Jess

I was living and working in London, loving my life and job. But in October 2023, I woke with excruciating chest pain, which I thought was because I had slept awkwardly. But the pain didn’t budge, so I went to my GP.

My GP thought it was a strained muscle, which reassured me to start with, but the pain didn’t go away. In addition, at the start of January 2024, I notice my face looked swollen. It wasn’t dramatic, but I could tell. I was also getting breathless and sweating at night. 

I went back to my GP who took bloods and was talking about physiotherapy. A couple of days later, I felt I was really deteriorating and noticed a lump under my arm, so went to A&E. I worried I was wasting their time, but because of the lump, they organised an urgent ultrasound. The ultrasound showed I had a pulmonary embolism with multiple blood clots around my neck and arms. A CT scan was carried out that day which found a large 14cm tumour in my mediastinum. The next day I had a biopsy from the lymph node in my neck to ascertain what was going on.

I was put on steroids and other mediations immediately and was told they needed to wait for the results of the biopsy to determine what treatment to give me.  Unfortunately the biopsy was inconclusive, but they ascertained it was a type of B-cell lymphoma, most likely primary mediastinal. They explained that my case had been discussed at an MDT where they had talked about waiting for repeat biopsy results or proceeding with treatment based on the information they had. 

Because of how ill I was, treatment was started with R-CHOP chemotherapy in February 2024. When a conclusive biopsy came back, I had a diagnosis of primary mediastinal B-cell lymphoma (PMBCL).

I expected to find the chemotherapy difficult, but I didn’t find it too bad and tried to get on with my life in between treatments. 

The worst part was losing my hair. Friends and family started a ‘GoFundMe’ for a bespoke human hair wig. The wig changed everything for me and made me feel myself again and not like a visibly sick person. 

At the end of the six cycles of R-CHOP a scan showed that the lymphoma had grown. My medical team decided to do a different type of chemotherapy, R-DHAP, which I found worse than the R-CHOP. It could have been that my body was already weaker with treatment, but I also found the four days of treatment at a time tough. But the R-DHAP did nothing, so radiotherapy was discussed. 

From the end of September 2025, I had the first of 18 fractions of radiotherapy to my chest, which they hoped would do the job. This was followed by a long wait until January 2025 for the scan results. The scan wasn’t carried out immediately because of the risk of showing inflammation rather than a clear picture of whether the treatment had worked. 

Although the tumour they had targeted had gone, new ones in my adrenal gland and my tibia had appeared. I was told it was rare for PMBCL to spread and I was devastated. 

It’s not good hearing your lymphoma is behaving in an unprecedented way. It’s really not easy knowing that treatments aren’t working. On top of that I had a clot in my chest that did not heal properly and now they were talking about putting a stent in as well as treating the lymphoma.

I had a conversation with my medical team about CAR-T cell therapy. I was told that the stent would be needed for me to be accepted for this treatment, so a stent was put in in February 2025. The experience felt traumatising to me. 

I got the go ahead to have the CAR-T cell therapy and my stem cells were harvested in February 2025. Then came the wait for the stem cells to be created into the CAR-T cells. I then had chemotherapy in preparation for the treatment. 

I felt optimistic that the CAR-T would be manageable, but I found it very difficult. I suffered with vomiting, diarrhoea and felt generally really unwell. I had seizures and was taken to the ICU. I did not know where I was and couldn’t speak. It was awful. This lasted for 5-6 days after the stem cells were given back to me. After those 6 days, it was fairly smooth sailing and over the next two and a half weeks I gradually got stronger until I was able to go home.

I got the all clear on 1 August 2025. The CAR-T cell therapy had been really hard, but was so worth it for me. 

Since treatment finished, I do get sick a lot of the time and have been in hospital with pneumonia. I have come to terms with not being a healthy 29 year old, but have adjusted my expectations in life. Most people in their 20s don’t feel fragile, but they also don’t have a real insight into how precious life is, which is something I really have. I am also more empathetic, understanding and emotionally strong than I was before all this happened. 

Having a rare lymphoma is really hard. My age, the difficulty in treating the disease and almost never coming across someone else who has had it is really tough, but I am enjoying the prospect of life moving forward.