ITW n°58: Aurore - K fighter.
today the amazing Aurore, 31 years old, gives us her breathtaking testimony, that of a fighter who fought during her pregnancy against a Breast K (carrier of the BRCA1 gene), wow... a real warrior. .. They were “two fighting” as she says with great elegance and resilience. Today Aurore is in remission, undergoing a clinical trial and her 9 month old son is doing well :)
What an incredible lesson in life and strength!
Let's get started:
Who are you ?
First name: Aurora
Age: 31 years old
Profession: math teacher
Where do you live: Cusset, in Allier
Why do you agree to share your story today?
Because I have always said to myself that it is an experience that must be useful to others. Because I don't want to forget either (it's weird maybe).
What are your qualities (in a few words)?
Optimistic, Smiling and Perfectionist. Complaining is also a quality!
What are your passions (in a few words)?
My son (7 months), my close family, my animals, music, my friends, cooking, manual activities in general, climbing (if I can one day get back into it)!
What K (what cancer - grade if you wish / stage ditto):
Triple negative infiltrative ductal cancer, grade 3
When was it discovered? How old were you ?
He was diagnosed on February 4, 2015, I was 30 years old.
Under what circumstances was it discovered?
I lie down, I touch my breasts (normal, with my pregnancy they were tight), I feel a lump. The next day, appointment with my MT then with the radiologist. No one believes it could be cancer, not at my age, not pregnant! I decide to do a biopsy 15 days later, and the result is… bad!
If you are currently undergoing treatment, or in remission (for how long?)
I had chemotherapy during my pregnancy (phew it was possible because I was entering my 4th month and the placenta protected the baby). Suddenly, there were two of us fighting! It's stressful but it also gave me extra will to move forward! We really hurt that damn squatter! I gave birth in June and we quickly followed up with radiotherapy during the summer. Then I had a double mastectomy with axillary dissection in October. So I'm currently in remission even if I remain on my guard, it's still too early to give up. And then I participate in a Clinical trial.
Can you summarize your (K fighter) story for us ?
I carry a BRCA1 genetic mutation already identified in my paternal family for around ten years. I had not wanted to take the test earlier because they had nothing to offer us more than a simple follow-up.
What treatment did you have?
3 courses of FEC100 (including the famous product that makes you pee orange!!) then 9 courses of weekly Taxol. We were supposed to do between 9 and 12 but my son decided that it was enough: my water broke one evening of chemo…
I had 25 radiotherapy sessions.
I had surgery in October. Double mastectomy + axillary dissection, 5 drains. I stayed in the hospital for 7 days but in fact I could have been released a little earlier... Let's say that I didn't want to leave too quickly, I preferred to be cocooned a little before.
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):
No special trick for chemotherapy. I didn't want to use the helmet or the cooling gloves because me and the cold are... too much! The treatments went rather well. I wasn't particularly ill but very tired. I think my baby was helping me. For Taxol, the premedications made me sleep so the session went by much faster!
How did you live the day before, the day itself, the days after chemo?
and what were your tips?
During the injections, we played scrabble with my mother (I think she let me win ;D) And I rested all day following the chemo. The rest of the time, I tried to maintain activities but while listening to my body and its needs.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
Everything went well. The nurses were great and the surgeon came to see me every day until I was discharged. I was able to be accompanied to my room at all times. I had to wait a few days to be able to see my son. I would have liked to know more about Lymphedema before the operation, because afterwards I didn't feel like it at all! And then what a laugh with the physiotherapist! It looked like he was going to fall asleep while talking to me... I think the Thursday evening had been a good one! Oh yes I forgot, remember to bring a nightgown with buttons at the front and wide sleeves because at the beginning the movements are complicated and it's always better than the hospital pajamas where your butt is exposed ! I'm going back soon to do the "finishing", I can't wait!
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I went to see a magnetizer before each chemo session and during radiotherapy. It's very effective because I only started to feel the burns after around twenty sessions! I also went to the acupuncturist before my operation (and went back after). He eased my mind and gave homeopathy to prepare for healing and protect against bleeding during the operation. Also, once a week, my mother-in-law (former beautician) came to massage me :D!
