Evgenia

I have always been an active person, so before my lymphoma diagnosis I was living an energetic lifestyle playing tennis, practicing yoga, meeting with my friends and spending time with my husband and family. I enjoyed travelling when I could get the time off, as it was and still is one of my favourite ways to recharge. I was also working as a Consultant in Sustainable Finance, which took up a lot of my time before I got diagnosed. 

About four months before my diagnosis, at the beginning of 2023, I started experiencing strong headaches and a couple of months after that I developed a cough which would get worse by the week. I also started having night sweats and noticed rashes on my skin. My energy levels dropped significantly throughout this whole period, but I thought I was just tired from work and the wedding planning I was doing back then. I definitely didn’t suspect that I had cancer at this point.

As time went on, my symptoms got worse and I decided to visit the doctor. For a few months I was going from one doctor to another, undergoing different diagnostics, blood tests and speaking to various people who had different opinions. Even though I had decided to go down the private healthcare route, the waiting time to get things done was very tiring and felt like it took forever. In the meantime my symptoms were getting worse, and I was stressing a lot about the amount of unknowns that were by far outweighing the knowns. It felt like I was losing the ground under my feet. 

For me, one of the most stressful parts throughout the whole period, mentally, was the wait to establish the right diagnosis and treatment. I finally received my diagnosis four months later in July, after a friend recommended a very good physician who referred me for a biopsy and a PET/ CT scan. I was told that I had stage four primary mediastinal B cell non-Hodgkin lymphoma. I felt relieved and grateful that I finally knew what was going on. 

After receiving my diagnosis, things started happening very quickly. I met my oncology team a few days later, and was told that in less than a week I would start six cycles of R-CHOP14 chemotherapy. In the meantime, I went to see the specialist in reproductive gynaecology with my husband. She told me that there was not much that could be done in terms of fertility preservation at that point, as the cancer was already too aggressive and I had to start treatment as soon as possible. It was another shock for me but I have decided that I will think about it later. I had spent a lot of time talking about the potential situation where I won’t be able to have kids in the future with my psychologist, because I always dreamt of having kids. But I guess at this point I felt that choosing to save my life by starting the treatment immediately was more important than making decisions about children.

I had my first chemotherapy round on the 6 August 2023.  For the first one, I was admitted to the hospital and for the rest I was treated as an outpatient. I had a CT scan every two weeks to see how the tumour was responding and the progress was really good. I completed this treatment in October 2023 and was told I had a complete metabolic response. In December 2023 and January 2024, I had a further two high doses of methotrexate chemotherapy as a preventative measure. I was admitted to the hospital for these rounds, and I found them the hardest as I was connected to the drip for 24 hours, for six to seven days each time. 

In terms of the side effects, my hair started falling out in between the first and second chemotherapy cycles, so I decided to shave the rest off. My teeth got very sensitive soon after treatment started and started losing colour, which was very uncomfortable and I also had tiny ulcers after the first few cycles. I was eating a lot, because I was on steroids from the very beginning and managed to gain weight. However I went on to lose my taste so eating was not the most pleasurable activity and I craved strong tastes, because I couldn’t taste much at all. I also started feeling numbness and tingling in the feet and hands (peripheral neuropathy), which was worsening with every day. I remember starting to feel weak towards the third cycle and had days where I felt so fatigued I couldn’t get up at all.  I had a blood transfusion once to help with that in between cycle four and five which boosted my energy level a little bit. 

To be honest, I thought that treatment was going to be worse than it actually was. I  was able to cope well with the side effects that I had. From the beginning of the treatment I was doing Zoladex injections for half a year that resulted in a medically induced menopause. I started having the hot flushes regularly, which I can say I didn’t enjoy, but overall that was manageable as well. 

From the emotional side of things, however, this was a very challenging period. I had a lot of fears but tried to keep my head cool. I told myself that while I need to make the decisions, I should stay calm and rational, and I agreed that I will let myself deal with the emotional side of things later, which I did afterwards - in therapy. What was helping me at the time was the ability to share my concerns with my family, discussing my thoughts, emotions and fears. Talking through everything with someone helped me to calm down a little and act as rationally as possible. I have done a lot of work with my psychotherapist and did mental and physical exercises regularly to have the emotional stability during this period and to make sure I keep a positive attitude.

In February 2024 I had a follow up PET scan after being told I was in remission. An activity was observed in my thyroid gland and then in April 2024 it was confirmed that my lymphoma had relapsed. Shortly after I started a second line of treatment- Brentuximab with Nivolumab, which is a relatively new type of treatment for my type of lymphoma (it was previously only used as a bridging treatment before a stem cell transplant). As I write this in September 2024, I have been told that I have had a full metabolic response to treatment and that I am back in remission. I still need to complete my remaining treatment cycles (eight in total) and I will then continue with another eight cycles of Nivolumab on its own until May next year if all goes well. 

I hope that the next step for me is actually living my life! I am getting stronger every day and recovering quickly. I missed the feeling of feeling alive, because I put my life on hold during the first round of treatment. Thinking back about this, I don’t know if it was the right decision or not, but I was just very gentle to myself and that was probably what was right for me then.  When I started the second round of treatment a few months ago, I promised myself that I will try to be as active as my physical and emotional condition allows and so far I am holding myself accountable to this promise. I have started doing sports again on a regular basis, travelling a little bit and I plan to continue to do so. I also wrote down a list of things I have been putting off for a long time (before cancer) and I am slowly starting to implement them into my life, making this list shorter and shorter. 

Navigating through the various stages of treatment was challenging, both physically and emotionally. I have felt a lot of conflicting emotions - I felt frustrated, lost, angry, scared and helpless but at the same time I felt that I needed to be strong and patient and to try my best to get through it all somehow. I also felt a lot of kindness, support and love from other people, but also within myself and toward other people while I was ill and recovering. I felt that cancer has changed me a lot as a person, I have matured a lot, became much more resilient, patient and I realised that I am allowed to be angry about things that I am not comfortable with or strongly disagree with. I learnt how to live by my values and to protect my boundaries.

I would advise anyone who has been recently diagnosed with cancer to try not to close yourself off from friends and family, share your feelings with the people you love and let yourself be vulnerable. I would also say don’t think twice about getting any sort of psychological support throughout this period. I promise you, it will make your life much more bearable during this tough period. 

During this time, I worked with different psychotherapists and tried different psychological approaches, and I have discovered many useful exercises to process my feelings and deal with trauma. This process inspired me to create a journal specifically designed to support others who are facing similar battles. The journal is intended to be a safe space for patients to express their emotions, reflect on their journey, and find moments of peace and encouragement. I am dedicating a lot of my time to bringing the emotional self-help journal to life, which is a very dear project to my heart. My mission is to help people who need emotional support during this challenging period, to give them tools to cope with their feelings and to improve their emotional well-being. I want to help others make their cancer journey a little easier and remind them that they’re not alone. I’m always open to sharing my experiences in more detail if it can benefit someone.

Evgenia also documents her story to raise further awareness about lymphoma, and the steps she took to support her wellbeing on her Instagram account: zhenyas.journal.