At the age of 16, I was diagnosed with Stage 2A Bulky Hodgkins Lymphoma. Don’t hold back on anything you may be curious about, I’ll answer anything.
Edit: I’m 18 and healthy now by the way!
Edit 2: I’m trying to get to everyone’s questions but I’m a bit overwhelmed and there’s a lot to answer! I’ll get to everyone eventually!
How do you deal with the pressure of ‘I’m a survivor and i have to live life to its fullest’?
Do you get jealous that some people are allowed mediocrity?
Interesting! I’ve never really thought about it, but yeah. People like me, especially kids, are expected to be completely okay afterwards. A lot of us deal with the trauma of the hospital, and the emotional damage from the physical pain we’ve went through. A lot of us have scars that remind us every day that we used to be terribly ill. We’re expected to be immediately happy afterwards, but that’s rarely the case. Anxiety of relapse, PTSD linked to hospitals, it isn’t as simple as “oh you’re cancer free so you don’t have to worry anymore”
I live life to the fullest but I still have the days where I want to sit on the couch and watch tv. I am following a bunch of cancer survivors on Instagram and I see that they’re all living. They’re taking dance classes, they’re still traveling, but I still like to sit on my bottom and eat bad food sometimes.
I’m not necessarily jealous that people are allowed mediocrity, I’m more disappointed that so many people don’t take advantage of their health when they have it. I was sick for three years before being “cured”, and I couldn’t do much for most of my high school career. I couldn’t go to high school dances, or any of my homecoming events, or football games. I had to quit marching band because I got too sick to move. I wish people would live life how they want, because so many of us can’t. People like me want to see others flourish, we want them to live for us. I’m thankful I can breathe normally now.
Can you describe the physical pain you had to go through? Like how intense was it, how long did it last and which parts of your body ached?
Symptom wise, I had a four inch tumor in my chest, and that caused some of the most difficult breathing I’ve ever had. I couldn’t run otherwise I’d wheeze. I got lightheaded whenever standing up because I got dangerously anemic. I couldn’t concentrate and that caused a lot of stress because I was a full time high school student. In the morning ever day for three years, I’d get terrible nausea. I used to pop blood vessels because of how much I threw up. I missed so much school because of this particular symptom. During the day, at night, and after exercise, my legs would itch like insane. I even started bringing objects like butter knives to my legs to help satisfy it but it never did. It would be incredibly painful after scratching my legs raw.
During treatment, I used to get awful bone pain because of the white blood cell treatment they gave me. It used to consist of a shot of burning medicine into my thigh each day for two weeks at a time. I also had to take steroids, huge quantities of them. When I stopped taking them, they cut me off instead of weaning me off. My body became dependent on them so I had to suffer from withdrawals multiple times. I will also never judge an addict because of this, because I know what withdrawals are like. This was some of the worst pain I’ve ever felt in my life and everyone suffering from addiction is in my thoughts. It sucked. Tender to the touch, the worst belly pain I’ve ever had, I looked like I had dirt on my face when it was just my skin. I couldn’t sleep when coming off of it.
This is just the tip of the iceberg too, cancer sucks a lot and it causes so much grief.
Hello! I have a somewhat grim question, and I apologize in advance. Both of my parents were taken by cancer by the time I turned 19. I grew up extremely quickly after that, being in the middle of putting myself through college while taking max student loans to not let my family home get repossed by the bank and working a part time low paying job to make ends meet.
This caused me to age very quickly mentally, and I wasn't able to relate as easily to friends about things that mattered, or should have mattered to me for my age group.
Do you find yourself more mentally mature than your peers due to facing such hardship?
Definitely. I don’t like calling myself mature but most kids who go through this end up being more mature. You’re faced with death, and you come back from it a new person. A lot of other kids worry about pettier things, and I really became so disinterested in regular teenage drama that I became even more of an outcast haha.
You’re a very strong person for continuing on even after such hardship. Kudos to you for making ends meet. If you’re not told this, you can hear it from me: I’m proud of you for pushing through hardship.
What was the best thing your friends/family/people close to you could do for you when you were going through treatment? My closest friend has been battling sarcoma for the Past 6 years, and although I've become used to most of what he has to go through, I always wish I could be doing more for him and his family
The best they ever did for me was treat me the same way they always did. They let me play my video games, they let me still talk about the things I liked to talk about. Being treated differently just makes the whole situation feel a bit more grim because you’re constantly reminded you’re facing death. If they want to bring up cancer, let them. But also let them just talk about other things. Since you are asking this question, I assume you do that already. You’re a great friend for caring this much.
But also, food really helps. If the family needs help with groceries and you can afford to, helping them shop is really meaningful. My family had to always be by my side so they never had much time to grocery shop for my little sister.
I am so glad you are making it through and are doing awesome! You will be in our thoughts. It is one of the most lonely and toughest thing a person can have to deal with. My five year old Daughter is going through Leukemia treatment, she only has a year left of treatment. She was diagnosed last year. Just started Kindergarten, not sure of her balance, doesnt want to play on the slide and high stuff with the other kids.
My question is, what should we tell her about this when she is old enough to understand better? Right now we just tell her she's "sick" and good cells have to fight the bad ones. So I want to tell her the truth some day but don't want her to have this ongoing worry. Ya know?
Thank you so much for your advice and coming here and allowing people to ask questions.
When she’s old enough to understand, tell her the basic of what leukemia is. Be completely truthful.
What you’re doing right now is great. She’s so young, and she won’t understand quite yet. Leukemia and cancer in general is a complicated thing, and I think just telling her the truth when she’s old enough to understand will be your best bet. I wish you the best of luck, you’re all strong!
When and how did you realize something was wrong?. Since having kids I'm super paranoid about any strange aches and pains.
