ITW n°110: Anais
Let's get started:Who are you ? First name: Anaïs Age: 26 years old Profession: student specialized educator Where do you live: in Toulouse Why do you agree to share your story today? Because since the beginning of the announcement of my K I regret not having any talent to share what I am going through and that many times I feel alone because of my age. I have a lot of trouble finding myself through people's stories. What are your qualities (in a few words)? according to those close to me, I am constantly smiling, I refuse to be seen as a “cancer” and I continue to take care of others despite my care What are your passions (in a few words)? I love life despite everything, it remains my greatest passion (hence my desire to become a specialist educator), I like to personalize objects (painting, decopatch...) and, I love cooking and eating =) What K (what cancer - grade if you wish / stage ditto): stage 3 breast cancer with no history in my family When was it discovered? How old were you ? it was discovered in December 2015 exactly on the 3rd, 2 days before my 26th birthday! Under what circumstances was it discovered? one Wednesday evening I went go-karting with friends and the next day I had pain under my left arm. I reported it to my mother who told me to take a doliprane to calm the pain. I do it, the pain does not go away, I wait two days before going to see my doctor who put me on antibiotics, telling me all the same to have an ultrasound when I get back from my vacation. I come home, make an appointment and then at the ultrasound they tell me that there is a nodule... hmmmm ok, a nodule but still??!! I had forgotten my mutual card, the lady then told me to go get my card, I'm going... and when I arrived a tall bearded gentleman said to me: Ms. ENDELER we're going have a mammo!!!!! haaaaaaaa panic on board!!!! I go there and he confirms that there is a nodule (ok! I can feel it, no need for a mother for that!) Then, I was told to go and have an MRI again (no place for at least 1 month, impossible I had to take the plane in 3 weeks! thanks to my mother's connections I was able to get an appointment 2 weeks later) MRI, then biopsy the same day.... 10 days later, on December 3rd, I called my doctor who said: you can come, we need to talk about serious things!! I immediately understood that my life was going to take a 180 degree turn!!!! If you are currently undergoing treatment, or in remission (for how long?) I am currently undergoing chemotherapy. I started my treatments on February 5, 2016. On June 20 I started the rays (29 sessions) Can you summarize your (K fighter) story for us ? My story...I will fill in the other questions first What treatment did you have? chemo: if you have had it: (name of cocktails / number of sessions) So I started with 3 doses of FEC 100 spaced two weeks apart each. And, now I'm on Taxol, once every week, tomorrow I'm doing my 9th chemo, after that I'll only have 3 left (YOUPIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII) radiotherapy: if you have had it: (number of sessions) I just know that I start on June 20 (my dad's birthday) and that I am leaving for 29 sessions operation if you had one (how long were you hospitalized): so I had a lumpectomy on the left breast on December 29, I was hospitalized for 3 days (Thank you, I was able to be at home for the day of the year) 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): so, regarding the hair, I put the helmet on once during the FEC 100 protocol and I was very traumatized so I didn't put it back on, I knew that my hair was going to fall out with or without a helmet with this protocol, so I made up my mind. On the other hand, wrist and ankle cuffs, with Taxol, to prevent tingling in the extremities are very effective. I read the war of stetons, the two volumes, which helped me a lot to understand chemo and its effects, being very anxious, it allowed me to no longer stress at the slightest symptom since she too had them had. I also recommend Maligne for my age group because I found myself in what she felt. The nurses, both those from the oncopole and those who came to my house, I call them my little friends because a real bond was created between us. They told my brother just last week: Anaïs, of course we see who it is, she's a VIP here =) I have the right to a kiss when I go to their service =) =), this link is essential for me. How did you live the day before, the same day, the days after chemo? and what were your tips? So, at the beginning the day before I was super stressed, depressed... then, over time I got into a rhythm which is that going for chemo is like going to the market. I go there with my basket, my bag with lots of unnecessary papers, my neck pillow, my bottle of water, my phone charger, my tablet and a packet of cake. I only use the cushion and the water bottle. But it is a container, reassuring for me, this basket. Each day of chemo I add a charm that a loved one gives me to my Pandora bracelet. I suggested that they materialize this adventure with me through a charm that they choose themselves. So, it