Hayley

Hayley talks about her experience of Hodgkin lymphoma, adapting to a new life and finally accepting that it is OK to be angry about what happened.

Hayley

I had been studying management and had worked really hard to secure a one year placement through the University of Central Michegan at Disney, Florida in 2009.

Although I was only 20 at the time, I’d been saving hard and looking forward to this exciting time in my life. I was there for less than four weeks when I was diagnosed with lymphoma.

Looking back, I had been feeling unwell for quite a while and certainly the entire time I was in the USA. I had an awful itch and a rash which was getting worse. I had been out for the day and was in agony with pain at the top of my back. That evening I collapsed after having a shower. Luckily my flat mates were in and took me to the emergency room (ER).

Fortunately, the university include their own health insurance for students, and Disney included health cover. 

In ER all I wanted was my family, but they were so far away. I felt I couldn’t call them as they would only worry, and I still felt sure it was nothing to worry them about.

When they first examined me they noticed the wounds on my legs from the itch and thought I had a deep vein thrombosis (DVT). They arranged a CT scan, expecting to find a clot, but instead they found a 9.5cm mass on the right side of my lung. They then felt an enlarged node on my neck and seemed to suspect lymphoma straight away.

A biopsy was arranged so that a diagnosis could be made.  At this stage, I decided to phone my Mum. I still worried that I would be making her anxious for nothing, but really needed to speak with her. Although I dialled the number having no idea what I would say, in the end I just blurted everything out. She told me that she and my dad would try and be with me as soon as possible.

 
I dialled the number having no idea what I would say, but in the end just blurted everything out.
Hayley

The biopsy was carried out later that day and as I was coming to from the anaesthetic I could hear a Mancunian accent. You don’t hear too many accents like that in Florida! My parents had managed to get a flight that day and were standing by my bedside. I can’t tell you how relieved it was to see them.

The biopsy revealed I had Hodgkin lymphoma and the consultant explained that my treatment would start straight away. They said that they would carry out the first chemotherapy in America and then I could return home for the remainder of my treatment.

My sister and grandma rang up my GP, who immediately got in touch with both my local hospital and a major cancer centre nearby. When I got home I went to visit both hospitals. Although the big centre was further away from home, it had an oncology unit for young people, and seemed to have a lot more services for someone my age. I instantly felt confident in the consultant, who had a lot of experience of treating people with Hodgkin lymphoma.

I had six cycles of ABVD chemotherapy followed by 15 fractions of radiotherapy to my neck and chest to make sure the cancer cells were gone. I finished treatment in April 2010, and was delighted when I was told that the treatment had been successful.

But I felt the experience of lymphoma had changed me. Even today I look back and think: ‘What the hell just happened?’

 
What the hell just happened?
Hayley

At 20, I was just finding my feet as an adult, enjoying being independent and developing a good social life. But the treatment left me feeling anxious and depressed. I found I didn’t have the attention span to do anything and started to have panic attacks.

I lost my elbow length hair; yet another thing that made me feel less ‘me’, and I struggled with peripheral neuropathy.  In addition, I worried that I may not be able to have a family, something that I had always assumed would be part of my life. I wanted to be a mum, and although the medical team had suggested that the risk of losing my fertility was relatively low, I felt it was yet another loss.

I felt angry that lymphoma had taken everything away from me and it has only been recently that I have accepted that it is OK to be angry But I also realised there was help and support out there.

So I told my medical team how I felt and they organised for me to see a psychologist, which really helped.

I felt all the certainties of my life that I had taken for granted were now gone and the future looked very uncertain to me. Having a cough or cold made me anxious that the lymphoma had come back. Life seemed really challenging at that point and I felt very much like an outsider.

 
Having a cough or cold made me anxious that the lymphoma had come back. Life seemed really challenging.
Hayley

My family were amazing and really helped me through. For example, when I had lost my hair, my younger sister would wear a head scarf when we went out, so that people wouldn’t focus on me. Slowly I began to feel more myself again.

I went back to university to finish my degree, but that last year was very different to the first couple of years. I don’t think people knew what to say to me, so tended to avoid me. I was still suffering from fatigue and peripheral neuropathy from the treatment, so wasn’t involved in the drinking and party culture and found that the invitations quickly dried up.

I was delighted to gain a 2:1 in my degree. Shortly afterwards I met my husband and was shocked but also absolutely delighted to discover I was going to have a baby, something I hadn’t expected to happen to me. I struggled with morning sickness and was anxious throughout the pregnancy in case anything went wrong, but the care I received was fantastic. My son was born in May 2014 and it felt amazing. I then went on to have my daughter in March 2017.

Finally, I would like to urge anyone who has any health concerns to get in touch with their GP and if they are struggling with mental health to not be afraid to seek help. It’s something I wish I had done sooner.

 
I wanted to share my story through Lymphoma Action and would urge anyone who has health concerns to contact their GP.
Hayley