I always knew something was up, but I didn’t know it was this bad until I found a lump above my collarbone that didn’t go away. That’s a telltale sign of lymphoma in my age group. My doctor ignored my symptoms so the lump was there for a year before I got diagnosed, which is why I was expecting that bad of a diagnosis. Being health conscious is good, if you suspect something really bad, always push your doctor.
A lot of times with cancer, there will be no symptoms. Always just make sure everyone gets their checkup. That will be your best bet.
Has it changed your view of life?
Yes. Before getting diagnosed, I was severely depressed (diagnosed), and I felt like I was in an emotional limbo. Now, I feel like I was given a second chance at life. I still have depression but I know that I will always win my fight against it, because I’ve already been on death’s door. Life is so much more colorful now, and I appreciate the small things like being able to breathe fresh air when I first wake up in the morning and bring my dog outside. A lot of people don’t value life until they almost lose it.
The most I can recommend is just realize that every day is a gift. Living in fear will ruin the days that could be great. Live your life, because you never know when your health will be taken from you. I had to quit marching band and other activities like that because my symptoms started getting bad in freshman year. I wish I was able to stay.
And, realizing that death is inevitable and that there’s nothing you can do is what keeps me living my best life. We can’t choose when we die, so we might as well make life good when it lasts!
What do you think of The Fault in our Stars? Was it accurate? What did it not convey that you wish it did?
Ah yes, a question I’ve been waiting for. A lot of illnesses are romanticized in media. I’m kind of tired of people tying romantic relations in with terminal/deadly illness when it comes to literature. From what I remember from the book, it did portray the cancer part pretty accurately considering the author was in contact with an actual cancer sufferer.
But, one thing I wish that media would do is represent other kinds of cancer, cancers and illnesses that aren’t terminal. You only ever really hear of the stories that include death, not survival. It gives this idea that if you get cancer, you will die. That’s not the case.
My daughter had this in 8th grade. The doctors told us that if all the cancers to get, this is the one you want. Her treatments lasted about 7 months and she made it through with flying colors. How long were your treatments? Did you need radiation?
I needed 4 months of intense treatment, and no radiation. The tumor was blocking my airway so I needed treatment ASAP
Hi! so about 3 years ago, my younger sister was diagnosed with stage 4 Hodgkin’s Lymphoma when she was 14. We knew her life, as well as our lives would be flipped upside down with this diagnosis but one of the biggest problems she ran into surprisingly was a lot of bullying. She’s very active on social media and posted her journey everywhere she could to help make people aware of childhood cancer. A lot of people on social media would say that the cancer made her fat and that they hoped she died. As I type this I’m thinking “oh my god. People are gonna think I’m making this shit up.” And I wish I was but I am not. When she was finally cleared to go back to school, kids constantly tried to pull her wig off of her head and make remarks to her about how she was “faking” her illness. I’m really hoping nothing like this happened to you but if it did, I want to know how you dealt with it or anything similar to it so maybe I could give her some advice from someone who knows kind of how she’s feeling because I can’t even begin to try to put myself in her shoes. And what advice could you offer me about dealing with people who are emotionally hurting my sister?
Also I’m so proud of you for being a warrior.
Oh my god. That’s absolutely awful. I’m so sorry. Your sister has already been through so much. Kids can be so incredibly cruel. Tell her to keep her chin up, she’s already so strong. For those people, just understand that they’re ignorant, and they’re gaining nothing except earning the title of “kid who bullied someone who had cancer”, that will definitely catch up with them by itself. I’d let the school know if you havent already, that’s absolutely awful. I never had to deal with that kind of thing, thank god.
I wish you guys the best of luck. You’re all incredibly strong.
I always feel a little awkward around sick family members. I don’t know if I should be extra nice to them or just treat them normally.
How did you want to be treated by people who visited you and what pet peeves did you have when people Interacted with you?
Each request will be different, but I just wanted to be treated normally. So much change is already happening that I wanted to hold on to what I knew.
Pet peeves? Honestly, people playing “Fight Song” by Rachel Platten was constantly being played for me and I got really tired of it. Unless your family member really likes that as their anthem, I’d hold back on that haha.
Did you get a wish from Make-A-Wish foundation? And if so, what did you wish for?
I did! I wished to go meet some YouTubers (Smosh), and they were so cool to be around. Make-A-Wish coordinators (people who plan your wish) also tend to send you little gifts that they pick out themselves. The Wish itself was 100% paid for, and I even got a debit card with a limit to use in California.
What was the hair loss like, if you lost any? Was it just on your head or did you become a naked mole rat? Was it overnight? How did you realise you were losing hair? How do you like your eggs?
I shaved my head the day after diagnosis, but I lost hair everywhere! It was so nice to not have to shave for half of a year. It slowly started getting patchy on my body. My buzzcut also fell out. I could pinch my fingers around it and pull out the little knobs of head.
And, I like my eggs over medium, or poached with eggs Benedict :)
Hi there! I’m 23 and I just got diagnosed with stage 4 sarcoma almost two weeks ago. I’m getting my port placed on Tuesday. How was the recovery after getting your port put in? How did chemo affect your day to day life? What was your outlook like during treatment? This has been the toughest time for me and I have no idea how to handle it. Sorry if this is rambling, thanks for doing this!
Chemo will be different for everyone, but make sure you eat as much as you can if you’re able to. Food helps your body recover.
My port surgery was almost a failure. I have strangely wired veins and they were struggling to get the tube into my heart. Half of my upper body was in extreme pain for two to three days after getting it placed. It usually isn’t like that but it can happen ^
Chemo made me incredibly tired mostly. My doctors gave me a lot of medication to help with side effects, but I had nerve blockage and bone pain the most. Make sure you keep yourself clean just to help with any disease that may be lurking.
My outlook was positive, not just because my prognosis was good but because living live in despair is so sad and I didn’t want this period of my life to be solely negative.
Hi Im 18 too! I'm almost 4 years in remission from leukemia, AML. Do you get fears of a relapse whenever you get minor illnesses like a cold or flu? If you're in school, how do you deal with the stress of it? Im in my final year and I'm so stressed I'm afraid I'll make myself sick!
