ITW n°3: Anso - K fighter.
ITW n°3: Anso - K fighter.
one of the creators of the superb Association We are here :)
First of all, thank you very much for agreeing to share the story of your K & your tips, it’s really courageous and generous of you :)
Let's get started:
Who are you ?
First name: Anso, AKA Anne-Sophie
Age: 27 years old
Profession : Business associate in aeronautics
Where do you live ? : I live in Paris in the 15th arrondissement
Can you summarize your story for us as a (K fighter) ?
Quel K: I had Ewing Sarcoma located on the 4th left side, between the heart and the lung
When was it discovered? How old were you ?
It was discovered somewhat by chance while I was finishing my studies in Germany by a kind doctor. He sent me for an X-ray, which was followed by a CT scan with injection which revealed my 14cm tumor, hence urgent repatriation to France for additional examinations and biopsy within 24 hours.
I was 24 years old then, and I was 3 weeks away from finishing my studies.
Under what circumstances was it discovered?
It was discovered somewhat by chance, because I had back pain in my left shoulder blade (normal, the tumor was growing there), but all the doctors, physiotherapists, osteopaths and other back specialists had no idea. then nothing detected. As a result, the following symptoms were difficulty breathing, not having any breath after climbing a few steps, and taking 20 minutes instead of 10 minutes to go to school. That's what tipped me off, but it was mainly thanks to my roommate that I went to see him there, because I often almost passed out coughing in the morning in the room. bath.
How long have you been in remission (how long?)
I have been in remission for 25 months (2 years and 1 month), in great shape and with an incredible desire to live. Life is beautiful, carpe diem!
What treatments have you had?
chemo: if you have had it: name of the cocktails
I had the EMPTY “cocktail” made up of 4 products whose names I no longer remember, but in any case it was pre-operative courses of 5 days / 4 nights of injections in hospital, and in post-operatively, they removed one of the products, reducing the duration of the treatments to 4 days / 3 nights.
I had 6 treatments pre-operatively and 8 treatments post-operatively, all alternating every 3 weeks.
radiotherapy: if you have had it
I had targeted left chest tomotherapy with a few sessions also on the right (because at the start of my treatments I found a small spot at the top of the right chest). I had 35 sessions which each lasted around 25 min.
operation if you have had one (how long were you hospitalized):
I had a fairly major operation after my first 6 VIDE treatments which aimed to reduce the size of the tumor.
I had a parietectomy of the 3rd , 4th and 5th ribs of the left thoracic, with titanium reconstruction of 2 ribs to continue to protect the rib cage. It was an operation that lasted almost 5 hours, and after which I had to stay in respiratory intensive care for 13 days, then 8 days in the thoracic unit.
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 ;))?
1/ chemo: the helmet, your affinities with the nurses,
how did you live the day before, the same day, the days after?
and what were your tips?
I lost my hair very quickly (within 10 days after my first chemo injection), so as a tip on this subject, I had two little colored bamboo hats, very soft, that I liked to wear during the winter , To not be cold. Otherwise, a panama on your head during the summer when it was hot. I bought a wig, but I had to wear it for 10 days, because I didn't recognize myself in the mirror, having curly hair and having had to resign myself to buying a wig with straight hair because the curly, it doesn't exist in a wig.
The Emla Patch saves life, especially the more time goes on in the treatments, because the skin becomes more and more sensitive. So, don't forget to put it in well in advance of your arrival at the hospital. And therefore, position the shoulder well back so that the nurse can aim even better to poke into the pack.
Bringing soft clothes was super important to me, and having my computer and my iPhone to be able to communicate with the outside world or watch films.
2/ hospital: nurse / doc / caregiver contact
I have been very lucky. I received my chemo and radiotherapy treatments at the Institut Curie in the 5th arrondissement, and everything went very well, I came across pearls who pampered me, who were attentive and who took the time, when necessary, to sit down with us if we needed it.
For my operation, I was sent to the Foch hospital in Suresnes, and again I was very well supported throughout the surgery and post-operative period, whether with the surgeon, the anesthetist or the nurses or physiotherapist.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
At the very beginning, before the chemo started, I went to the cinema a lot and saw a lot of friends. Then, with the start of treatments, it was much more complicated to do things. My iPhone became my “best friend” because I could still chat with friends and to clear my head, I put on music and headphones.
