Radiotherapy isn’t at all like chemo! No drugs nor IV! It’s radiation! Not nuclear but particle accelerator sent directly where the tumors were located! It burns the cell by dammaging its DNA and, in theory, only sane cells can repair themselves!
However, this increase risks for secondary cancer in the the region where the radiation happen! For me, since I’m a girl, it could be breast cancer! The doctor told me she will discuss it with me more in details at the end of the treatment in case my breasts received a little radiation!
Secondary effects according to her are like discomfort to swallow, skin burns and fatigue mostly!
I will not have heart radiation and only a very little radiation on my lungs!
The only really annoying thing is that the appointments are EVERYDAY ! And that I take like 1h30 roundtrip house – hospital !
15 appointments in 3 weeks for a total dose of 30Gy.
To avoid doing tattoos on my skin for radiation targets, they created a chest mold in resina ! When I get there, I lie on a table, they put it on me, it’s really tight, and then they fix the chest mold to the table so I litterally can’t move even one millimiter away!
the wig collection
My boyfriend finally came, after 3 long months, it wasn’t really easy the distance and going through cancer and treatment for me like for him! We talked about it and I still was really happy to see him, even these 5 little days! We went to Nice and Barcelona ! I had a really great time and I hope to visit him as soon as I finish treatment ! I’m thankful he was here for me during treatment, even if he wasn’t really comfortable talking about the medical stuff! I was strong because I had him on my side too!
My hair that felt aren’t growing yet, but its normal, it should grow pretty soon! the one that stayed grew really weird and all thin and weak so I shaved everything again so they all can grow together now!
I’m finally back after a month leave from the blog. I didn’t want to abandon it like I did, nor the writing and sharing. I guess these last few weeks have been pretty rough. I always thought that the hardest part in having cancer and going through treatment would be the physical side effects and the uncertainty of if you gonna end up surviving or not. But it’s actually far from being the only challenge. And it is almost the “easy” part as you don’t have to make much decisions, you are being told what to do… After-cancer is a mental battle. And that’s what I have been struggling with lately.
According to my psy, I suffer like most of other cancer patients of symptoms like PTSD. I know that sounds pretty funny as I did not got in war zones as veterans. But I kinda went tho, inside my head.
You see, for the past months, I have been living day by day, not making much plan, just to go through each day of treatment and try to make it as best as I can. I didn’t care at all of what would come after that, because I was not sure I would have the chance to be able to make futur plans too far…
When my oncologist told me that my scan was really good and that, if the remission is confirm on my final TEP scan post radiotherapy, which will be on January 19th, I will be finally FREE, I started to get scared. That I wouldn’t be able to go back to normal life.
It’s like the who I was, young, going out with friends, thinking about long term career goals and travels and the who I am during treatment, avoiding bacterias, staying in, resting, trying to not push my body too hard, no smoking, no drinking, no risks are battling. One is telling the other that she is doing silly stuffs!
So at what point should I come back to the person I was before? Should I even ? Could I ? There’s no real answer according to the psy, only time is needed. I need time to trust my body who once betrayed me. So I can live without all those fears. But how could I really when the oncologist tells you that you will still be monitored at the end of the treatment because relapse occurs. In my case fortunately, relapse risk isn’t very high, but still slightly above 10%. This is not including damage from a tough treatment on the heart, lungs and rest of the organs nor the risk of secondary cancers, increased by the same treatment that save me from dying from the first!
I guess I do need time. Day by day, when feeling better and better, I’ll learn how to trust life again! I’ll learn how to project myself in the future, more and more far everyday.
Don’t get it wrong ! I love not being worry about the day tomorrow, like i could disappear in the time between that. But it is just not really applicable with the life going on. And also I do believe that life consists in wanting stuffs! Being indifferent is like being dead.
Wednesday, November 2nd,
It was my 6th and last chemo !
