ITW n°29: Fred - K fighter!
First of all, thank you very much for sharing your testimony, men also need tips, support and strength to fight :)
Let's get started:
Who are you ?
First name: Frédéric
Profession: Computer scientist
Where do you live: Issy les Moulineaux
Why do you agree to share your story today?
Mainly to tell what happened to me, to leave a trace, a testimony, to possibly help people in the same situation as me. And I also have to admit that I love being the center of attention!
What are your qualities (in a few words)?
Calm, patient, optimistic, open.
What are your passions (in a few words)?
Sport in general, tennis in particular, writing, reading, travel, discovery.
Can you summarize your (K fighter) story for us ?
On Christmas Eve 2012, I ended up in the emergency room with a bowel obstruction. I was hospitalized and operated on the next day. After a few days of analysis, the verdict was in: the occlusion was caused by a cancerous tumor. Since that day, chemos and surgery sessions have followed one another and it's not over yet.What K (what cancer - grade if you wish / stage ditto):
Colon cancer, grade T4N2M1, stage IV. Liver and lung metastases
When was it discovered? How old were you ?
Discovered in December 2012, I was 36 years old.
Under what circumstances was it discovered?
Inability to have a bowel movement, vomiting, hiccups: head to the emergency room
If you are currently undergoing treatment, or in remission (for how long?)
Still on chemo.
What treatment did you have?
First line: Folfox + Avastin
Second line: Folfiri
Third line: Xeloda
Fourth row: Stivarga
radiotherapy: if you have had it:
Nope, didn't have this pleasure
operations if you have had them (how long you were hospitalized):
December 2012: 15 days in hospital for installation of a digestive stoma. Then colonoscopy, biopsy, MRI to diagnose cancer.
June 2013: 16 days in hospital for hepatectomy (removal of part of the liver)... the gallbladder was removed at the same time.
September 2013: 9 days in hospital for partial colectomy (removal of the colon around the primary tumor)
March 2014: 7 days in hospital for left lung operation (removal of metastatic nodules)
other: uh no, that’s enough thank you...
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: the helmet, your affinities with the nurses,
how did you live the day before, the same day, the days after?
and what were your tips?
So for chemo, there were two phases for me. The first phase corresponds to the start of the treatment: I was impatient to go, I really wanted to knock out the crab as quickly as possible. And the results were encouraging, I responded well to chemo, the tumors and metastases regressed, the operations could be carried out in good conditions and were successful each time. So I was even more motivated, I was really in a virtuous circle. Then after my first lung operation, this momentum was broken a little: I no longer responded so well to chemo and the thoracic surgeon refused to operate on my second lung because the disease was no longer so well controlled that That. And from there, the chemo sessions became more and more of a hassle, I anticipated the side effects and it worried me more and more... I wanted to go less and less and I even hoped in a little corner of my mind that my blood tests would not be good enough to allow chemo... The day before chemo, I started a whole ritual that I did in automatic mode, to empty myself head and not think too much: preparation of my outfit: comfortable with only things that do not open the front: shirt and vest. Yes, at my first chemo session, I was in a t-shirt and I had to take it off so they could stick me in my PAC. So I spent the entire session on my stomach and I didn't like it. Then, prepare my bag: small things to snack on, some reading, the tablet, the bacster, the transport voucher, the vital card, the 100% certificate. Then, booking a conventional taxi to take me to the hospital in the morning and that's it.
The same day, very light breakfast because I knew I wasn't going to keep it very long anyway. Quick shower and the taxi is already waiting. My wife Vanessa has ALWAYS accompanied me and that is priceless. Towards the end of the treatment at the hospital, we found a very nice taxi who lived not far from us: we called him all the time for him to take us and that's something I recommend : do not go through the taxi reservation telephone switchboards and call the driver directly, that changes a lot of things.
At the hospital, the wait begins. We are always called for a specific time but the doctors are always late. So we wait because you always have to see an onco before doing chemo. It is even during this interview that he orders chemo from the hospital pharmacy if everything is ok. We always have a referral onco but it’s not necessarily him we go to see. In any case, they all know our file because everything is decided in college. There are inevitably some nicer than others but in my department, I was rather lucky because they were all quite good, with good contact. Anyway, a little advice I would give: treating the doctors who treat you like incompetent morons who don't understand anything is really not a good idea. There inevitably comes a time when you want to shake them a little after the twentieth time you repeat the same thing but above all, you have to control yourself... getting angry at a doctor cannot be productive.
When chemo is ordered, we go into the treatment room. It's a big room with lots of chairs. And lots of patients too. The first time, it can be shocking because some people are really, really sick. You have to arm yourself, stay focused on yourself. Even though I'm not in great shape, I try to be as cheerful as possible with the nurses. They don't do an easy job. Some patients are terrible with them. I will never understand that.
At the end of the session, return by taxi and straight to bed because I am very tired. Later that night, maybe I'll eat a little something. The next day, return to the hospital for further chemo. It's simpler because there is no waiting, no doctor. It's relatively quick and back home with the baxter. I still sleep a lot after this session, doing everything I can to cope with the nausea.
