ITW n°101: Delphine - K fighter (bile ducts).

Hello,

resilience has a name: the amazing Delphine, 35 years old, gives us her long fight today, that of a tenacious young woman, who since she was 9 years old, has been (far too) familiar with the medical world, she tells us the battle of his life.

Because bearing witness to the struggles of life is essential, Delphine reveals to us today what is the struggle of a young woman who enjoys life, overwhelmingly sincere, natural, feminine, beautiful and dignified, who only dreams of one thing finding her "metro work sleep", a woman like the others ultimately but who is fighting a K of the bile ducts, after having several different ones for several years....

Breathtaking, I invite you to discover Delphine, who really makes you think and inspires...

We send you a lot of strength

Great discovery

Let's get started:

Who are you ?

First name: Delphine

Age: 35 years old

Profession: Social worker

Where do you live: Normally in Paris, and have been for 17 years, but for more than 10 months in the provinces, with my parents, because single in convalescence “obligates”…!

Why do you agree to share your story today?

Many people around me (family, friends, healthcare workers, etc.) have repeatedly advised me to write my story, because my journey is challenging, it would be “atypical”…

I'm not ready for a novel lol but I want to indulge a little I think!!

What are your qualities (in a few words)?

optimism and tolerance.

What are your passions (in a few words)?

travel, family, and music; I have practiced the transverse flute for more than 16 years, and I cannot do without my headphones / music channels / radios… for more than a day J

What K (what cancer - grade if you wish / stage ditto):

I have had several... Colon adenocarcinoma in 2010 (classified stage pT1SM1N0) and cholangiocarcinoma in 2015 (classified stage Pt3N0), and both called “in situ”.

I had not had treatment with chemo/radiotherapy or hormonal therapy until last year, but metastases appeared in the liver at the end of 2015, then in the summer of 2016, others on the peritoneum, the adrenal gland and vertebrae: I have been under chemotherapy since August 2016.

When was it discovered? How old were you ?

the first, that of the colon, was in March 2010, I had just turned 28 years old. For the bile duct, in 2015 I was 33 years old. And finally, my metastases appeared at 34 years old

Under what circumstances was it discovered?

My medical journey is complex... I have been ill since 1991 (I was 9 years old): I was diagnosed with Ulcerative Colitis (a disease which affects the digestive tract in particular), which progressed despite treatment, and in 2000 Primary Sclerosing Cholangitis (biliary tract disease) was detected (rare but possible worsening of UC). This pathology has forced me to undergo extensive medical follow-up for over 25 years.

So it was through numerous surveillance assessments that at the beginning of 2010, they found areas of high-grade dysplasia and 2 tumors in my colon: thank you colonoscopy because at that time I was doing wonderfully!!! No symptoms! The colon and rectum were completely removed to avoid any risk of recurrence.

For cholangiocarcinoma, in 2015, the tumor blocked my main bile duct and therefore the circulation of bile: catastrophic blood test and I was all yellow!!! Examinations quickly detected THE cyst.

If you are currently undergoing treatment, or in remission (for how long?)

I have been in chemotherapy since August 2016, the results are encouraging, they show a good response to the treatment, but the doctors remain measured in their comments: the lesions are stable, even slightly decreasing, that's it...

Can you summarize your (K fighter) story for us ?

It's difficult to summarize... Having been ill since I was a child, I don't particularly have any frustration with what my cancers have prevented me from doing (well to be honest, being single is still a big consequence , that's for sure!!!! And it weighs on me more and more…), I think it's my loved ones who suffer the most, even if they don't show me anything…

It was complicated because coming from the provinces, my health problems took a long time to be taken seriously by the medical profession who (when I was barely 9 years old) spoke of psychological problems and that it would pass… But I was losing weight visibly and had completely stopped my growth curve. Fortunately, my parents didn't give up, and working in the medical field, insisted and one thing led to another and I finally ended up being taken care of at the Necker hospital.

I was able to study (with many school absences but which I was able to manage), find work, travel, have friends, lovers… But all of this especially thanks to the love and support of my family , and my loved ones, each more exceptional than the last…

You should know that UC causes osteoporosis so I had numerous fractures in a very short time, and then in January 2014 I also had a pulmonary embolism (we never knew the cause...) . A real medical bullet in fact!!!

