ITW n°107: Stéphanie - K fighter (breast).
Hello,
today, Stéphanie, 43 years old, positive and generous, gives us her fight with sincerity, on her Breast K discovered in July 2016, concerned about the eyes of others, yes of course, like all of us, but who finally took the plunge to take on this parenthesis of life with strength, confronting it without taboo... Because as she very rightly says "I am a normal person", oh yes, a hell of a "normal" warrior ;)
Surrounded by the love of her loved ones and kindness, Stéphanie also gives us her tips that have helped her, such as creating connections in discussion groups, but also more very practical things!
Great discovery
Let's get started:
Who are you ?
First name: Stephanie
Age: 43 years old on October 27
Profession: Teacher
Where do you live: Toulouse
Why do you agree to share your story today?
because I felt isolated despite having a caring environment. I think talking about it is a first step to moving forward. Because sharing your experience can help other people move forward and feel supported.
What are your qualities (in a few words)?
generous, perfectionist, faithful
What are your passions (in a few words)?
travel (the islands, Asia in particular)
What K (what cancer - grade if you wish / stage ditto):
left breast cancer HER2 3+ grade 2 (tumor 4 cm, 1 lymph node affected / 5 removed, no metastases)
When was it discovered? How old were you ?
early May 2016, 42 years old
Under what circumstances was it discovered?
visit to the gynecologist, prescription for a control mammogram/ultrasound
If you are currently undergoing treatment, or in remission (for how long?)
I started treatment on July 29, 2016
Can you summarize your (K fighter) story for us ?
the agonizing wait between the biopsy and the announcement of the result (15 days is terrible). On May 21 I was diagnosed with cancer “in situ” (biopsy), they just had to operate on me and that's it. I'm positive, my morale is up. Unfortunately, the lymph node sampling changed the situation. Against all expectations (doctor amazed), on July 4 I was told that I had to undergo a heavy protocol because a lymph node was affected and that it was an aggressive tumor (HER2 3+). On July 19 and 20, the catheter is inserted, a battery of examinations (CT scan, bone scintigraphy) and announcement of the protocol described in the following question. Two nightmare days waiting for the results. I looked for information on the Internet to find associations or others that could help me overcome this ordeal: League Against Cancer, blogs, Facebook pages, etc.
What treatment did you have?
chemo: if you have had it: 3 courses of FEC, 3 courses of taxotere (in combination with Herceptin) – 1 course every 3 weeks from the end of July to mid-November 2016
radiotherapy: if you have had it: 30 (from mid-December 2016)
operation if you have had one (how long you were hospitalized): total removal of the left breast and immediate breast reconstruction – 5 days of hospitalization before the start of treatment
other: 1 injection of Neulasta after each treatment to boost white blood cells, targeted therapy for HER2 3 + 18 injections of Herceptin for one year (1 every 3 weeks), hormone therapy for 5 years
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):
laugh with the nurses, don't ask too many questions about the infusions administered, put on the cooling helmet and take selfies (Smurfette!!!)
How did you live the day before, the same day, the days after chemo?
and what were your tips?
Don't think about it too much, each day is enough of its worth. The day before, I do really nice things (shopping, chats with friends, etc.), the following days mostly rest and a few family visits mainly. Do not eat too much the day before. Have fun above all. Don't hesitate to say that you are tired.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
be positive with the nurses even if you feel sad. Some patients are aggressive, very impatient.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
magnetizer, osteopath, reflexologist – relieves joint pain well – homeopathy has not really had any effect on me – I hope the magnetizer will be able to take the heat away from me during radiotherapy sessions
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
La Roche Posay silicon varnish, physiotherapist for lymphatic drainage of the left arm and healing linked to breast removal
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
scarf for chemo and at home, wig for going out
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
eat fresh produce, go for a 30 minute walk 3-4 days later (or before if you feel so) even if you feel exhausted (healthy fatigue).
4/ hair problem (eg: did you wear a wig, scarves, hats)
flaking, irritated scalp, I used sweet almond oil and mild shampoos (Avène or brands sold in specialized stores). I ended up shaving my head with clippers
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
At first, yes, the way others looked at me weighed on me when we wore a scarf. Compassionate or sometimes malicious, embarrassed looks. So I wore the wig to pick up my children from school but ultimately I don't care anymore. It doesn't matter what other people think. I look people in the eyes, I smile. I am a “normal” person.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
“you don’t have to do chemo, if you eat healthily it will get better”.
“what is good about the oncopole is that from now on they will build a palliative care unit”
“I don’t know how you do it, you’re brave. Personally, I would have lost my temper.
How did your loved ones support you?
proofs of love all the time from my husband. Discussions, visits from relatives and work colleagues, expressions of affection (numerous gifts received by post, a cure = a box), text messages of encouragement
And what advice could you give to loved ones who accompany a K fighter?
patience. Accept that you do not understand everything that is going on in the sick person's head, accept that they want to go to support groups or a psychologist to say things that they could not say to those around them (anxiety, uncertainties).
Do you find out about K on the internet?
I did it at first on discussion forums and it demoralized me. Now I'm more looking for discussion groups and information on complementary care.
If so, does it make you feel good?
yes and no (do not focus on statistics and avoid discussion forums with old or recent testimonies)
If so, what would be the useful (internet) links that helped you during K?
Better to go to reliable sites
and that of the League, that way
Facebook pages:
“ breast cancer let’s talk about it ”
What has the K changed in your life…?
The advantage of this situation is that we refocus on the essential: ourselves. We discover the pleasure of speaking with strangers in a discussion group, of feeling a solidarity that did not exist before. There is an urgency to do things we love, to enjoy life to the fullest. Take care of my family more, cook good meals. Accept that we are not immortal.
Free field ;)
tell us what you want (which might not be in my questions):
some tips
Find out about the payment of salary and/or compensation (long sick leave, depending on your profession not necessarily obvious)
Request a second medical opinion regarding the planned protocol.
Request ALD (long-term illness) quickly to no longer have to advance medical costs and a VSL (vehicle for home/hospital travel)
Thinking about post-cancer from the start because it gives perspectives: how to reconcile stopping work while staying in touch? Find out about post-cancer spa treatments, etc.
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Thank you Stéphanie, for this very valuable testimony.
You can leave comments below.
If like her, you want to tell your story, your projects and share your tips, go here , send me your questionnaire to: interview@mister-k-fighting-kit.com
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NEVER GIVE UP!!
Charlotte