Oh man do I relate to this! I always try to keep my stress levels low in fear of recurrence. I definitely get anxious over relapse whenever I get a cold. I’m starting college in January, but during senior year of high school I just made sure I didn’t sweat the small stuff.
My girlfriend is currently completing her chemotherapy for breast cancer and while the prognosis is very good, I was wondering you how deal with the anxiety of recurrence if there even is any or the general fear of this cancer or any cancer coming back. I find that there are good and bad days. Would you say that is the case?
Congrats on being Cancer Free btw! What an achievement and I wish you a long and fulfilling life away from this rotten illness.
Also, recurrence anxiety is definitely something I deal with. It is a day by day battle that gets better with time. I write down my symptoms and go over them every once in a while to keep track of how I’m feeling. It’s also normal to have scan anxiety after completing treatment. The most she can do is keep track of her body and also make sure she gets to her checkup appointments.
Cancer survivor myself! How does your five year surveillance look? CT scans and blood or something different?
After two years, I think it will be just x-rays and blood work because of the nature of my cancer. I had my last CT scan a few months ago, and I don’t think I’ll have any additional ones unless something looks wrong. I’m coming up on two years in a few months, hoping for the best!
Did you experience long term nerve/bone damage? My little cousin has had 3 relapses of Leukemia and has been fighting since she was 4 (she is 12 now). There are buildups and deposits around her spine making it so she is wheelchair bound, she has a feeding tube, etc. The doctors are more worried about her surviving any more treatment than a potential relapse.
She’s had traditional chemo, a bone marrow transplant, and t-cell therapy.
Just wondering if you had this kind of damage and how long it took to improve if it did and in what stages?
During chemotherapy I had a lot of nerve damage in my hands, and I used to get bad leg cramps due to nerve blockage. My fingers would kind of seize up and I wouldn’t be able to move them for a few minutes. This went on for a few months after chemotherapy ended but it did eventually get better. I still get tingly fingers every so often though. It slowly kind of dies off, the nerve damage. I can deal with tingly fingers but I am an artist so having my fingers seize up was now fun.
Do you hate meat now?
I once knew a girl which had cancer and Chemotherapy supposedly gives an awful taste to any meat you eat, after being cured she still hates meat. I just want to know how common that is.
I don’t! My taste buds did change though, and I am pickier than I used to be. Chemo makes food taste gross in general, but sometimes it does last. I used to like more sour things but now I can’t stomach them at all.
How are you now? How has your outlook towards life and people changed?
I am fine now, but I have triggers that remind me of the hospital. Things like x-rays or even salt and vinegar chips/Pepsi.
You never really know what someone is going through, and I really learned that when going through chemotherapy. When I got my job in retail, it turns out that my boss has a young daughter who went through leukemia treatment. Even younger than me. I never would have guessed that. I digress, I feel like being kind to someone always works better than being mean. You never know what kind of thing someone is going through. It doesn’t hurt to be nice, it might make their day a bit brighter.
Life is much more beautiful. I make sure to notice the colors of the trees or how beautiful the sunset is. Since death was only a knock away, I know how precious life is. I take note of each beautiful thing I see, and I make sure I live life how I want. I used to fear death, but I see no point in living like that. We all are going to die, so living out best life is all we can do, right?
How are your parents doing? As a newish parent I've realized that nothing on earth scares me more than the thought of losing my children, or seeing them suffer. How did they cope? Did you feel like it was a burden on you to help them hold it together?
My parents cried, but I assured them I’d be okay. They were constantly worrying over me. And there definitely were times were I felt like I was being a burden to my family but then I realized that they were there for me then for a reason. Just hold hands and laugh when they need it. My parents made sure I was always comfortable and happy, it was greatly appreciated.
Canada or US Healthcare??
US. Unfortunately we were in the middle of an insurance switch because of my dad’s job change, so the new insurance tried denying that they were responsible. We won that fight though.
I got the same thing as a 15 year old and am now 30 and doing great. Happy that you made it through it and are doing good. How did your family deal with everything before and after?
My family of course didn’t want to believe it, but what can you do? Your kid has cancer. I wouldn’t want to believe it either.
We all just kind of moved on from it as most as we could, but we are all reminded whenever we have to go back to a doctors appointment. I get anxiety from everything involving my body and of course a lot of it is in my head. My family is always there for me during that, and it’s very much appreciated.
You realized you are gonna die soon and after some time again you realized you are gonna live long. As a person who had been this emotional road, what would you recommend suicidal people?
That each day is it’s own battle, and each day you win when you go to bed at night. Life is precious, make the change you need that will make you a happier person.
It's kinda simple question.
What were the feelings after the cancer went away?
Healthy, but anxious. Checkup scans and and any cold will make me nervous. A lot of us become convinced that our cancer is back if we feel an inkling of a symptom. But, that gets better with time.
Hi friend, I'm a Lymphoma survivor as well!!
How well informed are you about long term / secondary issues? Depending on the specific treatment you had for the Lymphoma, there might be issues to consider down the road when you're 10+ years out. I know that in the immediate aftermath of achieving remission, it's one of the last things people want to consider. But if you ever want to chat about what could come next, hit me up!
I had ABVD chemo + mantle cell radiation.
I'm 15 years post treatment and the last several years I've had a bunch of secondary issues pop up. The biggest concern for me now is breast cancer. I've had melonomas removed from my skin twice, likely a result of radiation. I have dental issues, again, radiation. My thyroid doesn't naturally function anymore (radiation) and I've been on thyroid hormone replacement meds for over a decade. I have nodules in a lung that developed during radiation, which now requires periodic follow up to ensure they don't grow (so far they haven't). My veins got pretty sclerosed from trying chemo via IV at first, thankfully I had a port placed and that saved my veins for sure.
