ITW n°53: Team Ma Bulle.
Hello,
because loved ones also have a voice on the blog, today it is with a certain emotion that I present to you Team Ma Bulle : made up of Karine and Mathieu who testify on behalf of their wife and best friend: Fleur Anne, their K shock fighter who joined the stars... This testimony is a lesson in life, resilience and love, because they found the strength with infinite kindness to in turn carry Fleur-Anne's project, to give meaning to it all, to overcome the injustice of life, and show us that in life beauty is hidden even where we don't expect it /// My bubble a project driven by a rage to continue the struggle, carrying a beautiful message that love is stronger than everything ultimately... by spreading caring and comforting Bubbles of Love in little pockets full of surprises to brighten up the sad days of the hospital, I lets discover the courageous testimony of K and M, this beautiful tribute and this beautiful project.
a surprise bag filled with small gifts intended to change the minds of patients
Never give up!
Great discovery
LET’S START:
Who are you ?
First names:
Matthieu and Karine
Ages: both 28 years old
Professions:
Matthieu: Organization consultant at EY
Karine: I work for a participatory research program on the epidemiology of cancer, I take care of communications and lead the community.
You decided to continue to bring “ Ma Bulle ” to life together, how did this great idea come about?
This idea was that of Fleur-Anne, Matthieu's wife and friend of Karine. He was diagnosed with cancer just after he turned 26. For his first chemo session, his mother-in-law (i.e. Matthieu's mother) had prepared a bag for him containing magazines, a DVD and a card signed by his entire family. At each chemotherapy during the months that followed, she found this bag hanging on the handle, with different surprises slipped inside: sweets, books, photos... It gave her so much pleasure and it brightened up her treatment days so much that she wanted to replicate the idea for other patients at the hospital.
How have you divided your roles today, who does what?
There are 4 of us in the team: in addition to the two of us, there is Catherine, Fleur-Anne's mother, and Marie, her cousin.
Catherine is our seamstress and editor: she sews the fabric Bubbles and writes the texts for the booklets distributed with each Bubble to present the products of the month.
Matthieu takes care of logistics (reception of products, filling and distribution of Bubbles); he liaises with the Avec Foundation, which supports the project, and the hospital nurses.
Marie is in charge of social media and is our wellspring of new ideas from across the Atlantic (she lives in New York).
Karine is responsible for partnerships and helps Marie on social networks depending on the time difference.
What K did Fleur-Anne have?
Colorectal cancer with liver metastases.
What were your feelings as a loved one when the announcement was made? How old were you?
Matthieu: It was very hard. Indeed, as a relative, I attended quite a few examinations and gradually, the seriousness of the diagnosis progressed and at that moment we feel so helpless and guilty at the same time that it's quite terrible. to live. You have to understand that the person you love has developed an illness for quite some time and you say to yourself “How could I have missed this? or “Why didn’t I do that?” » in order to detect the disease earlier and thus increase the chances.
However, I wanted to tell her that life was putting this test in our path and that I will be 100% dedicated to her from now on and that together we will get through it.
Karine: The day of the announcement, I knew that Fleur-Anne had a doctor's appointment with her parents and I knew what time she was supposed to keep me informed. Without hearing from her (because of the additional exams she had to take), I was texting her and she ended up calling me. I will always remember his first sentence: “Okay, don’t worry, it’s going to be okay, but I have cancer.” I shouldn't have but I couldn't stop crying on the phone. And I asked him very concrete questions. I hoped it would help him tame this terrifying idea, to fight all the better, but in reality it was mainly me I was trying to reassure. I was 25, she was just 26.
What are the nugget phrases that we could have said to him or/and to you during the K and which could have been avoided? or that you yourself should have avoided ;)..?
Your questions, your fears, the sentences you would have liked to ask but which you did not dare to mention..?
Matthieu: I think the question he was asked the most was simply “Are you okay?” ". I think we asked her 50 times a day and at the end she responded with humor to show that things were going as well as possible.
I tried as much as possible to never transmit to him the different fears or anxieties that I may have had. I wanted her to feel that I was there with her in the fight and I had no doubt that it would have a happy outcome. But she also protected me and I would have liked to have had even more access to her fears so that I could play my role even more and find solutions to alleviate them.
Karine: She hated the “Oh, poor thing!” » because she always moved forward, without ever complaining or moping. She always acted strong, she was the one who protected us and reassured us. I would have liked to help him talk about his anxieties better.
