ITW n°32: Melanie - K fighter.
Mélanie: ex K breast 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: Melanie
Age: 33 years old
Profession: In professional retraining following the K
Where do you live: Montreuil
Why do you agree to share your story today?
Because I deplored the lack of information throughout my treatment and still sometimes today
What are your qualities (in a few words)?
Combative (fortunately!) generous and honest
What are your passions (in a few words)?
travel, photography, reading
What K (what cancer - grade if you wish / stage ditto):
K inflammatory breast infiltrating lobular carcinoma grade II
When was it discovered? How old were you ?
It was discovered at the end of December 2013, I had just turned 32
Under what circumstances was it discovered?
It was discovered following IVF (which did not work), my breasts had swollen, and one of the two remained red, very swollen, painful and the nipple had a tendency to go in.
If you are currently undergoing treatment, or in remission (for how long?)
I have been in complete remission since October 8, 2014, almost 1 year, yay!!!
Can you summarize your (K fighter) story for us ?
December 2013. But what's wrong with my right breast? Excess hormones following IVF, I tell myself. It is larger, painful, red, painful lymph nodes under the armpit. I consult the emergency room because you don't play with your breasts. An intern diagnosed me with a probable infection - 'you smoke' 'yes but not much'. I'm leaving with antibiotics, in 8 days 'we're not talking about it anymore'.
But I can see after 5 days that nothing is happening and this nipple is coming in... Back to the emergency room, another intern "I can't tell you, I've never seen that." Great….
Finally I was sent the next day for an emergency biopsy.
On 12/19/13 I am there. Positive lymph node biopsy result but positive for what? I don't understand even if I feel that all this doesn't bode very well. Negative skin biopsy. I'm being sent for an emergency breast MRI.
The wait for results - the same day - is long. I watch the patients leave the department one by one, looking relieved. And the doctor who gave me the MRI comes back to me, kneels with a look that suggests the worst "well, you suspected that" me completely distraught "about what?" even though I had understood correctly.... My partner and I were then taken, crying between two curtains, into a back room. It's cancer. I'm 32 years old, in 6 days it's Christmas, I imagine the worst, that it's my last Christmas...
Everything comes together, on December 23, gynecologist surgeon consultation "we're going to have a breast ablation after chemo", I think I'm in a bad dream, I'm going to wake up, cancer at 32 is not possible!
Oncologist consultation the same day, explanation of chemo, you have to go quickly, the cells progress quickly when you are young.
Placement of the PAC on December 26, under local anesthesia, absolute suffering.
January 2, 2014, 1st chemo - May 29, 2014 last chemo.
The treatment worked well, no more K sign.
But I would not escape the ablation on July 8, 2014, in the meantime genetic research has highlighted a mutation in the BRCA2 gene….
Mid-August to end of September 2014, daily radiotherapy.
Since then, I have been on Tamoxifen for 5 years, but maybe it will stop within 2 years: I have wanted a child for a long time, it was already complicated, we will try again.
What treatment did you have?
I had 8 chemos: 4 Doxorubicin – Cyclophosphamide and 4 Taxotere
operation if you have had one (how long were you hospitalized):
Removal of the right breast (that of the K) and axillary dissection in July 2013 – 5 days of hospitalization
Prophylactic (preventative) mastectomy of the left breast in April 2015 – 5 days of hospitalization
I am currently undergoing reconstruction using the BRAVA method, a long process which requires 5-6 or even 7 interventions. They take fat from my body (thanks to free liposuction) and put it in my new breasts. It is a method without prostheses, natural, which is not yet recognized in France but which is 10 years old in the USA. So it's not reimbursed here, but by the middle of next year I can hope to have 'finished' breasts just with my fat. They will age like everyone else's breasts, I won't have prostheses to change every 10 years. They will not remain frozen like with prosthetics. I am at 2 interventions, the next one will take place at the beginning of October. The method is very restrictive (wearing a machine 4 weeks before the operation then the 4 weeks following the operation) but it is worth the effort.