I'm not trying to scare you and I know this is a celebratory time.
Cancer is super complicated, though. I shut down and just became super goal oriented and compartmentalized everything during treatment. I was in school, working, and undergoing all of my treatments... It was a super busy time. The psychological aspects of what I endured didn't hit me until I was a little ways down the road. Therapy has been very helpful, and I'm even in trauma therapy now to help me process aspects of cancer that I still haven't dealt with.
If you need an ear, a shoulder, or want to talk about correlary issues worth considering, just let me know.
Thankfully, I didn’t need radiation or receive radiation outside of the regular scans, my biggest concern is a secondary Leukemia down the road, but that’s about it. Thank you for informing me though, it’s always good to have extra information!
How do you manage knowing how awesome you are?
That’s so sweet, thank you haha. I live good knowing I can make people feel a bit better.
My dad is getting ready to start chemotherapy next week. I don't know what is and isn't allowed to keep him busy during treatment. What, if anything, did you do to keep yourself entertained/busy?
I could do mostly anything that wasn’t physically taxing / dirty. If it’s clean and it’s a sit down thing, I could do it. There isn’t much limit to what you can/can’t do! Nothing stressful of course!
What helped you to survive Cancer, medical science or strong mind? I asked this because I have read many articles about cancer survivors, in all those they emphasis that they survived it because of their their strong mind and faith.
The science got me through it physically, but a strong mind does help emotionally. If I sat there in dread, it would have made my experience much worse. I still made sure to go out and do things I loved, which helped exponentially.
How big are your medical bills?
Thankfully I had insurance, so not that big. I needed to mostly put for hospital food and other expenses like that.
I'm proud of you! Congrats, dude! Anyways, here's my question: What was the first thing that came to mind when you were diagnosed?
“Holy shit, but I’m not surprised” since I had been sick for quite some time leading up to diagnosis.
Did people/ your friends in school treat you any differently?
Yeah. I wasn’t popular before getting sick, so everyone acted that fake nice to me. People that never cared suddenly started caring. The adjective to describe me was “the sick girl”, I made sure to only keep contact with those who I knew cared about me beforehand. It added stress knowing that they only cared about me because I was sick. I’ve always been the same girl, a sickness shouldn’t dictate how you treat me.
A fellow teenage survivor! Congratulations I'm so happy you've survived 100% of your worst days. I was in remission for 3 years but the docs believe I've got my bowel cancer again. My question is do you fear getting it again? Because I did, I was paranoid - I avoided having boyfriends or girlfriends as I didn't want to hurt them if I got it again. Do you also suffer with the post cancer paranoia or am I just crazy? Sending my love your way btw <3
Sorry for formatting: on mobile eek
I suffer from that paranoia too! Don’t worry about having anxiety about it. I think that’s all pretty common haha!
What do you value the most Now? What is important to you now in terms of priorities?
My happiness and health is always first. I always make sure I do what I want to do because I don’t know how much time I have left.
Hey mate! We’re hodgkins buddies! I had it when I was 13.
How have you been dealing with all the post diagnosis tests? I find myself normally chill about them but then entering like a day of anxiety every time I actually take one.
The scans freak me out the most. Everything else I can handle. The scans remind me of my first diagnosis which is why it can get hard for me.
I'm studying to be a PA, what is something your team did well (beyond giving medications) and what is something you wish your healthcare providers had done differently? Thank you so much!
They always made sure I had someone to talk to if I needed it, they always made sure I was able to be distracted if I was in pain. Emotional support is the best thing a team can give.
Differently? Well, the team themselves didn’t necessarily do anything that should have been different. Things that were annoying were having to get up super early for a weigh in, waking up to needing your blood pressure taken, just the typical stuff that needs to be done. It isn’t their fault, I just wish it wasn’t needed as much as it is haha
How did you originally diagnose it? What were the actual symptoms?
I went into the ER after midnight because I stopped being able to breathe. They found a 4-inch tumor surrounded my lungs, heard, and airway on an x-ray. I got my official diagnosis after they did a biopsy on a diseased lymph node.
Edit: I hit send before adding symptoms haha sorry! Itchy legs, nausea, lethargy, and anemia were all symptoms.
Does lympoma affect fertility? I'd always wondered if people could have kids after cancer treatment.
It could, theres a chance that I won’t be able to bare children.
Did your illness lead you to realize what was most important to you in your life? What was it?
Yes. Cancer made me realize that my happiness and well being are so important. If I am not happy, and I’m not well, then I can’t live how I want. I am my own priority. I love helping people, but I learned that I needed to help myself before helping others, otherwise I’d never be able to help anyone else.
What was your mindset like towards life. Did you view this as a fight or did you come to terms with the end and how did you express this outwardly?
I viewed it like spectating a football game. I was watching my body fight this disease and I was rooting for my body by cheering it on and taking care of it, because I wasn’t in control of what happened.
You mentioned in a previous comment that your doctor ignored your symptoms for a year after you reported the lump in your chest. Did you feel he/she was negligent in doing so? Did you get a second opinion before your trip to the ER? Do you think an earlier diagnosis could have benefitted your prognosis?
Yes. Definitely. This doctor blamed everything on my anxiety. I ended up switching doctors before diagnosis and this doctor immediately knew something was wrong. I think my tumor would have been smaller had my concerns been considered.
How did you stay caught up on school? Missing just a week means weeks more of catching up for me, did you have your teachers come to meet with you or were you exempt from assignments? I cant imagine the stress that would've brought
I was exempt from almost everything, I missed the last third of the school year. The only thing I had to take was me Economics exam, which I ended up acing a year later.
Hey, I’m 22 and got diagnosed with Hodgkins Lymphoma , stage 1 just this year. Went through chemo and radio-therapy and finished the treatment some 2 months ago. Do you have constant fear of it coming back? How do you cope with that? I just struggle to believe that I’m cured and can just hope that everything is - and stays - fine. I’m just really in fear now. Stay strong - I’m glad you got treated and stay healthy!
