ITW n°31: Magali - k fighter.
Magali is 33 years old, currently undergoing treatment for a malignant insulinoma, and creator of the superb Blog: LES BELLES HEURES
Hello Magali,
Let's get started:
Who are you ?
First name: Magali
Age: 33 years old
Profession: Lawyer
Where do you live: Paris, 11th
Why do you agree to share your story today?
To raise awareness of this disease which is extremely rare.
To help sick people feel less alone. Also to remind you that illness doesn't just happen to others. I could be your daughter, your sister, your girlfriend, your wife...In short, the girl next door.
Finally, I also testify for my child, so that she knows what a mother I was and that she is proud of me. To leave him a trace of my time here on earth.
What are your qualities (in a few words)?
Sensitive, attentive, diplomatic, passionate, dreamer, pugnacious.
What are your passions (in a few words)?
I love everything related to art, more specifically drawing. I do a lot of crafts - especially crochet, embroidery, sewing. My dream would be to retrain and work in the fashion industry and more specifically embroidery for haute couture. In the meantime, I would like to open my little online store. I can't help but have lots of projects. The fight against disease also involves this, right?
Can you summarize your (K fighter) story for us?
Can you tell us:
When was it discovered? How old were you ?
It was discovered during the summer of 2013. I was 30 and a half then :) finally, I was turning thirty-one. Two months after my civil wedding, one month before my religious wedding which we were forced to cancel. I never imagined I would be the cause of the cancellation of our wedding, in fact. Surprisingly, I had considered this possibility but no longer because of the great age of certain relatives. Like what...
Under what circumstances was it discovered?
For some time now, I had been having hypoglycemia attacks. At first only in the morning, then during the day, and finally, worst of all, at night. I woke up and felt very, very sick, feeling like I was leaving. At the same time, I was really tired. I literally couldn't move forward. I, who tended to walk at a brisk pace, was no longer able to run after the RER, I took very small steps just to go to work. But that didn't ring a bell. I consulted the doctor for something else, a stomach ache which was perhaps linked to the illness. At that time, I spoke to the doctor about my "little problem", and following blood tests my illness was quickly detected. I was also lucky enough to be referred to good specialists very early on. Fortunately because the nights were becoming unbearable. And as I tolerate hypoglycemia attacks very well, I can go very low (around 0.5) before I realize it and it wakes me up!
I wasn't dejected when my doctor told me the name of this illness that was gnawing at me. On the contrary, I felt the relief of knowing that it wasn't just in my head. I didn't realize it was that bad. I clung to the word benign, even after my very first hospitalization and my liver puncture. Even when the surgeon told me it was malignant, quite abruptly in fact, I didn't really react.
If you have been receiving treatment, how long have you been receiving treatment?
Since July 2013, I have been undergoing treatment. Besides, I celebrated the second anniversary of my treatment this summer. There are birthdays we would happily do without. And it's not over, the fight continues: I don't have a planned end date for treatment, due to the persistence of tumors. The oncologist made it clear to me that I could be treated for life.
What treatment do you have?
chemo:
I had the chance to try different types of cocktails, yum!
First treatment:
Even before the surgical procedure, I started oral chemotherapy at the rate of one tablet per day: this medication is called Affinitor. My body responded well to it, until after eight months, the tumors returned in force, manifesting themselves through tumor fever. I now know what the expression writhe in pain means.
Second treatment:
my oncologist decided to attack my tumors head on with a shock treatment, namely a liver chemoembolization session, then, as I tolerated it very badly, a liver embolization session. All under local anesthesia. I have very, very, very bad memories of it. Besides the loss of my hair, I was under aplasia, I caught a bacteria, I was over-hydrated, therefore with the abdomen of a six-month pregnant woman (hello stretch marks but we are no longer close to that ), I also had some cool visions because of the morphine (huge spiders running on the wall of my room, silhouettes of children. A little more and I was in the Sixth Sense). I thought I wouldn't recover. Just thinking about it sends shivers down my spine.
All this for... an almost zero result, with two months later new tumors, fever and a return to square one (the hospital for those who did not follow).
Third treatment:
I moved on to more conventional chemo sessions with the installation of a port-a-cath. Each chemo session lasts 48 hours and returns every fourteen days. With :
Folfiri 1 (5FU and irinotecan): a lot of fatigue, pain and nausea for a mediocre result. Hence a change of product after 9 sessions.
Folfox (5FU and oxaliplatin): effective but I had to stop this treatment after around ten sessions, due to side effects that could be irreversible, namely paresthesia (damage to the nerves at the ends of the limbs, which which is problematic when you are manual like me and even when you are not). I wasn't allowed to eat ice cream, I made up for it this summer.