I went with my parents ! We did an apéro at the hospital with non-alcoholic beers and snacks! And took videos! Maybe I’ll do a little surprise and share it soon !
But white cells were OK but not my red cells! I was in anemia! And close to do a perfusion of blood so it can get back to an OK level! The thing is that since it was my last chemo, it wasn’t critical so I didn’t not do it! But the round because of the anemia went rough!
Red cells are transporting the oxygen and are necessary to be able to breathe, live and move correctly!
I basically spent the entire week in a bed, couldn’t stand up more than few minutes because I was really weak. My parents were trying to feed me some red meat for the iron to help but it was so hard to even get hungry and digest something that difficult!
Hopefully, the shots of Granocyte came at Day 6 to help boost my system and the weekend of November 13th, I was back on my feet!
Sunday, November 13th
I headed to Paris for 10 days of class and exams. Since I wasn’t able to study the day before, I had to catch up a lot of materials in a really limited time! The weekend after, I went out even though I was tired, but I was just really glad to have the occasion to! I drink a bit of alcohol, nothing strong really but I did it! An additional step back to normal life!
Wednesday, November 22nd
After taking my last exam, I went back to get my stuff and left to Marseille! Already!
I cried a little! I was scared to start treatment again after feeling much much better lately and starting to enjoy my life again! Last chemo was already 20 days ago!
Tomorrow, Thursday, November 24th, I start radiotherapy !
Thursday, October 20th, it’s time for my 5th chemo.
I bought some grey, black and blue masks instead of the regular hospital one. Not that it makes it look better but at least I have a feeling of trying to be original.
I’m super happy because my white cells went up and I’m not in aplasia anymore. The doctor gave me the authorization to do the chemo instead of postponing it like it might have happen. So Yes, I’m going to Paris next sunday for sure!
Thanks to the injections of Granocyte that worked better this time! Last friday, I felt the pain from it so bad in my hips and pelvis. I was walking like a 90 years old grand ma, rounding my back.
By the way, I learn how to do the shots myself !
Normally, I do them in my belly but when I took the video, my belly was hurting so I did it in my thigh.
After this chemo, I went home to sleep for two days straight like usual.
Sunday, October 23rd
My grandma arrived from Lebanon this morning for few weeks. I stay with her a bit before taking my train to Paris.
It’s pretty funny because I don’t think she really realized that she can’t give me a kiss or hug and so she went into full mode hugging and kissing me everywhere on my cheeks. And I could see my mom turning pale, scared that I get some bad bacterias or virus from this exchange. Hopefully, I’m not in aplasia anymore.
Once in Paris, I go find Paola. I bought her (and myself) a ticket for The Swan Lake on Ice for her birthday. It was really awesome to watch and made me relax and appreciate the beauty of a ballet on ice. Then we went to have diner before going to bed.
Monday, October 24th
I have two exams at school today. Which I did not really prepare since I was mostly sleeping these past 4 days after chemo. Also, it was quite hard to focus and study in advance the week before that because I wasn’t even sure they were gonna allow me to do chemo on time because of the aplasia.But I don’t think I did poorly so good!
I have another exam early tuesday morning but I started to feel pain in my belly. I ended up not going that day to rest. I feel that this time, chemo really took a big hit on me and I’m just SO TIRED and hurting.
Wednesday, October 26th
I still feel tired but I try to go to a programmation exam (computer sciences). The teacher releases the exam material and I start reading the questions.
I know what they are asking and I know that I know what to answer but I just can’t connect to my brain to answer. It’s like the door to my memories is locked and I don’t have the key. I just hate the feeling and I start panicking.
I’m not the type of student to get poor grades. I don’t think I’ve ever had really really poor grades before… My heartbeat starts going crazy and I start feeling really weak, like close to pass out. I know I should tell the teacher and reschedule the exam. Everybody would be understanding in my situation but I just don’t know how to quit. I never do ! So I stay !