The fear will fade with time, and remember that your brain will trick you into thinking you have symptoms. I didn’t believe I was cured either, it takes a lot of time. Plus, if it comes back, chances are you’ll be fine again. If you ever need to talk about this my messages are open for you!
A dear friend of mine has been diagnosed with breast cancer, unfortunately i live on the other side of the world and i don't know what to do other than wish her a speedy recovery.
Is there something more i could do?
A question i would like to ask you is: how did you react to the news that you had a lymphoma? How did your friends and family reacted?
Be there for her, offer her a place to rent if she needs it. Be emotional support.
My friends and family were all just in shock, and were very much upset. Those that cared stayed with me and helped me through it.
Hey, as a fellow Cancer surviver (I had hodgkins as well when I was about 11) how are you holding up after? A lot of people don't realise how much that stuff fucks you up afterwards. Its taken me 7 years to feel normal again and I don't even remember most of it. Hope you are doing well.
I’ve been just distracting myself mostly, thankfully I’m in a good part of my life where I’m starting college and I have a great group of friends. I don’t have a lot of time to think about it! I still feel off sometimes but that feeling goes away.
One of my close friends was just diagnosed with non-hodgkin's lymphoma and is starting chemo soon. Is there anything you wish your friends & family knew when you were going through treatment? Anything you wish they would have done for you, or wished they would stop doing?
Making every topic about cancer, when a lot of us want to hold on to at least some normality. We want to talk about regular things too. I’m still the same person I was, let me talk about things that don’t remind me that I’m dying.
What has been one thing that never changed despite the good times or bad times?
My love for Mac and cheese, and my love for video games.
19 yo with cancer here to say you are awesome and an inspiration to me. Question: Do you have to contine taking an medications after your cured? What video games are you favorites?
I only had to take bactrum for about six months after chemo, that was the extent of it!
And I am a sucker for Legend of Zelda, Left 4 Dead, GTA V, Mario Kart, Sims 4, Dark Souls, and I actually still play Minecraft too lol!
As someone who had 3B Hodgkins, thank you for doing this AMA. What treatment did you receive? How long did you have (or still have) your port in?
ABVD, and I had it in for about six months total.
Did you get a lot of support/good care or is there something in the system we need to fix?
The care was fantastic, all staff were incredibly kind. Everyone is tended to with care, and they make sure you’re feeling good. My hospital had free therapists on staff on top of everything, so I could talk out how I was feeling. There’s something special about children’s hospitals!
In your darkest time, what distracted you and gave you hope and happiness?
What was the scariest part of having cancer?
What advice would you give for someone who has just been diagnosed?
If my questions are too dark or painful I understand if you don't answer! My family has a history of cancer (Before I was born my cousin died at 6 from liver cancer, and my father won a battle with prostate cancer 2 years ago.) As someone with anxiety, I always picture myself having cancer or some illness later in life. I try to prepare myself for getting sick, and it is so enlightening to hear a person's perspective who has been through this.
Thanks for posting this. FUCK CANCER!!!
Honestly, the Legend of Zelda was my favorite distraction. I played so much Breath of The Wild and I completely forgot I was sick a lot of the time.
The scariest part was the small chance that the chemotherapy wouldn’t work.
Advice? When you can, eat. Eat what you want and however much you can. It’s strange but when you’re able to get sustenance it’s so important to give the body what it needs to keep fighting.
I feel you,
My cousin was diagnosed with a brain tumor at age 6, after 2 months of the doctors not knowing why she keeps vomiting and having headaches.
She has to retake her year because she missed the entire year, now she’s doing half-day in school.
She’s recovering! Almost fully, her hair is growing back and she has enough hair to do a little Mohawk with hair gel !
anyways, here’s my question : How did it impact your life before and after your cancer? How did you discover you had cancer?
Before I was diagnosed, I was considerably active and healthy, and quite the friendly person too. Now, I’m not as active and I’m kind of ridden with anxiety, because for three years I suffered from people being agitated with me for cancelling plans and I couldn’t tell them anything besides “I just don’t feel good”.
I personally discovered my cancer through a lump above my collarbone, but the doctors discovered it through a chest x-ray.
How is your day going, have you eaten yet?
I’m doing well! I have eaten, thank you!
Congrats! I had hodchkin too at 15 yo, more than ten years ago. How many months of chemo and radiotherapy did you do?
Also I remember there was vincristine in my chemo and that thing fucked me up so bad (has to get blood pallets transfusion ) that they had to stop the chemo. Was it your case ?
Oh and since you’ve probably had to go on a no sodium diet : happy return to normal eating :)! That’s one of the thing I loved the most.
I didn’t do radiotherapy, but I did four months of chemotherapy! I had to get multiple blood transfusions too, I had to get both parts of the blood. One looked like blood and the other looked like chicken broth!
I’ll always be thankful for a regular diet now, because of what I could and could not eat.
Firstly thank you for sharing your experience you are a fighter and stories like these help other folks with cancer have hope.
Asking for my relative who suffered from breast cancer and now is treated and cured. She always feels the cancer will always come back and this fear has taken a toll on her mental and physical well being. How are you dealing with this fear ?
Again thank you for sharing.
I mostly just keep track of my body, and make sure I actually make it to my checkups. Those are extremely important and give me peace of mind. Anxiety will fade with time, it’s an every day battle. Make sure she is able to distract herself with fun things and family, that always helps me.
Coming off of steroids, and the shots to the thigh each night. I don’t have a fear of needles but the shots had medication that burned when injected into you.
My mom had breast cancer and it was painful.Causing it not be diagnosis tell late stage.(she is mostly fine now) Was your cancer painful?
The symptoms I had were considerably painful, yes.
