ITW n°2: Emilie - K fighter.
ITW n°2: Emilie - 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: EMILIE
Profession: sales assistance
Where do you live: Bordeaux
Married for 10 years / 3 children
Can you summarize your K fighter story for us ?
Ton K: cervical cancer, stage 1 B2 N0
When was it discovered? in January 2014
Remission: since July 2014
How old were you ? 33 Years
Under what circumstances was it discovered?
I gave birth to my 3rd child at the end of May 2013, since September I had been bleeding and losing fluid. I ended up going to see Doc Gyneco at the beginning of January and she told me, after examining me, that I had a tumor and that I needed to see a specialist as quickly as possible. The K word hadn't come up yet.
The next day I saw a specialist who confirmed to me that she saw and felt a tumor the size of a clementine and that a biopsy had to be done, which she did immediately.
Then she made an appointment for an MRI asking me to return to see her after the MRI, 4 days later….
So on Monday, I have the MRI, the doctor confirms a localized tumor and nothing else, I think of a cyst without worrying…. But ….
I go back to see the doctor I saw 4 days ago. She seems surprised to see me arrive alone. Then while giving her the results of my MRI she tells me that she has the results of my biopsy and that I have cancer! The verdict: MISTER K falls...
Then she continues with a long monologue explaining to me the treatments envisaged, the operations…
I am stunned and I understand his surprise better when he saw me arrive alone...
I asked for a second opinion, I met another doctor the following week who coldly explained to me that I therefore have cervical cancer: squamous cell carcinoma of the cervix, stage 1 B2 N0.
I understand that you have since been in remission, since when?
End of treatments on July 17.
I had my surgery again in September + MRI and I saw the radiotherapist again in February.
What treatments did you have?
5 sessions, one per week. The first 2 sessions were CISPLATINE then as I didn't tolerate it CARBOPLATINE or vice versa I don't know anymore.
(Blood transfusion during my last chemo session).
CONCOMITANT RADIOCHEMOTHERAPY ie concurrent chemoradiotherapy combines external radiotherapy, chemotherapy and brachytherapy
2 laparoscopic operations.
The first on February 4 which consisted of removing all the pelvic and aortic combo lymph nodes (curage). Released February 7. with anticoagulant injections in the thighs or stomach for 1 month. (this is always the case when we operate on the stomach ;))
Then CONCOMITANT RADIOCHEMOTHERAPY from March 20 to May 2.
2nd operation on May 20: proximal enlarged colpohysterectomy with bilateral adnexectomy.
Well basically everything was taken away from me...Exit on May 24th with the gift of installing a cysthocat because it's been impossible to pee since the operation...
July 10 and 17: high rate brachytherapy (high dose rate brachytherapy is more rarely used to treat tumors of the cervix. This brachytherapy uses a radioactive source of iridium which has a much higher radioactive activity than that used for pulsed flow brachytherapy. Furthermore, the source is delivered for a very short time (a few minutes).
In this case, brachytherapy is carried out on an outpatient basis. You go to the hospital for the session (around 30 minutes) and then return home. The number of sessions varies from 2 to 6, distributed one to several times per week.)
Since the intervention on May 20, I am now treating the collateral damage ie my urological problems (double J or JJ probes in each ureter) and self-catheterization since November... numerous urinary infections (3 in 1 month between 11/15 and on 11/12).
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 ;))?
During and/or after K
1/ for chemo:
How did you live the day before, the same day, the days after? and what were your tips?
My chemo was not alopecia, i.e. I did not lose my hair, I was lucky, having kept it helped me a lot to stay “positive”
Nurses at the top RAS.
As I had few chemos, I also had few side effects :)
2/ hospital: nurse / doc / caregiver contact
Top hospital, same RAS team
3/ alternative medicine, if you have done so
I did not resort to Alternative Medicine, perhaps I should have given the burns I had following the rays. But I was too tired to find the energy after my treatments to resort to a “marabout” in addition to my VSL return trips every day for my rays.
At the end of my operations, I did lymphatic drainage 3 times a week to lighten my legs!
And in July/August I saw a “healer/magnetizer” because my legs were very sore, and the “magic” worked I think ;) I was no longer in pain after a few sessions!
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I slept a lot to recharge my batteries
But I had my other roommate “ Candy Crush ” to clear my head hehe, it actually ruined me a little in the process but it was for a good cause ;)
I loved and still love online Scrabble , a great outlet to clear your head!