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):
I was very apprehensive about chemo and its side effects, particularly vomiting – which I didn't have in the end, despite some severe nausea.
Hair loss was the most traumatic side effect for me, I'm only just getting over it now that my hair has returned to a decent size.
For the first 4 chemos, I was nauseous for 4 days, I didn't eat anything, the smells (even cooking pasta) were unbearable for me. To make it pass more quickly, I slept as much as possible during the day and I ate exclusively bread crumbs (the crust smelled too strong...) and coke without bubbles.
My chemos took place every 3 weeks, I had a good 2 weeks of respite.
The last 4 chemos, which were supposed to be less painful, were very painful in the end... No more nausea, but permanent joint and muscle pain - no respite this time between chemos - loss of taste, as if the taste buds were burned. I wore the frozen gloves and socks to preserve my nails, in addition to the polish. The cold is unbearable, more than once I almost stopped putting them on but it's really effective since I haven't lost any.
It's stupid but I also suffered a lot from constipation during my chemo... My overall transit has suffered a lot, it's finally been better for 4 months... And unfortunately I haven't found any tips to remedy it.
During the entire treatment I went out as much as possible, even to walk and go around the neighborhood. I bought an exercise bike and tried to do as much as possible to regenerate blood cells.
How did you live the day before, the same day, the days after chemo?
and what were your tips?
The few days before the first 4 chemo treatments, I ate whatever I wanted, knowing that the next 4 days I would not eat anything. Otherwise I haven't changed anything in particular.
For the next 4, nothing special either. I was just going to my mother's in the countryside for the week following each of these chemos. I was bedridden unable to cook myself food or anything else…
2/ hospital: (e.g. contact with nurses / doc / caregivers):
I am being followed at Tenon hospital, my oncologist is wonderful, she has always been honest and fair with me. No innuendo, no false good news.
The gynecological surgeon is also very good, she has not minimized anything and is very positive.
The chemo nurses were very nice too, really happy.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I took homeopathy to try to manage fatigue and nausea but didn't see any great effects...
I had been told about acupuncture but I didn't have the courage.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I tried to continue to have a normal life, not to change anything in my habits, and to do everything so that the physical signs were not too obvious. My partner and I went to Mauritius, Italy, we continued our lives, I didn't want the K to take over. My nephews were my breath of fresh air, I was going to spend a week with them after my chemo. My mother was also very present, she was my chemo companion, present for the 4 days following each chemo to manage everything (cleaning, cooking, getting me out of bed, cheering me up). Those around me (close family and close friends) were very positive and didn't cover me too much, which I feared.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
All Avène and La Roche Posay creams for face and hands. Dexeryl body cream.
La Roche Posay dark silicon varnishes – very effective but I can't see them in paint today….
Avène Cicalfate healing cream for mastectomy and PAC scars.
I was entitled to a special makeup course at my hospital “I have cancer, hide it!” , frankly I encourage you to do it, the makeup tips especially for the eyes are great, a line along the eyelashes (which we no longer have…) and presto it looks like we actually have some.
Another piece of advice, if you have time (we agree of course...) before your first chemo, don't hesitate to get your eyebrows tattooed ( Charlotte's advice: at L'Atelier du Sourcil for example ), it's is super natural and what a relief to no longer have to draw a line with a pencil every day and be careful not to erase it (like by scratching, wiping or something else...). I did it at the end of my chemo and I didn't regret it.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
The days following chemo I had difficulty getting dressed, putting on my wig, putting on makeup but I always did it and my coquetry was always praised even during this period. There was no way the K would steal all my femininity, he had already taken my hair and my breasts, that was enough!
I took a lot of long hot baths and my hot water bottle became my best friend. Warmth feels really good.