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I lived ! I went to music, I saw friends, family! I was walking my dog.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
I admit that during the treatments I didn't dare to wear too much makeup (or the minimum) for fear of weakening my remaining eyelashes and eyebrows or damaging my skin. Throughout the duration of the treatments I showered with Lipikar (La Roche Posay), a superfatted soap which helped to continuously protect my skin. I also used nail polish to protect my nails during Taxol. During Radiotherapy, I used several creams: first Effidia, then Flamazine. I also used HydroTac gel dressings, it's really great! After the operation, I wore a Zbra bra (which can be bought in pharmacies) and then I continued to cream myself with Bioderma Atoderm PP and shower with Cicaplast B5 La Roche Posay.
2/ daily (e.g. sport, food & co, meditation, reading, etc.)
I stopped my cleaning and other things too *beep! It must be said that I could count on a golden family! And I continued the activities that made me happy: walking with my dog, music. In terms of food, I admit that I am not a model: during my pregnancy I did a radish – nutella diet (not together obviously!)
3/ hair problem (eg: did you wear a wig, scarves, hats)
I lost my hair about 15 days after the first FEC100. Very quickly my partner helped me by shaving everything! I had bought a wig that suited me very well (when I went to visit my students, one of them said to me: “Madam, have you done highlights? It suits you so well! ^ ^") I mainly wore it to go out to places where I didn't necessarily want to be questioned. But most often I wore cotton hats, I had lots of colors, or scarves. I also walked around bareheaded whenever possible. During the Taxol my hair slowly started to grow back, so as soon as I could, I only wore a hat to go out! I laughed to imagine what people would think of this big donkey who was pregnant up to her eyes and who was completely out of shape, I told myself that all I was missing was a safety pin as an earring. …
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
Yes of course ! I tried to be myself and most of my friends understood that. Some (friends or family) didn't always know how to behave, in hindsight I understand.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“it’s well treatable now – and I’m quoting all those who have been affected and who I know” – “you’re young, it’s going to be easier, and you’re strong!” » - “Were there any in your mother’s family? » (NO! firstly, cancers of genetic origin are far from being the majority – only around 5% – contrary to what everyone seems to think, and secondly, they are chromosomes 13 and 17 so nothing to do with them with the sexual character! At home, it was my father who passed it on to me…) – “your baby will help you” (re NO, on the contrary, what additional stress!) – “hair grows back” - “eating this or that is carcinogenic bla bla bla” (Damn, it’s complicated enough to be sick, so thank you for not making us feel any more guilty!! And what’s more, for me it’s genetic, so nothing to do with it with what I eat or do!) etc etc
How did your loved ones support you?
I had golden relatives and friends, always there! Not to mention my partner… Thanks to him!
And what advice could you give to loved ones who accompany a K fighter?
What irritated me the most was when we avoided the subject. It feels good to feel listened to, that someone is interested in you. But above all in a natural, merciless way! And then continue to tell us about your lives, to act normally with us! Don't blame us either for forgetting your birthday or something else important to you because during this fight, we need to focus on ourselves but that doesn't mean that we are no longer interested in others...
Do you find out about K on the internet?
I quickly learned about the BRCA1 mutation and the consequences. Need to prepare myself but also to prepare my loved ones for what was going to happen to me. And then also to counter preconceived ideas! I only made contact on forums with other traveling companions when I had finished my treatments, on my hospital bed, just after my operation. I couldn't do it before! I think that sometimes you have to be selfish, and in this fight it is essential!
If so, does it make you feel good?
Now I participate in forums, I feel useful, I learn from others too! And then I come back down to earth understanding that I'm not the only one...
If so, what would be the useful (internet) links that helped you during K?
and then various blogs that I like or make me laugh!
Miss Carcinosis (tender thoughts for this new star!)
What has the K changed in your life…?
We often hear “there is a before and an after”, and it’s true! I want to live for myself and my loved ones, to worry less about how others see them, to also take responsibility for my story, to be an actress in it! And I’m going to get a “Carpe Diem” tattoo!
Free field ;)
tell us what you want (which might not be in my questions):
I think it's quite common, but there is this desire to make something of what happens to us. Some write, draw, make humor or film themselves (but I didn't feel capable of it!). As soon as the announcement was made, I contacted a photographer friend. I told him: “You know, I need you! I need projects! And then I'll soon look like you: bald with a big face! So I know that you will understand me and that you can help me.” There are classic photos, original ones, poignant ones too... Maybe one day, when I'm ready, we can do something useful with them!
photo credit @Eric Pouyet
Thank you Aurore for this beautiful testimony :)
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