Also, something that surprised me a lot but which did me a lot of good, was taking my little nephew in my arms... he was born a few days before my operation, and thereafter, every time I had him in my arms, I no longer had pain anywhere, it was as if he took all the physical pain to help me…. Magical moments and memories with a little piece of cabbage who has since become my godson.
What practical tips can you advise us?
1/ beauty: varnish/magic creams/scars & co
Varnish in abundance J even if the doctors are not necessarily for it, because the sat is not necessarily possible to take if you have painted hands, but it's fun and it adds color to everyday life, especially at home. hospital J I had my feet painted in lagoon blue colors for a more exotic and fun touch J
Afterwards, in terms of cream, I worked and still work with Lipikar from La Roche Posay, because it was very nourishing and above all odorless (I had a very sensitive sense of smell).
For scars, a good physiotherapist to massage and rehabilitate the operated area, then moisturize it well and put sunscreen on it so it doesn't mark.
For my head, I had my head shaved on December 24 at the hairdresser who shaved me without a comb... But as I didn't like it because it leaves little hairs and therefore it's dark, I finally asked my brother-in-law to shave my head with a manual razor so that my scalp was smooth… And then I liked my reflection J
Castor or sweet almond oil is very good for hair loss and shaving, as it allows the scalp to be less painful if massaged with it. Likewise, during regrowth, if you massage the scalp for a few minutes every day with one of these oils, it will stimulate hair regrowth even more and nourish it even more.
For makeup, I needed to wear makeup, even in the hospital, and even more for myself than for others. Not losing one more habit, a little pleasure J I learned to draw my eyebrows from a beautician outside the hospital, and to use eyeliner to alter the fact that I no longer had eyebrows.
Finally, I recommend treating yourself and wearing scarves and hats during treatments. It's fun, it changes, it's pretty, it brings color. There are tutorials on the internet for tying scarves, and in the store too, I came across some very good people who showed me and taught me how to tie it in various ways.
2/ look, your favorite look chemo, hospital, every day to feel good / shopping
I admit, I didn't make much effort in terms of looks, because firstly, the treatments really left me flat, and secondly, I don't really like shopping because I've been very self-conscious since I was 12... So, during the treatments, we were practical and gentle. I found myself some great slippers for the hospital, but other than that, it wasn't glamorous every day. I just wanted to find casual outfits that I felt pretty good in, especially in the hospital with the needle dressing and the injections which make life complicated since you have a perf foot to stuff.
3/ daily (sport, food & co)
If there is one piece of advice to remember, it is to eat less or fast the day before a chemo injection. I really saw the difference, much less abdominal pain during the injections if I had eaten less the day before.
I also had a very unpleasant metallic taste constantly in my mouth since the first day of chemo, which faded a month after the end of the treatments. Suddenly, even drinking water tasted horrible. The only drink that didn't have it was coke, so I drank it, especially during chemo.
My tastes changed a little during the illness. But I remember several times hearing doctors say that we must continue to eat a varied and balanced diet.
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
“Don’t worry, the hair grows back”
“It's a short year in a lifetime, isn't it? , it'll be OK "
“Wow, 1 year of vacation, well that’s okay, that’s cool”
“Well, you're a bit pale / yellow / you have these dark circles / you have a dull and yellow complexion, it's not the best shape from what I see”
“Luckily you had them, those extra pounds”
“We knew you were in better shape”
“No, but they always do tons of it in the series, no, but chemo is okay in the end, right? »
“You should be ashamed of walking like that in the street” (while I was walking in the street with a Panama hat in August in La Baule, comments made by a grandmother who addressed me in the street and said to me grabbing the arm).
How did your loved ones support you?
And what advice could you give to loved ones who accompany a K fighter?
My loved ones were on top from A to Z. They were very present, each in their own way. They were present at the hospital, at home. They took turns and set up an SMS chain of dozens of people to get news and follow my daily life. They knew how to give me strength, courage. They knew how to be by my side when I needed them. They also experienced a complicated illness over which they were powerless, but they managed to help me get through it in a gentler way. I was never alone during this not necessarily very simple period of life. I was very lucky to be surrounded like that. Some are not so lucky, hence our idea of creating the association We are here to bring together and support young people facing cancer.
