ITW n°43: Romain - K fighter.
Today Romain, 31 years old, ex K fighter, in remission from primary non-Hodgkin's lymphoma for 8 years, tells us about his fight full of hope with a certain spirituality and a lot of sincerity, #warrior, thank you!
Let's get started:
Who are you ?
First name: My name is Romain
Age: I am 31 years old
Profession: I am Digital Project Manager
Where do you live: in Paris
Why are you agreeing to share your story today?
Because it will be ten years in 2 months since I got sick! I haven't done it and I've wanted to do it for a long time. Because at the time I had lots of questions and I couldn't find any answers/help/testimonials.
What are your qualities (in a few words)?
I am very psychologically resilient. It’s most definitely due to what I’ve been through. It made me stronger.
What are your passions (in a few words)?
Snowboarding, thrill sports, drawing and nature.
What K (what cancer - grade if you wish / stage ditto):
I had primary non-Hodgkin's lymphoma of the brain.
When was it discovered? How old were you ?
It was discovered when I was 21
Under what circumstances was it discovered?
Because of the symptoms. I had hellish migraines.
If you are currently undergoing treatment, or in remission (for how long?)
I have been in remission for 8 years.
Can you summarize your K fighter story for us?
Following unbearable migraines, my parents took me for a scan. They immediately saw the tumor which was very large.
I started the chemo protocol quickly. It lasted 9 months! I spent 1 week every 5 weeks in the hospital. It was good because at the Salpêtrière hospital, there was a large park, I could walk around; I left my phone number with the nurses and they called me if necessary. The rest of the time, as I had just finished my studies, I did an internship at the same time, because I didn't let it get me down, I created a company with a friend. A small publishing SARL (since disappeared). And since I wasn't sure what I wanted to do, I took the exams to enter a business school.
When it was time to take the orals, I had a relapse.
So I did 2 sessions that were harder than the previous ones. I slept during the treatments.
Then I finished with 5 weeks in a sterile room. It was difficult at the time. But it goes by very quickly. Really fast. And as soon as we leave, we forget in a minute.
I returned 15 days later to the school I had chosen.
What treatment did you have?
I started my treatment with a 9 month protocol.
1 week in hospital with 3 days of chemo and 4 or 5 days of elimination and 4 weeks at home (in training).
To eliminate I had to drink a lot.
I then had a relapse. So I went to a sterile room, after two more aggressive chemo sessions, for 5 weeks.
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 ;))?
To get rid of the chemo I had to drink a lot. He made me drink Saint-Yorre, very rich in bicarbonate (antacid). I drank so much of it that by the end the taste was unbearable. I vomited everything. So I took the bicarbonate tablet which gave me a lot of relief.
Afterwards I had a “good” experience with the treatment because I thought I would stay there. For me it was an opportunity, not a torture.
How did you live the day before, the day itself, the days after chemo?
and what were your tips?
During the first chemo treatments, which were not too aggressive, I didn't have too much apprehension.
The same day, quite a few friends came to see me in the hospital. I took my perf and went for a walk in the hospital grounds. We even had a big picnic one day.
The second chemo was not the same story. In fact it was so powerful that I fell asleep.
I took a lot of tablets. So as not to have to think about it, my parents bought me a pillbox. It looks a bit "old" but in the end we don't care and it's very practical. No need to think about taking your medication.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
After a while you can no longer see him in the hospital. The idea for me was to stay in my room for the minimum amount of time. I was well enough to be able to go out.
I left my phone number with the nurses and went to the cafeteria or to the park when the weather was nice.
The smell was also a problem for me. Each time I bought a huge box of ultra-minty chewing gum to have a pleasant smell that was stronger than that of the hospital.
To pass the time I also took as many series as possible and my computer. At the time there was no wifi. Today I think that with the internet distractions are easier.
For the sterile room, I knew it was going to be a bit complicated and difficult. So I took certain things from home to personalize my room a little to feel a little less in a cage. It works well. A photo on the bedside table and a few objects that can easily be sterilized. I also took some clothes so I wouldn't be in pajamas all day. At first it's no use, we're too tired to do anything. But towards the end when you can't take it anymore, it's very useful. But it goes by really quickly.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
I tried an herbal method. As the doctors were ok I told myself that if it didn't cure me it could counter certain side effects. Anyway, given the number of tablets I was taking it didn't make much difference, one more or less. At best it was positive at worst it didn't do anything so Go!
The thing is, it was my mother who gave it to me. It's very psychological but it doesn't matter. I felt a bit like my mother was helping me heal!
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
I walked around, received people (see above).
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
For me who have very dry hands, the #1 essential was the Neutrogena hand cream.
Then I tried to apply protective nail polish but it didn't help in my case. So I put little bandages on my fingertips! I also put Cicalfate on my various scars, massaging well.
Above all, I tried as much as possible to eat at the cafeteria because the food is much better. It gives strength for the future.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
I tried the wig but it was a bit ridiculous FOR A MEN. So as I hadn't lost too much of my eyebrows I paid the price and bought myself a beautiful hat!
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
Cafeteria food or family food when they visit…
4/ hair problem (eg: did you wear a wig, scarves, hats)
A beautiful hat. For men it's easier I think. See above.
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
Who isn't afraid of that? Especially since I arrived egghead late for the start of classes at business school. The lamb among the wolves!
At the time it’s not very cool but “when life is more difficult it’s an opportunity to become stronger!” »
Do not consider it. Do not consider it. Do not consider it.
We do not care ! It's easy to say but ultimately it's not that difficult to do. True friends, their looks don't change. I then parted ways with a few friends and that’s great! Too bad for them. You have to continue living and make plans and stick to them! To have something to see further than the somewhat gloomy present.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
I went back to school for a week at business school. I started making friends and then I left for 5 weeks. Coming back without hair, a student said to me “are you new?” ". I just responded. “No, I just have more hair.”
How did your loved ones support you?
In the top ! Everyone helped me. Lots of presence and administration so that I can concentrate on the essentials!
And what advice could you give to loved ones who accompany a K fighter?
As was also my case, I would say that you need a lot of presence. Patience. Find distractions to take the person out of their daily life. Activities with or without friends, outside or not. In short, find something to forget. Bring parallel remedies or positive testimonials like this site! And make plans to see further.
Do you find out about K on the internet?
No more need.
What has the K changed in your life...?
(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)
Oh yeah. My outlook on life is now much less standard.
Above all, I am much less stressed about the important things in life.
Free field ;)
tell us what you want (which might not be in my questions):
The main and most important thing I would like to say is that my cancer can be cured with medication but cannot be fought with it. The fight is only psychological. I kept telling myself that this was all temporary. I was always projecting myself into a more pleasant future. A future where I could go out for drinks and eat non-sterile food. Telling myself that day after day I was becoming stronger than what looked at me askance.
In short, today I am married and very happy.
Thank you Romain for this very beautiful testimony!
Lots of beautiful positive thoughts to everyone!!
@ very quickly