I cover my eyes with my hands and start breathing slowly to decrease my tachycardia. After 10 minutes of pause, I go back to the exam. I’m still not feeling so well and remembering much but I just try to do my max. Never mind. I won’t get a good grade but at least I did it. I went to that exam while going under chemo treatment and I tried.
Memory problems are common under chemo. It’s called “CHEMO BRAIN” and it sucks! It does! It feels like I miss half of my brain and I often forgot things. I just hope I will regain my full cognitive functions once my treatments are over but I’m kinda scared I won’t.
I still can do most of the things but I used to have like a GREAT memory. And now, I can’t find my glasses or my phone or remember if I took my meds, every day.
Once home, I just start crying. I feel so exhausted and I just hated what I’ve put myself through today. I know anxiety is not good on my body right now which already has to deal with hardcore treatments. And I was so scared to go through this giant black hole of a brain.
I talk with my cancer pals, Soizic and Liza, who tells me that I’ve done already so much and that I should not hate on myself for having some difficulties, that everybody does and that I’m brave to try anyway. And I go to sleep.
Thursday and Friday, October 27-28th
I finish my classes and my last exam and I’m finally on weekend ! My friend Sabrina joins me and we go shopping for Halloween at some Goodwill and vintage stores.
At night, I have a Boston reunion night with my Boston mates! I’m pretty excited to see them. They witnessed what happened to me in live there but I didn’t see most of them yet since we came back to France!
Saturday, October 29th
This week, I told Mika “Let’s celebrate Halloween” and it turns out he and his roomate, Antoine, are down to host the party. YAY!
I didn’t see much people, especially during aplasia, so now that I can, I’m pretty psych by celebrating and doing social activities when I can!
I choose to do Furiosa, in the Mad Max movie. I did everything by myself and for less than 20 bucks! Pretty proud!
Sunday, October 30th
I’m already back to Marseille. Next chemo is wednesday, November 2nd. I’m not very excited but it’s my LAST one!! I kind of want to do something funny for the occasion but I’m not sure what! If you have any suggestion, you’re welcome !!
It was the moment I was waiting for since days with my parents. THE PET scan to see if chemo is working on me alright.
My doc already told me before that there is a great probability it is. And if not, there are other chemos and other treatments to try. So I tried to keep an optimistic mindset !
Once lying in the scanner, after an hour of IV perfusion with radioactive element, the assistant tells me
“I’m gonna inject the iodine now. It’s going to feel like it burns. Don’t worry, it’s normal. Try to breath peacefully and it will be soon over! Good Luck!”
I’m like, what is he talking about ? I never got Iodine during my previous PET scan. And it started to burn. From my oesophagus to my bladder. And I wanted to pee so bad! Omg. Really not pleasant. Hopefully, it only lasted like 3 minutes. WOW
When I got out, someone tells me the doctor is going to see me for the results. My dad comes with me. I arrive in the little room where the doc is screening all the PET scans and writing the results down. There’s one screen showing a scan with a patient full of cancerous lymph nodes at upper level of the body. More than I had when I begin even. I’m like … Huh
“Hey Ms Sally, so I reviewed your PET scan and I don’t see any evidence that the cancer is left! Which means that once your treatment is over, you are done. Congrats!”
The Scan at the top is the recent one. The one below is from last July. And on the left at the bottow , the conclusion saying there is no detection of the cancer activity.
Of course, I start automatically shedding tears, very moved. My dad too! I smile and thank the doctor. Then my dad call my mum and the rest of the family. I hear them laugh of joy and it warms my heart. I barely can talk back to them as I’m still under a great deal of emotion. It feels AMAZING to know that I’m almost done spending my whole life at the hospital or sleeping because of treatments. And that I’m going to live. Not just months or few years. Just live.
My dad propose to celebrate at the restaurant. So we go and I get a delicious goat cheese and honey pizza. YUM
SO WHAT’S NOW ?
Well, I still have 2 chemo rounds left and 3 weeks of radiotherapy. To secure the remission.