What would be the useful (internet) links that helped you during K?
I stayed away from the internet. I didn't do a google search because I didn't want to know more about my illness. If I had any questions, I preferred to ask them directly to my oncologist.
Facebook helped me keep everyone around me informed. Those who were interested took news and commented on my statuses, the others too bad, the important thing being that it saved me energy so as not to have to explain the situation to everyone individually.
What has the K changed in your life…?
Cancer confirmed my vision of life and its fragility. No more procrastination, I am in action, and I remain convinced that nothing is impossible.
So I undertake many projects, and I love those butterflies in my stomach at the idea of a trip, a meeting, an associative or professional project.
I am much more into gratitude, patience, listening too. And my daily life has changed, as has my lifestyle. Sport is an integral part of my life, I pay attention to my diet and my sleep. And I try to be kinder to myself every day.
Tell us what you want (which may not have been in my questions):
I only briefly touched on the Association, so I'm going to talk to you about it here in more detail, so that you have a slightly more complete vision of what we do and what we have created with friends.
Basically, we all got cancer when we were between 15 and 25 years old. Now all in remission, we decided to create an Association to support and accompany those who are falling ill today through support groups and sponsorships.
I carried this idea because, when I fell ill, I had a spontaneous godfather, who was my little sister's best friend, a tall Malagasy man with a tender heart who brought me a lot. Unfortunately, life had it otherwise, and he died on the 5th day of my first injection, but this idea of support has not let go of me since. And so, I subsequently had the chance to meet Chloé, then Christo & Théo and finally Camille , and together, by talking to them about this idea, we ended up deciding, given the enthusiasm generated, to create our own association and bring this project to life.
Indeed, few initiatives are in place today in France to support this somewhat pivotal age group with its own life issues (independence from parents, studies, professional life, love, sexuality, etc. ) and which must be taken into consideration despite the illness. And we said to ourselves that there was nothing better than a former patient to speak on the subject, since he has been through all that.
This is how we came to launch the association last October with both the discussion groups on the Institut Curie to begin with, and to put an official website online immediately, which you will find at the following address : www.asso-onestla.fr
There you go, I think I told you everything on the subject :)
I invite you to discover without further delay the brilliant presentation video of the Association of Anne Sophie & her great team: We are here ! (below)
Thank you again for your testimony and for sharing your K/tips ;)
You can also follow the Asso On est là on FACEBOOK ;)
Lots of sweet positive thoughts
See you soon
ITW n°3: Anso - K fighter.
one of the great creator of the French Association We are here :)
Thank you very much for accepting to share your story of your K, it's very brave and generous :-)
Who are you?
Name: Anso, AKA Anne-Sophie
Profession : Assistant in Aeronautics
Where do you live ? : in the 15th in Paris
Can you summarize your story as K fighter?
Whish K: I had a Sarcoma of Ewing located on the 4th left rib, between the heart and the lung
When was it discovered? How old where you?
It was discovered a little bit accidentally while I ended my studies in Germany by a kind doctor. He sent me to make a radio, which was pursued by a scanner with injection which revealed my tumor of 14cm, so I was sent back as a matter of urgency in France for additional examinations and biopsy within 24 hours.
I was then 24 years old, and I was 3 weeks to finish my studies.
In what circumstances was it discovered?
That was discovered a little bit accidentally, because I had back pains at the level of the left shoulder blade (normal, the tumor grew there), but all the doctors, the physios, osteopath and other specialists of the back didn't find anything . As a result, the following symptoms were respiratory difficulties, to have no more breath when having gone up some steps, to take 20 min instead of 10 min to go to the school. That's what alerted me, but it is especially thanks to my roommate that I went to consult over there, because I often nearly passed out while coughing in the morning in the bathroom.
If you are under process, or in remission (since how long?)
I am in remission for 25 months (2 years and 1 month), in great shape and with an incredible passion for life. Life is beautiful, carpe diem!
What treatments did you have?
I had the EMPTY "cocktail" composed of 4 products the nicknames of which I do not remember anymore, but in any case it was preoperative cures of 5 days / 4 nights of injections in hospitalization, and in postoperative, they removed one of the products , reducing the duration of cures in 4 days / 3 nights.
I had 6 cures in preoperative and 8 cures in postoperative, quite alternated every 3 weeks.
