ITW n°39: Isabelle - K fighter.
Let's get started:
Who are you ?
First name: Isabelle
Age: 39 years old
Where do you live: les sables d’olonne
Why do you agree to share your story today?
Because it helps me a lot to share with other patients, only they can understand... what's more, I like the idea of leaving a writing about my journey, an indelible trace.
What are your qualities (in a few words)?
You would have to ask those around me but I believe that I am a caring person, attentive to others, sometimes a little too much in fact.
What are your passions (in a few words)?
My daughters and my husband of course... What we love is sharing moments with family, a bit mundane but more than ever my life revolves around them.
Otherwise, before the illness we loved hiking and climbing, we live by the sea so I also love these long afternoons at the beach with my friends and the children.
What K (what cancer - grade if you wish / stage ditto):
Triple negative breast cancer grade 3, I am currently being treated
When was it discovered? How old were you ?
39 years old
Under what circumstances was it discovered?
I felt a lump in my breast while taking a shower, ultrasound, mammo, biopsy….
If you are currently undergoing treatment, or in remission (for how long?)
I started my chemo protocol last September 23 and finished it on February 11, 2016 then surgery (tumo gas) then radiation
Can you summarize your (K fighter) story for us ?
I wasn't that worried when I felt this lump, most likely a fibroadenoma and no family history and of course too young to develop cancer.
I spoke about it at work (hospital) to a radiologist who immediately gave me an echo then a mammogram with biopsy (during my working time).. Afterwards I knew that he had guessed the malignancy from the echo but he wanted to preserve me a little longer while waiting for the results.
Four days later, he called my gynecologist to summon me... It was September 11, on my answering machine my gynecologist half-heartedly announced the diagnosis (she used the word DIRT, I will never forget it)... the twin towers collapse on my shoulders. I had just dropped my daughter off at the gym, I don't remember how I managed to get home, I call my husband, my friends, I scream, I I feel nauseous, I'm in terrible pain... I think I'm going to die at this moment. I listen to this message on my answering machine from time to time, I can't delete it as I needed to tell me the story again (and if she was wrong)
Then everything goes very quickly, too quickly: PAC placement, extension assessment… announcements to children, family… I started chemo 21 days after palpation of the tumor.
A chance to have rapid support but also little time to digest the information. I am thinking particularly of this great doc who screened me who today also has cancer, no one is spared. .
What treatment did you have?
chemo: if you have had it: (name of cocktails / number of sessions)
4 Adria Endoxan followed by 12 Taxol (I am on my 6th of Taxol)
radiotherapy: if you have had it: (number of sessions)
Rays Planned after surgery, 35 sessions
operation if you have had one (how long were you hospitalized):
Normally lumpectomy scheduled for March 18 on an outpatient basis
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):
For my part, I have worn the helmet, since the beginning, the slippers and the gloves in addition with the Taxol because I have met other patients with nail problems (streaks, peeling). However, the nurses only recommend the headset with this product..but I prefer to rely on the experiences of others.
For the moment I have no side effects on my nails, no hand foot syndrome (just some tingling from time to time)
The nurses are very pleasant and I feel they are available even if they sometimes run through the corridors. It feels super strange, for me, to go to the other side..We share a certain complicity but I stay in my place (even if sometimes I would like to rinse more quickly or stop the ringing of the syringe pump myself :).
How did you live the day before, the same day, the days after chemo?
and what were your tips?
The first 4 of Adria Endoxan were the most trying
These 2 ½ months were difficult both physically and psychologically.
I needed this time to digest all of this, to integrate my new sick status.
Eat well at a regular time (whatever you want, that is to say not much) drink well in small quantities but often (herbal teas, soups, etc.)
Resting even if sleep is in fact very difficult to find, The days are long but the nights are even longer.
Walk a little and cry a lot...
Quickly I preferred to go alone to my chemos, set up my own routine with my taxi (Thank you Laetitia who really changes my mind)
I go there every Thursday so on Wednesday I established a ritual (facial treatment, nail care, etc.)
2/ hospital: (e.g. contact with nurses / doc / caregivers):
My husband was in the operating room on the day of the PAC installation (he works there) not easy to have his wife on the Operative program..