really helps me on days when I feel tired of all that and as I'm quite far from my family (my brother is in Marseille, my parents are in the Central Region and my childhood friends too) they don't can't be there at every chemo so I touch my charms when the stress rises and it reassures me. The same day, I especially don't want to be alone when the treatments are over and I refuse to sleep even if I'm completely exhausted with the premedication. I build up pressure before being infused, once they are connected to my catheter port I release the pressure with a few tears =) When going out, I protect myself, I try not to move too much and viola =) With FEC 100 I didn't move afterward because I was super disgusted by EVERYTHING! and with Taxol, I just have some palpitations because of the cortisone. My tip is to never go to chemo alone and not to stop myself from laughing in the waiting room with the person(s) accompanying me. 2/ hospital: (e.g. contact with nurses / doc / caregivers): I popped all the stitches on my breast so it took 3 months to heal. I saw the nurses and my surgeon twice a week! I asked them to address me on familiar terms, the white coat frightens me enough for them to address me! I admitted to my surgeon that I gave her a little name: Titine instead of Justine =) she told me: “that suits me, my grandfather called me that” she was all red, I love her =) the day before my operation I helped her: “no problem nonsense tonight you go to bed early eh, you have to be in good shape (the operation was at 8am =)) she laughed and told me: don't worry. Frankly, I advise everyone to invest in the connection with caregivers, it helps to de-dramatize certain situations and to be able to come up with humor without people feeling offended. The nurses know that I can go from laughter to tears very easily but that when I cry it's because I'm in a lot of trouble, so they take the time to listen to me and I find that's very important in the follow-up. 3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits): I wanted to try homeopathy but I see that without it, I don't have side effects such as fungal infections! so, my parallel medicine is the love of those around me. What did you do to clear your mind/clear your head (before chemo, surgery & co)? I LIVE ! I'm 26 years old, I'm living my life. I had to suspend my training because it's the year of my diploma but I still live, friends, family, restaurants, outings... I listen to a lot of music, I look forward to the future with my darling: we go to the dealership, we talk about our future monsters, our upcoming vacations... I make my K, my treatments, the “mundane” stages of life even if it means annoying certain people who cry when they see me or if I talk about what I’m going through! What practical “well-being/beauty” tips can you advise us? 1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.) Nail care: acetone-free nail polish remover, silicon varnishes from La Roche Posay, castor oil and a Terre d'Oc karate hand cream (not in the photo) that I buy at Nature et discoveries. Body and hair care, I varied the brands because I quickly got tired of the smells. And, as Bioderma soap has no real smell, I alternate from time to time with Klorane's superfatted shower gel. And I forgot to put on the deodorant: Rogé Cavaillès without aluminum salt. Really tip top Facial care: Mask from Avene, Extreme Tolerance, once a week Morning and evening cream for intolerant skin from Avene An organic micellar water from Léa Nature laboratories and an oily make-up remover from Klorane to remove waterproof make-up For makeup: I found an eyebrow kit with stencils and one without stencils at Kiko. Each kit cost me less than 15 euros while at Sephora it costs around thirty euros. 2/ look, (e.g. your favorite chemo, hospital, every day look to feel good): rule n°1 always followed even when staying at home, I tried once not to wear make-up, it was totally depressing My essentials: my little black hat under my scarf (I think it looks less “cancerous” =)) my chemo look: the same as when I went to work, always feminine and with bright colors, just to brighten up the extremely depressing waiting rooms of the oncopolis. And, to feel good, I didn't buy products dedicated to “cancer patients”, my mother found me great scarves at Galeries Lafayette which are very soft and easy to handle. 3/ daily (e.g. sport, food & co, meditation, reading, etc.) I tried to practice physical activity every day but it wasn't possible with the chemo, so now, while waiting for the rays to start, I do my sports session every day and what's that? does a good job. I tried reading but apart from My Line and The War of the Nipples nothing interested or appeased me. 4/ hair problem (eg: did you wear a wig, scarves, hats) I tried the wig...it's not for me I opted for scarves which I find very feminine. Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it? At the oncopolis, the gaze of others was quite heavy. I was often the only “young” and “colored” one, I was the UFO among all these people over 40 who looked like they were on their way to the slaughterhouse. So, I relied on my lame jokes and my smile to counter their staring and intrigued looks. In the street, it was more difficult, we are in the middle of a period of confusion with “veiled” people, so I am much more controlled since I put on my headscarf. This situation has a way of annoying me, so I have my little sentence ready: “I just had cancer and therefore no more hair, I’m not going to plant a bomb!” I don't want to go out without my scarf because I don't want people to look at me with pitying eyes: oh poor thing..... etc. My smile is my greatest weapon in the face of all this. What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided? Wow, there were quite a few So a friend calls me telling me that he has learned that he is sorry for me, I tell him that it's nothing, it can be cured... and then he tells me about his uncle who died there a few months from cancer which has spread. He talked to me about it for 15 minutes! I hung up totally disappointed!!!!! The most awkward people were those who told me about people around them who had cancer and died from it. Ha! there was also when I lost my hair, I couldn't stop crying (it was the most difficult stage I must admit) and people couldn't find anything better to say than: it's growing back, it's it doesn't matter!!!!!! I told them that the next one who tells me that the hair grows back I will shave his head and we will talk about it again if it is not serious! A lady at the center where I am going to take my blood tests asks me how old I am. I answer her so 26 years old and then she says to me: but you are young! I answered him: yes and? She didn't speak any more! Very often, people couldn't find anything other than to say to me: but you're young! as if it wasn't difficult enough for me in the middle of my life to be stopped like that! How did your loved ones support you? I have the best relatives in the entire universe! my parents, my brother, my boyfriend, my family who are 10,000 kilometers away (the reunion), my friends, my colleagues, my boss... everyone was fantastic. I have received so much love since the announcement. My mother was at my house very often, especially at the start of chemo, when she had to be present at work she would come up and then come down for chemo and the days that followed when I was very tired. My father came when my mother could not get away from her work. My brother who is in Marseille also came to attend chemo. But the best of the best is one of my aunts from Reunion who took 3 weeks for my operation and 3 weeks for the end of chemo. My boyfriend is the best of all friends on the entire planet =) he accompanies me by constantly continuing to plan for the future (purchase of a car, travel, children, etc.) They were present physically, materially, financially, mentally. THANK YOU to them, I would never have achieved this without their strength. And what advice could you give to loved ones who accompany a K fighter? don't say to yourself: oh well if he doesn't ask it's because he doesn't need it! it's false, insist, question... even if we seem talkative, there are many things that we have difficulty admitting and saying. Do not be fooled by appearances. Say things that seem obvious to you: you are strong, you are courageous, you look in good shape today... And do with them a positive count of each stage: only 8 more chemos, that’s progress! and no, you still have 8 left pfffff that’s a lot! Give him LOVE, lots of love. Do you find out about K on the internet? I had the misfortune of doing it once, I got scolded by the nurses, the surgeon.... lol, I will never look up information on the internet about my K again. What has the K changed in your life...? I no longer want to let my fears put barriers in my way, I am very fearful and anxious, especially about flying, so, apart from going to see my family at the reunion, I have never taken the plane to visit the world. (I'm going to visit Portugal this summer) I obviously saw the people without whom my life would have little meaning: my parents, my brother, my boyfriend and one of my many aunts = my hard core No more chasing people: whoever loves me follows me! if they want news from me they take it, I don't run after them anymore! It's finish ! My priority: to become a specialized educator, to help the most deprived people, to give them Love, I realized that it is not given to everyone to be Loved. And of course becoming a mother, I was waiting to have a permanent contract and a mega stable situation to start my family, but I don't want to leave this world without knowing what the Happiness of giving life and being a mother is. My philosophy or rather what I often repeat to myself in my little hairless head =): a life without love and without madness is very sad, so let's live at 10000000 miles an hour while there's still time and COME WHAT MAY! Free field ;) I've talked enough about myself =) thank you for everything you do to facilitate our path to healing =)
Thank you Nanis for this sincere testimony, we are thinking of you.
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