I am lucky to be cared for by the best specialists in my pathology, and all my follow-up is grouped in a large Parisian hospital; I am followed in the hepato-gastroenterology and nutrition department, in diabetology, in rheumatology, in cardiology, etc…

I underwent very major operations: total coloprotectectomy with ileo-anal anastomosis and reservoir in May 2010, in March 2015 a cephalic duodeno-pancreatectomy was performed (this unfortunately triggered diabetes and I have been, ever since , insulin-dependent), and finally to get rid of liver metastases, 60% of my liver was removed in April 2016…

I might as well tell you that I don't really know what's left in my stomach anymore, but these doctors have the fingers of magicians, and our body is an incredible machine, because ok, everyday life isn't easy, but I'm living...!! !

I have been involved in the medical field almost forever, and honestly I didn't ask myself any questions until last year: I have always followed medical recommendations (operations, care, treatments, etc.). But strangely it was the word “metastases”, pronounced for the first time in March 2016 followed by “chemotherapy” mentioned in July 2016 which gave me a HUGE slap in the face… For the first time I gave up, thought about imminent death, in short I was scared or to be honest I really “freaked out my race”. It's been a little better for a few weeks, I'm having fewer bad trips but as the battle is still ongoing, I'm not calm... I discuss it with the psychologist in the department, the eye and advice of a outside person makes me feel good…

What treatment did you have?

chemo:

I have chinio every 15 days. I chose to do it in the provinces with my parents, so that in the days that follow, I'm not alone, just in case... And the service and all the staff are great! But it is “Paris” which manages the file!

I am on my 18th chemotherapy session. At the beginning I had the Gencitabine mixture combined with Oxaliplatin but the latter having had a neurological impact (damage to the nerve roots, I have parasthesia in my feet and hands) it was stopped in November. Since then I have only had Gencitabine.

radiotherapy:

No

operations:

• In May 2010, total coloprotectectomy with ileo-anal anastomosis and J-shaped reservoir: 15 days of hospitalization and 3 1/2 months of sick leave,
• in March 2015, duodeno-pancreatectomy-cephalic: 15 days of hospitalization and 3 months of sick leave,
• hepatectomy (60% of my liver removed) in April 2016: the hospitalization should have lasted 10 days but I developed septicemia (stay in intensive care then in intensive care), I stayed 2 months in the hospital. I was discharged in June, returning to my parents' home, but I relapsed: in mid-July I had to be rehospitalized for a month and a half.

What tips directly related to K do you want to share ?

1/ chemo: (ex: your tips, the helmet, your affinities with nurses):

Despite the gas factory side of Parisian hospitals, with unfortunately enormous medical errors and doctors who are more technical than attentive, I came across a great healthcare team, very human and available... Not many tips to give…

On chemo days, as I am lucky enough not to have too much nausea, I take little ones in my backpack (with, among other things, books, crochet hooks, magazines, computers… depending on my mood!!!!) things to snack on J, it's always good for morale, and too bad for diabetes ;-)

How did you live the day before, the same day, the days after chemo?

and what were your tips?

I'm always in a bad mood the day before, not very talkative on the big day and then everything goes back to normal!!!

But I admit that it's not easy because I'm 35 years old and my treatment being tiring, I returned to my parents: daily life can be VERY complicated... It's been 10 months! If all goes well I will be able to resume part-time therapeutic work in mid-March!!! I love my family, but it's time for my life to return to normal, I want my good old “metro-work-sleep”!! As much as possible…

2/ hospital: (e.g. contact with nurses / doc / caregivers):

The provincial hospital where I do my chemo has nothing to envy of the large Parisian hospital where I continue my overall medical follow-up. The care is much more personalized: thus, I will gradually resume my work in Paris, maintain medical follow-up in the Parisian hospital, but I will keep the chemo in the provinces. Thanks to my very understanding employer, the approval of the doctors and the therapeutic part-time, the organization is completely possible. Afterwards, that's the theory, we'll see in practice!!

3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):

Oh yeah!!! I see a homeopath every 3 months, an acupuncturist once or twice a week. I also go to the physiotherapist and osteopath. And finally, I regularly see 2 magnetizers. For me it's a help, a daily support for everything that can be side effects, we believe it or not but I don't care, I know it doesn't hurt me!!! None promised me healing or wonders!!! Just that they would do their utmost to alleviate the pain as much as possible. I even have my neighbor who comes to massage me and give me relaxation sessions!!!

I adhere to everything that makes me feel good…

But beyond all that, it's really the surroundings that bring the most... Talk, go out, do what you want without ever feeling obliged to do it... You have to learn to become a little selfish, think about yourself first, his well-being!

What do you do to clear your mind/clear your head (before chemo, surgery & co)?

