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Published on: 10 July 2024

Zoe talks about her diagnosis of diffuse large B-cell lymphoma, decisions around fertility, treatment and hair loss.

Zoe

After finishing university in 2021 I went on to work as a Trainee Associate Psychological Practitioner supporting people with cancer, however I was working in a different role in health care when I got my diagnosis. 

I felt healthy and enjoyed running, going to the gym, and keeping active, but had noticed a lump on my neck which had been there a couple of weeks, so decided to go to my GP. A nurse told me not to worry and that it is probably a raised lymph node but that they would do bloods anyway. Then, the day after my 26th birthday I had a scan of my neck and got a referral to ENT (ear, nose and throat) there and then. I also had to have more blood tests, a CT scan, and an MRI scan. They were taking this really seriously.

I had two visits to ENT. In the first I had a camera up my nose and a biopsy of the lump and in the second I had another biopsy and got told I had cancer. 'You have cancer, and you will probably need chemotherapy' was all I heard, and it didn't even feel real as I automatically thought the worst. Then I had to wait for the results to come back. This was a really difficult 2-3 weeks. The results revealed that I had diffuse large B-cell lymphoma, a fast-growing non-Hodgkin lymphoma. It all went over my head and I was terrified at what was to come, knowing how serious it was. The nurse helped me to find a wig and at this point I had a PET scan. It was a lot. 

I had to make quick decisions like undergoing fertility treatment.

Zoe

I had to make quick decisions like undergoing fertility treatment in case the treatment made me infertile. I decided I wanted to go ahead with fertility preservations, which would take a month, so in October and November 2023 I was going back and forth to Manchester. I was glad I was able to do this, but it was a difficult time, and I got a lot of support from my friends and family. I had to administer the injections myself and by this point the lump in my neck was growing so rapidly I didn't even have a jaw line. My consultant said it was now classed as 'bulky disease' and he was keen for me to start chemotherapy as soon as possible.

My family were involved from the start. I had told them about my concerns over the lump in my neck, and at that point they didn’t seem too worried. They said it was probably a raised lymph node and lots of people get them, but they have been a fantastic support and were with me at all my appointments. This was so valuable. My gut feeling was that something was wrong as I’d never had anything like that before and I’m very glad I listened to it. My scan appointment on my neck was actually cancelled but luckily, I didn't get the message and turned up anyway. I dread to think what would have happened if I didn't go to it as they managed to find someone to do the scan since I’d turned up. 

I was to have R-CHOP chemotherapy and after a visit to my regular hairdresser I decided to cut my hair to bob length so that it didn't feel as drastic when it started to fall out. She came up with the idea that I cut my very long hair off for charity; The Little Princess Trust, a charity that provides real hair wigs, free of charge, to children and young people who have lost their own hair through cancer. Up until that point, I had only told my family and close friends, but I advertised my fundraiser on Facebook where I told my story and tried to raise awareness and lots of people got in touch. This kept me going and I was grateful to receive gifts and some really encouraging messages. In the end, I raised £2,105 for the charity but it was difficult losing my hair and I lost a lot of self-confidence. By Christmas eve I was desperate to have it shaved off due to how painful my scalp felt. I'd already noticed hair loss and despite it being Christmas we managed to find a hairdresser. Fortunately, shaving my head instantly relieved the pain and it was a great Christmas. 

My first session of R-CHOP went well, and I tried to carry on as normal. I noticed that the lump in my neck had already shrunk after just one round. If anything worried me, I contacted the hospital chemotherapy helpline and found the Lymphoma Action Facebook group a fantastic source of support. There was also someone my own age I spoke to almost every day from the Lymphoma Action Support Group, and this was particularly helpful as most people I’d met were a lot older than me and people regularly commented how young I was when I was on the wards. 

The treatment was tough though and I was really poorly. 

Zoe

The treatment was tough though and I was really poorly. I had to have my medication changed and the treatment was taking it out of me. I relied on my family when I was struggling and could only take a day at a time. It was really hard to get used to all the medication. some days I had to take up to twenty tablets and I didn't expect the injections which were to increase white blood cells. I'd got used to injections during the fertility treatment process but each time it was hard and draining, and although I’d never been bothered by needles before they were really bothering me now. 

There’s a lot involved in a cancer diagnosis that people don't realize and due to all the blood tests and consultations, the days felt like they were dragging, and I couldn't help but compare myself to other people. I felt like I was losing a lot of valuable time and missed 'normal life' that wasn't so focused on my health, so I also decided to get some support from cancer care and started having counselling.

I had a scan halfway through that said I was in remission and getting this news really helped. I felt like the treatment was working and it kept me going. There were days when it seemed so tough, but I kept reminding myself that I had got through other cycles of the chemotherapy and can do it again. 

At the end of treatment, my team suggested I have radiotherapy as the lymphoma had been in one area and bulky. However, my consultant had continuously said throughout that we might be able to get away without it, so I kept that in mind. I had a consultation with an expert in radiotherapy who went through the pros and cons, and I have decided not to have this, so my treatment is officially over. 

As soon as I could, I went on holiday, and this worked wonders for my hair growth. It was also to celebrate the end of treatment and to mark the end of my cancer journey and it was a very memorable holiday spent with family making up for lost time.

Before my diagnosis, I took everything for granted. This diagnosis has made me contemplate everything. I feel more like myself now than I ever did before and have been thinking a lot about what I have done and what I want to do in the future. I especially want to travel, see new cultures, and new places. I don’t want to waste a second. 

When I was diagnosed, I decided to stop working to focus on my treatment. Now I feel a great empathy for people and will take my time to decide what I want to do now. For me, everything happened really fast, and I think the hardest parts were telling friends and family, coping with uncertainty, and having difficult conversations with everyone involved. I would urge others to reach out for help, as everyone has been so lovely and supportive, and I can't thank everyone who supported me enough. The nurses couldn't do enough for me, and it has revealed my true friends and made my relationships even stronger.  

Check out our personal story section where you can read people's experiences of different types of lymphoma and treatments.