Carley’s husband, Josh, was diagnosed with stage 4B Hodgkin’s lymphoma at 26. After experiencing subtle symptoms that eventually escalated, a trip to the emergency room, a lymph node biopsy, and a PET scan determined he had cancer.

Overnight, Carley took on the role of caregiver, navigating through cancer and providing Josh the support and care that he needed — not a typical life for a young, newlywed couple in their 20s.

She shares how she processed the diagnosis, how she coped with the ups and downs of being a family caregiver, and how she readjusted to life after cancer. She highlights the importance of finding support as a caregiver and trying to take care of yourself.

In addition to Carley’s narrative, The Patient Story offers a diverse collection of caregiver stories. Spouses and partners of former cancer patients share their own experiences from processing a diagnosis to undergoing treatment and side effects.

Noticing the initial symptoms of Hodgkin’s

In April, a few people brought up that he didn’t look very well. He was having a lot of symptoms of [what] we now know was Hodgkin’s lymphoma. We decided to go to the emergency room to get things checked out.

The ER doctor essentially told us it was very likely that he has Hodgkin’s. He was officially diagnosed in May.

He did 12 rounds of chemo. He’s had a few PET scans since his treatments ended and he’s doing really well.

We tried to backtrack: when did this start? I don’t think we’ll ever actually figure it out. 

He was experiencing a fever [and] not feeling well. We both remember St. Patrick’s Day 2022 was the first time where he had some sort of symptom happening.

My family works in the medical field as well and I was telling them all of the symptoms that he was experiencing. We called the lymph node “the lump” at the time. My stepdad said, “It’s one of three things. It’s a lipoma, a lymph node, or a tumor — and you really want it to be a lipoma.”

I mentioned to my mom, “I might take some time off work.” She said, “Maybe save that time. You might need it.” I don’t know if they knew, but I think they knew something was going on.

The day after, I woke up out of my sleep and got on my phone, which I never do. I got on TikTok and the first video that popped up was someone standing in a hospital gown and it had all of his symptoms, which were the same things that Josh was experiencing. Then it cut to the next picture and it said he had stage 4 Hodgkin’s lymphoma, which turned out to be exactly what Josh had.

This is definitely not good. I realized this might be worse than we thought, but I still had a lot of hope driving to the hospital, sitting there, and waiting for the results.

I even told Josh, “We’re going to leave there, feel silly that we even went, and have a big medical bill that we have to deal with.” But, unfortunately, it was cancer.

I don’t think I really wrapped my head around that or thought that was a possibility. I just kept thinking, It’s going to be okay. Everything’s going to be fine.

Seeing a therapist for mental health support

I go to therapy a lot. My therapist definitely helped with navigating a lot of my feelings and emotions around Josh’s treatment and his cancer. 

I was actually going to therapy before his diagnosis. I started in January and we knew something was going on in April so I was established with my therapist. She already knew about my background, about Josh, and a lot of things in my life so that was definitely so beneficial.

I would recommend [getting] a therapist, especially going through something like this, whether you’re a caregiver, a patient, [or] a parent. There are so many feelings that you have and you have to keep them in check.

Most of the time, I would work in the room where he was so he could have someone with him because it was isolating and lonely.

Most of the time, I would work in the room where he was so he could have someone with him because it was isolating and lonely.

There were times [when] I would have to go into the office. I’m very lucky to have the family and friends that we have. Family would come over and hang out with him if I had to go somewhere or do something.

I did all of the grocery shopping and cooking even if it wasn’t very good. We utilized a lot of resources. I would do grocery pickup orders so I wasn’t spending time walking around the grocery store. We use things like a meal kit delivery service, which were just helpful.

A lot of [our] family would bring over meals so we wouldn’t have to worry about making something every day. The grocery pickups were definitely helpful and even our families would pick up things for us when needed.

We were at the house majority of the time. [With] COVID, we wanted to be really careful so we didn’t go out and do much. I didn’t want to get something and bring it home to him.

When I did leave and go to a store, I would always wear a mask and really try to protect myself. My parents got us really nice air purifiers to keep the air in our house clean and to keep Josh as safe as possible during everything.

What to remember when your partner is diagnosed with cancer »

When I did leave the house, I tried to take advantage of it. I had a caregiver card for medical marijuana, which was legal in our state and a big help for Josh. I would go to the dispensary once a week. I would drive with the windows down, listen to some music, and try to enjoy a few minutes out of the house.

I’ve never cared for a parent [or] a grandparent. No one in my family and Josh’s immediate family has been sick to the point that [we] needed to help out in any way. Cancer was so new to us.

I learned a lot about the medical field, health insurance, Hodgkin’s lymphoma, and chemotherapy. I call it knowledge that I never, ever wanted but now I have so much of it. It was definitely a hard transition. I found myself Googling all the time.

Luckily, the hospital where Josh went gave us this big binder that has a lot of questions and answers. We were able to utilize that a lot. We had to utilize a lot of resources like calling the doctors on the weekends or asking a lot of questions when he was going to treatment.

I even found some challenges after treatment. I found myself feeling protective. We would go out to a bar and I’m looking around to make sure everything’s okay. It was hard for me to realize he was going to be okay.

Readjusting to life after cancer

With things being more normal and him being healthy, it’s like, what just happened?

I’m very thankful and so happy that he’s able to get back to normal life, but it was hard. We were together basically 24/7 for months.

He went back to work and he’s able to drive his car now. We have some days where we don’t really see each other until the evenings.