As you might already know, we don’t get instantly cured of cancer. We enter remission. Which means that the scanners and medical screenings can’t discern evidence of cancer. Which is of course amazing! However, active or latent cancer cells can subsist in the body (and in my case, in my lymphatic system) and be undetectable. This is why I have to finish treatment to give me the best chance of complete remission without futur relapse.
Radiotherapy especially is going to irradiate little zones where I had cancerous lymph nodes and break the DNA of the cells around. Only sane cells can repair themselves and survive. The bad ones die.
So that’s the super news! I will finish treatments on the last day of radiotherapy, which is December 16th. Right in time for my 25th birthday and the year end celebrations !!
I feel so relieve to see the light at the end of the tunnel! And it gives me the motivation I needed after this past week to finish the battle! Around 8 weeks after the last treatment (End of January – Beginning of February), I will have the final PET scan to confirm my official complete remission and to demonstrate that the cancer is not coming back right when the treatment stopped.
Then, I will have scans and doc appointments every 3-4 months and then 6 months during 5 years. After 5 years of clean scan, you are considered totally cured since risks of relapse for Hodgkin’s lymphoma after 5 years of remission are very rare or even inexistant!
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.
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 ?
I see my best friend from middle school and first year of high school. We lived a lot of episodes of laughters and young teenager chores. Now she lives in Aix-en-Provence. Really close by! We jump on the opportunity to see each other and go shopping. I enjoy to the max knowing that tomorrow I have chemo.
Thursday, October 6th
Time to fight. Round 4.
I have an appointment with a new doctor. I had 4 chemos and 4 doctors. One different each time. It’s a bit confusing sometimes!
She tells me “Alright. I see here that your white cells are really really low. You are at the edge of aplasia. And you are suppose to do a chemo, which will kill the cells you have left. I don’t understand you didn’t do the Granocyte shots ?
-Yes, I did ! During three days.
-Well, it looks like it’s not going to be enough. I sign off for the chemo this time because I see that your Monocytes are up. Which are basically the same kind of immune cells but are produced faster. So it gives me the indication that they are going up soon. And you will do four days of injections. Do you do them by yourself ?
-No, my dad or a nurse do them.
-Well.. There’s really just in France where easy injections like this are covered by the social security. Don’t you want to do them yourself and help reduce silly health expenses ?
-Huh.. Yeah, sure. If someone can teach me…”
Alright, this doc was a bit cold, not like the others. My dad didn’t like her much to be honest. For me, it’s ok. As long as I get treated, it’s fine!
After an eternity of waiting, it’s finally my turn! Chemo perfusion starts and I have this really nasty metal taste other patients were talking about that I didn’t felt the first two chemo rounds. Well now, I just can’t forget the taste and it makes me nauseous. So I took plenty of candy to fight it with sugar and sweets! Yummy
At the end of the chemo, I am SO tired. I can barely walk. I feel super weak. I finally somehow succeed to get into the car, with my dad helping me.
Once inside, I start singing a bit over the songs of the radio. My dad, to make me happy, turn up the volume and realize that I actually felt asleep in the middle of a verse. He told me that he laughed a little bit.
Friday, October 7th
I finally get out of my post-chemo coma of the two first days. My friend, Barbara, is coming from Paris to spend the weekend with me. She arrives around midnight. There’s a play at the hospital tonight about cancer, and even though I’m so toasted, I really want to go check it out. I feel it’s gonna be a good surprise! We arrive 10 min late at the play.
It talks about 3 friends, 3 women young and long-time friends. All having a very different personality. Well, one of them get diagnosed with cancer.
It’s just a beautiful script and really REAL. Not like a Hollywood superproduction. Like what you really go through with your entourage when you got diagnosed. Sarcastic humor, scares and reconsideration of what you do and who you are.
