Maddie

At the beginning of 2022, I was getting on with my life as a teacher, living and working in London. I was 30 and hadn’t ever had any health issues.

In March 2022, I noticed a number of things that were worrying me health-wise. At the time they seemed fairly random and at first I didn’t think they were connected. I had developed a lump at the side of my neck that felt about the size of a Malteser. It wasn’t painful, but it wouldn’t go away.

In addition, I had a really bad, chesty cough that wouldn’t go away and I was struggling with breathing. The strangest symptom was the pain I was experiencing very shortly after drinking any alcohol.

I went to visit my GP and mentioned the cough and the breathing in particular. He thought I might have developed asthma and prescribed me antibiotics, but suggested
I return if nothing improved.

The antibiotics didn’t help. The symptoms seemed to be getting worse, particularly the alcohol-related pain which was now so bad that I had stopped drinking and socialising. I went back to the GP. 

My GP organised for me to have blood tests, which indicated I had a really high Erythrocyte Sedimentation Rate (ESR) which is an indicator of inflammation. As a result, a chest X-ray and CT scan were arranged which showed there was something in my chest. In addition, I had a PET/CT scan and a biopsy of my neck.

A few days later, I was teaching at school and I received a phone call. I was told I had stage two Hodgkin lymphoma in my chest and neck. I just walked out of the school in shock. I felt devastated and terrified.

You hear about people getting cancer and wonder how you would feel if it was you. But nothing prepares you for what it’s like.

At first I started questioning why I had lymphoma. Was it my fault? Have I done something to cause this? Have I not treated my body well? Having read more about it, I understand that there is no clear cause of Hodgkin lymphoma and that it isn’t because of anything I have or haven’t done.

The other strange reaction I had to the diagnosis was embarrassment. I was dealing with something that no one else around me was having to cope with and I felt awkward speaking about it. 

In truth, I also felt some relief that there was an answer to these strange symptoms that were just not going away.

Maddie

It wasn’t just in my head and at least I now knew the cause of the symptoms and that, hopefully, with treatment things could improve.

I was told I’d have five cycles of ABVD chemotherapy (Adriamycin, bleomycin, vinblastine and dacarbazine).

Before treatment started, I was referred to a fertility specialist who told me I had the option to freeze my eggs if I wanted to, but it would take six weeks to do this and would delay starting treatment.

I talked it through with my doctor who explained that the chances of infertility with ABVD were low, so I decided to start treatment as soon as I could.

It took me a little while to understand that I had to put my trust in my healthcare team. Here were a group of people I didn’t know but who were making such important decisions about me. They took the time to explain the treatment I would be having and the possible side effects. I asked lots of questions, particularly about relapse, which really worried me, but they explained that there were a variety of options available if this happened.

I had the choice of chemotherapy followed by radiotherapy or more cycles of chemotherapy. My consultant felt it was better to go with chemotherapy alone, particularly bearing in mind my age.

I found the chemotherapy really hard both physically and mentally. On the first day I found it traumatic and was very sick. I had the same problem on the second occasion, and the nurse explained that she suspected I had developed anticipatory sickness that was triggered by the smell of the hospital.

I took a different friend or family member with me to each chemotherapy appointment which I found really helped me.

I managed as much as I could and started to recognise the pattern. For the first couple of days after chemotherapy I would feel very weak, tired and groggy. After a couple of days things would start to improve.

I realised I needed to take it one step at a time and found it was more manageable than I anticipated it would be.

I knew I was going to lose my hair but decided not to shave it off and see what happened. It somehow felt more empowering to me. As it turned out my hair fell out slowly, although by the third chemotherapy it was starting to fall out quickly.

I am obsessed with my hair, so losing it was difficult, but I decided to wear wigs and use this time as an opportunity to try out lots of colours and styles.

Maddie

I’m naturally a brunette with long hair and had always wanted to go blond but had never taken that step. In fact, I took the opportunity to try out lots of different colours and styles. I actually surprised myself at how adaptable I was about my hair and enjoyed the variety. It was also far less effort than looking after my own hair!

I had an interim PET scan after my third chemotherapy which showed that I was responding to the treatment. On the scan it looked like there was something in my
left breast, which was worrying. The doctor looked into this and reassured me that it was a benign lump caused by hormones from chemotherapy.

I had my last chemotherapy on 15 November 2022 and was told I was in complete remission on 21 December 2022. My boss and colleagues have been really supportive and adaptable and I started back at school after the Christmas break. It was quite soon to return to teaching but it felt right for me.

Going forward, I want to take my health and fitness more seriously and build up my strength and get back to being with my friends. At first, I felt guilty about going out with friends and when I did I felt uncomfortable and overwhelmed. I was worried about my immune system being low and catching something. I also felt more comfortable sticking with a routine. But I realise that staying in made me feel worse and was stopping me from feeling normal again. 

Social media really helped me, particularly people who share their stories on Instagram, TikTok and on sites like Lymphoma Action. I wanted to share my story, but I wasn’t sure how much I should tell people or how much I should keep it to myself. I felt better being open and avoided awkward conversations with people who I didn’t know very well.

Looking back I have found it mentally and emotionally really hard. I started to develop health anxiety and every little thing makes me worry. I suppose I became a bit obsessed with my body about what was right and what was wrong.

Macmillan offered counselling sessions and my GP referred me for ‘Change therapy’. It has been described to me as post-traumatic stress disorder (PTSD) as a result of the speed and trauma of the cancer diagnosis. The therapy is definitely helping; I recognise that it helps to reach out and talk about things that are worrying you.
I am very close to my family and friends and like me, the diagnosis was a total shock. They were incredibly supportive but found it really hard to see me going through the diagnosis and then the treatment.

I am very proud of how adaptable I have been and now realise that most of us don’t realise how strong we are until we are faced with going through something like cancer. I’ve still got a lot of ‘coming to terms’ with this to do but feel far more appreciative of life, far more content and have much more of a zest for life than before this experience.

And I live life by a new motto ‘Health is wealth’.

Maddie shared her story with us as part of our Let’s talk lymphoma awareness campaign which ran throughout Blood Cancer Awareness Month in September.