Caroline's T-PLL story

My symptoms came on over a few months. I felt very tired and had very swollen lymph nodes. A colleague at work asked me if I knew I had a huge lump on my neck - and my neck had felt lumpy before – so I thought had better get it checked out and visited the doctor.

I was seen immediately by my GP who gave me a blood test and after one week, I was referred to a consultant and given my diagnosis of T-cell PLL.

I received my diagnosis just as COVID-19 restrictions had come in, and was put on Watch and Wait, which ended up lasting for two years. After being given the news, I felt dazed and shocked, trying to work out how my life would pan out.

I felt devastated I had cancer, with so much negativity surrounding me on the subject. Fortunately, I have had amazing support from my family and friends.

Every morning, I woke up and it was constantly on my mind that I would die early, and I wrote numerous letters for them to read after I passed away. 

I kept trying to make sense of it all, going round in my head, trying to find peace. I only had two sheets of information on T-cell PLL as it is so rare, but I clung to the one positive sentence in those sheets, that the only possible cure was a bone marrow transplant.

Eventually I was put onto treatment. There was a lot of hoops to jump through, but I had to stay positive and never give up. I was given alemtuzumab for one week in hospital and then for eight weeks as an outpatient three times a week.

I was able to have a nice Christmas with my family before getting ready to have a bone marrow transplant in the new year. It was intense and challenging, but I was determined to keep going.

I left the Royal Marsden and after three months, it was confirmed that I was cancer free. Two years of recovery time at home followed, while I also received help for my depression and OCD. I am now nearly four years post-transplant, and I have a check-up every four months.

I now try to live life to the maximum. I never take anything for granted and enjoy life. Even if I died tomorrow, I remember that I have had an extended life as I would only have had a few months to live without treatment.

I have been given the tools to be my own therapist to keep me positive, and I try to be as active as possible. Although I had to retire from work, which I found difficult, I find other ways to keep busy. I have an interest in buying and selling, and seeing my family more. I have a happy and full life.