ITW n°75: Agnès - K bone marrow fighter.
today the beautiful, elegant and tenacious Agnès, 46 years old, mother of 4 boys (her passion), in "total" remission of a K of the bone marrow for more than 1 year, gives us her fight with a lot of sincerity, she testifies to raise awareness about bone marrow donation (to register in the “life watchers” donor register, click here ), but also to say thank you to all those who supported her, and a huge thank you to the life.
(testimony sent on March 19, 2016 *)
Very beautiful discovery, an ode to life.
Let's get started:
Who are you ?
First name: Agnès
Age: 46 years old
Profession: lawyer by training, I work in a bank
Where do you live: In the Lyon region
Why do you agree to share your story today?
I have several motivations:
- I wish to testify to inform and raise awareness; before my diagnosis I did not feel concerned about cancer (except lung cancer because I was a smoker J) and I had never heard of bone marrow cancer, even less of bone marrow donation
- I would like to testify to “say thank you”: thank you to the medical teams who made this miracle of transplantation possible, thank you to the donors (marrow, blood, platelets, plasma, etc.), thank you to my loved ones, thank you to the strangers in the network of life watchers (people registered on the bone marrow donor register see the Facebook page "the watchers of life" here !) who constantly supported me before, during and after the transplant, in short, thank you to the whole Earth because I feel indebted and so lucky!
- Our testimonies and our discussions allow us to give meaning to these painful but enriching experiences.
What are your qualities (in a few words)?
I am tenacious, I cultivate hope in a proactive way and I say things. This experience increased my ability to communicate because I gained greater self-confidence.
What are your passions (in a few words)?
My sons of course (there are 4 of them aged 9 to 21)! And then the human relationships, the exchanges which allow us to let ourselves be touched, carried and sometimes helped when necessary.
What K (what cancer - grade if you wish / stage ditto):
Mielodysplastic syndrome (to put it simply, a kind of cancer of the bone marrow; cessation of the production of white and red blood cells as well as platelets + appearance of cancer cells called blasts). My cancer had a “poor prognosis” meaning that my life expectancy at the time of the prognosis was estimated at around 5 months. A bone marrow transplant was the only option to save me.
When was it discovered? How old were you ?
in February 2014, I was 44 years old
Under what circumstances was it discovered?
fortuitously; I had pain and had consulted a rheumatologist who had me do a blood test; the day after the lab results, I was admitted to the hospital. Bone marrow aspiration and bone sampling made it possible to make the diagnosis very quickly.
If you are currently undergoing treatment, or in remission (for how long?)
I have been in total remission (no more cancer cells in the marrow) for a year!
Can you summarize your (K fighter) story for us ?
I threw myself headlong into what I felt was the battle of my life. I informed everyone around me, mobilized all the forces to support me, asked for help, without false modesty. I was vulnerable like never before and yet charged with incredible energy. I very quickly took up pen to keep a diary and it helped me a lot; I held it from the diagnosis in February until the following September, a few months after the transplant which was carried out in May.
The hardest part was the waiting time: first of all the wait to find out my brother's possible compatibility (a chance in 4 that we are compatible and the mutual disappointment of not being compatible…) then the waiting to find a donor on the international file (only 30% chance of finding a compatible donor). I knew in April that I had the privilege of having a donor, and so I was transplanted at the end of May, after a short but very aggressive chemo to “kill” the cancer cells and eliminate my marrow to make room. for that of my donor.
