ITW n°90: Tiphaine - K fighter (Ewing's sarcoma).
to resume the interviews this year (which will now be broadcast every Wednesday at 1 p.m.), I present to you the luminous Tiphaine, 23 years old, full of life, spontaneous and natural, a bubble of sweetness to read, an ode to life, the testimony of a young woman in remission from Ewing's sarcoma since November 2015. With sincerity she gives us her obstacle course, but above all we remember her hymn to life, that of a young woman dream-eater, and projects, for whom the ordeal has finally refocused on the essential, and who only retains the positive things. Beautiful waves full of hope that feel good.
Very nice discovery.
Let's get started:
Who are you ?
First name: Tiphaine
Where do you live: Reims
Why do you agree to share your story today?
I hope that my testimony can help other k fighters but also their loved ones to better deal with cancer.
What are your qualities (in a few words)?
People often call me funny, spontaneous and natural.
What are your passions (in a few words)?
The mountain recharges my batteries. Reading makes me dream.
What K (what cancer - grade if you wish / stage ditto):
A right costal Ewing sarcoma. There is no grade for this pathology.
When was it discovered? How old were you ?
We discovered it in September 2014 when I was 21 years old.
Under what circumstances was it discovered?
I had a stitch in my back for 2 years and rib pain in the last months before the disease was discovered. The last week I had shortness of breath and a stabbing sensation in my right ribs and was very tired. I went to the emergency room, we thought it was gallbladder stones. While doing an MRI, the radiologist realized that I could not inflate the lungs when taking the image, so he raised the machine to the level of the lungs and discovered a 13 cm mass between my 8th right rib and my right lung.
If you are currently undergoing treatment, or in remission (for how long?)
I have been in remission since November 2015.
Can you summarize your (K fighter) story for us ?
A long obstacle course, a crossing of the desert! After the announcement of my cancer, the surgeon quickly considered a biopsy. I was then hospitalized for a week, I had my first scar. But the pain escalates, it becomes unbearable and I have a fever once I get home. This is a bad sign, there is a big infection in the lung, certainly bacteria during the operation. That's when I leave for Paris to the Institut Curie, the reference center for this very rare type of cancer. I stay there for 3 weeks, we do a puncture under scanner, we can't start the treatments because I'm very unwell, the infection is spreading and the antibiotics aren't working: I'm expecting the worst. My oncologist then contacts a professor who will advise specific antibiotic therapy and miraculously, it works! A month goes by, we can finally start treatments, the tumor has grown since September. Then followed 7 chemotherapy sessions, an operation, radiotherapy and 8 chemo sessions to finish. 1 year of treatment.
What treatment did you have?
I had a total of 15 courses of chemo. I was hospitalized 3 days every 3 weeks. I remember a few names: vincristine, ifosfamide, doxorubicin, etoposide, actinomycin. Some of these products were reduced because they caused too many side effects, one was toxic to my heart.
I had 30 radiotherapy sessions every day for a month and a half.
(CAP installation and biopsy) The major operation took place at Foch, a hospital specializing in pulmonology. The professor (an exceptional Being) removed 3 ribs (from the 6th to the 8th), a piece of the right lung. The gap left by the removal of the 3 ribs was filled with a titanium bar.
Today, I am being monitored for my heart and I see my physiotherapist 3 times a week.
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):
The nurses are great, don't hesitate to tell them everything!
How did you live the day before, the same day, the days after chemo?
and what were your tips?
