Sarah

I was diagnosed with a high-grade follicular lymphoma in September 2019 just a month after developing severe back pain. 

I'd been feeling very tired and stressed for a few months and was also having very heavy periods, but I put it down as peri-menopausal symptoms. I visited my osteopath who said ‘I can't quite understand what the issue is’ so I went to a physio who wouldn't even touch me. The physio thought I had a fracture of my vertebrae and sent me straight to my GP with a letter. 

I had blood tests, and was called the next day for more bloods, and an ultrasound was booked for the following day. That Friday afternoon I was in agony and desperately needed help. The doctor told me that I had lymphoma, which was catastrophic, although at that moment I was more worried about relieving the hideous pain. I couldn't eat or drink.

By Tuesday of the following week, I visited the out-of-hours doctor for pain relief. The next day we called an ambulance and after three failed attempts to cannulate me they whisked me straight to hospital. I was sent home. On Thursday, in desperation, I visited my amazing GP. She admitted me straight to hospital. I wasn't even allowed to go home to pack. She knew I was in trouble. 

In the AMU (Acute Medical Unit) the only relief I could get was to rest on my elbows and knees. No drugs would help and the flushes were intense and virtually continuous. I was admitted to the cancer ward where I had palliative drugs. I was terrified. Didn't palliative mean life ending assistance? But in my instance I was issued with an infusion pump. I couldn't sleep, the pain was incredible and hospital is exhausting with the constant med checks. 

I spent two weeks on my elbows and knees; they were red raw. I remember the day they did my biopsy. I had to lie on my back which was the worst pain I've ever experienced. Then the day I collapsed on the bathroom floor and had to pull the red cord. After that I fell into a coma. My poor family then took over.

Finally they had a confirmed plan of action after full diagnosis. They started chemotherapy and my family watched as the chemo broke down the tumours. It was explained to me that the reason I had experienced so much pain in my back was because the lymphoma was encasing my aorta from my heart to where it splits for my legs. It was displacing my pancreas and kidneys onto my spine. I also had an enlarged lymph node measuring 32mm in my chest together with multiple areas of lymphadenopathy in my chest, neck, groin and pelvis.  

A few days later everything was improved. I woke and apparently sat up to eat a boiled egg. The doctors were amazed at how I responded to the initial chemotherapy.

I have no recollection of this or the time I told off my family members! My 14 year old son used to visit me after school and, as this was before COVID, I had lots of amazing visitors.

Recovery was slow. I only weighed 7 stone having lost over 2 stone. I needed physio to help me climb the stairs again. I spent three and a half weeks in hospital. But I'd made it. 

I then had a further five R-CHOP cycles interspersed with three methotrexate inpatient sessions which finished in February 2020. I was elated but this was short lived as COVID struck just a month later. I returned to work on the first day of lockdown and started shielding. 

At the time I entered a huge period of depression, realising my marriage of 17 years was coming to an end. I was devastated. In addition, I was unable to see my friends and family who had been so important during those early days in hospital. I've never felt so lonely.  

I think in hindsight I hadn't really understood what lymphoma was. I had no recollection of the doctor's early information of ‘treatable, not curable’. I was really disheartened when I learned I had to start two years of rituximab maintenance treatment. It felt like I'd never be free. But I coped well with it and in February 2022 finally felt I was turning a corner. 

By April 2022 though I knew I was in trouble again. A PET scan in May confirmed it was back, but low-grade follicular lymphoma this time. We agreed to do six cycles of 0-Benda (obinutuzumab and bendamustine) starting in September 2022 and heading for an autologous stem cell transplant using my own stem cells.

In April 2023 my first harvesting failed but I eventually had my autologous stem cell transplant in July 2023 after a successful harvesting attempt and I've been really well since. I did finally catch that dreaded COVID in September 2023 but survived that too.

I want to just say that for anyone starting on the rollercoaster, even when you are at your absolute worst, there will be a plan and with friends, family and hospital support you will cope. The future seems more certain now, I'm even well enough to consider a house move. I do know that it's still incurable but ‘remission’ is a great thing to hear. Five years and a new start beckons.