What treatment did you have?
chemo: if you have had it: 2 weeks of chemo injected continuously before the transplant
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: I knew precisely the pre-transplant schedule
Entering the sterile room on May 5, 2014, every day I drew lines on the whiteboard in the room like prisoners or shipwrecked people ;)
Every day that passed was a victory and a step forward and what was done was no longer to be done…
2/ hospital: (e.g. contact with nurses / doc / caregivers):
in a sterile room everything is unreal: you can't bring anything in from the outside, the sterilized clothes are vacuum-packed and stored in a chest of drawers which you are not allowed to touch; the food is sterile, we brush our teeth with mineral water, we take sterile showers...even the power outlets are...sterile. Anyone entering the room goes through a decontamination airlock and is dressed as a “cosmonaut”. It is then difficult to identify who is who; you have to be cunning and spot details: the voice, the glasses, the earrings… The flow goes better with certain people; one nurse in particular had the power to soothe me because curiously she had the stature but also the voice of a close friend J
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
following the transplant and the treatments I benefited from rehabilitation in a rehabilitation center (the illness and the treatments cause a lot of joint and muscle pain) and I benefited from Chinese medicine sessions to rebalance energies. Since summer 2015, I have also been practicing yoga and it helps me deal with the emotional side.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
before hospitalization I took full advantage of being outdoors and basked in the sun like a cat because I had been informed that following the transplant, sunbathing would henceforth be prohibited and the sun would become dangerous... and then I wrote my diary. As my immune defenses were almost zero, I couldn't go out much in crowded places and the rare times I did I was forced to wear a mask.
What practical “well-being/beauty” tips can you advise us?
1/ daily (e.g. sport, food & co, meditation, reading, etc.)
Yoga then, and then Pilates since last September to gradually regain tone. As for food, everything that is permitted (at the beginning a very restricted list), often and in small quantities; the treatments alter the taste for several months.
2/ hair problem (eg: did you wear a wig, scarves, hats)
I bought a wig to please my partner, but I didn't feel comfortable, like I was in disguise. I think I wore it 3 or 4 times at most and I preferred the caps purchased on specialized sites to the scarves which held less well.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
I remember my first outing with the mask, I felt like I was the reincarnation of Mr. Jackson as people looked at me with curiosity. But very quickly I got used to it. The hair loss was a real blow. Regrowth is slow and I sometimes have trouble getting used to this new look; I found a lot of comfort from this point of view in blogs and publications like Mister K, Rose magazine, the Marine de Nicolas page, Ciao Gunther…
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
A housekeeper who came to the house after my return from a transplant: “Don't worry, I'm used to working with people who are at the end of their lives!”
Another person: “Does chemo make you sick?”
How did your loved ones support you?
I didn't have to get sick because I no longer had any immune defenses (even today I have to be careful), so it's been 2 years that everyone around me has been paying attention and...it works, the children are not sick J
And what advice could you give to loved ones who accompany a K fighter?
Simply being there and stroking the bald head so that the hair grows back like my youngest did with tenderness for months!
Do you find out about K on the internet?
Yes, especially at the beginning to try to understand this disease that I had never heard of.
If so, does it make you feel good?
It's good to understand, and hard to read the statistics (30% chance of finding a donor, then a one in 5 chance of being alive 5 years after the transplant...); but also good to exchange on the network of life monitors to get advice, testimonies and support from donors, recipients and their loved ones!
If so, what would be the useful (internet) links that helped you during K?
those mentioned above and also Feminity & JY by La Ptits Julie
What has the K changed in your life...?
(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)
Every day, every person is a gift.
I am happy to have had this opportunity to take stock of my life and this emergency revealed to me a vitality that I did not suspect. Furthermore, receiving the life of an anonymous person, without any link of interest, is an incredible experience. Today, in the medical sense, I am a “chimera”, that is to say, an improbable and impossible creation (I am a woman, but my marrow donated by a young donor is male). It is both poetic and bears immense hope in humanity and fraternity.
Free field ;)
tell us what you want (which might not be in my questions):
I simply wish to say thank you and I wish to be present and available as much as possible for those who take this path of fighting for their lives, with great dignity, young and old who have crossed my path near or far, Noah , Cassandra, Jimmy, Sabrina…
Thank you Agnès, for your valuable testimony.
*Many of you send me your testimonies, thank you for your precious trust, for this same reason, the broadcasts of your interviews will sometimes be broadcast in several months, but know that I keep and transmit absolutely ALL the testimonies that are sent to me , Thank you for understanding.
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 ;)
NEVER GIVE UP!!