I had of the left thoracic targeted with some sessions also on the right (because they found at the beginning of my treatments a small stain at the top of right thoracic). I had 35 sessions which each lasted approximately 25 min.
I had a rather heavy operation after my first 6 cures of SPACE which aimed at reducing the size of the tumor.
I had removed the 3rd, 4th and 5th coast of thoracic left, with reconstruction in titanium of 2 quotations to continue to protect the rib cage. It is an operation which lasted about 5 hours, and of which later I had to stay in the intensive respiratory care for 13 days, then 8 days in thoracic service.
Which tricks in direct link with the K do you want to share (your feeling with doctor, your good plans of organizing the treatment, all which seems to you useful;))?
I lost my hair very quickly (10 days after my first injection of chemo), so as a trick on this matter, I had two small hats in bamboo of color, very soft, which I liked wearing during winter, not to be cold. Otherwise, Panama on the head during summer when it was warm. I bought a wig, but I wore it 10 days at the very most, because I did not recognize myself in the mirror, having a nature of curly hair and having to resign me to buy a wig with smoother hair because the curly, did not exist in a wig.
The Patch of Emla saves the life, especially more the time forward to the treatments, because the skin becomes more and more sensitive. As a result, do not forget to put it well early on arrival at the hospital. And as a result, well position the shoulder behind so that the nurse can even better aim to pick in the pack.
To bring clothes soft was very important for me, and to have my computer and my iPhone to be able to communicate with the outside or look at movies.
2/hospital: contact nurse / doc / nurses help
I was very lucky. I received my treatments of chemo and radiotherapy at the Institute Curie in the 5th district, and everything passed very well, I fell on sweethearts that spoiled me, who were attentive and gave me time, when it was necessary.
What made you change your ideas / to empty your head (before chemo, operation and co)?
At the very beginning, before the beginning of the chemo, I went a lot to the cinema and I saw many friends. Then, with the beginning of treatments, that was much more complicated to do things. My IPhone became my "best friend" because I could exchange at the same time with buddies and to empty my head, I would listen to some music.
So, a trick which surprised a lot me but which helped me a lot, that was to take my small nephew in my arms when he was born a few days before my operation, and afterward, every time I had him in my arms, I had no more pain, it's as if he took all the physical pains to help me. Moments and magic memories with a small poppet became since this my godchild.
Which practico-practical tricks can you recommend?
Nail polish in profusion even if the doctors are not necessarily for, because the sat is not necessarily possible to put if we have painted hands, but it is funny and that puts color in an everyday life, especially at the hospital I would make my feet of typical blue lagoon colors for a more exotic and funnier touch
Then, as for creams, I worked and always worked with Lipikar of Roche Posay, because very nourishing and especially has no odor (I was very sensitive to smell).
For scars, a good physio massage and re-educate the operated zone, then good to hydrate it and good to put the sunscreen above for it not to mark.
For the head, I shaved the head on December 24th at the hairdresser…But as I did not like because that leaves small hair and thus it is dark, I finally asked to my brother-in-law to shave my head with a manual razor so that I have the smooth skull …And there I liked my reflection
The oil of castor-oil plant or sweet almond is very good for the loss of hair and shaving, because that allows the skull to ache less if we massage it with it. Also, during the regrowth, if we massage the skull every day a few minutes with one of this oil, it will stimulate even more the regrowth of hair and that will feed them all more.
For the make-up, I needed to make up, even at the hospital, and more for me than for the others. Not to lose a habit anymore, a small pleasure I learned to do shape eyebrows by a beautician outside the hospital, and to use an eyeliner to distort the fact that I did not have eyebrows anymore.
Finally, I recommend to indulge and to carry scarfs and hats during the processing time. It is funny, that changes, it is attractive, it brings color. There are tutorials on the Internet to knot scarfs, and in shop also, I met people who did it very well, who showed and taught me how to knot it in various manners.
your preferred chemo look, hospital, every day to feel good
I admit, I did not make many efforts, because the treatments made me very tired, and secondly, I do not like going shopping because since I am 12 I don't feel good in my body…. As a result, during treatments, it was practical and comfortable. I had great slippers for the hospital, but other than that, it was not glamorous every day. I wanted just to be in casual clothes in which I felt more or less good, especially at the hospital with the bandage of the needle and the injections which complicates the life seeing that we have the foot of perf whom we are stuck with.
