January 29, 2024

Rachel’s Stage 4 Hodgkin Lymphoma Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Rachel was diagnosed with Stage 4 Hodgkin lymphoma at age 44. After initial misdiagnosis including eczema and other conditions, her symptoms progressed and her cancer was finally diagnosed correctly. She was initially hesitant to undergo chemotherapy, but upon learning that she would have approximately 6 months to live without it, and after consulting her family and other specialists, she agreed to undergo treatment. She was then put on chemotherapy for 6 months.

Rachel is from Almondsbury in the UK. Having been trained in musical theater, she has taught singing and drama in theater schools and has run her own business teaching singing for the better part of a decade.

Rachel’s cancer is now in remission. She shares her story with us–including her key challenges, frustrations, and struggles, and some important lessons and takeaways–in the hope that other cancer patients can benefit from and be inspired by her experience.

In addition to Rachel’s narrative, The Patient Story offers a diverse collection of Hodgkin lymphoma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Name: Rachel E.
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4
Symptoms:
- Extremely itchy rashes
- Nausea
- Nosebleeds
- Severe fatigue
Treatment:
- ABVD chemotherapy
- Steroids
- Dexamethasone
- Antivirals
- Acyclovir

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Pre-diagnosis
Diagnosis
Treatment
Remission
- Processing the News
Realizations and Takeaways

I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.

Pre-diagnosis

History of Illness

Long before my diagnosis, I was ill for quite a while, and I suspect that I may actually have had cancer even then.

In my 20s and 30s, I was a lot heavier. Over the years, I started to lose weight very gradually and very subtly. Since everybody knows that middle-aged women tend to gain weight as they get older rather than the reverse, this was a bit of a red flag.

I have a son. When I was pregnant with him back then, I was really ill. I had obstetric cholestasis. I found out through research that pregnant women who have obstetric status in pregnancy are at greater risk of developing cancer.

At the time, I also experienced severe nausea and terrible itching on my palms, the soles of my feet, and so on. I was induced and my son was born early because there was a risk of stillbirth. After giving birth, I lost a lot of weight quite quickly—and I do know that a lot of women take a while to regain their shape after giving birth.

Aside from my experience during pregnancy, I was always suffering from diseases like respiratory tract infections—tonsillitis, bronchitis, a whole heap of stuff—one after the other. Whatever was going around, I caught it.

Initial Symptoms

I knew that something was really, really wrong in the spring of 2020.

I developed a rash on my arm and I went to see the doctors. But COVID had just arrived and the doctors had far more interesting things to deal with.

My frustration was mounting because I knew that there was something really, really wrong and no one can get to the bottom of it.

Diagnosis

First Appointments, Misdiagnoses, and Progression

The doctors said it was eczema and I said I didn’t get eczema that way, but they insisted.

The rash went away, but in the spring of 2022, it returned with a vengeance. It was worse than before. The rash was so extreme that I broke the skin several times by scratching and it kept me up at night. Yet they kept saying it was eczema.

I also suffered from dizziness and nosebleeds on various occasions. Dizziness while putting my washing out on the line, staying in the kitchen, and other times; recurring nosebleeds that may have coincided with my menstrual cycle and even took place around the time I miscarried.

One lump turned to 2 then 3 then 4, and before I knew it, my legs were all covered in lumps. My rash had spread to cover the whole of my body save for my face. It was so intensely itchy that I couldn’t sleep and had to keep spreading cooling cream on myself.

The doctor suspected that I had tuberculosis or an autoimmune condition and sent me to have a chest X-ray. I was thinking he was going completely down the wrong path, but at this point, I was absolutely desperate so I agreed.

Getting the Correct Diagnosis

I didn’t think the chest X-ray would reveal anything, but it actually showed a shadow on my lungs.

I was fast-tracked to hematology where I was sent for a CT scan, which revealed that the lymph nodes in my chest and neck were swollen.

A needle biopsy of one of the lymph nodes came back as what they thought was stage 3 Hodgkin’s lymphoma.

Finally, the doctors ordered a full body PET scan, which revealed that what I actually had was stage 4 Hodgkin’s lymphoma and that it had started to creep into the edge of my lungs.

I asked the doctor about chemotherapy. Life had been pretty rubbish up to this point and I was on the fence about whether to take it or not. If I didn’t take the chemo, I asked him how long I had. He said six months.

Treatment

Considerations

I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner like I had no options aside from either chemo or death. What I did know about chemo scared the living daylights out of me.

I didn’t want to lose my hair. I’ve always had really good hair and I’d literally die rather than lose my hair.

There was also fertility. I’m really, really grateful for my son, but I’ve always longed for another child. I’ve suffered two miscarriages. I don’t qualify for egg freezing because in the UK, if you have one child, you’re already a parent and are automatically disqualified from egg freezing.

I talked it through a lot with my husband, my sister-in-law, a psychologist, nutritionist, physiotherapist, and clinical nurse specialists and decided to get on with it, even though my first session on October 4, 2022, very sadly coincided with my parents’ golden wedding anniversary.

I behaved a little bit like a child when I got the diagnosis. I felt completely boxed into a corner, like I had no options aside from either chemo or death.

ABVD Chemotherapy and Medicines

My chemotherapy was a cycle made up of two lots of infusions.