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
I'm quite sporty, I run twice a week. On a daily basis, I continued to try to do sports: walking, cycling. I had a lot of trouble reading. My brain was working too much “the little bike is on full blast” as my best friend says.
Walks to the beach with my nephews in the great outdoors of the North were a real breath of fresh air.
4/ hair problem (eg: did you wear a wig, scarves, hats)
As soon as I was told that all my hair was going to fall out, I think my brain shut down and I no longer heard anything about the announcement appointment with my oncologist. Everything but not the hair! This is THE physical sign. From the start I decided that I would wear a wig, identical to my hair, same color, same length. I took a natural hair wig, it cost us an arm and a leg – not fully refunded. I don't regret it, because for ordinary people it wouldn't be obvious that it was a wig. I don't know if I could have handled my bald head. At home and at night I wore a cotton fiber cap, very soft.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
I did everything to ensure that other people's views did not change. I have a strong character, I would have refused to be pitied. I tried to continue living as before, going out, putting on makeup, doing my hair….
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
There were a lot of people hearing the “you should eat organic now” announcement.
After the first chemo and hair loss, my father-in-law “you can see your wig”… then “if your blood cells don’t come back up you won’t be able to do your chemo”
I was also asked if I had “made my arrangements?” » - like bury me right away….
Last week, I checked for cysts on my breasts (which I no longer have) – the ultrasound machine “well, let's go and do a mammogram”… A mammogram without breasts!
Honestly I've heard so many...
And the “but it grows back hair, it doesn’t matter, we don’t care” it traumatized me so much about hair loss that I ended up answering “it’s clear it’s not yours”
How did your loved ones support you?
No order of preference.
My partner was great. He didn't cover me too much, I would have hated it. He was present. It was hard. This called the baby project into question, and for another 2 years, he could have left. But it was always there.
My mother, my chemo companion and the following days. She took over at home to manage daily life and motivate me to go out once a day. She had leukemia at 28, she's a fighter too, she passed this strength on to me.
My sister, for her bathtub (laughs) but above all for her presence, without overdoing it.
My nephews, children are life, with their eyes, I had the impression of not having changed.
My best friend who is in Lyon and who continued to be with me as always without changing her behavior, who came the week of my operation, I know she suffered from it but never in front of me, like everyone else.
I haven't always been nice to those around me, the days when I couldn't stand anything or anyone, when I was angry with the whole world... Mea culpa.
I also “lost” a friend who was very close to me…. She didn't know how to manage my illness. Fear perhaps. We saw each other almost every day. The news became less frequent and finally disappeared.
And what advice could you give to loved ones who accompany a K fighter?
Depending on the character of the person, do not complain too much or brood over the sick person, it pulls you down…. Try to be your usual self, acting like the K isn't there.
Do you find out about K on the internet?
I avoid it, it's too anxiety-provoking. Each case is particular.
What has the K changed in your life…?
The K refocused my priorities. I no longer want to do the job I did before – I was a sales manager in construction, I worked 50 hours a week, I don't want that anymore. I want to be useful. I am taking the competitive exam to be a school teacher.
I also refocused on family.
We created a project with my partner while waiting to be able to do the one that is most important to us (the baby), we bought an old house near my family, which we are all renovating together.
And I started creating jewelry in my free time: http://www.alittlemarket.com/boutique/manies-1833209.html
I also worry a lot less about stupid things. It still happens to me because it's in my character, but I try to let it go. I'm alive and I intend to make the most of it.
Free field ;)
tell us what you want (which might not be in my questions):
Wow, but I wrote a hell of a lot! I hope that didn't bother you!
Just to conclude, the hassle continued after the mastectomy: special bras for wearing prostheses are - how should I say made - for 50 year old women. Hard to find things for a 30 year old woman....
Thank you again for your testimony and for sharing your experience and your valuable tips, I hope I wasn't too indiscreet ;)
Lots of nice positive thoughts
See you soon
PS: if like Mélanie you want to tell your story and your tips , it's HERE<:>