3/everyday life (sport, food and co)
If there is an advice to be remembered, it is to eat less or to fast the day before an injection of chemo. I really saw the difference, much fewer abdominal pains during the injections if I had eaten less the day before.
I also had a very unpleasant taste of metal permanently in the mouth from the first day of chemo, which became blurred one month after the end of treatments. As a result, even to drink some water had a terrible taste. The only drink which had no it was the Coke, the blow I shot up with that, especially in chemo.
My tastes a little changed during the illness. But I several times remember having heard doctors who told me it is necessary to continue to eat varied and balanced.
What are the expressions which you remember that you were told during the K and that could have been avoided?
“Don’t worry, hair, grows back”
“It is short 1 year, in a life, right?, it’s going to be ok “
"wow, 1 year of holidays, that it is cool"
"well you are a little bit pale / yellow / have you a complexion let's say faded and yellow, you don't look on the top of your game "
“Good thing you had them, these kilos too “
“we knew you more in shape”
"no but they always make it tons in the series show, but at the end the chemo is nothing, right?"
"you should be ashamed to walk like that in the street" (while I was walking in the street with Panama hat in August in Baule, words held by a grandmother who shouted this to me in the street by catching my arm).
How did your close friends accompany you?
And what would be the advice that you could give to the close friends/relations who accompany one K fighter?
My close friends were at the top from A to Z. They were very present, each in its own way. They were present at the hospital, at the house. They took turns and had taken up an SMS channel of tens of people to take news and follow my everyday life. They knew how to give me the strength, the courage. They knew how to be by my side when I needed it. They lived a complicated illness in front of which they were powerless, but they managed to help me to cross it in a gentler way. I was never alone during all this period of life not necessarily very simple. I was very lucky to be so surrounded. Some are not lucky, where from our idea to create the organizatin. We are there to gather and support the young people in front of cancer.
What would be the links useful that helped you during K?
I stayed far from the internet. I did not do Google research because I did not want to know more about my disease. If I had questions, I preferred to ask them directly to my oncologist.
Facebook helped me to keep everyone informed around me. Those whom that interested took news and commented on my status, and the others too bad, being important saved me a level of energy not to have to explain to each the situation in individual.
What K changed in your life?
The cancer confirmed my vision of life and its fragility. More procrastination, I am in the action, and I remain convinced that nothing is impossible.
I so begin numerous projects, and I love these butterflies in the stomach at the idea of a journey, of a meeting, of an associative or professional project.
I am much more in the gratitude, the patience, the listening too. And my everyday life changed, just like my lifestyle. The sport is an integral part of my life, I pay attention to my food and to my sleep. And I try to be friends with myself on a daily basis.
Open fields;) tells us what you wish that was not in my questions):
I only approached the organization quickly, so I am going you to speak about it here more in detail, so that you have a little more complete vision on what we make and what we created with friends.
Roughly, we were all sick of cancer while we were between 15 and 25 years old. Today all in remission, decided to create an organization to support and accompany those who today become sick so by means of groups of words and sponsorships.
I carried this idea because, when I fell ill, I had a spontaneous godfather, who was the best friend of my little sister, a big Malagasy in the heart which brought a lot to me. Unfortunately, life wanted it otherwise, and he died in the 5th day of my first injection, but this idea of support did not leave me since. And as a result, I was afterwards lucky enough to meet Chloé, then Christo and Théo and finally Camille, and together, by speaking to them about this idea, we eventually decided, saw the provoked enthusiasm, to create our own organization and to make this project live.
Indeed, few initiatives are in position today in France to support this a little bit though age bracket with problems of his/her own life (independence of the parents, studies, professional life, love, sexuality, etc.) and this is necessary to consider in spite of the disease. And we said to ourselves that nothing better than a former sick person to speak on this matter, because he crossed the bridge.
Here is how we managed to launch the organization last October with at the same time the groups of words on the Institute Curie to begin, and to put an on-line official web site in stride, which you will find at the following address: www .asso-onestla.fr
Here we are, I believe that I told you everything on the subject
Thank you so much Anne Sophie for sharing all your tips & story
Follow We are here on FACEBOOK ;)
Send you many good vibes