Today, I have the following mix:
Avastin + 5FU (5 fluorouracil): I tolerate my treatment well, hooray! Even if the tumors are still very present, at least my disease is stabilized. I am able to move around a little and even recently take care of my child alone, from school leaving to my husband's return. It's destabilizing to have a child and not fully play your role as a mother, so I take advantage of it and I admit that I spoil her a bit a lot. Well, on the other hand, to lead a normal life and go to work it wasn't that yet. I am often tired.
Where I'm not lucky is that my oncologist made it clear to me that I had it for a while. I have no visibility in the short term or even in the medium or even long term to tell the truth....
radiotherapy:
I didn't have any. Phew, it’s always a win!
operation :
Yes, an intervention, at the very beginning of my treatment, for which I stayed two months in the hospital. It was a very invasive surgery, since they opened me in two vertically, like a rabbit (for the image) in order to remove the tail of the pancreas, the spleen and clean out the affected lymph nodes in this zone. Well, that's okay, psychologically speaking I had a pretty good experience with it, I didn't care much more about this piece of pancreas, nor even my spleen! Physically, it's a different story: I clearly understood the usefulness of this organ during my first major digestive problems. And then without the spleen, I am on antibiotics for life and obliged to update my vaccinations.
Then I was hospitalized for two additional months for the chemoembolization of the liver mentioned above, which is done under local anesthesia: the anesthesiologist inserts a tube into the femoral artery at the level of the groin, and slides it as close as possible of the liver before injecting the products...
As my liver is neither operable nor replaceable, no other intervention is planned, not even a transplant. Fortunately, because I would not experience such a heavy new intervention with the same serenity.
I tested some beds and services! I could almost write a guide to the different departments of this hospital. I even got into the habit of testing the mattress as soon as I entered my room. Because having back pain from a deformed mattress is difficult to bear when you spend your days lying down.
other:
At the same time, I take my little tablets religiously, morning, noon, evening and at bedtime. And I make sure I always have my morphine on hand. I have them in all my handbags and coat pockets. We never know.
What tips directly related to K do you want to share?
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 haven't tested the headset because I was told it hurts and isn't necessarily very effective. In any case, the chemoembolization which was not supposed to make my hair fall out caused it to fall out and I was not prepared for it.
The following chemo treatments didn't make my hair fall out, but I kept it short, just in case.
The day before my chemo, I prepare my bag for the hospital.
On the days I have chemo, I stay home and sleep a lot. I rest while my mother takes care of everyday life. (she comes especially for the occasion)
2/ hospital: nurse / doc / caregiver contact
Overall, the members of the medical profession were charming to me. I have a good relationship with the doctors who take care of me. They are very human. Being smiling and friendly with the staff who care for you is important. It is better to put them in your pocket, if only because it is more pleasant that way, and also to obtain small privileges: a leave of absence, a blood sample not too early in the morning...to discuss when we are bored...have a hot tea...
I remember a stretcher bearer who was very attentive to me when I was really not well, and who checked on me when we met at the hospital.
A caregiver also told me that she was touched by my case because I am young (compared to the average age of oncology patients).
3/ alternative medicine, if you have done it
I feel the need to be active, to get involved in this fight against the disease and not only to follow the prescriptions of oncologists, even if I have total confidence in them.
I take my treatments of course, but I also take care of myself, benefiting from social-aesthetic care during my hospitalizations.
And then you also have to think about all the other important care, like going to the dentist, the gynecologist... There's no need to add other health problems.
Otherwise, I performed several acupuncture sessions to treat and prevent chemo-related pain. I can't tell if it was really effective. We will say yes.
I also consulted a naturopath who helped and advised me to change my eating habits and other behaviors in general (among other things, my beauty routine). Through him, I discovered many fascinating subjects which, in my opinion, fit into slow life (cardiac coherence, the use of vegetable oils, sprouted seeds, etc.), I even did a little relaxation with her. It almost made me want to retrain in this field that I didn't know about, which is how enriching I found our discussions.
We must also not neglect the role of the pain doctors, who prescribed painkillers to me (morphine drugs in my case), but also who made me have sophrology sessions, who also made me discover a device called a TENS which creates a decoy for the brain.
I also regularly consult a physiotherapist to have my back massaged, and occasionally an osteopath.
As soon as a doctor can come to your home, I no longer hesitate to request one. In addition, I am cared for by nurses via a home hospitalization service. They visit me several times a week, take me medications, do pre-chemo checkups...
In short, I'm not passive, I try lots of little things to take care of myself.
What do you do to clear your mind/clear your head (before chemo, surgery & co)?