Watch blogs of girls who do wonders at sewing, knitting... and order pretty things from them for my Zélie (my last)! I play dolls with her! As soon as the weather is nice, go to Cap Ferret and walk along the beach to the ocean, collect shells and swim in the waves.
I was also lucky enough to have a fairly precise protocol/schedule, with precise dates for treatments and operations, which helped me a lot because I felt taken care of, and everything was well organized!
What practical tips can you advise us?
During and/or after K
I'm not a big fan of Crème & co, but I put lots of sunscreen on my scars this summer
My super Shower Gel for Sensitive Skin Active Surgras from Roger Cavaillès
To accompany my early Menopause my very gentle intimate soap Saugella pH neutral Poligyn
2/ look, your favorite look chemo, hospital, every day to feel good / shopping
My super comfortable pajamas! at home where I spent most of my time,
At the hospital during my chemo days and when I went out every day for my rays: leggings and t-shirt, comfort above all!
3/ daily (sport, food & co)
No sport, I'm not a sport addict haha but I intend to get started now! (I still have to find THE sport that will motivate me),
For food after chemo / radio, big desire for freshness:
Raw vegetables, melon, pasta salads, and TOMATOES (yum, the delicious tomatoes that my grandmother lovingly bought for me)... I replaced the Diet Coke with Orangina (because with my metallic taste in my mouth it tasted better ;))
FYI, raw vegetables & co are not recommended because with the rays the digestive system is very sensitive… but hey I wanted to treat myself! so go go go! pleasure above all :)
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
On the last day of my treatments (my last brachytherapy) the radiotherapist still told me straight in the eye that I was doing well because my story was not a foregone conclusion! even though my doctor had never told me that my vital prognosis was in jeopardy and that my K was being treated.
She very clearly could have done without saying this boring sentence to me! I still don't understand the use of it! Result it's clever I hate it!
How did your loved ones support you?
Generally speaking, we are not very demonstrative, but this ordeal has strengthened us; my parents, my sisters and my grandmother have been great.
My husband remained silent, I didn't like talking about it, I even had trouble saying the K word, but he respected my silence, while remaining super close
And my children did the rest
Without forgetting all my great friends!
And what advice could you give to loved ones who accompany a K fighter?
Being present (feeling supported is important)!
Do not feel embarrassed in our presence, do not change your behavior
You have 3 children, how did you manage with them, the announcement and the way you approach daily life?
Despite the advice of a psychologist, I was unable to explain or pronounce the word “Mister K”, I told them that I had a “Bobo in my stomach, which they were going to remove”, with These words made them understand that it was a big problem, but we never talked about it.
I was “lucky” somewhere because it did not impact their daily life (neither at school, nor every day)
I think children have a 6th sense for that...
My oldest was very caring, and delicate in letting me rest, I often heard between 2 doors “Shh, mom is upstairs, she’s resting” ;)
My boy in the middle was silent but he's a little guy, that's normal, we just had an exchange one day because I was giving him an “anatomy lesson” in front of a drawing of the human body, and pointing at my affected area,
I told him: “you see my Bobo is here, they are going to take him away from me but I won’t be able to have any more babies.”
He replied: “Oh no! That's not possible, ask them to give you everything back! ... ;)
The last one (Zélie) who was 8 months old at the time of the discovery, must have felt that she should not ask me too much effort, she did not move and remained lying next to me from 8 to 13 months old the time of the treatments, it's a miracle in some way, because as soon as I was told she was put back, she resumed the “active” life of a baby of her age, she walks today
I believe that for me as for them, the fact of having kept my hair helped a lot, because in their eyes nothing really changed, apart from the time I spent resting.
What would be the useful (internet) links that helped you during K?
I have never looked on the internet because I was advised against it, you see everything and anything and a lot of horror....
I'm just starting to look at blogs of women like me and that's how I found you Charlotte, I think I only now realize what I went through.
What has the K changed in your life…?
Love life and enjoy your family
I am perhaps more tolerant too, I discovered beautiful people
Today I realize the extent of my K, so I am rebuilding myself, I hope that the law on the “right to be forgotten” will pass, because after all that we want our lives to return to normal, and the fact of not being able to borrow & co doesn't really help you feel 100% normal! “I can’t wait for the law to pass”!
Tell us what you want (which may not have been in my questions):
The positive point: I lost the weight I had accumulated over several years. I'm back to a size 38 and I'm proud of it! I feel much better about myself.
And now I have to motivate myself for sport... It's important to move!!