What did you do to change his mind, were you able to find the right words ?
Matthieu: At home I did everything so that we could lead a normal life. Illness had no place and was not the center of attention. So we did what many couples do: outings to restaurants, to the cinema, I took her shopping… Then I set her challenges and she got gifts when she succeeded. For example on a weight to achieve or a task to perform.
In the same way in the hospital I tried to talk about things other than the illness. I brought up topics for discussion, I always had news from our loved ones, etc.
Karine: When she was hospitalized, I tried to bring daily life to her. We organized an aperitif in her room, a picnic in the hospital grounds, manicure sessions, custom shopping... When she lived at home, I tried to have the same relationship with her as she did with her. before, not to be too present or stifling under the pretext that she was ill.
As for finding the right words... After a while I understood that the right thing to do was not to search for the right words at all costs but to listen.
How was your life in the medical profession? Did you find the answers you were looking for, did you manage to understand everything?
Matthieu: All the medical staff who took care of Fleur-Anne were wonderful. They were at our disposal whenever we had a question. Being young and with a scientific background, I perhaps asked more technical questions about the disease than average in order to better understand the issues. In addition, the vast majority of staff had formed a special relationship with Fleur-Anne and I think they appreciated her very much with her joy of life and her smile always on her lips.
Karine: As I am not part of the family I had no contact with the medical profession and it was quite hard. Fortunately, a friend put me in touch with his cancer specialist father who I called when I had questions. It allowed me to talk concretely about the disease with someone who was not directly affected. It helped me enormously.
Was this same medical body there for you too, to support you, answer all your questions?
Matthieu: Yes, they were really great!
Did you accompany Fleur-Anne to:
- his doctors’ appointments?
- his chemos?
- others ?
Matthieu: Yes I have had quite a few medical appointments, not all but a lot. For his chemos I wasn't fully present each time but I made sure to spend a little time at that time.
Karine: For doctor appointments, no. I only went to one of his chemos once and I regretted not having skipped work more to do it! Otherwise I accompanied her the first time she went to the hairdresser after starting her treatment. She wanted to cut her hair so it wouldn't fall out as much, just in case. Symbolically, it was very significant: it was the start of his fight, it became concrete.
What was your first feeling when you first met the treatments (chemotherapy/hospital)?
Matthieu: I just wanted to transmit as much strength as possible to Fleur-Anne and then to the treatments so that they were as effective as possible.
Karine: First of all, I want to protect her. Then when I took a step back I found that even in the midst of it all, she seemed strong.
Did you get information on the internet?
IF YES: What would be the useful (internet) links that helped you to give you strength, and those to recommend to relatives of K fighters?
Matthieu: Yes, I found out quite a bit, being curious by nature. You should favor the sites of recognized cancer league, e-cancer, etc. organizations. For more technical questions, it is better to contact hospital staff directly.
Karine: I avoided it as much as possible.
What were your good plans to take your mind off things, get some fresh air, and recharge your batteries?
What did you tell yourself to go the distance / what did you do?
Matthieu: I did a lot of sport to take my mind off things. As soon as I left the hospital, I would go play tennis or football with friends. During sport my head freed up a little and I thought a little less about the illness.
To go the distance, I took advantage of any good news from the exams. And I said to myself “Come on, things are progressing, we’re going in the right direction”.
Karine: Even now, I spend hours walking while listening to music. It breathes, it occupies and when we walk we can cry quietly, people don't care (or at worst we never see them again!). And play the piano by tapping it very hard, but you have to have one on hand…
In the last months, to really be there for her without having my head polluted by negative questions, I was able to no longer think about the evolution of her illness. I told myself that whatever would happen would happen.
Were you able to have an “ almost” normal life, seeing your friends/relatives?
Matthieu: Having many ties to Paris and my friends all being aware of Fleur-Anne's illness, yes I saw them regularly. They made themselves available when I was.
Karine: Yes and fortunately they were there.
In your daily life, were you able to escape from the “ illness” to move forward and be productive ?
Matthieu: It was complicated. In fact, I was moving along with the news. If I received a text that said "Everything is fine" then I had 1 or 2 hours of respite where I focused on my work, until the next text. Same at the end of my visits to the hospital, when I saw her in good shape, I had a few hours to move forward on my own.