It was really touching and I recognized many moments where I went myself and laughed and cried about it ! It was just too hard to keep myself from feeling and living again those moments! I can tell it was the same for my dad too ! (Probably one of the script writer got diagnosed with cancer herself, which gave her inspiration and real experience to write this play, so it sounds fair)
The play is called Cellule de Crise.
And here a pic of me with the actresses!
I arrive in Marseille from Montélimar. I spend the weekend with my parents and rest a lot. A LOT.
Monday, I feel down a bit. First, I got a cold. My parents are a bit concerned and I’m afraid if it gets worse, they will blame it on Paris while I paid attention. Not very careful, but a little bit.
Also, it’s pretty hard to be back at home in my “cancer bubble” after a week of independence and classes. Feeling my age.
I decide to go study from the library the next day so at least, I breath some fresh air.
Study for what ? Well, my 7 midterms which will be waiting for me the next time I go to Paris. Damn!
Normally, I’m suppose to go back to class on Monday, October 17th.
For two weeks. But I will have to miss the first of those two weeks because of a scan and another chemo. Miss 42 hours of class… Feels a bit stressed already writing that down.
I’m not even sure what stresses me the most?
The scan or the exams ? Which scan ? Well, THE ONE which determines if the chemo treatment is working or not…
It would take the doctor a bad scan and 5 minutes to announce me I’m not nearly close to be done. Starting from the beginning. Again. Let’s not hope for it …
At the library, I borrowed a very cool book.
“Who Am I and if so, how many ?” by Richard David Precht.
Young German philosoph.
I do love philosophy but I have to admit that rare are the teachers that are able to capture our attention and stimulate our minds to get us into the complex world of philosophy. Most of the times, they keep studying the same old theories in a very scholar way …
But wait, this book is EXACTLY the opposite!
The Author is SO smart and talented! And he is able to re-use those old philosophical concepts and theories and put them into perspective with the technology and sciences from today. Amazing!
I love Nietzsche and his theory of the human as a smart animal! (Or maybe also because he was so bright in his sickness and disease). Here, the author illustrates his theory by the anatomic discoveries of the evolution of the brain from the monkeys to the human, to raise some questions if yes or no we have limits of our consciousness, knowledge capacity and way of thinking.
Anyway, if you like thinking, learning and if you are curious, it’s a great read!
I arrive pretty late at the train station in Paris. Paola come get me and we go eat at a restaurant around. Then I go to Mika’s apartment where I stay. Tomorrow, I have class at 8AM. Like the all the following days (except wednesday).
Monday, I wake up and head to class for 8AM-7PM non stop. There’s even a worse day than that! Thursday, 8AM- 8.30PM! Wow
The challenging part is not only to make it as a long day of class but also to run during lunch break to get my Granocyte injection at a nurse office, next to the school.
After class on Monday, I’m very tired. But I’m pretty proud to have gotten through the day.
Tuesday, I have to start the Granocyte shot series and I’m afraid of feeling painful during class. Finally, it’s hurting but it would be hurting at my house too so I try to ignore the pain and listen to the teacher. I have a bad moment of intense fatigue but it gets better few hours after.
I go home after class to rest and then decide to join some friends at a bar at 10PM to see a band play. The band is really great and the bar atmosphere is cool!
I last like an hour and half and then go home to sleep at midnight.
Wednesday, I have class a bit later so I take the time to wake up. Friday is coming up fast and I’m supposed to go home in the South right after class.. I text my best friends to meet up at night so I can finally see them.
At night, we meet with Paola and her boyfriend, Jules (my supermate while in California) and Thibaut (a great friend from medical school and later on, my roomate). We laughed so much that night, my ribs were hurting!
My friends wearing my wig Ha Ha!
Thursday, I am so tired. The shots of Granocytes are not making it easier neither. I’m present in class but my brain is dead. I go home and sleep after it’s over.
Friday, after class I go with Mika and his roomate to a friend’s place in the South of France, not very far from my place, for her bday. In Montélimar.