Nothing more than usual, I rest daily and I organize myself so that everything goes as well as possible, if I'm in good shape of course. I like knowing that the shopping is done, the house is pretty much taken care of, because I have a little girl and I want the best for her, like all mothers. I don't want to disrupt his daily life too much, which is already very disrupted. I have still accomplished things that are, in my eyes, very important, for my daughter: I filled out her birth book, I made her a cuddly toy, cushions, and at the moment I have started making of a Bai Jia Bei blanket. This way, if something happens to me, I know that she will keep objects made by me for her.
And to take my mind off things, I crochet, knit, I watch unspeakable shows on TV :) (I will only confess under torture. A clue: they are young, from the world of night and Ch'Nord or Marseille, go to heavenly places, don't know how to speak, or really dress, in "shoggun tonight" mode! - that's it, I've lost all my credibility). I am also lucky to be surrounded and not have to manage anything during my chemo. My mother is always at my side at this time and helps me enormously, particularly by taking care of my child in my place. Without her, I don't know how we could have done everything, because my husband works. My mother-in-law, who still works, also comes to support us and give us a helping hand if needed.
What practical tips can you advise us?
1/ beauty: magic creams / scars & co
I now try to favor natural and basic beauty products. Last year I discovered Slow cosmetics and the use of vegetable oils.
For my scar: I used Tonic oil from Clarins, it was very effective on my scar which I massaged to fade it. Even the physiotherapist was amazed.
I use vegetable oils for the body and face.
I make green clay plasters on my liver.
I spray floral water on my face.
I put green clay plasters on my liver.
I try to relax by doing breathing exercises. I'm resting.
2/ look, your favorite look chemo, hospital, every day to feel good
I prefer comfortable clothes. I bought lots of cotton pajamas/lounge pants from Petit Bateau, with an elastic waist. And even slippers! This way, I'm dressed comfortably on chemo days in the hospital and when I'm hanging out at home with my infuser.
I wear little cotton tops, I always have a stole on my shoulders.
My husband gave me a kimono jacket and some soft shawl vests that I love to wrap myself in. I add a large scarf or stole on top. There's always one hanging around my living room. In fact, my daughter steals them from me to dress up in or even to sleep in.
3/ daily (sport, food & co)
No sport for me because I was undernourished for a year and a half and I'm not yet strong enough to do sport. Today I'm walking - mainly to get around - but I'd really like to go back to the pool. I love swimming, I'm a real fish.
I try to eat a balanced diet and cook a little. I avoid alcohol and foods that are too fatty and difficult to digest.
On an organizational level, I bought myself a nice diary in which I scrupulously note all my appointments/memos, in order to anticipate the next treatments and be able to plan more pleasant things, like outings, between two treatments. I also have a folder in which I store my medical documents. And I collect all my medications in a handy box so I don't forget to refill prescriptions on time.
Are you concerned about the views of others, were you afraid that their views would change? what do you do to counter it?
At first, I was afraid of the looks of strangers, due to wearing a nasogastric tube which blocked my face. And then I took my courage in both hands, I crossed the threshold of the door without stopping at the looks of people. It was that or stay locked in my house!
Same when I lost my hair. The first days, I didn't go out without my scarf. I quickly decided to go out bareheaded without worrying about what people would say. I even went out in Birkenstocks from home! :)
Perhaps the fact that I live in a cosmopolitan district of Paris played a part. Here, we meet people of all origins, over-the-top or very simply dressed. I blended into the landscape.
I bought myself lots of pretty drop earrings to highlight my face.
I also ditched my two-piece swimsuits in favor of a one-piece, to hide my abdominal scar (and I also need to protect it from the sun). That’s good, one-piece swimsuits are back in fashion!
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
A few people close to me have actually hurt me, but I put things into perspective. This is not malice, more clumsiness. So I decided not to take offense anymore and to laugh about it instead. (Well, I still let some time pass with some people).
I am going to avoid offending my friends here by quoting their cult phrases. I think (and I really hope) that some people realized that they had hurt me because I became much more distant from them than I was before. But for me, the worst remains the radio silence of some. Like I was contagious. Or as if they had already buried me. I know, we all have busy schedules, but a simple little “I’m thinking of you” isn’t too much to ask for. I understand that some people are afraid of the disease or that they don't realize what it is. I don't wish them to get sick.
Let's talk about the other people I met:
My bank advisor, who from studying my bank accounts knows that I am on long-term sick leave (I have been receiving social security benefits regularly for a long time):
“Why did you cut your hair? Long hair looked better on you.”
“What illness do you have?”
- (I don't answer)
“- It’s not going to last anyway, right?”
- (Um...are you trying to give me a loan, now?)