Karine: It depended on the phases of the disease. Right after the announcement, I spent my days waiting for news, I felt like she could disappear at any moment and I wouldn't be there to hold her. Then, for several months she regained her strength, started working a little again, going out… and to her friends she only told us the positive things so her cancer became a very bad time to go through which would soon be behind us. When she had long periods of hospitalization again, it was hard to sort things out. Besides, that’s when I started to change my daily life (work, among other things).
Were you able to talk freely about it to your loved ones? Did you feel supported/supported/understood?
Matthieu: Yes, there was no problem with my loved ones. It was rather me who slowed down to talk about it because I did not want our story to alter the discussions or the lives of those close to me more than necessary. I didn't want to see them saddened by our story. They had to continue to move forward and live without being disturbed by this. It made me and still makes me terribly sad to see someone close to me sad “because of me”.
Karine: Yes very freely, fortunately no one has ever criticized me for anything. I felt guilty asking for attention when I wasn't the sick one, but in fact it was essential to keep up with him. My family and friends have been perfect supports, some have had gestures, attentions or reactions that I would never have imagined. Anyway, everyone does what they can...
What advice would you give to other loved ones to arm themselves with courage?
Matthieu: It's quite recent so it's difficult to have perspective to give advice. The only thing I can say is that you have to take advantage of every moment of happiness spent with the sick person, however short it may be. We must do everything so that the sick person has moments of happiness, every attention counts.
Karine: Try to take each day as it comes, not project the day's results too much into the future, to avoid the roller coaster. And do not feel guilty about continuing to lead your life because this is precisely what gives strength and reasons to fight to those who are sick.
What has this ordeal changed in your life (your vision of the world, of those around you, any disappointments? Any great discoveries despite everything?)
Matthieu: This ordeal changed everything in my life since it took away the person with whom I was supposed to spend my life. Today, I just know that I am wonderfully surrounded by my family and friends and their behavior has been exceptional so I try as much as possible to take advantage of them and spend time with them.
Karine: We grew up side by side for 17 years, at ages when our whole life seemed ahead of us. And she did not have the “right” to continue. So at first I believed that I had a duty to make the most of everything “for her” and paradoxically it was very paralyzing. But today it makes me more positive about life: I'm happy to be getting older because one more year means a year lived.
I didn't have any disappointments, on the contrary, I was marked by the way in which certain friends were there for me or thought of her even though they didn't know her. It makes relationships more authentic.
And then I changed career path and it was linked to the fact that I became interested in her cancer to better understand what she was going through.
After such an experience / life test we perfectly understand the reason why you want to continue to bring this wonderful project to life, tell us more about Ma Bulle:
Ma Bulle is a surprise bag filled with small gifts intended to change the minds of chemotherapy patients and give them a little well-being.
There you will find sweets (chocolate, candies, dried fruits, etc.), crossword puzzles, magazines... but also products and accessories to improve everyday life and perhaps alleviate the side effects of treatments: creams, beauty products, scarves, etc.
The “Bubbles” are distributed free of charge to patients during their first course of chemotherapy by the staff of one of the hospital’s voluntary associations.
In which hospitals do you distribute Ma Bulle?
We continue to distribute around 20 Bubbles per month, for the moment, at Pitié-Salpêtrière, where Fleur-Anne was followed. And since January, we have sent 10 Bulles every month to the Pontarlier hospital (Doubs), where they are collected and distributed by the association Un bracelet contre le cancer.
What are your ideas for the future?
We have quite a few projects: distribute more varied products, increase the number of Bubbles every month, find other avenues to easily distribute to other hospitals... And implement a project that Fleur-Anne initiated: Bubbles for children.
Links to follow you (site / social networks):
For now we are on Facebook!
Twitter: @MaBulle_Cancer
Instagram: @mabulle_mabulle
We have a common pot online here
And soon on www. ma-bulle.org
To contact us: contact@ma-bulle.org
Free field (what would you like to add that is not in my questions):
We all work on a voluntary basis for Ma Bulle and we always need the generosity of companies who could offer us products to distribute in the Bulles. All contacts interest us in this sense and word of mouth is essential to successfully grow our network.
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Thank you for this beautiful tribute, if you would like to help Ma Bulle continue to spread its surprise bubbles of sweetness , click here!
If, like Karine and Mathieu, you would like to testify, go here , send me your questionnaire and 1 photo of yourself so that I can draw you ;) to: interview@mister-k-fighting-kit.com
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 ;)
Lots of beautiful positive thoughts to everyone!!
@ very quickly
Never Give Up
Charlotte