My treatment took place every two weeks. I would go in and have these IV medicines put in my PICC line then I would have my chemo on the same day as well. My first chemo session was made up of the PICC line going in and my first lot of chemo.

My sessions were once every two weeks for six months. Every other week, I would have a pre-chemo appointment to make sure that I was well enough to undergo treatment.

By the way, it wasn’t just IV drugs. Every day I had to take medicine at home as well. I used to load my pill box and take pills at home: steroids, dexamethasone, and then antivirals, acyclovir.

Side Effects of Chemotherapy

I had loads of side effects. The doctor said I had pretty much every side effect under the sun.

The first time was the worst, definitely. I started feeling unwell in the chemo chair. When I got home, it knocked me out. For days afterward, my self-care went downhill. I didn’t have enough energy to do anything apart from go to the toilet and brush my teeth—and even that felt like climbing a mountain.

I felt very, very cold when the chemo went in. My whole body was really, really cold. I immediately started bloating like a balloon. I could feel my stomach swelling when the IV drugs were going in. I also immediately started feeling quite nauseous.

I would come home after treatment, change into my pajamas, and get into bed feeling very nauseous and very bloated. I’d have a lot of stomach pain, and I’d lie there and wait for it to ease off and get a little bit better.

I’d have a lot of little pain in my legs, like a burning sensation, from fatigue. My legs would sort of give way on me. I literally felt like, How on earth am I going to get to bed? The fatigue was just insane.

I’d wake up in the morning and feel really thirsty straight away. I suffered from hemorrhoids, constipation, ulcers, cuts, and angular colitis. Cuts at the corner of my mouth. The hemorrhoid pain was absolutely the worst.

All that being said, I’d never been hospitalized or even had a temperature.

Dealing With the Side Effects

Soup, fresh air, and hugs helped with the side effects. Basically, distracting myself, like with things to watch. A lot of comfort-watching—whatever made me feel good. Whatever was funny, lighthearted, or anything familiar.

It was literally pure survival mode, anything just to get me through.

Remission

Apart from the side effects, everything went amazingly well in terms of progress.

Two cycles in, I had a PET scan that showed that I’d had a complete metabolic response. The doctors said, “We couldn’t ask for better than that.”

Everything in me wanted to stop. Surely I’m cured. But they said it doesn’t really work that way so I had to undergo about four more months of chemo.

Eventually, at the end of the chemotherapy, about six weeks after it stopped, I had another PET scan that showed that I’d had a complete response.

All the scans after chemo showed the best possible results.

Hang in there. Be patient because your emotions do catch up. Just give them time.

Processing the News

When I was told I had the all-clear, I didn’t feel a single emotion. I didn’t feel shocked, sad, confused—not even happy. It wasn’t as if I’d reached the pot of gold at the end of the rainbow.

I think it was like that for different reasons. My life had been a struggle before I was a cancer patient and now that my cancer’s been dealt with, all my concerns were still there. I had to step back into it and continue with it.

Eventually, I felt really bad and guilty about this because there are people out there who want to live. I felt guilty that I didn’t feel happy.

I called the UK cancer charity Macmillan and asked for advice. I said, “Is how I feel normal?”

The lady I spoke with was ever so kind. She said, “You’re perfectly within your rights to feel exactly what you’re feeling. No judgment. No guilt. Whatever you’re feeling, even if you’re feeling nothing, that’s completely okay.” It was really lovely to connect with someone and hear those words.

I also found that having access to mental health services was absolutely necessary in terms of processing and moving forward. I had access to a psychologist through the UK National Health System. We determined that not everything that I talked about was related to cancer.

There were things we worked through that were issues before I had cancer, as well as those that will happen in the future. Honestly, I don’t think that my mental health would be in a good state right now if I hadn’t had access to a mental health professional.

Now, I feel really positive. Because I’ve realized that my life was saved for a reason. And that starts with getting my story out there.

Although initially, I wanted to look into medical negligence. I do believe my cancer could have been found years earlier with all my recurrent illnesses. I made a formal complaint in terms of the very late diagnosis of my cancer. I do plan to tell my story as well as complain. Now the complaint’s been dealt with.

Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before.

I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.

Realizations and Takeaways

To cancer patients and caregivers who may also be feeling numb like I did, I’d say, hang in there. Be patient because your emotions do catch up. Just give them time.

I also want to say that my faith helped me. I’m a Christian and I feel that it’s as if God had His hand over the cancer, hovering over the edge of my lungs, and caught it before it could enter a major organ. Now I can say that it was not my time to go, even though I felt it had been my time for a long time.

Your body is incredibly clever at telling you that something is wrong. I knew the rash was not eczema. I knew something was really out of balance and I shouldn’t leave it alone. If I had left it alone, I wouldn’t be here today.

I kept going back to the doctor because intuitively, I knew something was wrong. I think the body tells you before the brain does, and the brain catches up. It’s just that we don’t really stop to listen.

Cancer is a life-changing experience. I’ve heard it said that if you have cancer, you’re never the same person you were before. I feel like I had a near-death experience insofar as if my cancer hadn’t been found, I would have died. I think that if you have cancer and you’re still here to tell the tale, you’re still here for a reason.

It’s a chance to regroup, to really look at your values, what’s important to you, and what you want your future to look like, considering you nearly didn’t have a future. What is really important and what isn’t so important: family, life, work, and faith.

Thank you for sharing your story, Rachel!