On the third day, the baxter is finished and a nurse comes to remove it and the chemo is finally over.
For a few days, I'm not very well, tired and nauseous, then it gradually improves but the next session always comes very (too) quickly and it all starts again.
2/ hospital: nurse / doc / caregiver contact
I was hospitalized 4 times. 3 times in a digestive surgery department and once in a thoracic surgery department. The digestive surgery department has become like a second home. I knew everyone and everyone knew me. The great luck I had was that the head of department immediately took me under her wing. She was the one who operated on me the 3 times, she came to see me every day, we talked a lot, she watched over me and took care of the smallest detail. I was clearly lucky. With the nurses and care assistants in the department, it also went very well. The advice I would give is the same as for the chemo room: always be smiling and kind to the medical staff. It will always pay off one day or another. For me it is not only a question of politeness and education but also a question of common sense. When I'm at work, a boring and annoying customer won't really make me want to take good care of them. I would tend to get rid of his request as quickly as possible. Well for nurses, it's the same I think. For me it's a bad calculation in addition to a big lack of know-how.
For my 4th operation, it was in a thoracic surgery department. The operation went well, there were no complications so I didn't have too much time to get attached to the service as I did in digestive surgery. I just remember an old West Indian gentleman called Cupid! He was always cheerful and always laughing. He only worked night shifts and his nocturnal visits were very nice.
During all these hospitalizations, my wife always stayed with me in the room and although it was very difficult for her, it was very comfortable for me!
3/ alternative medicine, if you have done so
I haven't explored this territory much...yet...
I just did several sophrology sessions and used a lot of homeopathy for the side effects of my chemos. I don't know if this is all alternative medicine...
But I would be completely open to going and meeting a Shaman deep in the Peruvian forest if necessary.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
Before each operation that I have had, I have always had a sophrology session, to prepare my body for the operation and accept it. Otherwise, as a general rule, to clear my head, I surf the internet, I read all kinds of articles on everything and anything and it's crazy how time flies when you do nothing like that on a computer...
What practical tips can you advise us?1/ beauty: magic creams / scars & co
Dexeryl cream to properly hydrate the skin. Total sunscreen protection even when there are clouds otherwise you will quickly be marked. For scars, physiotherapy sessions are very useful to prevent adhesions that are too marked and disabling.
2/ look, your favorite look chemo, hospital, every day to feel good
As I have already said, during chemo, you absolutely need clothes that open at the front: shirts, vests, jackets, etc.
3/ daily (sport, food & co)
With my wife, we switched to an almost 100% organic diet. And also no more big cold meats. Sausage is good but what damage can it do... Go easy on red meat too.
For sport, uh, how to put it... next question! Nah, but at the moment, I don't have enough energy for that... I walk when I can and that's it...
Were you concerned about the views of others, were you afraid that their views would change? what did you do to counter it?
No, no problem there. It must be said that my treatment has not changed my appearance much. I didn't lose my hair for example. Otherwise, for those who know I have cancer, I didn't worry too much about their looks either. No one suddenly distanced themselves from me because of this. I think I'm lucky. And good friends.
What are the nugget phrases (that you remember) that someone said to you during K and that you could have avoided?
Hahaha, I love this question. I was once asked "how much time do I have left..."
Otherwise a person looked me straight in the eyes, with a little spiritual and mysterious air and said to me:
“Nothing ever happens by chance anyway…” I still don’t know what she meant.
How did your loved ones support you?
And what advice could you give to loved ones who accompany a K fighter?
My wife Vanessa has been with me since day 1 until today. I know that in the long run it is very tiring and very difficult. I am even more grateful to him. But as it is a very long-term battle, I would advise those accompanying them not to sacrifice themselves completely for the patient. I think you have to continue to do things for yourself, come out of illness to recharge your batteries.
What would be the useful (internet) links that helped you during K?
At the start of the illness, I tried to avoid the internet as much as possible...at least, cancer websites. Whenever I did a little research, I always came across statistics that undermined my morale, so it wasn't worth it.
Now, I am on the doctissimo forum and we find a lot of empathy, support, understanding on this forum.
W hat has K changed in your life…?
I would say almost everything! It would be quicker to say what hasn't been changed I think! This question is interesting but very difficult to answer. She deserves 20 pages of answer for herself, I'm not going to inflict that on the readers!...
Did this ordeal push you to change your life? (with new projects, changes in your life?)
I actually had to change a lot of things. And plans for the future are fundamental in this type of illness, I think. If we no longer have a project, we no longer have the engine to move forward and little by little the disease wins. In the short term, medium term, long term, I have everything we need to keep us busy for the next 50 years!
Free field ;)
tell us what you want (which may not have been in my questions)
Thank you for giving me the floor Charlotte! Your blog is great!
Thank you Fred ;) your testimony is astonishing in its sincerity and fundamental advice!
I very, very strongly invite you to follow Fred on:
If, like Fred, you want to tell us your story, it’s HERE
Lots of nice positive thoughts
See you soon !