The day before I wasn't feeling too good because I knew that I was going to leave my city for 3 days for Paris and that my entourage would not be there. The same day I said to myself: “Come on, let’s give this crab one more slap!” » and when I arrived at Curie in the young adults department I was happy to see my companions in trouble and my favorite animal! The 3 days went pretty well in themselves, I didn't have too many side effects and we had a good laugh in the youth room, it was cool! On the other hand, when I returned home, I knew that the two weeks were going to be difficult because of the side effects. I slept a lot, I moved very little, especially in winter when the white blood cells are no longer present, you should not go out to avoid catching an infection! I stayed locked up for several weeks without getting some fresh air and that was really hard because I am very active by nature. So, my “anti-blues” tip was to watch series, films, read and listen to music.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
In the hospital, I moved around a lot. I stayed in my room very little so as not to think too much. I went to the youth room, to the cafeteria. With the nursing staff, we got along very well, we talked about everything and nothing. We are not a number in their eyes.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I have tried many alternative medicines to reduce my side effects. I have gone to see a reputable magnetizer in my area several times. It helped me physically and, psychologically, it made me super optimistic! I did acupuncture, herbal medicine and I felt much less nausea. We don't talk about it enough with doctors and in France, yet it really helps!
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I left for the last days before starting chemo again with family or friends. I went skiing 4 times, it was great, it took my mind off things, I was thinking about something else. And if I didn't leave, I MOVED: I went for a walk, I went to see friends, family. In short, I wasn't left alone to think.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
As chemo can cause nail loss, I applied silicon varnish continuously and it worked since I didn't lose any. Regarding dry skin, I used Avene cream, it moisturizes very well. And on the scar and the area irradiated by the rays, I applied sweet almond oil mixed with a few drops of Tea-tree and Niaouli essential oil. My skin has repaired well.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
During chemo in the hospital I wore tracksuits for comfort. On the other hand, once I got home I dressed as usual. I didn't want to change anything.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
It was difficult to do sports because of my breathing and my fatigue except when I went skiing, it was during the day! The mountain gives me a mysterious strength, it’s magical! At home, I read a lot, I listened to music. In terms of food, it depended on hunger otherwise I didn't change my eating habits.
4/ hair problem (eg: did you wear a wig, scarves, hats)
I unfortunately lost my beautiful long hair from the first chemo. One of the most difficult stages to go through! But I didn't give up, I wore a wig with rather long hair almost all the time and people didn't see anything but fire. At home alone, it was turban and scarf.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
To counter a possible change in people's behavior, I acted as if nothing had happened. With the wig, a little makeup, people couldn't see anything. I also didn't complain to my loved ones so as not to worry them and to play down the drama.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“I may not have cancer but I also suffer from my back pain”
And others that I don't remember anymore!
How did your loved ones support you?
They were very present, they called me all the time, came to see me at my house.
And what advice could you give to loved ones who accompany a K fighter?
Even if it's difficult, you have to try to do as usual! Do not decide for the patient by telling yourself that he is too tired to do this or that thing.
Do you find out about K on the internet?
At the beginning yes, I was looking for testimonials on blogs or forums. But I quickly realized that it was very often negative.
If so, does it make you feel good?
Sometimes yes. At least I kept it positive.
If so, what would be the useful (internet) links that helped you during K?
This blog but also that of Marine “kiss of a hurricane” . They are positive and optimistic.
What has the K changed in your life…?
First of all, I enjoy life to the fullest without asking too many questions! I want adventure, experiences, travel. On a professional level, I want to do what I like, namely teaching little ones! I dropped my Masters in Finance, a field that was too superficial for my taste. I also met some wonderful people, I put aside futile “friendships”. Life has taken on its true meaning in my eyes, I am at peace.
Free field ;)
tell us what you want (which might not be in my questions):
I would like to thank the exceptional beings who surround me. Whether it was a friend who knew how to extend his hand, a nurse who considered me as a singular Being, a VSL driver who made me laugh. All the volunteers from associations like Princesse Margot, Cheer Up, On est là, 20 ans un project, Défi and so on who give without counting and without expecting anything in return. But also my physiotherapist, my cardiologist, my pulmonologist, my surgeon professor, my oncologist and Co. who support me on a daily basis and who enable me to Live, Travel, Meet, Laugh.
Finally, my family, unfailing support!
To all of you, a huge thank you, I love you very much!!