First off - congratulations on being 18 and healthy! My best friend had thyroid cancer at 15 and she's 43 now. I've noticed that she really can't tolerate sad songs or movies, she only wants to incorporate upbeat stuff. Is this something that happens when you experience cancer early on?
That’s my case too. I don’t like watching or hearing sad things, I will try to avoid those kinds of things. I want to live happily and stuff like that also triggers a depressive mood for me so haha I try to live without seeing that kind of stuff if it doesn’t have a happy end.
Did it cause you to make any hasty decisions not knowing how it would end?
Not really, I just overate when I could because I was on steroids. That’s about the hastiest decision I made.
Sometimes when I watch TV they show cancer patients becoming infertile due to the treatment they had to do. And women who choose to freeze their eggs because of it. Did your treatment affect your ability to reproduce? If so, how did you handle it? And if not, what would be your advice to men and women with cancer who will become infertile?
I planned on adopting anyways, so it didn’t affect me too much. I’d recommend the same for those who want kids. Adopting is always an option, there’s always kids who need homes.
Were you in the childrens ward? If so, did they do anything to make you feel more comfortable/not a small child because you were on the cusp of being classified as an adult?
Yeah. There weren’t many other teenagers there, but I got to hangout with the few that were there. We all played monopoly together often. I also got to watch some of the more adult movies, and I had less restriction because I understood what I was going through.
How did your peers respond to the news? Did you continue attending school during treatment?
My peers all kind of became shocked I guess. A lot of them didn’t believe me when I was talking about my symptoms, so figuring out there was actually something wrong with me was weird for them. I only was able to go to school for two days the rest of that year, I was exempt from everything else.
I'm sorry I'm late asking but pls do reply if you can. Also sorry if this question seems just stupid but how do people in your surroundings like friends and those with whom you wanna go out react to you being a survivor?
It doesn’t really come up often, because I surrounded myself with people who don’t pin me as the cancer girl. They know it happened but they treat me regularly.
What did your friends do when they / if they found out?
A lot of my friends found out in the middle of school, and they cried. I think they found out from my teachers since I emailed them first, telling them what was happening. I had a small Economics class, and I grew to be friends with them all. He was the one to break the news to the class I think.
did it change your religious beliefs? children with cancer who obviously did nothing to deserve the suffering are a major reason for me being atheist.
I never believed in a god, but this kind of solidified it. I believe that there may be some sort of being out there due to unexplained events but something as powerful as a god? I don’t know.
25(m) diagnosed cancer last year, how do you deal with “beeing the cancer guy”?. Some people just treat you like an imbecile that needs help on everything. (Not doing any treatment atm)
Just tell them that you’re still capable, you don’t need help with everything. Being straight up honest worked best for me. I got frustrated with that too.
Hey, congratulations on beating cancer. I have one question, did you still go to school? If so, did you have to bring medicine or something?
I was exempt for the rest of the school year, but I ended up going the last two days of school. I had to bring hand sanitizer, cleansing wipes, and pain meds. I had to wear a medical mask too.
Two-parter: Do you consider yourself spiritual? Did this experience change that perspective at all?
I’m not very spiritual, no. And no, it didn’t change very much. I had a lot of spiritual people around me which was nice, they always were praying and thinking of me which helped my emotional state.
What are some inner struggles or things you had to learn to cope with when you found out that you had cancer and during your recovery phase?
Dealing with people who suddenly started caring. I was bitter about that, a lot of people in school who never cared suddenly reached out. I was the same girl. The cancer didn’t change me.
Are there any theories as to how you got cancer? Environmental, exposure to any toxins, poor food quality/diet, etc?
I live in Michigan, where we have poor water quality. They estimate that the water made my cancer worse, but the actual cause of the cancer is unknown.
Did they give you hella morphine?
No actually, but I had other kinds of pain killers.
How did you detect it? What were your parents reaction?
They found it via x-ray, and my parents cried. They didn’t see me cry though, which kind of reassured them that I’d be okay.
As a teen who is currently finishing my cancer
Any pro tips?
Just keep yourself distracted and eat the food you want to eat when you can. A good attitude helps a lot.
Did this put anything in perspective for you?
Life is precious, and I will always cherish it. It’s cliche but after nearly dying, I realized how beautiful everything is.
This is gonna sound absolutely stupid, but does cancer hurt? Like is it a constant pain or is it like a painless killer? Sorry if this is a dumb question, I’m just curious.
It depends! Mine had agitating and painful symptoms but sometimes you don’t get any symptoms at all. Other cancers can actually hurt, like brain tumors can cause headaches or breast cancer can cause sore breasts.
What were the symptoms that made you first go to a doctor?
Unbearable stomach pains, but my concerns were ignored and symptoms started to build.
Congrats on beating cancer. I also survived Hodgkins Lymphoma. Diagnosed at the age of 10 (stage 2A as well), and I'm currently 29. Still have a lot of unresolved trauma but I'm glad to be alive! Keep kicking ass! How long did you go through treatment?
I went through treatment for about four months! Good job on beating it!
How much time did you have cancer for until you were cured?
Three and a half years, and that includes treatment time.
Were you afraid of Chemo and being sterile from it?
I was more afraid that the chemo wouldn’t work. It was very entertaining seeing all of the nurses dress in hazmat suits while handling something that would be injected into my body though!
Are you afraid it will return at some point?
Yes, I am. I think mostly everyone is though as well.
Did you have a bucket list of things you wanted to try? Which ones were your favourite and were there any which didn't live up to your expectations?
P.S. Hope you're having a nice day ✨🌸
I’m having a great day, thank you! I hope you do too!
I actually have an overall bucket list, one I had before getting cancer. My Make A Wish was to meet some YouTubers, which was on my bucket list. It was glorious and lived up to every expectation that I had.
How do you feel about jokes about cancer?
I don’t like them very much unless they are told by a cancer survivor themselves.
Hey, how long after you got the all clear did you get your port removed (assuming you got it removed)?