At first, that was really hard for me because I’d miss him. You would think after spending so much time with someone, you would need time away.

As bad as this whole situation was, it brought us so close and we have this bond that we’ll never have with anyone else. I don’t wish this experience on anyone, but a positive that came from this is that we are so bonded and so close.

In sickness & in health

When we found out that he had cancer — girlfriend, fiancee, wife, I didn’t care what it was — I was going to be by his side and take care of him.

It’s actually ironic. A month or so before he was preliminarily diagnosed, I was putting lotion on his legs because he had been so itchy. I told him, “If you ever got sick, I would be such a good caregiver.” Weeks later, I became the caregiver.

It wasn’t all rainbows and butterflies. When people get engaged, they have time to plan a wedding, go wedding dress shopping, go to a bachelor and bachelorette party, and have this giant party. We didn’t get any of that and it wasn’t by choice so that definitely was hard.

They always say your first year of marriage is the hardest and that proved to be very true with us. Our first year of marriage was unlike a lot of people’s, I’m sure, especially being so young. We were going into this journey as husband and wife and as patient and caregiver. They were all new territories for us so there were definitely some challenges.

But we have a bond like no other and I know that we can get through anything. When we said our vows, “in sickness and in health” definitely stuck out to me. Marriage or not, I would have been there and done everything I could.

I would do it again if needed. I’m honored to have been able to help him get through such a hard time.

Dealing with scanxiety as a caregiver

For a caregiver, at least for myself, and for Josh also, when you initially get that scan, things are good for a little bit. You don’t really have to worry. You know everything’s the way it should be. As it gets closer to your next scan, that’s when I feel like the anxiety starts to heighten a little bit.

My way of managing my anxiety is helping manage his. We have a lot of discussions about when the scan comes around. I take him to a scan, we ride in the car together, and we ride home together. We’re a duo.

He uses Ativan, which helps calm his nerves. We had a bad experience with one of his scans. He was pretty anxious and he forgot to take Ativan. We tried everything.

We were at the hospital where he got his treatment. We tried to get him some Ativan so he could relax for his scan. [With] PET scans, you have to stay really still and that can be hard when you’re anxious. It didn’t work out so it ended up being a really rough day for him.

Finding a caregiver support group

We did a local, in-person support group, which was amazing. We found an online Hodgkin’s support group; that was a little triggering for Josh and I didn’t stay in it very long.

I did meet someone through that who was also a caregiver around my age. Her boyfriend is around Josh’s age and he had the same cancer, just stage 3. She has been such a grace in my life. She and I talk frequently. She validates so many of my feelings and I think I do the same for her.

I have a lot of friends here [and] we have a lot of family here, but talking to her is different because she is going through the same thing. She understands all of the emotions, mood swings, and everything that comes with life before, during, and after cancer.

I really appreciate everything that she’s helped me get through. Support groups definitely are something that I would recommend to anyone, in person or online.

Finding someone who can relate to you and you can relate to is really helpful. I joined some caregiver support groups virtually and reached out looking for a young caregiver caring for someone young. I actually got some backlash because people said, “Well, I’m not young, but I care for someone.”

My experience is so much different than someone who is 70. Navigating through all of that is not a typical life for people in their 20s. Finding someone around your age that you can relate to is so beneficial.

Words of advice to family caregivers

If you’re a caregiver, please ask for help. If anyone offers to help you, take it. People don’t know how to help you so you have to guide them and tell them what you need. Take help from anyone.

If you have the resources and are able to make your life easier, go for it. Things like a meal kit delivery service and grocery pickups.

We actually hired someone to clean our house on days [when] Josh was getting chemotherapy so we would come home to a clean house. It was one less thing for us to worry about. I would recommend that to anyone.

Try to remember that your loved one going through treatment is not themself. They’re getting a lot of medications put into their body. They’re angry, they’re sad, they’re depressed. Try your best to not take things to heart. They’re doing their best. You’re doing your best.

Journal. Do some self-care. Go to therapy. Any of those things would really benefit anyone, but especially someone going through such a hard time.

Try to take care of yourself. If your glass is empty, you can’t fill anyone else’s and that’s something that I wish I would have done more of.

Getting ahead of the mental health game is something that I would also recommend. If you’re going through treatment or just got a diagnosis and you’re receiving no mental health support, reach out about that. The social workers at cancer centers and hospitals are great. They will help you connect to any resources that you might need.

I would look up and send him videos of slower-paced [exercises], like elderly yoga and stretching. I don’t know if he ever did them. You’re sore, you don’t feel great, but it’s just light movement and they’re available on YouTube.

I found rubber hand stretching tools. It’s like a thick rubber band. You squeeze it and it helps with the strength of your hands. For the type of treatment that Josh was going through, neuropathy is pretty common. Keeping things moving I think could be helpful for some people.

When you find out that your loved one is going to go through this, your brain’s all over the place and theirs is, too, so thinking clearly isn’t always there. One way you can help is to try and prepare ahead of time.

Make sure you have a railing going up your steps because sometimes it’s hard to walk. We didn’t have a railing going up our steps. We didn’t know that we would need that so we were able to get that.

Josh wasn’t comfortable. I don’t think anyone who’s going through this is so buying things that bring comfort — new pillows, comfortable blankets, comfy clothes — would be a big help going into this.

A friend gave Josh a blanket and we still use it. My cousin actually knitted him this beautiful blanket and he took it with him to every treatment.