I’ll be 31 soon and currently life feels weird and empty. My mum died on 3 January 2026 and having been her carer for around a year, it feels strange not having the responsibility; her death has left a huge gap.
My mum had struggled with mental health issues for years and was recovering well, getting out and about a lot more. She was 57, but was noticing symptoms. There was usually something to pin them down to – night sweats were probably because of the menopause, and as she was on HRT at the time, that all made sense. She was also losing weight quite quickly, but as she was trying to lose weight, she just thought her efforts were going well.
But out of the blue she started having really bad sinuses. She went to the pharmacy who prescribed antibiotics and a nasal steroid spray. But these weren’t really helping. She then developed back pain in her lower back and central spine area which were extremely painful. She was someone who would play things down, but when I asked if she wanted to go to A&E she said ‘yes’. I knew things must have been bad.
She was in hospital for 17 hours and they found a lump in her groin which they wanted to check out, so carried out an ultrasound scan thinking it could be a cyst or an abscess. They also investigated the pain at the top of her spine, which resulted in them doing a biopsy and a CT scan.
It was six weeks before the results came back. She was diagnosed with peripheral T-cell lymphoma (not otherwise specified) with central nervous system involvement. We were told this was very rare, which was why it had taken so long to get an accurate diagnosis.
Mum deteriorated very quickly and while we were waiting for the results, she started blacking out when she stood. As her condition worsened over the 12 weeks between attending A&E and being admitted to hospital, at times she would need me to carry her to the toilet and we hoped that the Oramorph (a pain killer) and hot pads would help. I ended up calling our GP who visited mum at home and arranged an ambulance as things seemed to be getting worse for mum and that resulted her being in hospital for six months.
It was difficult to watch mum struggling so much and I spent my evenings researching the little known about her condition, looking into studies and investigating possible treatments.
She had her first dose of CHOP chemotherapy, but they could only give her a 50% dose because she had deteriorated so much. About a week after the initial chemotherapy, she was transferred to another hospital, however within 18 hours, she had gone into neutropenic sepsis as a result of her bowel perforating and was rushed into ICU. She needed surgery and time to heal.
Two months later, the consultant told us they were willing to attempt chemotherapy again. Her second dose, like the first would only be 50% CHOP chemotherapy, following her surgery. She also had 2 doses of intrathecal methotrexate chemotherapy. Due to a sensitivity doctors believe she had to the chemotherapy regime, she again went into septic shock, a week before my graduation.
Treatment appeared to have some positive effects, however, due to the risk of sepsis all treatment was withdrawn early November 2024. Mum was transferred back to our local hospital where she spent a further 2 months before coming home. Whilst she was at home, we had carers and district nurses come in, but she needed someone there all the time, so I gave up work to care for her.
It was definitely a battle at times, but having struggled with mental health, mum now seemed to be happier and feel more positive than she had been before. She admitted that occasionally she would get a rush of fear, but most of the time she was peaceful.
Whilst at home, mum didn’t let being bed bound hold her back, from making clay models together to playing with remote control cars around our living room, we’d talk, laugh and cry at times. Mum always made sure she lived on her terms, defying most prognosis given to her.
Mum died peacefully at home on 3 January 2026 at the age of 59. She fought with courage and grace, never letting her lymphoma drag her down.
It is so strange not having that responsibility any more. She has left a huge gap and I have too much time now. I am going to use a bit of time to get trauma therapy and am making plans to return to study. I was training to be a solicitor and want to do some more study alongside raising awareness of PTCL-NOS.