I was supposed to go home but I negotiated the night off with my parents! We do a nice diner at night and the morning, we go to the farmers market get fresh food for lunch.
After eating, I go home.
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.
First, 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!
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.
I have an appointment for 11.30AM at the hospital. I will be doing my second round of chemotherapy.
The hospital is pretty far by public transit. Like one bus, two metro and 20min of walk. My parent calls the hospital and apparently, transport to and from chemo seances are covered by the social security. Sick.
My personal driver is waiting for me outside my house. I am going a bit earlier because I planned to meet with the social assistant. I want to try to finish my last year of classes despite all the additional cost of “being sick”. I meet with her to see if there are financial help i can apply to to help me realize my project. Let’s see!
I put on my super mask that gives me a total duck face. Apparently, the hospital is like the worst place for virus and infections according to my doctors. So I need to be careful when I go there.
After the meeting with the social assistant, I go to the waiting room for chemo. My dad joins me. A doctor calls us. This time it’s a woman.
She’s actually the first doctor of this hospital that my dad met when he came to get more info about the cancer treatment here. He ended up in tears and she really took the time to reassure him. Really comprehensive and caring!
She takes a look at my blood work. It’s pretty normal. Some stuffs are under the regular number. Like blood count (red cells and lymphocytes) but no too much. She examines my body and lymph nodes area with her hands to see if anything new came up. Nothing. Then, we talk about the side effects of the first chemo and how it went. I think I did pretty good and I didn’t get more prescriptions.
“You are good to go for the second chemo. I give the order to the pharmacy to start producing and it should be ready soon”
Back in the waiting room. I tell my dad to go walk somewhere and just leave our number in cas they call us while we are away. We go to the main building of this cancer center. They have a multi-confessional praying area. I think it’s pretty cool. There’s even a spot for the agnostics !
Then, we go to the information and media center. They have flyers for the Lymphoma day. It’s a conference during a whole day with doctors, caregivers, patients and family. On saturday, september 24th. I register with my family. It could be good to learn some more stuffs.
We go to the 4th floor. There’s a special room for teens and young adults with TV, computer, DVD, magazines, fridge and a seating area. This room was financed by FLO Lymphome Optimisme and I feel thankful for it! It’s dedicated to their son, Florian, who passed away from a lymphoma at 22. His parents created the association and didn’t stop helping the cancer and lymphoma community. They will be talking at the Lymphoma Day !
Finally, after 2 hours something of wait, it’s my turn for chemo.
While I’m doing it, I’m watching a movie “Miracles from heaven” with Jennifer Garner on the TV. My dad falls asleep a little bit.
I also got a super cool magazine, called Rose (pink in French). It’s for woman with cancer.
It’s pretty well done, with tons of tips, new, medical advices, stories, fashion and beauty selection,…
At the end, after almost 3 hours of perfusion, I feel I need to go to the bathroom. But like really bad. Or I’m gonna pee on myself. But I need someone to disconnect me from the port.
I try to move and find a position when the urge is less critical. And even, meditate. My dad tries to get a nurse to come help me but no one is in the corridor. They are in a short meeting. Damn it!
It’s coming. It’s coming. That’s it. I’m gonna pee.
Finally, a nurse come. Alleluia! I almost run to the toilets. In maintenance. Ok, let’s try the other down the hall. Being clean by the agents too. Are you kidding me ? Someone tells me to go anyway so I enter and ask the cleaning ladies.
Finally! I stay in the toilets for what I feel like 4 minutes.
I go home with my dad.
I’m super happy I received Gilles, my flamengo. He can befriend Molitor, the killer whale. (Well, no I’m not crazy but my parents refuse that we get an animal like a kitten. Because of chemo and all. So I got fake ones for the pool. I don’t care they are CUTE!)
I go to bed. I will be sleeping a lot. Wednesday, Thursday, Friday.
Waiting for my friends to be here!