Thank you again Emilie, for your precious testimony and for sharing the experience, your K & tips!
Lots of sweet positive thoughts
See you soon
CharlottePS: see you Friday for the post on alternative medicine / treatments with booster sides!
ITW n°2: Emilie - K fighter.
First of all thank you very much for accepting to share your story of your K, it is very brave and generous.
Who are you?
Profession: sales assistance
Where do you live: Bordeaux (France)
Married since 10 years / 3 children
Can you summarize the story of your K?
Which cancer - stage / level:
Cervical cancer, Stage 1 B2 NO
When was it discovered? In January 2014
Remission: Since July 2014
How old were you? 33 years old
How was it discovered?
I had given birth to my 3rd child in the end of May, 2013, since September I had bleedings and losses of liquid. I eventually went to see Doctor T at the beginning of January and she announced, after having examined me, that I had a tumor and that I had to see a specialist as quickly as possible. The word K had not been evoked yet.
The next day I saw a specialist who confirmed to me that she saw and felt a tumor of the size of an apricot and that it was necessary to make a biopsy, what she made straightaway.
Then she made an appointment for me to do an MRI asking me to return to see her after the MRI so 4 days later.
Monday, I did the MRI, the doctor confirms a located tumor and nothing else, I think of a cyst without worrying. Aim.
I return to see the doctor seen 4 days previously. She seemed surprised seeing me arriving alone. Then while giving to her the results of my MRI she announces to me that she has the results of my biopsy and that I have a cancer! The verdict: MISTER K falls...
Then she moves on to a long monologue explaining to me the envisaged treatments, the operations …
I am sounded and I understand better her surprise by having seen me arriving alone…
I ask for a 2nd opinion, I meet another doctor the same week who coolly explains that I have a cervical cancer: a epidermoid carcinoma of the collar, the stage1 B2 N0.
I understood that since this, you are in remission, since when?
End of the treatments the 17th of July
I have seen my oncologist in September + MRI and I will see the radiotherapist in February.
Which treatments did you get?
5 sessions once a week. The first 2 sessions were of CISPLATINE then as I badly supported it CARBOPLATINE or conversely I do not know any more.
(Blood transfusion during my last session of chemotherapy).
CONCOMITANT RADIOCHEMOTHERAPY which means that the concomitant radiochemotherapy associates an external radiotherapy, a chemotherapy and a radium therapy
Operation if you had it (how long were you hospitalized):
2 operations by coelioscopy.
The 1st on February 4th which consisted in removing all the pelvic aortic lymph nodes and the combo (cleaning out). Taken out on February 7th. With during 1 month injections of anticoagulants in thighs or stomach. (It is always the case when we operate the stomach;)) then CONCOMITANT RADIOCHEMOTHERAPY from March 20th till May 2nd.
2nd operation on May 20th : proximal with bilateral adnexectomy colpohysterectomy widened.
Well roughly we took it all away from me …Taken out on May 24th with in present the pose of a cysthocat because impossible to pee since the operation...
In July 10th and 17th : broadband radium therapy (the broadband radium therapy of dose is more rarely used to handle the tumors of the neck of the womb. This radium therapy uses a radioactive source of iridium which possesses a much higher radioactive activity that is used for the radium therapy with pulsed flow. Besides, the source is freeduring a very short time (a few minutes).
In this case, the radium therapy is carried out in ambulatory. You go to the hospital for the session (approximately 30 minutes) and then return to your home. The number of sessions varies from 2 to 6, distributed to one or more in a week.)
Since the intervention of May 20th, I handle from now on the collateral damage stands for my urologic problems (probes double J or JJ in every ureter) and auto sounding since November numerous urinary infections (3 in 1 month between 15/11 and 11/ 12).
What tips in direct link with the K do you desire to share (your feeling with doctor, your good plans of organizational treatment, or everything which seems to you useful;))?
During and/or after the K
1/chemo: (the helmet, your affinities with the nurses)
how did you experience the day before, the D Day, the days after the Chemo? What were your tricks?
And what were your tricks(clevernesses)?
My chemo: I did not lose my hair, I was lucky, to have kept them has it helped me a lot to remain "positive"
Male nurses and female nurses PERFECT.
As I had few chemo, I also had few side effects.
2/hospital: contact nurse / doc /
Hospital perfect, Same nothing to report
3/complementary medicine, if you had some
I did not turn to the complementary medicine, I should have due to the burns that I had further to radiotherapy. But I was too exhausted to find the energy after my treatments to turn to a "marabout's" besides my A/R in VSL every day for my radiotherapy.