Television, unfortunately mainly…. The doses of morphine always prevent me from concentrating for more than 15 minutes... It's complicated!!! So I still try reading, coloring, and even crochet (I have to move my fingers and feet as much as possible because of the parasthesia). So I became a crochet “addict”!!! Proud of my creations, even if they are ugly (my parasthesias take away my sensations so sometimes I squeeze too much, sometimes not enough, in short, nonsense but... It's me who did it!!! Lool)

What practical “well-being/beauty” tips can you advise us?

1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)

I completely fell for the organic products from “ the Mary family ” for the face!! It makes my skin so soft (chemotherapy gives me major skin problems, dryness and irritated spots among other things… L) and then I hydrate (when I think about it!!) my body with “Nuxe” oil. ”.

I loved your “Face and Body” (here) and “Feet and Hands” (here) kits!!! products, jewelry, boxes, small bags!!! Excellent concept, I spoke about it to the socio-esthetician of the oncology department where I am doing my chemo - who didn't know at all, so that she could disseminate the information to as many men/women as possible. encounter!!

2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):

In “comfortable” jogging mode when I come back from chemo, it can last 2 to 3 days depending on the state of fatigue, I don’t want to make any effort!!!! During a hospitalization of several days, the same, prefer sweatshirt and shorts rather than nightie or satin pajamas!!! Well, I accept it!!

Otherwise, on other days, a little pair of jeans with a tunic or a little sweater (I love the burgundy “Never give up” sweatshirt (here) that I ordered for you!!!!), my favorite Victoria boots or sneakers J

But I always try to be super feminine on chemo days, in front of the doctors at the hospital, like “yes yes I'm sick but otherwise I have a normal life”!!!

On my best days I wear a dress, but I've gained a lot of weight in recent weeks so I'm less comfortable, bordering on self-conscious...

3/ daily (e.g. sport, food & co, meditation, reading, etc.)

I do about 50 minutes of exercise cycling every day, except for those following chemo. Before, when everything was going well I practiced a good hour of sport 2 to 3 times a week, I miss it...

4/ hair problem (eg: did you wear a wig, scarves, hats)

I haven't completely lost my hair but it has thinned out enormously, you can see a lot of my skull, I'm self-conscious, I find it so ugly, hair is really feminine...

Are you concerned about the views of others, were you afraid that their views would change? What are you doing to counter it?

No, not really... It didn't show that I was sick, except for my weight loss following the 2015 operation: rather greedy until then I wore a good 40, and then in 2 months I lost 15kg and suddenly I went to a 34/36… People who didn’t know me believed in an excellent diet!!!! ;) But for a good month I've gained back my weight and it's depressing me...

What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?

A person who knows my health problems and who works night shifts who tells me “ah but you don’t know what fatigue is, whereas I who work night shifts…” no no you’re right, I’m not never tired!!!

Another person, again knowing my health problems, and following my weight loss “you're lucky to have lost so many kilos” yes, I recommend my diet to you, good cancer!!!

There were others but I didn't notice...!

How did your loved ones support you?

They were great, supportive, motivating, close... By their presence, words,... In short, they were great!!! I even got closer to members of my family with whom I didn't necessarily have any more affinity than that!

And what advice could you give to loved ones who accompany a K fighter?

just be there, listening, without suffocating (yes I know it's complicated to find the right place!!!) and above all avoid that look full of pity!!!

Do you find out about K on the internet?

NO!!! Only once, by mistake, did I come across an article, I couldn't sleep at night because it was so negative, basically my vital prognosis was poor, my life expectancy very limited. Never again…

If so, does it make you feel good?

It made me sick, it was the first time I became aware of death.

If so, what would be the useful (internet) links that helped you during K?

I do not have any…

What has the K changed in your life…?

I put a lot of things into perspective, prioritize problems, especially real ones!!! I only surround myself with positive people!! The polluters, the fatalists, the bad guys,… very little for me. I want to laugh, have fun, enjoy and do it with the people I love!

Free field ;)

tell us what you want (which might not be in my questions):

I find your site and its concept very cool and above all it comes out of all those where very depressed and completely discouraged people come to talk… It doesn't suit me, but I am aware that there is something for everyone and for everyone. the world!!!

So thanks…

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Thank you Delphine, you are incredible, we are thinking of you!

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 and 1 photo of yourself so that I can draw you ;) to: interview@mister-k-fighting-kit.com

*Many of you send me your testimonies, thank you for your precious trust, for this same reason, the broadcasts of your interviews will sometimes be broadcast in several months, but know that I keep and transmit absolutely ALL the testimonies that are sent to me , Thank you for understanding.

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NEVER GIVE UP!!

Charlotte