I didn't know if she was preaching the false in order to know the truth. But I honestly think she's just stupid and doesn't imagine that someone our age could be sick.
Taxi drivers on the way to the hospital, who try to be friendly and who, without knowing what condition I have, try to reassure me, without me asking them anything:
"- Don't worry, today we are cured of everything. You will be cured too. It is only liver cancer that is difficult to treat."
- Oh. All right. Thank you very much. My liver and I thank you for your encouragement."
It's not because I'm a woman that I necessarily have breast cancer, nor because I'm quite young that I have leukemia. At the hospital, people (the stretcher bearers, the secretaries) regularly ask me if I go to hematology even though I am well followed in oncology. It's funny what people's preconceived ideas are.
How did your loved ones support you?
And what advice could you give to loved ones who accompany a K fighter?
Everyone supported me in their own way. By thinking of me, sending me messages, cards, praying for me, offering their services to me or visiting me.
My mother was extremely present. She came to see me every day, she slept next to me in a makeshift bed when I felt the need, she played the role of nurse, caregiver, while taking care of of my daughter during the day.
My husband came to see me every day at the hospital. He took my daughter to me on weekends. He worries about me regularly.
My family and loved ones are there and available if I need help, particularly to help me take care of my child.
I have many friends who often come to visit me in the hospital or at my home. I received a lot of wonderful attention...The positive point is that the illness allowed me to get closer to my family, to deepen certain friendships and to discover beautiful people.
Overall I'm lucky, my illness has brought me closer to people than it has distanced me from them.
I would advise loved ones to be present, even if only through postcards and text messages. A long call can be tiring. You have to listen to the patient, see what pleases them, and possibly not hesitate to ask them. I find it a shame people who move away under the (false?) pretext of not wanting to disturb. Well, on the other hand, it's also good to avoid giving free advice or making unnecessary comparisons with other sick people ("my aunt Jeanine had the same kind of illness and she did such and such thing, but hey she's dead..."). Even if it is well intentioned, it is boring. For example, I was kindly advised to fast before my chemos, except that in my case, it's impossible! I'm more likely to accept advice from people who have gone through similar ordeals themselves than from healthy people (You should exercise. Hahaha). In short, be present and a little empathetic. Not only talking about illness, but also about everything and nothing, as before.
What would be useful (internet) links that help you during K?
Blogs in general, especially those that talk about anything except cancer! And more specifically DIY blogs, from creative moms, because they allow me to project myself into what I would like to accomplish when I am in good shape.
My disease is very rare, so there is little information on the subject. It would rather be up to me to create my blog to communicate about this tumor! I still learned that rats and ferrets also suffered from it :)
Otherwise, I still follow Nicola's marine blog (kiss of a hurricane) and Lili's (the war of the nipples) and now yours (it's very very nice by the way, I really like the tone and the subjects discussed) ! I was also very touched to learn of the death of a young woman who had a similar life to mine. I was coming back from a painful chemo session. To take my mind off things, I went to browse his blog and learning of his death was a big shock. She leaves a little boy behind.
What has the K changed in your life...?
My K came at a time when I felt overwhelmed and had a lot of questions about my professional future. I was thinking too much, I didn't know what direction to take in my life.
I needed calm. I feel like my body has sent me a warning signal.
I now aspire to enjoy life, to no longer endure and to make choices not out of reason but out of desire. I want to change careers. I think this will be necessary because I'm really not sure I'll be able to return to my previous job. From now on, I try to worry less. And then I'm sick, of course, but the news shows me that I'm very lucky to live in France and to be able to benefit from appropriate care. When I see certain friends complaining or feeling overwhelmed by a trifle, even though they have everything to be happy, I want to shake them. Truly, some people don't realize how lucky they are and only see the negative side of life.
If I succeed in healing, I plan to change many things in my life. This has actually started.
Did this ordeal push you to change your life? (with new projects, changes in your life?)
I'm trying to adopt a healthier lifestyle, in particular by carefully choosing my diet even if I still fall for chemical candies :)
I aspire to a slower life, far from ambient consumerism. I aspire to take back control of my life.
I also want to change careers, no longer have the crazy pace of before. I like beautiful things, handmade things, craftsmanship. We'll see !
Free field ;)
tell us what you want (which may not have been in my questions):
Being in good health seems to be a given, a given. Make no mistake, illness can strike you just around the corner. So before it's too late, enjoy life, take advantage of it to realize your projects and dreams. Don't be too materialistic. Talk to your loved ones, reconcile with them, tell them you love them before it's too late.
Enjoy life and take care of yourself and your loved ones. And if you are sick, fight, you are not alone!
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Thank you again for your beautiful testimony Magali
full of strength and beautiful waves
Never give up!
Charlotte
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