ITW n°16: Carol - K fighter.
First of all, thank you very much for agreeing to share your K's story, it's really courageous and generous of you :)
Let's get started:
Who are you ?
First name: Carole
Age: 53 years old
Profession: (do not prefer to say more)
Where do you live: Paris
Can you summarize your (K fighter) story for us ?
What K (what cancer - grade if you wish / stage ditto):
A grade 3 breast K then recurrence on both.
When was it discovered?
16 years ago then again in April 2014
How old were you ?
36 years old and 53 years old
Under what circumstances was it discovered?
I was the first to discover it myself when I felt a marble rolling under my fingers above my right breast.
The second following an MRI requested by a plastic surgeon that I had been consulted for the change of my prostheses and also for sensations that I thought were adhesions.
If you are currently undergoing treatment, or in remission (for how long?)
In progress since July 2014
What treatments did you have?
Herceptin + Taxol Cocktail
2 mastectomies 4 days of hospitalization + 1 month of follow-up care outside Paris + 3 weeks of vacation this fell in August before starting my chemo
What tips directly related to K do you want to share (your feeling with the doctor, your good plans for organizing treatment, anything that seems useful to you ;))?
I put in place fun and pleasure to get through the course and the time in the chemo session and above all to be in the “focus mind” on the pleasant instead of being fully on the session, the treatment, the pain, the psychological, the future…..
For softness and cocooning, I arrived with:
- Thick Norwegian socks
- 1 alpaca stole
- 1 soft fleece blanket
- 1 book
- 1 writing journal on Mister K and my sensations, my feelings, my thoughts
- 1 computer + headphones + 1 comedy type film downloaded the day before for rental
- 1 knitting of a wool stole
According to my desires, I chose the hobby under Herceptin or under Taxol with my ice mittens, I put on my comedy film and I laughed discreetly of course, so as not to shock or disturb my neighbors!!
1/ chemo: (the helmet, your affinities with nurses)
During my first K, I had not lost my hair, so I was obsessed that this would happen, despite the assertions of an oncologist to which I had stood up, I made it a challenge, I WOULD NOT HAVE THE BOLD !
The nurses colluded, I asked to have my helmet and mittens changed under Taxol every half hour.
So I put a protocol in place:
If I could have had one at home, I would have worn it at a certain time when your head is burning and you feel that your scalp is hyper sensitized, for which a cold shower or a towel put in the freezer can do the trick.
From day D of chemo:
Do not wash your hair
Do not comb your hair in the morning
Do not touch your hair during the treatment
Wash once a week using emulsification and above all do not rub the scalp and style your hair lightly, holding the base of the hair so as not to pull on it.
I made my roots during chemo cycle breaks with natural products without henna, without ammonia, without resorcinol….
Result: I lost 60% of my hair, it was sparse but without holes and after a month, I found a natural appearance of volume and regrowth.
INCREDIBLE, people asked me how I did it!
How did you live the day before, the same day, the days after?
The 2 days preceding, I found a semblance of form and I worked often….. The day before, I had regular insomnia, on the big day everything was going well, with my hobby setting up during the sessions and the products of comfort, I was gently stimulated so as not to suffer and I found my little angels of young nurses, very jovial and very caring. (The positive atmosphere of this service resonates with their laughter...!)
The next days were harder but I tamed my side effects by preventing reactions with medications, before twisting my stomach….. I took Spafon and this for any type of condition that manifested itself with recurrence!
We observe and we warn!
And what were your tips?
I was followed externally by an acupuncturist doctor throughout the duration of the chemo treatment, it seems that I escaped the worst…. In terms of side effects
I would have liked to put something else in place (naturopath, sophrology, auriculotherapy, massage, etc.) but I understood over time that that would come later.
My physiotherapist also took part in part of all this…..
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
Between each chemo cycle break, I set up country getaways, weekend getaways, mini breaths of fresh air in order to reward myself for all the strength invested in this experience.
What practical tips can you advise us?
1/ beauty: varnish/magic creams/scars & co
Spend time taking care of yourself, making yourself beautiful, feeling beautiful becomes a priority
Moisturizing masks after sessions every 2 days
Make contact with your body by massaging yourself with creams and in particular my breasts, my scars that I do not reject…….. So much so that I look at them and tell myself that they are more beautiful than before, I maintain “my skin »with a daily massage with organic Aloe vera in the morning and in the evening a vitamin E cream to prevent reconstruction.
All this softens and becomes more beautiful over the months
My nails an extra set of care….the essential silicon varnish
I'm going to set up a post Mister K cure.
2/ look, your favorite look chemo, hospital, every day to feel good / shopping
My look is always the same Italian sport chic!
But my best look is my smile and my laughter...
3/ daily (sport, food & co)
I deviated from the food during these moments of treatment, I allowed it to myself for the comfort that junk food can give from time to time in consultation with my nutritionist, but nothing serious in itself,
Besides, I'm getting back into sport, I started with aquabiking sessions in the cabin.
Meditating and karate recently with the Cami, I will take the time to restore all of this over time.
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
- The white coat who announced to me on the phone my 2nd mister K while I was working, I thought I was wavering:
“You will lose all your hair!”
What advice could you give to loved ones who accompany a K fighter?
- Above all, do not carry the cancer of others
- Stay as you are, don't change anything, just understand that you have less patience linked to fatigue and cognitive and memory problems.
What would be the useful (internet) links that helped you during K?
- and the small booklets of LA LIGUE
What has the K changed in your life…?
The first had already changed something in me:
When the body suffers the soul rises!
To the point of becoming a life coach…..
This second one will boost me, to devour even more!
Eat it all
All embrace the world!
Thank you again for your testimony and for sharing your K/tips ;)
Lots of sweet positive thoughts
See you soon