseball), who shows what resilience is in the face of heavy treatments, collateral damage, and that ultimately she was lucky enough to have her very invasive K discovered "early". Enjoying life when it is there remains the sweet philosophy of the beautiful Juliette.
Juliette has now been in remission for 4 years, and that's really great news to read!
To support young people facing Cancer, she and I highly recommend the wonderful association “We are there”!
Great discovery.
Let's get started:
Who are you ?
First name: Juliette
Age: 27
Profession: Freelance web editor
Where do you live: Lille
Why are you agreeing to share your story today?
To, perhaps, give a little hope to those who are still struggling, and enlighten some who have questions on the subject.
What are your qualities (in a few words)?
I am always very positive, I always see the bright side of things and I know how to put things into perspective. I have a very strong character and I am a fighter. At least that's what I'm told!
What are your passions (in a few words)?
Baseball (and softball) which I have been playing seriously for a year and a half (but which I have loved for longer). I am also passionate about drawing, I have been trying to get into freelance illustration since September 2015. Finally, I am a big fan of the world of the writer JRR Tolkien, I am also secretary of the Tolkiendil association and co-manager of the Tolkiendrim site. I like everything related to fantasy in general.
What K (what cancer - grade if you wish / stage ditto):
Ovarian cancer. I was never given a “rank”, I was just told that he was still young but that he was dazzling and that we had to act immediately.
In reality, it was a very rare cancer with only 30 cases recorded in France! This cancer started on the ovary but it could have been anywhere, I was told that it was the most aggressive of all, and that I had been incredibly lucky to detect it early. They said they were going to give me every treatment imaginable to get me out of there.
When was it discovered? How old were you ?
It was December 2012, I had just turned 23.
Under what circumstances was it discovered?
It manifested itself in a terrible stomach ache, an inability to go to the toilet or swallow anything. At first, we thought it was just a psychosomatic illness or a small virus, because I always had “stomach” problems, especially during times of stress. After a week without food, I really started to deteriorate visibly, I couldn't even move from my bed. My parents took me to see our doctor. He immediately felt a huge lump in my right ovary, without knowing what it was. After a blood test to rule out any possibility of being pregnant, I had an ultrasound. The doctor immediately used the word “tumor”, without realizing it. It was actually a cyst the size of a grapefruit. So I went to see a surgeon at the maternity ward to have it removed. He told me that he wouldn't be able to operate on me for a month and a half, or even two, because it wasn't very serious. Finally, after a week, I was in such bad shape and literally dying in excruciating pain, that my parents decided to take me back to the hospital for another consultation, explaining that the operation could not be done. to wait for. So I had surgery the following week. A day before the operation, the surgeon explained to me that it was a huge cyst, but that there was a 99.999% chance that it was just a simple cyst, or in the worst case case, a “borderline” cyst, but in no case a cancerous tumor given my young age. After the operation, where they removed the cyst as well as my right ovary, I was told that there were going to be tests done on it to find out the exact nature, and that they would keep me informed. So I go home, my life goes back to normal, we don't even think about it anymore. One fine day, at the end of November, I received a letter from the hospital for an appointment in mid-December to have a post-operative update with the surgeon. I distinctly remember telling myself that everything must be ok, otherwise they wouldn't wait this long to see me again. Ironically, we received a phone call from the hospital the next day, informing us that in fact I had to go see the surgeon as soon as possible, the next day. And there, I understood immediately. The word “tumor” from the doctor who had done the ultrasound came back like an echo in my head. My parents were also worried, because we suspected that if the appointment was brought forward, it was not for nothing. The next day, the news fell, like a sentence, in my surgeon's office.
If you are currently undergoing treatment, or in remission (for how long?)
In remission, this is the 4th year!
Can you summarize your (K fighter) story for us ?
It's difficult to summarize. To put it simply, I would say a year worthy of an obstacle course. A lot of frustration, a lot of fatigue, but also a lot of happiness.
What treatments have you had?
Chemotherapy: if you have had it: (name of cocktails / number of sessions)
I don't remember the exact number of chemos, 8 in total it seems to me. It was three days of chemo in the hospital, then returning home without being able to go out for a good week because of the aplasia. Then repeat after three weeks. And to top off all these great sessions, I had to have THE ultimate chemo, the one that kills all the cells in your body and requires spending a month in a sterile room, with an autologous bone marrow transplant. Unfortunately I don't remember the name of the product, I just know that it was the worst of the worst of the worst. The ultimate poison.
Radiotherapy: if you have had it: (number of sessions)
A month and a half on the shelves, every day except weekends. With the diet that goes with it, since it was on the intestinal area. The diet was worse than going to the hospital for radiation every day!
Operation if you have had one (how long were you hospitalized):
First operation to remove the cyst and the right ovary, which required a short week of hospitalization. Second operation, 3 months later to remove everything else (uterus, tubes, left ovary), + a small bowel cleaning as a bonus. Hospitalization time required: 2 good weeks.
I also had to have another operation several months later because I had a volvulus following the scar from my second operation, so they had to reopen the scar. I was hospitalized for another fortnight. For all three surgeries, I was given general anesthesia.
Other:
We skip all the blood transfusions and all the platelet transfusions between two chemo treatments! A good fifteen at least! I was also given EPO injections to boost me after chemo.
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):
It is very important to listen to your body. As for me, the doctors recommended that I eat a lot, and prescribed food supplements, but it never worked, and I felt even more tired each time. It was by “fasting” during my chemo that I realized that it actually made it more bearable.
