Zoe

I always knew that I wanted to run my own business, buy a house and become a mum at an early age. At 21 I had set up my own business as a qualified make-up artist and had bought my first house with my boyfriend. Seven months later, and at the age of 22, I became pregnant; it seemed that everything was going to plan. As a business owner, homeowner and expectant mum I was so happy and grateful for everything I had. I have never felt more content than when I was pregnant, and I was looking forward to balancing my business with being a mum. But then I received a diagnosis of lymphoma shortly after giving birth to my daughter, and everything turned on its head. 

At about 32 weeks pregnant, I started to feel breathless on a day where I had a diary full of make-up clients. As the morning went on, I struggled to hide it and I remember going downstairs and saying to my partner that I felt like I couldn’t breathe properly. With 20 minutes to go until my next client, I called 111 who wanted to send an ambulance. At that point, I didn’t feel I needed it so I asked my remaining clients to come earlier so I could take myself to the hospital.  It felt like I had pressure in my chest, along with a cough, but I just thought it was due to being heavily pregnant. 

At the hospital, I had blood tests and an X-ray which revealed a mass in my chest. Initially, it was suspected that I had an enlarged heart. I was sent home and told I would be called back in for further tests, but shortly after I received a call to say that they were now testing for a number of other conditions – including lymphoma. 

At this point, I was told that the chances of having lymphoma were quite small. I pretty much ruled it out, as I didn’t have any of the typical symptoms and I felt I didn’t fit the ‘textbook’ criteria for the condition. But as soon as my baby was born at 37 weeks, I started to experience sudden weight loss, night sweats and itching. If I wasn’t already undergoing tests, I honestly would have put these symptoms down to those you can experience postpartum. The weight loss could have been due to breastfeeding, for example, or the night sweats due to hormones. It was lucky that I trusted myself to get my breathing checked initially as ultimately it saved my life.

I really didn’t think that what I was experiencing could be cancer. I didn’t feel unwell, I have no history of cancer and I didn’t think that it would be possible to fall pregnant if I had cancer. But of course, this all turned out to be false as further PET/ CT scans and a biopsy taken shortly after having my baby confirmed a diagnosis of lymphoma. At that stage they didn’t know what type I had. 

I received the news on the 23 December 2022 and whilst I felt fine about it and wanted to get started with treatment, telling my friends and family was so hard and I felt like I had ruined everyone’s Christmas! I wanted to stay positive for everyone else and thought that it must be harder for them than it was for me. But I still couldn’t help but wonder whether that Christmas was going to be my last. 

A couple of weeks later, in January 2023, it was confirmed that I had primary mediastinal large B-cell lymphoma, a type of non-Hodgkin lymphoma.

I was told that treatment would involve six rounds of R-CHOP chemotherapy before moving on to radiotherapy.  I started chemotherapy a couple of weeks later, and by March the tumour had shrunk from 12cm to 1cm. I had concerns about the long-term effects of radiotherapy, so asked if I could be considered for proton beam therapy instead. My case was accepted, and in July I started the first of 18 daily sessions.  Although I was told about the possible side effects, I tolerated the treatment really well. The side effects of the chemotherapy floored me, but I felt like I had smashed radiotherapy! I started to feel more confident as I felt fine, but sadly a scan a couple of months later showed that the tumour had grown again – and was up to 2.5cm.

That was by far the worst news that I received during my journey. I went to the consultant’s appointment alone convinced I was going to be OK, but actually I am glad I was by myself when I was given the news that first line treatment had failed. I try to hold things together when others are with me, but that news gave me a panic attack with the realisation of having to go through it all again – biopsies, scans and treatment. I felt so sick through the stress of it all. At that point, I opted to go onto active monitoring rather than have further tests to determine whether the lymphoma was still active. As it turns out I couldn’t have a biopsy anyway due to difficulties reaching the tumour. The tumour grew – reaching 6cm in quite a short period of time, which was enough to confirm to the medical team that the lymphoma was  still active and needed further treatment. 

Christmas 2023 was spent knowing that I had more chemotherapy to come in January 2024. My medical team suggested I receive a trial treatment of R-ICE chemotherapy and pembrolizumab as an inpatient. The tumour shrank back to 2.5cm quite quickly, but I was so frustrated as another scan at the end of my treatment in March showed no further change.  

At this point, my team said I was eligible for an autologous stem cell transplant. I was disappointed, as I wanted to have that treatment after being told I was in remission, in order to prevent the lymphoma coming back. I felt really hesitant about having it while there was still a trace of the cancer, but it turns out that I wasn’t able to receive it in any case. My body was struggling to produce the level of bone marrow needed for stem cell production and during that period of receiving white blood cell injections to boost my bone marrow and prep my body for the treatment, the tumour increased in size again and was back up to 6cm. 

I was no longer eligible for the stem cell transplant, but was told that I would be eligible for another line of treatment – CAR-T cell therapy.  

As I write this in May 2024, I am preparing for the CAR-T cell procedure. I will soon undergo the process of ‘collecting’ my T-cells, and will start a course of immunotherapy drugs to keep the tumour in check. I will receive a PET scan after the immunotherapy, and am hopeful that by that time I will be in remission ready to receive CAR-T cell therapy in July (once my cells have been returned from a special lab in Amsterdam)! My plan is to carry on as normal while I am on immunotherapy, but I know I will be kept in hospital for a couple of weeks following CAR-T to monitor for any side effects from the treatment. I will then need to stay in accommodation close to the hospital for another two weeks, so all in all I will be away from home for four weeks. 

My final PET scan should be in August, and there is a big chance I could receive my results on my 25th birthday!  In the meantime, I am keeping positive as I have a good treatment plan that I am happy with and I just want to get going. 

My message to anyone who has received a cancer diagnosis is that you are braver and stronger than you think. The word ‘cancer’ is a big one and when you are first diagnosed, it is really scary regardless of your treatment plan or prognosis. But I was able to deal with it a lot better mentally and physically than I thought. I am still in the midst of it all and still smiling, but I do still allow the space to let the bad days in. When you are in it you can still live your life. There are days when I am sick but so grateful on the days when I feel OK. It has certainly given me a new outlook on life - which is a beautiful thing in an awful situation.

Zoe has shared her story with us as part of our Let’s talk lymphoma awareness campaign running throughout Blood Cancer Awareness Month in September. She also documents her story to raise further awareness about lymphoma on her social media channels:

Tiktok - zoeplastiras 

Instagram - lymphomaawarenesszoe 

Find out more about how you can get involved in our campaign this September to raise awareness and funds to support our work.