Hodgkin’s Lymphoma: My Diagnosis Story

On 26^th February 2019 I was diagnosed with Hodgkin’s Lymphoma, which is a type of blood cancer. I started writing this blog post at 3am the morning after I received my diagnosis. I wasn't sure whether to publish it, but I've decided if it helps someone else, or raises awareness of lymphoma and its symptoms, then it's worth doing. So here we go...

What is Hodgkin’s Lymphoma?

Hodgkin’s Lymphoma (HL) is a type of blood cancer. Around 1,700 people in the UK are diagnosed with HL every year (source: macmillan.org). It can affect people at any age, but is more common in people who are 20 to 34 years old, or over 70 years old.

Early symptoms

It started one Friday evening in October 2018 when I found a lump the size of a golf ball in my armpit. Initially I freaked out. Then I convinced myself it was ‘probably nothing serious.’ However, as soon as Monday rolled around I booked an appointment with my GP.

The first doctor I saw didn’t seem to take me seriously (“It’s probably just a minor infection”). I was sent home with antibiotics and told to come back in a couple of weeks if it hadn’t gone away.

It didn’t go away, so two weeks later I found myself back at my GP’s. The second doctor I saw was so helpful. She performed an exam and found that, as well as the lump in my armpit, I also had several smaller lumps in my neck. She ordered blood tests to check for infection and, when they came back inconclusive, referred me to a haematologist.

My haematology consultant ordered more specialist blood tests to rule out any autoimmune diseases. I also had a CT scan which showed I had enlarged lymph nodes in my chest. The specialist blood tests were inconclusive, so at this point the only remaining option was to biopsy one of my lymph nodes.

Lymph Node Biopsy

Before my operation (which I had under general anaesthetic) my symptoms rapidly got worse. A larger lump formed on my chest, I felt constantly exhausted and I was getting out of breath easily.

My operation was booked for the first week of February. However that morning I spiked a temperature of 39.1⁰C and had a pulse over 140bpm (not good). I was too sick to have the operation, so I was re-booked for 2 days later. When I eventually had the procedure it went smoothly and I was able to leave hospital on the same day to recover at home.

My Diagnosis

There was a 2 week wait to get the results from my biopsy, and it was agony. I was deteriorating rapidly and felt so ill I could barely leave the house. I tried to tell myself not to assume the worst until the results came back. However in my gut I knew there was something seriously wrong with me.

On the day of my appointment I took my mum with me, which turned out to be a good decision. After receiving my diagnosis I was a bit of a mess, so she was able to listen and take in all the information on my behalf.

Everything moved quickly from there. My consultant explained I would need 6 months of chemotherapy. With treatment, over 90% of people with Hodgkin’s Lymphoma make a full recovery (I like those odds).

The next available appointment to start my first round of chemo turned out to be the following day. I had the option to wait, to give me time to get my head around what was happening, but I didn’t want to delay.

I spent over an hour at the hospital speaking with the haematology nurse. She talked me through all the possible side-effects of chemo, ranging from serious infection to losing my hair. I cried (a lot) as there was a lot of information to take in. I'm glad to say it's become easier with time. Chemo sucks, but I just keep reminding myself that it's what I need to get better.

Telling Friends and Family

After getting home from the hospital, I spent the rest of the day glued to my phone. I tried to personally phone as many people as possible, but I was getting too upset so I asked my parents to help with contacting my extended family. I also asked close friends to pass on the news to other friends who had been asking after me.  

That day was the worse day of my life, but by the end of it I felt a sense of relief. I finally knew what was wrong with me. Ultimately that meant I could start focusing on getting better.

Getting support

If you’re experiencing symptoms of lymphoma then it’s important to get checked out as soon as possible. Don’t back down until the cause of your symptoms has been found. I was 27 when I first went to my GP and I think it was easy for them to dismiss me because of my age and the fact I'm usually fit and healthy.

If you’ve been diagnosed with HL and are looking for support, there are so many organisations out there such as Macmillan Cancer Support and Lymphoma Action. I've also joined the following Facebook groups:

• UK Hodgkin's Lymphoma Support Club
• Shine Young Adult Cancer Support
• Trekstock Young Adult Cancer Support Community
• Cancer Chicks

My family and friends have been amazingly supportive over the past few months, but speaking to people who have been through (or are going through) a similar experience has really helped me.

Thank you so much for reading if you've got this far! If you have any questions, please feel free to reach out to me on twitter @samgriffblog or Instagram.