I had it removed about two months after finishing treatment due to the nature of my cancer. The expected it wouldn’t come back so they were confident in taking it out.
How did you get it?
It’s a mystery, it isn’t in my family history so we don’t know. Probably a mutation in my genetics.
Do you know any tips to prevent cancer?
There’s no way to completely prevent it, but better your chances by keeping an active lifestyle and investing in more natural care products. Also, this is up in the air, but dairy and red meats are linked to a cancer risk increase. I’d just be careful abort what you consume.
I had the same thing was I was 16! That was back in 1998. Really changes your perspective as a teen, doesn't it?
Before that, did you find a way to distract yourself?
Video games, video games, and more video games haha
do you have any more proof op? the cancer pic isn't enough to me. I would like to see a medical report or something(I can obviously censor it out)
Oh and also, you can look at my Instagram for my Make A Wish stuff too. I’m sorry that’s not cutting it but if I can’t make you believe then you don’t need to lol.
When you thought you were going to die, (and I’m glad you survived) did you think to yourself you wanted to commit some mass form of terrorism and take others out as you have nothing too loose?
That’s an interesting question, but no.
I was diagnoesed with Stage 2B Hodgkins Lymphoma at 17 Years old. Had to go through 16 weeks of ABVD Chemotherapy. With the port as well. I found out due to a tumor pressing on a nerve in my shoulder. An Xray showed I had a tumor around my lungs. Sounds like we had a similar fight, however I am lucky I was diagnosed a week after graduation. So I only had to deal with College and Chemo. Not High school and chemo.
For me, the worst part about Chemo was the mouth sores. I could not eat any food for three days after chemo, which was awful for me. I am all fine now, and living life without cancer. But what was your significant struggle with the whole situation?
My complete lack of energy. I couldn’t stand for long periods of time without wanting to keel over. I tried getting better with it but it did nothing until I was done with chemo.
Did you ever wish you'd just die from the cancer or nah?
Eh, no not really. In my opinion, if I was going to die I’d like to be doing something to save people. Like shielding from a bullet or something like that. It’s not my style to go out via cancer.
I am a 20 year old with scoliosis, and a big problem for me is my parents paying for my treatment as I am in college at the moment, did you have any problems with thoughts like that? Or were finances not a problem?
I did feel guilty often, but they didn’t need to pay for most of my medical bills. They mostly paid for things to keep me comfortable, like food or iTunes gift cards. I told them they didn’t need to but they did anyways because it was the least they could do. I eventually accepted it because helping someone feel happier makes one feel better, so I just took it and used it and it made them smile.
I had exact same diagnosis as you though I was a year younger at time of diagnosis, and currently 18. I had a mri scan luckily a month before I was scheduled and they called me two days later I was getting admitted that morning and starting treatment even before testing begun. The tumour was pressing on my trachea and they guessed within a week I wouldve been suffocating, so with that how was the road to getting a diagnose, I've had many doctors tell me it's a very easy cancer to treat but a difficult one to find. Also how long did it take for your energy levels to return?
My energy levels still aren’t quite back to normal yet, but they’re getting much better!
Genetics points to the fact that I will get cancer. Finances point to the fact that I can't stop working and afford chemo, etc. I have watched immediate family members die from cancer; to call it brutal doesn't even come close. As a late gen x early millennial, I will have to keep working and probably drive myself to and from treatment some day within the next 15 years. I'm being practical, not sarcastic. Is that a realistic expectation, to have treatments, the daily inevitable pain, etc and still work part time and get to appointments?
For me, I probably couldn’t have worked. But I could have driven and such if I had my license. I do think working would be possible if you keep a regular sleep schedule and keep up with pain meds. Good luck to you!
How did your battle affect your education? Did you still try to get through classes, or have to take sabbatical medical leave? Can you notice a difference on where your progress is versus your peers you knew before your treatment?
Sorry for the late question, but it wasn't asked by anyone and I'd figure this would be a big part of life at that stage for you. Thanks!
I was able to take a medical leave. I only had to take my economics exam which I ended up acing the next year. And at the end of senior year, I actually ended up finishing my classes early. That was after treatment, turns out I’m a pretty fast worker when I’m not dying.
Also a teenage cancer survivor, so congrats! Do you have any permeant changes to your life/routine post-treatments?
I always make sure to check for lumps everywhere now. It’s become a daily thing. Breast exams, armpit exams, groin exams, everything like that I spend time doing each day.
Hey, I'm sorry I might be a little late, but, my childhoods best friend has second degree lung cancer, and honestly I don't know how I can help him. He's depressed, and won't let me talk to him much anymore. Do you know how can someone help in this situation? And how can someone overcome the pain, the fear, and the cancer in general?
Unfortunately, it is something that your friend will have to come to terms with before you can do much. Just keep reminding him that you are there for him, and if he needs help with anything, you’re there.
Overcoming the fear involves the fact that everyone will eventually die, and there’s no way to escape it. Living life as you want will make you not necessarily forget that you will die, but come to terms with it.
I guess that this is too late but I’ll comment anyway. Here in the Netherlands a lot of people swear with diseases. They’re used as adjectives like “cancer bitch”. Not that many people swear with cancer but some do. How do you feel about this? Does having survived cancer make this more or less offensive for you?
If it’s something that has been going on for a long time, there’s not much I can do about it. I’m kind of iffy on it but I know a lot of people mean no harm by it.
Fellow childhood lymphoma survivor here. Do you feel that this experience has changed you for the better or worse? I know I struggled with it a long time because I always different after but eventually I turned what felt like a weakness into a strength. I think it's hard to come out of that the same person.
Both. I have become a better person because of it but I have a lot of mental problems now.
I just wanna say, good for you! I had Stage 4 Hodgkin's at 13 and am now 17 and have been in remission for 4 years now. Good luck to you and your future! And since I'm forced to ask a question, what's a good musical artist you've been listening to lately?
