A pretty boring week

Monday, October 9th to Sunday, October 16th

After a nice weekend visiting around with my friend Barbara, it’s back to the house.
And this time for good. Or I mean for a full week.

I’m in aplasia. Meaning my immune system doesn’t work anymore as I got no more white cells in my body (or very little). All dead by the chemo poison.

Outside, it’s rainy and windy. Yes, even here in the South of France where it is normally always warm and shiny. And like EVERYBODY is sick. Of course, thank you FLU season. Anyway, it’s not like I was going to go out if not. My parents just strictly forbidden me to go out of the house this week. At least, it’s clear!

Honestly, I don’t even know what I really did this week. A mix of sleeping, TV, depression, stare at the wall, listen to music, try to study for my midterms without really trying too much and talk to friends online to maintain a virtual social life.

It was not an easy week. Lots of wondering and doubts. More I think, and less I know what I want. In life, for work, in everything. In my head, it’s pretty foggy. There is this shadow of constant uncertainty. When I study, it’s the only moment where my brain is thinking toward a unique direction, and that makes me feel better.

But I can’t really get motivated to study, because I feel like I’m never gonna succeed this year. I just came back from an appointment with the radiotherapy doctor to plan the 3 weeks of radiotherapy. I placed them between the end of my classes of the Fall semester (end of November) and my final week (Mid-End December). That makes me miss two days of classes where I have exams planned. So it sucks. And anyway, with the last blood work, I fear that next chemo is going to be postpone of a few days so I get out of aplasia. The problem is that this will make my calendar management go all wrong and miss both my midterms AND my finals. So why would I even bother study if I’m not sure I can make it to the exams ?

Normally, I’m super positive but this week, I’m down to the socks. Well at least they are cosy, but I’m not very proud of feeling like this. I even start wondering if I shouldn’t get to talk to the psy again. Talk about stuff. About my future. About what I’m expected to do when I’m cured.
My career was pretty straight forward before that. I knew where I wanted to go. Now, I could see myself quit everything and go to Africa, in flip flops, reading some French literature book of JP Sartre, trying to help build schools and infrastructures. But is it really a goal in life ? Yes ? No ? I don’t know.

So yes, I guess it’s a new opus of anger. Because I lost all my eye marks. I feel like I have 7 years old all over again. Not being able to decide or know what to do without someone telling me. I need to re-learn all the process. At 24, when everybody thinks you’re finally turning into a responsible and promising adult ready to take on his life and work duties.

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I don’t know how to integrate this society. Or rather to reintegrate it. Because I was pretty well off. Before this happened. I talk about it with a friend that goes through the same hardship. I tell her that for me, people say “Be strong! You’ll get even stronger and better after beating this! What doesn’t kill us make us stronger!” 

But I don’t really think it’s 100% true. I’d say it makes us stronger as it makes us weaker.

Because Yes, of course we live every minute doing the best of what we can to have no regret and enjoy. Everything feels SO GOOD. You wonder if you even ever really lived before. We are more prepared to face adversity and we accept our destiny. That we have no control over the flow of our life and life of others. But that it will be OK. Somehow. You just have to trust it.

The problem is that vision of life is incompatible with the society and people working full-time jobs, trying to earn a living. They are not trying to make the most of their time alive, all the time. No, they are trying to raise their kids, and get money to buy whatever they need or want.

At these people that you love and see getting tired at working hours and hours, you want to yell
Stop it! Go do what you really want! Imagine is that day is your last day! Is that really the way you want to spend it ? Would you have no regrets at all ?”

And this injustice of people that don’t allow themselves to fully live their life, I find it with people that AREN’T allowed to live their life. Because of war, of sickness, of poverty, of so many bad things really. Even entire animal and vegetal species are disappearing everyday because of the hyper colonisation of the humans.

That’s the kind of things I’m thinking about when I stare at the wall. All those things I have no idea where to start to help, improve or stop. And that make me feel drained. The how and the why. I lost my foundations. I’m in free fall. I just hope I didn’t lost my mind!
Other people tell me “I hope one day, this will look like an old bad dream. A far far souvenir.”

So, if going through this makes you stronger and better, why would other people wish that you forget about it ? Maybe it’s that the hardest part. Stay as you were ! Not change! So, should I forget all about it ?

 

Third round of chemo

Thursday, September 22nd

The night was short ! I arrived in Marseille around midnight and I’m already awake at 6.30 in the morning before heading for my next the chemo.

14632664_10209650285347860_720810437_oFirst, I have to see the doctor.

This time, I see the intern. She’s young and very listening. She looks at my blood results and my white cells are pretty low.

Not the aplasia yet, but it is clear that I have some trouble to get back to the “acceptable” level after the chemo. And it keeps getting lower and lower. At some point, it’s gonna be an issue!

She hesitates to prescribe me another additional day of Granocyte shot (4 days instead of 3). I kind of make a face and she says “Let’s see next time then”.

She prescribes me the additional antibiotics in case I have a fever during aplasia (I already take antibiotics on a daily basis but those one are very effective ones). It is important to have them on me, especially if this happens in Paris so I can take action fast. In case the super antibiotics don’t make effect on the fever, I need to go back to the hospital.

Then, I wait for chemo. This time, it’s pretty fast.

I got assigned a shared room, where 3 guys, way way older, are getting their chemo. When they see me walking in, they stare at me in a weird way.

I never see other young patients. I know I’m not the only one, but we are never at the hospital in the same time. Also, teens under 18yo are in pediatric services. So I’m constantly surrounded by people three times my age.

The worse is the way they look at me. Kind of “pitying me” and wondering why am I here at my age, having to face all that.

Well, anyway I don’t think there is a right age to get cancer. At least I have some energy to go through treatment. Even though some other stuff are less cool when you are young. The future career, the risks of secondary cancers (because yes, you do expect to live at least another 30 years) and risk of sterility.

There is even a discrimination from banks and insurances for pricing. Some won’t even lend money at all.

In France, you are spared from declaring your past history of cancer after 15 years since the last treatment. Seriously 15 years ? I would be like 40 years old. Of course I would need money in the meantime to build my life and maybe create a company even, who knows ? It’s in talk to be reduce to 5 or 10 years for the “good” cancers, meaning the one you usually survive but not totally done yet and still bullshit!

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Saturday, September 24th

I go to a lymphoma conference. I’m still very tired from the treatment but want to get some info and updates about the disease. There is no young patients. My dad calls a guy “the young one”, but he’s like already 40.
However, it was quite funny.
Patients asked questions and some were quite comical. Like a woman of like 75-80 yo asking why her articulations still hurt years after chemo.. or another patient talking about his weird foot syndrome in front of the whole audience.