A friend took me to the operating room, a second put me to sleep, I will never forget his gaze looking into mine, under the op field
At that moment I was very lucky to be cocooned, I needed it and I thank them with all my Heart
No one cried, at least in front of me.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
Sophro with positive visualizations, this helped me a lot because I didn't see the use of this treatment which made me sicker than I was before
I am trying homeopathy at the moment for the menopause syndrome caused by the treatment (brutal and insomnia) but I don't really believe in it, even my onchologist told me that there was nothing to do about it.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I try to do my sophro exercises while waiting for exams or appointments
I still have a lot of trouble thinking about anything else, day and night it accompanies me but it seems that it's normal..(the little mill that turns constantly)
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
I quickly bought everything I needed, ie cream (Lipikar For the body, Dexeryl)
Varnish that I change every week (silicium la roche posay 5 coats (2 protective matte then 2 dark color coats then top coat)
Micellar water, CCrème…I took part in a BELLE ET BIEN workshop where I was able to receive a makeup bag full of nice cosmetics
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
Jeans and cotton t-shirt, want to be comfortable more than ever
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
Difficult to focus on a reading while processing, family life takes up all my energy
I try to walk regularly
4/ hair problem (eg: did you wear a wig, scarves, hats)
When the announcement was made I decided to cut my hair and buy a wig (any d'avray) In hindsight I shouldn't have rushed because I prefer a scarf..I'm keeping the wig for girls' school because the way others look at their mother is still difficult to bear
You need both I think and alternate depending on the occasion but it's really very personal
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
Yes it's still very difficult, I'm currently losing my eyebrows and even if I have the kits, the pencils and everything I'm afraid of the image that I will send back...one more step to cross
I have a harder time losing my eyebrows and eyelashes than my hair, who knows why?
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
No. 1: My Gynecologist / “this one” (speaking of my cancer) is really nasty... “Ah yes, that means that mine is worse than the others. There are plenty of others but people don't realize their clumsiness, I don't blame anyone
In addition, I am much more receptive and emotional than usual, I have the impression of being a fragile little thing that must not be broken.
How did your loved ones support you?
Lots of luck on this side, my beloved mother came a lot at the beginning to manage the stewardship, not too motherly, just what was needed
My sister sent me a funny card per week of treatment
My extraordinary husband who always knows what to say to me when I'm at rock bottom. He listens to me and comforts me, soothes me, sometimes shakes me.
My 11 and 9 year old daughters also often find the right words, they have more resources than many adults
And what advice could you give to loved ones who accompany a K fighter?
Just being there, sometimes words aren't enough, just a hug, a shoulder
Above all, do not fall into sterile empathy, it is often better to remain silent.
My friends showered me with gifts (varnishes, creams, beauty products, chocolates) 2 of them bought me (or thank you kARINE) vests: great idea, I wear them all the time I wrap myself in them , most likely regressive
I'm really spoiled but I have a one-year “whim” package...after stopping
I received a lot of cards, messages, flowers, just as much attention that helps me move forward day after day
Do you find out about K on the internet?
NEVER, we forbade it with my husband
I'm not a statistic
I just looked at the beauty advice forums.
What has the K changed in your life...?
(for example: your vision of the world, priorities, your essentials, refocusing those around you, in your work, your philosophy
Strangely I am told that I will prioritize, that I will gain height but for the moment it is quite the opposite: heightened feelings and emotions I see things with even less perspective than before. Once again I am a small thing fragile and should not be disturbed. I am on edge and cry very easily.
These treatments shake your body as much as your mind.
Free field ;)
tell us what you want (which might not be in my questions):
The hardest part for me is yet to come, regaining confidence in this body that betrayed me, finding the energy and empathy to heal again.. I'm afraid of being afraid...
Most of the time I am positive about the future and sometimes even surprise myself when talking about this journey as a beautiful life experience, rich in encounters and emotions. I never would have suspected that so many beautiful people cared a little about me.
I admire your fight, Charlotte, your beauty, your strength...
Thanks to you .------ Thank you Isabelle for your very right words, and your communicative strength, I think very much of you and send you all the most positive shock waves for the rest of the battle! We don't give up !!
Lots of beautiful positive thoughts to everyone!!
See you soon