I’ve been listening to a lot of older artists like Sam Cooke and Ben E. King!
What is something you would have liked your friends to do while you were in treatment? My teenager has a friend going through chemo and we'd like to know ways to support him. (We're checking in regularly, sending cards too but what else?)
A lot of them acted strange around me, all I ever really wanted was for a bit of normalcy. If he is feeling up to it, offer to come in and play games with him, or watch a movie with him. In addition, if the family doesn’t have time for grocery shopping and you are able to, shopping for the family may be a big help. My family stayed by my side and didn’t have much time to grocery shop for my little sister, so when people brought in food it meant a lot.
What will you do when it inevitabky returns, no matter what?
Fight through it again. I’ll keep fighting it.
Knowing you have cancer at the young age of 16, how did it feel? I am really scared of being diagnosed with serious illnesses at my age and each time I am sick, I always one way or another try to convince myself it is actually cancer
When I was sick, it never went away. I felt lumps on my neck and collarbone and I stopped being able to breathe. My legs itched like crazy during the night. If you really think something is ever up, go to your doctor. Don’t try to stress about it too much though, because stress raises the risk of cancer or can make it worse.
Hello! How has this shaped the way that you see your future? While undergoing treatment did you have plans on a future? What are your plans now and how do they differ from what you thought they were going to be?
My plans changed. I wanted to go into Forensics but I realized that it was such a sad career, so I changed my major to Culinary. I want to live surrounded by positivity.
My friend's mom kept some things a secret when she had cancer so that my friend wouldn't be sad. Did your parents ever withhold information about you or any people you met while getting treatment?
No, we were completely honest. We didn’t think keeping things secret would really help any of us heal, talking things through was much easier.
How many people told you to stop treatment and instead cure your cancer and regrow your hair and get a girthier penis by drinking juice or detoxing or buying their MLM essential oils instead?
Lmfao actually not too many. I remember one woman tried telling me chemotherapy didn’t work and that I would kill me. I bought essential oils to relax me instead of cure me. Lavender helped me sleep.
Don’t know if this has been asked yet but... what’s next? I mean you made it over this big hurdle, so where do you go next? What are you thinking about doing for the next 5 years?
I’ll be going into culinary school! I had this time where I didn’t know what to do because I managed to do something at the age of 16 that not many people get to say they’ve done. I had some small mental crisis because I didn’t know where to go from beating cancer, what cooler thing can you do? Now I just decided that culinary is the best route for me. I’ve always loved cooking and food, so the path would bring me happiness.
Fellow Lymphoma survivor here
Question 1) what was the worst part of chemo for you?
Question 2) what do you make of everyone around you calling you a hero all the time?
1) The burning bone stimulants! Those sucked. A shot to the thigh every night that burned.
2) I don’t really like being called a hero. I didn’t save anyone, all I did was sit at home and play video games while hoping my cancer would go away with the chemo. Sure, I had a positive mental attitude but that can only go so far.
Do you feel that you’ve missed out on anything because you were in the hospital so often, or thinking about cancer and not other things?
I missed out on a lot of high school. I went to one dance throughout all of freshman and sophomore year, but I ended up going to both of my proms. I couldn’t go to a lot of football games or after school events because I just wanted to sleep, I didn’t want to do anything but lay down. High school sucked until I was declared cancer free after junior year. My senior year was pretty cool!
Did you live your life on zofran? Did you have horrible jaw pain? Did you hate taking giant bactrum horse pills once a week?
I lived on Zofran 100%, that was what kept me mostly pain free I believe. I did have some jaw pain but it wasn’t the worst in the world and GOSH I HATED BACTRUM. Those things were so freaking massive and I had to take them every day. Man did those suck.
Fellow Hodgkin’s Lymphoma survivor here! Before your chemo - did you get itchy?! It was the worst thing I’ve ever experienced.
Oh my god I had such itchy legs. It was the worst thing I’ve ever dealt with because /absolutely nothing/ would help it.
Childhood cancer survivor here (A.L.L). Did you get a BMT? If so, where did you get the transplant done?
I did not! I’m thankful I didn’t need it.
If you had chemo, how does it hurt, like how does it relates to other pains, stinging , throbbing, etc?
You actually don’t feel the actual chemo, you just feel the side effects it gives you. At most it can feel a bit cold, since the port directs the chemotherapy directly into your heart. It dilutes it so you don’t really feel much.
Congrats on survival first of all seccond how did you get diagnosed tests done and symptoms ect?
Tests: X-ray, CT scan, blood work, biopsies on lymph nodes and my hip bones.
Symptoms: nausea, itchy legs, inability to breathe, inability to eat much.
Did you actually try to do everything on your bucket list when you found out?
No, because unfortunately I was a really low-energy person and couldn’t manage to do much.
What something if anything positive that you got away from the experience?
Life is beautiful and health is wonderful!
Have you ever got offended when someone makes a cancer joke, then or now?
Before-hand, I didn’t like them and didn’t use the joke. Now, I believe only cancer survivors should be able to say those kinds of things, you’d understand the impact that way.
Did you have any religious conversions in the time you had cancer?
Yes. My family brought me to church once or twice and the church always held prayer circles around me when I was in the hospital, which lasted a while. It meant a lot but I’m not very religious.
Did you or your relatives become religious during that time?
No, but a lot of religious people are in my life anyways so I had multiple prayer circles and I had an entire church praying for me which was nice. I’m not very religious myself but they prayed so much for me, and it meant a lot.
Were you an avid student/tutor in chemistry?
Actually, yes I was. Chemistry was my favorite subject.
Hi! Congratulations for battling cancer!
I am a fourth year student in genetics. I am just curious in terms of what kind of treatment did you take and how did you continue those therapeutic treatments?
I took ABVD chemotherapy, and they came in bags and IVs rather than pills. I had pills for other things like a pneumonia preventative and pain killers, just as an example. I also took a lot of steroids.