ITW n°102: Sylvain - ex K fighter (lymphoma).

Hello,

men have their say on Mister K, today Sylvain, 24 years old, gives us his fight with great sincerity, on "B lymphoma of the large cells of the mediastinum (stage IV)" fought in 2014, now in remission since March 2015, a great piece of news to read, to breathe strength into those who are fighting.

With great kindness he recognizes the benefit of sharing his ordeal because “it is by starting with yourself that you can listen to others”.

Great discovery.

Let's get started:

Who are you ?

First name: Sylvain

Age: 24 years old

Profession: HR

Where do you live: Paris region

Why do you agree to share your story today?

I have always been very open about my diagnosis and my illness, and this has freed up speech around me. Many people have come to tell me about the illness of their loved one (not always very appropriate…). There are many things to tell about Mr. K, and it is by starting with yourself that you can listen to others.

What are your qualities (in a few words)?

Humor, even if some of my loved ones or my former dates would tell you otherwise. But it is always possible to find a little moment to smile.

What are your passions (in a few words)?

A great fan of philosophy, I have been practicing climbing since the end of treatment.

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

Large cell B lymphoma of the mediastinum (stage IV)

When was it discovered? How old were you ?

It was discovered in September 2014, I was 23 years old.

Under what circumstances was it discovered?

I'll try to do it quickly. In a nutshell, I developed tendinitis in my shoulder in August 2014 (my partner at the time was returning from a stay abroad, and I had started doing a little sport…). This never came through, and when I needed to get my codeine prescription renewed, I had to find another GP. I was discovered to have a heart murmur and had to have an ultrasound, which was the first discovery of the tumor. The cardiologist, whom I knew very little, insisted on following the x-rays, scans and biopsies, which were done. Without it, the tumor would have been discovered much later.

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

In remission since March 2015.

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

I don't think this is my story. It is above all a family story. My aunt died of leukemia when I was 17, while living in Australia. A few weeks later, the high school I attended organized a “ Share for cure ” event: I had my ponytail shaved on a stage in front of my entire school, with the donations going directly to the fight against leukemia. It was the first time I found myself with a completely bare head.

When the diagnosis came, I learned that my other aunt had lymphoma. She died from it a few months ago. You could say that the K is a family trait with us.

When it was time to start treatment, I was offered an “alternative” treatment, much lighter (lymphoma is still treated with much more aggressive chemotherapy than necessary, according to my doctor), but which involved four punctures. lumbar for methodological studies. I got scared and refused him. I often regret it. Not because I could have benefited from less severe treatment, but because I did not participate in the progress of the treatments, and because I only thought about my comfort. Maybe that's also why I'm trying to give back to the K Fighters today.

What treatment did you have?

chemo:

I never wanted to remember the name of the treatment, just poorly put together letters that smelled extremely strong. It was a way of not giving him an identity and distancing himself from the treatment.

I did 4 months of chemotherapy, with treatment one week per month, and 2 months of chemotherapy in a day hospital (one day per week).

radiotherapy:

0

operation:

0

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

1/ chemo:

Green tea. After a month, I was advised to drink green tea to limit the nausea which was very strong (I have always had a sensitive stomach), and in addition to being a good tea and soothe nausea, it allows you to evacuate quickly and well. I always have a very strong feeling of calm when I drink it.

Forget hospital food. I was only eating high-protein creams after a while – because I couldn't approach the food the hospital served me. And as this covered a large part of my nutritional needs, I was able to indulge myself with an indecent consumption of chips and sausages (possible to have a little when I wanted to take my mind off things, but that didn't force me to eat “one dish”).

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

and what were your tips?

I bought myself a portable game console that I only played in the hospital. I knew that going to the hospital meant that I would be able to advance in these games that I enjoyed, and that it was something that was only possible there. After the second month, it was possible to have leave between the start of treatment (Friday) and the end of follow-up (Monday), so I was able to go on outings with my family. And it was the best way to remind myself that there was a world outside of my room and my hospital room.

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

The nurses were always very there for me – I was well below the average age in our department, and I had fewer problems than many other patients (generalized cancers, chronic illnesses, etc.). What always helped a lot was talking about their lives outside the hospital. Being an HR person by training, I always tend to turn daily conversations into interviews. Why did you become a nurse? Why this service? Why this hospital? And this often de-dramatizes the care. They chose a hospital close to home, to watch their children grow up. They chose this hospital because it has a special atmosphere, etc. This transforms the hospital into a place of life, a place of passion, a place of accomplishment rather than a place of death.

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

I'm not sure if napping counts as alternative medicine. I let myself fall into lethargy, without really looking for other solutions.

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

I played a lot of video games (I worked for a French publisher at the time), it reminded me of the teams I worked with, and took my mind off things. I was afraid to go out, I was afraid to watch films, I read very little at the time – everything brought me back to my treatment.

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

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

Change your habits. Buy a new perfume, so as not to associate the smell with the treatment. Buy new care products – toothpaste, shower gel, deodorant, etc. that are less aggressive so that taking care of yourself remains a pleasure.

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

As the chemotherapy was injected directly into my arms, I was not able to move them throughout the treatment (even after the PAC was placed), so I had great difficulty getting dressed and I was very quickly stopped paying attention to my appearance.

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

While I practiced meditation before treatment, it was almost impossible for me not to just fall asleep if I closed my eyes for too long.

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

So this was the second time in my life where I had my head shaved. I have always worn it with pleasure. I was advised to shave before the hair starts to fall out - and it's true that this allows you to feel in control of your decision (and not to lie too much to yourself about the fact that you're going to keep your hair ).

Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?

I was always very direct on the subject – everyone knew I had cancer, was free to come and talk to me about it, and that helped prevent people from worrying or changing their outlook too much. Me. Rather than feeling like I was dying in a hospital room, I always wanted to be able to communicate and show that I was okay, that I was cared for, and that I was just sick.

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

(After the diagnosis is announced):

• It’s funny, my father had the same cancer!
• Your father died?
• Ah but he died of his alcoholism afterwards eh, not of the cancer itself

How did your loved ones support you?

My partner at the time did everything for me – she managed the emotional aspect with my family, the logistical aspect (she rearranged the apartment during my first hospitalization) – she took care of me during all the crises and difficult times. She washed me when I didn't wash anymore... I don't think I would have made it without her, even though it was extremely hard for her.

I had friends who were there to keep me company, or support me physically when I had to travel a few times.

My mother didn't know how to handle the situation – given the death of her sister a few years earlier. She was there, but often to reassure herself and see that I was doing pretty well (I think).

Do you find out about K on the internet?

Never. I asked all my questions directly to my doctor, or to my loved ones. More and more people are affected by cancer, and it's easy to find tips around you. This remains the biggest joke on the Internet, if we type three harmless symptoms that the first site that will come out announces cancer, and for once it was true, I didn't want to get stuck on sites internet which I knew nothing about.

What has the K changed in your life...?

After the treatment, I especially had a feeling of loss (having lost time, energy, my partner, that my body had betrayed me), and I urgently needed to find everything again. I was in a constant sense of urgency for a very long time; until the day I tried to do everything at the same time (work, home improvement, sport, friends, new love affair, etc.) – and it failed.

Since then, I have refocused, on a new job (with stronger values), on a new environment (with people who did not always know me during treatment), with a new philosophy (taking the time to make things that have meaning).

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Thank you Sylvain, for this very valuable and inspiring testimony.

You can leave comments below.

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NEVER GIVE UP!!

Charlotte