Hodgkin Lymphoma Stories
“My advice would be kind of take everything a day at a time. For me personally, when I was first diagnosed, I would always think about what was coming for the next week and the week after that.
I would get so stressed over that and my mind would kind of go crazy thinking about all the appointments. But once you start thinking about what’s going to happen today, it helps you feel less stressed about everything that’s about to happen.
Age when diagnosed:
Itching on legs and feet
ABVD for the first 4 treatments
AVD for the remaining 8 treatments
Table of Contents
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What were your first symptoms?
I only had one - itching on my legs and feet.
What do you remember of that first visit to the doctor?
I was only showing him my legs to see what was wrong. I was prescribed creams to try out but they didn’t work out. I saw the doctor a second time and we tried other creams and they didn’t work. In March of this year I saw a dermatologist. She ended up referring me to an oncologists when I got some scans back because there was something showing up.
What tests and scans did you go through?
I had one CT scan, one PET scan before I started chemo, and one PET scan halfway through chemo.
How long did it take to get those results back?
I got them the same day.
How did you learn of the diagnosis?
I had to go in the next week on Monday to do all the testing. At the end of the week I was diagnosed with hodgkin lymphoma.
What was your reaction to the diagnosis?
For a few days I didn’t believe it, and it wasn’t until I started chemo that I really realized what was happening. Now I'm fine with it.
How did you break the news to your loved ones?
When I got the call I was with my mom so she knew when I was talking with the doctor on the phone. I waited until my dad came back from work to tell him and I just said “It’s hodgkin lymphoma.” I texted my friends and asked them if I could meet them very soon. I saw most of them the same day or during the weekend and I told them what was happening. That’s how I told everyone that I’m close to.
2. Treatment Decisions
Did you get a second opinion?
No I didn’t.
How did you decide where to get treatment?
I didn’t. When I was referred to the oncologist I just want to that hospital I just stayed there because I liked the hospital. I could’ve been transferred to my city but the transfer of the documents and all takes a bit of time and they preferred having me with them so I stayed there.
Is your hospital a large medical center or a small hospital?
It’s a large hospital.
What are some pros/cons of being in a large hospital?
I like it. Compared to the one in my city, it’s a small one and I’ve been there a few times. But the one I’m going to for chemo, it’s nice because you get a lot of staff, especially in oncology. There are tons of nurses and it's really fast.
How was your medical team?
They’re so sweet, I really like them. I have two oncologists and they’re kind of young so it’s really fun. My nurses, I see them all the time, and they’re always talking to me because I’m the youngest one there. I feel like because I’m the youngest, they’re always kind of remembering me and asking me how my treatment is going and if it’s working. They’re really always there for me.
Whose decision was it to do chemotherapy?
That’s what the oncologists said - it wasn’t my decision.
Was there anything you wish you had known at this point?
Not really, not that I can think of.
What did your treatment consist of?
I do 6 cycles of ABVD chemo.
What is each week like?
I get my chemo every two weeks on Thursday. The day that I have chemo it’s just a regular day. The week after, I have my side effects but they’re not that bad. My week ‘off’ I just go on with my life and I hang out with my friends.
What are the side effects?
I’ve had mouth sores, bone pain, sore throat, and numbness in my fingers once.
How do you deal with these side effects?
My first two treatments I had mouth sores and I didn’t really know how to deal with them. I talked to my doctor and he prescribed me a mouthwash that really helped. I also looked online and a lot of people said that they would eat ice during chemo and that would help. So ever since I’ve been doing that and it’s really helped and I don’t really have mouth sores anymore. For bone pain I don’t really have a way of dealing with them - I just take Tylenol and they go away after a few days.
Were there any big surprises during treatment?
4. Quality of Life
Did you experience hair loss?
Yes, I am going through that right now. I have been losing hair for a few weeks but it’s not that bad. I’m probably going to shave it soon because it’s really annoying.
Were you surprised when you lost hair?
I was expecting it but yeah I was surprised.
I’m not the type of person to lose hair so I was really shocked when it happened. The few weeks after that I would lose hair all the time. To this day I’m losing hair all the time. At first I was shocked but now I want to get rid of it.
Do you have wigs?
I have two wigs and scarves.
What has been the worst part of your treatment?
The worst part I would say would be kind of having to pause your life for 6 months.
At first I was doing things and now I’m getting really bored. I can’t really go out much. I think that’s the part that sucks the most for me, just not doing anything.
What has helped you deal with this kind of stress?
My friends and family really helped me. A lot of my friends are reaching out everyday and want to see if I can hang out with them, just go out to walk. I have my ‘me time’ watching Netflix and reading - that helps too.
Were there times when you had to advocate for yourself?
Not yet, no.
How important is it to have caregivers?
Really important. I really couldn’t make it if it wasn’t for them. They’re always there for me and if I ever need to talk I have them.
It really helps take your mind off what’s happening and the treatments and cancer and all of that.
How can one deal with caregivers during treatment?
At first it was hard for my parents but they wouldn’t really talk about it with me, they would mostly talk about it between them. I think it’s hard for them to really see you go through that. They really want to try their best and they always, always check up on you.
Just make sure that they’re feeling positive about this and try to be happy when you’re around them. Of course you can be sad around them but not all the time because I feel like that makes it worse for them.
How has the financial aspect been?
I have money saved up and I live with my parents so I don’t have a lot of things to spend money on. At first I was fine to stop work because I don’t work a lot of hours a week anyway. I went to the government in Canada and asked for the medical leave money. You get paid every 2 weeks for 15 weeks so that helps, but after that, I’m finishing up in July, and after that I don’t get any money. I’m fine for now but I think I’ll be fine.
What kind of help have you had preparing for issues outside of treatment?
Everytime I have chemo, my dad doesn’t work so he can come with me all the time. For my appointments, my mom works during the morning, so she can always come to my appointments - we asked for my appointment to be in the afternoon so my mom could come with me. So they're always there for that so they can drive because not in my city, it’s an hour away. My parents are always the ones driving because you know after chemo you’re not feeling like driving and they’ve been really helpful for that.
What is the new normal following cancer?
At first it was different because that’s all that’s on your mind.
Right now I’m in remission and ever since I’ve heard that news I just don’t think that much about cancer anymore. Of course I still have my moments where I think about it and I get sad and I remember I’m in remission and yeah that’s kind of the new normal.
What advice would you give to newly diagnosed patients?
My advice would be kind of take everything a day at a time. For me, personally, when I was first diagnosed, I would always think about what was coming for the next week and the week after that. I would get so stressed over that and my mind would kind of go crazy thinking about all the appointments and all of that. But once you start thinking about what’s going to happen today, it helps you feel less stressed about everything that’s about to happen.
They want to help as much as they can and you don’t need to be shy to ask for anything.