You also have to know how to take the bull by the horns: when I started losing my hair, I told myself that it was inevitable anyway. So I decided to shave everything, just to put an end to this rather distressing period of hair loss. There’s no point in delaying things, you have to face them.
How did you live the day before, the day itself, the days after chemo?
and what were your tips?
the days before chemo were difficult. I really felt deep anxiety just thinking about what I was going to go through for three days. So I just tried not to think about it, and even if I dragged my feet there, once there I did everything to “forget” the moment. I always had something with me to read, draw or do things on the computer. And, it may seem stupid, but watching the time pass through the window, looking at the landscape and the clouds passing by allowed me to enter into small periods of meditation, to no longer think about chemo. Otherwise, I also slept a lot, so that time would pass more quickly.
The next few days were terrible because of the nausea and chronic fatigue. All I wanted to do was lie down, sleep, and watch series or play video games. This dive into a parallel world allowed me not to think about what was happening to me.
This may seem surprising but during this period of illness, I did not want to have “contact” with other patients or associations of former patients. I wanted to act as normal as possible, like a person who wasn't sick. I think it helped me get through it all faster, this pressing desire to become “normal” again.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
I have always been surrounded by incredible teams! Now all the nurses in the department know me! I was also lucky enough to have two aunts who worked at the hospital during this time, so I was a bit of a darling of the department.
I think the IGR doctors who took care of me during my time in the sterile room still remember me, I really didn't do them any favors. I was terrible and I asked them three times a day when could I leave. I ended up wearing them out and leaving a little week before the scheduled date!
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I tried sophrology but it didn't work for me, it only reminded me of my sick condition. So I gave up.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
a lot of reading, a lot of television, a lot of computer/internet and a lot of video games!
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
As surprising as it may seem, I did not use any “special” products. I had dry skin from the treatments but I never wanted to use creams or other products. I just used Vaseline for really dry lips and a little Aleppo soap on my scars. I should have used more moisturizers!
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
at home and during chemo it was: pajamas and turban on my head, no makeup or anything else. As soon as I left the house or saw my boyfriend, I put on a wig, I put on makeup (a lot to compensate for the lack of eyelashes and eyebrows) and I tried to dress stylishly, but when you lose 20 kilos, nothing more We don't go and we don't really have the energy to go shopping, so it wasn't easy.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
no sport because I'm too weak, but a lot of reading and television, or short car rides with my partner. However, sport helped me a lot after cancer.
4/ hair problem (eg: did you wear a wig, scarves, hats)
I bought a lot of wigs, it became a game, I loved changing my head every day with a different wig. But when I stayed at home I favored scarves which are still much more comfortable.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
Yes, in fact, the way others looked at me as well as the way I looked at myself was the most difficult part to manage. The looks of others were always full of pity and sadness, and it made me uncomfortable. To control it, I tried to stay as before by primping myself a little.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
phrases like “why are you so tired?” » or “why don’t you want to do anything with us anymore?” » coming from people who are not at all aware of what we are going through. But the worst thing was not the people's sentences, but above all the way they looked at me. Otherwise, I hated being told “Be brave” or “You are very strong”. I didn't like it, because for me, I was going through it, and there was nothing courageous about going through that.
How did your loved ones support you?
my close family was very present, as was my boyfriend who accompanied me at all times. On the other hand, I lost a lot of friends, which allowed me to sort things out. Some only heard from them once in a year, almost as if nothing had happened, it hurt me, so I preferred to distance myself from these people.
And what advice could you give to loved ones who accompany a K fighter?
you must remain positive, not look at the patient with “pity”, and above all, be present, all the time, as soon as possible.
Do you find out about K on the internet?
yes, just to help sick people, I try to get involved in associations that I have just found, like “We are there” .
If so, does it make you feel good?
Yes, it's really good to be able to talk to people who have experienced the same thing, and to be able to help others.
If so, what would be the useful (internet) links that helped you during K?
during the K I had nothing, but I recommend to all young adults the excellent association We are there!
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..?)
many things ! I realized that nothing was “serious” about the little problems of everyday life, and, even if it sounds cliché, that life is short and you have to make the most of every minute that passes. Before, I always projected myself into the future, whereas now I really live day by day. I take a step back from all the situations of everyday life and realize that it is important to do the things you love, before finding yourself again in a hospital bed, in agony, and to say to yourself “I didn’t experience what I wanted to experience”.
I also realized that I no longer wanted to waste time with negative people. They are everywhere, and these people eat up all our energy. Now, I no longer take it easy, and I delete all these people from my life, even if they are part of my family, I don't want to waste any more time with them.
Free field ;)
tell us what you want (which might not be in my questions):
we don't talk much about the after-effects, and yet there are many of them! As far as I'm concerned, some are a real scourge and will never go away, like the tinnitus, the breathing problem or even my hormonal treatment. But, it is very important not to let ourselves get discouraged, because these side effects are there to remind us that we are alive, and that we are true warriors J!
Finally, if you have a bad temper, be proud of it, it's probably what will save you!
Little fun fact: after all the treatments, we heard my oncologist say in the corridors to one of his colleagues “And here is a case that I would have saved!” »
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Thank you Juliette, for this beautiful testimony full of life.
You can leave comments for Juliette below.
If like her, you want to tell your story, your projects 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
