ITW n°113: Zoe - K fighter (Hodgkin lymphoma)
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Who are you ? First name: Zoe Age: 17 years old Profession: high school student Where do you live: Near Geneva Why do you agree to share your story today? Because having cancer at such a young age is rare, at that age friends don't know how to support us and we often find ourselves alone and misunderstood. So it’s to show young K fighters like me that they are not alone and that we can get through it! What are your qualities (in a few words)? empathetic, calm, sporty and since my K I would add courageous What are your passions (in a few words)? basketball, skiing, dancing, and my friends! What K (what cancer - grade if you wish / stage ditto): stage II Hodgkin lymphoma When was it discovered? How old were you ? January 2016 at 17 years old Under what circumstances was it discovered? At the end of 2015 I discovered a large “lump” in my neck. At the time I almost laughed at having a lump like that in my neck telling me that sometimes the body does strange things but that it wouldn't take long to go away. Seeing that it wasn't going away and that on the contrary others were appearing, we consulted and that's where it all started... If you are currently undergoing treatment, or in remission (for how long?) Complete Remission!!! Since 06/15/16 Can you summarize your (K fighter) story for us? After almost a month of searching for what this "bouboule" could be, the verdict came at the end of January after a puncture. It's lymphoma. I then had to be hospitalized to verify that it was Hodgkin's (the most common type of lymphoma and fortunately for me the least serious) and to determine the stage of the disease. The hospitalization lasted a week. During which I had an operation to remove my big “lump” which was in reality a lymph node. I also had my first PET-CT and various heart and lung exams to make sure everything was in order before chemo. I continued with chemotherapy every 2 weeks until the end of May. What treatment did you have? chemo: if you have had it: (name of cocktails / number of sessions) ABVD cocktail for 8 sessions. radiotherapy: if you have had it: (number of sessions) No radiotherapy operation if you have had one (how long were you hospitalized): Operation to remove a node 5 days of hospitalization other: I wore a Picc Line to get through chemo, it's very advantageous when you're young and you don't have many chemo sessions planned: no need to go to the operating room to put it on, it's very easy to remove and immediately after the final results and above all does not leave a mark! However, they didn't put it on me right away and it can be kept for a maximum of 3 months.... 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: (ex: your tips, the helmet, your affinities with nurses): I lasted about 5 sessions with the helmet and ended up stopping. I tolerated it very well at the first session then less and less until I couldn't tolerate it at all anymore... So I preferred the comfort of remaining without a helmet, especially since my hair was still falling out. How did you live the day before, the same day, the days after chemo? and what were your tips? My tips? Don't think about it! The day before was the day when I was physically in the best shape since I had time to recover between 2. So I took advantage of it to go to class and act like a normal teenager. I admit that in the end I was already a little sick the day before chemo just thinking about it... On the day itself, I advise you to surround yourself with your loved ones: they take our minds off things and we want to let ourselves be less defeated in front of them. The next few days I slept as much as possible. When we sleep it's relief! No nausea or pain! 2/ hospital: (e.g. contact with nurses / doc / caregivers): The nurses were great, always there to reassure, relax the atmosphere and simply listen to us! (And no, my judgment is not distorted by the fact that I am destined for this profession) As for the documentation, I found that there was a bit lacking for teenagers like me... All of them were intended primarily for adults... 3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits): No... What did you do to clear your mind/clear your head (before chemo, surgery & co)? I had a wathsapp group with my close friends. So as soon as I had a little bout of the blues I wrote and those who were available at that time responded to me and comforted me. It always did me a lot of good. I also did a lot of outings with friends which were essential for me during the treatment, it was my escape.. I also did a lot of shopping! In a word, all the little pleasures of life to be able to enjoy and remember how beautiful life is. What practical “well-being/beauty” tips can you advise us? 1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.) Cicalfate against scars after operations. I was also able to participate in a beauty activity from an association “ Look good feel better ” which did me a lot of good! 2/ look, (e.g. your favorite chemo, hospital, every day look to feel good): My usual simple look. 3/ daily (e.g. sport, food & co, meditation, reading, etc.) Nothing in particular 4/ hair problem (eg: did you wear a wig, scarves, hats) I lost almost all my hair so I had to cut it very short (I didn't shave) and as I didn't have enough left on my head I wear a synthetic wig and more rarely a scarf. And to bathe (as it's summer) I wear a scarf sometimes even nothing at all! I admit that I find it funny the look people around me make when I suddenly take off my wig or my scarf to go swimming. A little over a month after the last chemo I have “little black spots” that appeared on my scalp. My new hair is arriving!! Even if at this stage they are tiny... Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it? At first yes a lot. I had to go to high school with a mask... So of course I had the right to comments... And then I got used to it and even if the mask always bothered me a little I faced the looks of the high school students a lot more easily. It was the same for my wig at the beginning I told myself that everyone noticed it and I didn't dare show myself. Now I openly declare that I wear one and I take full responsibility for it! What are the “nugget” / feet in the dish phrases (that you remember) that we were able to tell you? say during the K and which could you have avoided? “My grandfather died of the same cancer as you!” (The classic) “If you die you will be lucky you will no longer suffer, however we will have to live sad all our lives” (the one who wants to be reassuring) “Do you still have hair?” Then “Do you have a new haircut?” (My wig was a success...) or "I like your head, it's pretty" “Why are you wearing a mask?” (One day I had the right to say: “Is the mask against hay fever?”) How did your loved ones support you? Little words of support, messages, visits... My grandmother and a friend were there for the chemos, I would say for K fighters that you should not hesitate to say when you need support. Often those around you, friends don't know how to react. Take the opportunity to say what you want them to do for you and how they should act. When you have a K you can afford to have a little capricious side. Moderately though! Above all, they must not scare away loved ones and friends who are also suffering from the situation, we must not forget that... I thanked them as often as possible and told them how valuable their help was to me. And what advice could you give to loved ones who accompany a K fighter? Listening, showing that you are thinking about the person... You can't imagine how much good even a little message can do, especially in the evening before chemo when you often feel a little depressed. My friends, as great as they were, never really understood what chemo meant to me. When you don't experience it, it's hard to realize it, especially when you're young. So I missed the spontaneous messages the day before and the day of chemo. I therefore advise loved ones to be particularly present on chemo days, just a little message is already great! 😉 Did you find out about K on the internet? Yes If so, does it make you feel good? At first no until I came across the links that I will mention below. If so, what would be the useful (internet) links that helped you during K? This site with these testimonies helped me a lot (one of the reasons why I write in turn There is also: Kiss of a Hurricane Chao Gunther And Femininity&JY What has the K changed in your life…? Having cancer has profoundly affected and changed me. Now I know how beautiful life is and that you have to live it to the fullest. Ironically I have never felt so lucky as since I had cancer I understood how privileged healthy people are and how lucky I was to be able to live a normal childhood. I learned a lot about children's K's and it really touched me, all these little warriors of the shadows. We forget them too often and they fight against the K without complaining while many healthy people complain to one side or another. Free field ;) tell us what you want (which might not be in my questions): I would like to thank all those who are involved in fighting cancer through events and associations, as well as those who seek to change the image of K and its consequences. And I have a big thought for everyone who is currently fighting against a K. May the force be with you!‐‐‐‐‐‐‐‐‐‐‐
Thank you Zoé, for your precious testimony and your infectious joy of living.
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Charlotte