At the end of my operations, I made lymphatic treatments 3 times a week to relieve my legs!
And in July / August I saw a "quack / magnetizer" because my legs were hurting a lot, and the "magic" operated I believe;) I didn't have any more pain after the sessions.
What would do to change your ideas / to empty your head (before chemo, operation and co)?
I slept a lot to get fresh ideas into me
But I had my other companion of room the "Candy Crush" to empty me the head hihi, that more over a little ruined me in the passage but it was for the good cause ;)
I was lucky enough to have a protocol / schedule with precise dates of treatments and operations, that has helped me a lot because I felt taken care of, and everything was very organized!
Which tips Practico / Practical can you recommend?
I am not very intro creams and co, but I used a lot of sunscreen on my scars this summer.
2/ look, your favorite chemo look to feel good
My soft pajamas! At home where I would spend most of my time,
At the hospital during my chemo and everytime I would go for radiotherapy: leggings, t-shirt, comfort being the most important!
3/ Daily life (sport, diet and co)
No sport but I am a real sport addict, so now I will get back on track! (First let's find THE sport that will motivate me), for the diet after chemo / radio big urge for freshness:
Salad, pasta, tomatoes (yum, the amazing tomatoes my grandmother would go and get for me) I exchanged Diet Coca for Orangina (With my taste of metal in my mouth it was better ;))
For info it is recommended to eat vegetables and co after radiotherapy as the digestion is very sensitive…. But I mostly wanted to make myself happy! So let's go go go! Happiness before everything :-)
What are the sentences (that you remember) that people told you when you had the K and that were n't needed?
The last day of my treatment (my last cure) the radiotherapist told me while looking at me in the eyes that I was fortunate as I my sickness wasn't an easy one!
When my doctor had told me that I was going to be fine and that my life wasn't engaged and that my K could cure itself.
She didn't need to share this with me! I don't understand why she had to share this!
So now I hate her!
How have your close friends accompanied you?
In a general way, we are not very demonstrative, but this test strengthened us my parents, my sisters and my grandmother were great. My husband remained silent, I did like speaking about it, I even had difficulty in saying the word K, but he respected my silence, while remaining hyper close
And my children made the rest without forgetting all my great friends!
What would be the tips you could give to the relations of a K fighter?
Be present (to not feel alone is important)
To not be disturbed by our presence, do not change behavior
You have 3 children, how do you manage with them, the announcement and the way of approaching daily life?
In spite of the advice of one shrink, I did not manage to explain nor to pronounce the word "Mister K", I told them I had a "booboo in the stomach, that they were going to take away", with those words they understood that it was a big booboo, but we never spole about it.
I was lucky somehow beacause it did not impact their everyday life neither at the school, nor evrey day: I believe that the children have a 6th sense for that
My oldest was very caring, and delicate to let me rest, I often heard between 2 doors "Hush, mom is upstairs, she is resting" ;)
My boy in the middle was silent but he is a little guy it is normal, we just had an exchange one day because I gave him one "lesson of anatomy" in front of a drawing of the human body, and by pointing at my affected zone, I told him:
"you see my Booboo is here, we are going to take it away but I won't be able to have any more babies"
He answered me:
"Oh no! that is not possible ask them to put everything back to you"!!
The youngest who was 8 months at the time of the discovery, did feel that she could not ask me for too much effort, she did not move and remained next to me from 8 to 13 months during the time of the treatments, it is a miracle somewhere, because as soon as we announced that I was OK, she came back to the "active" life of a baby of her age, she walks today
I believe that for me as for them, the fact of having kept my hair helped a lot, because for them nothing really changed, set apart the time which I spent to rest.
What did K change in your life?
To love life and to take advantage of your family I am can be more tolerant also, I discovered beautiful people
I realize the scale of my K today, so I am reconstructing myself, I hope that the law on the "forgiveness" is going to pass, because after all that we want our life to go back to normal and the fact of not being able to borrow and co does not frankly help to feel the effects 100% normal! “I can’t wait for the law to pass!”
Open fields ;) tell us what you wish
The positive point: I lost my kilos accumulated for several years. I found a size 38 and I am proud of it! I feel much better in my skin.
And now I have to get motivated for sport…It is important to move!!
Thanks again Emilie, for sharing your story & tips!
Many good vibes
See you very soon