Terence Moore, a 75-year-old writer from Chester, was recently diagnosed with AL amyloidosis, a rare cancerous condition. He’s currently having treatment at The Christie NHS Foundation Trust’s local cancer treatment centre in Macclesfield, Cheshire.
AL amyloidosis occurs when misfolded proteins form amyloid fibrils that deposit and build up in the organs and tissues. If left untreated, it can cause life-threatening organ damage.
Terence, who has been with Lynette for over 40 years, has been a teacher, dancer, musician, actor and charitable company director. He has been trained in traditional Chinese medical herbs and acupuncture and is the co-author of a book on Tibetan medicine. After retiring from his job as a Senior HR Officer for his local council, he is now writing a new book on his own health. In his retirement, he loves having time to work in the garden and to get out into nature.
Terence has been through several life-changing health events over the last 20 years – he had 3 cardiac arrests in a day following a stem cell transplant to treat his amyloidosis, a heart attack, and cerebral venous thrombosis, which left him with severe temporary memory loss.
He is sharing his story to bring hope to others and to express his gratitude to the multiple NHS teams that have not only saved his life but also given him his life back.
“I’ve had more hospital appointments than I can count. I have a really positive attitude, which definitely makes a difference. I’m now writing a book about my experience and want to spread a bit of positivity and bring hope to others who are going through adversity,” he says.
“I’ve been through so much in my life, but I’m still here and am positive about the future. I’m so grateful to the NHS for saving my life so many times.”
Terence’s experience with amyloidosis started in 2013 when he noticed that parts of his body were starting to swell.
“It started with my legs and ankles, but it was when I noticed that my wrist was swelling around my watch that I knew that there was something wrong. I went to A&E and, even though amyloidosis is rare, the doctor I saw had worked at The National Amyloidosis Centre in London and knew what he was looking at, so it was caught early. Not everyone is so lucky in that regard,” Terence explains.
Terence was initially treated with a stem cell transplant, where high-dose chemotherapy is delivered to destroy abnormal cells within the bone marrow, which is then rescued by the re-infusion of the patient’s healthy cells. It was successful and put him into remission. However, it came with significant complications.
While rare, acute cardiovascular events like cardiac arrest can occur during or after the procedure due to high-dose chemotherapy, infections, or severe electrolyte imbalances. Terence had 3 in one day.
“I was just coming to terms with the fact that I was living with this rare condition that could potentially be damaging my organs, and then, during treatment that was designed to save my life, I had three cardiac arrests. I ended up in hospital for 46 days,” he says. “Although it was a difficult and trying time, I don’t regret it for a moment as it gave me 12 years in remission.”
Terence’s amyloidosis went into remission until 2024, when he started treatment at The Christie.
He started on a treatment regime of 4 different drugs, but as time went on, his consultant was able to reduce this to just one. He is due to finish treatment in February 2027.
“The treatment worked quickly, which was great, but it didn’t come without side effects. The steroids I was on were causing hypertension and problems with my sleep. Dr Sharpley, my consultant, was brilliant. She listened to what I was saying, reviewed my case, and told me I was able to stop taking the steroids. Later, when she saw that I was responding so well to treatment, I was able to go down to just having one drug. She always saw me as a full person and not just a diagnosis, which made all the difference,” Terence adds.
Amyloidosis is not the only serious health issue Terence has had to deal with. Back in autumn 2005, he was walking to work at the council in Chester when he felt a sharp pain in the back of his leg. He was very active at the time, so he put it down to that, but when he started to get pain in his lungs, he knew there was something wrong.
“I called my friend, who was a nurse, and she told me to go to A&E as soon as possible. It turned out that I had deep vein thrombosis (DVT) that had spread to my lungs, something that only one in three people survive. I phoned my friend back, and it turned out that her partner had had the same thing and unfortunately hadn’t survived. Like with the doctor who diagnosed me with amyloidosis, I felt very lucky to have experienced medical professionals in my corner,” he says.
Terence was put on warfarin temporarily, but after he came off it, he experienced yet another serious complication.
“A year after my experience with DVT, I was getting bad headaches. It came to a head when I was trying to turn on my computer at work and couldn’t remember how to do it. It got worse by the time I got to the hospital – my words were starting to fail me, and I could only remember three people in my life. I was diagnosed with a cerebral venous thrombosis on the left-hand side of my brain. If it had been on the right, which is responsible for movement, I might have been left in a wheelchair. It took me a year to fully recover, but recover I did,” Terence says.
Terence has been on warfarin since and has had no further incidents.
Looking back on his life, he feels an enormous sense of gratitude to the NHS
“From Dr Sharpley, my consultant at The Christie, to the nurse in Liverpool who kept coming back to sit with me while I was in hospital, I’ve been under the care of so many brilliant people, and I really can’t say thank you enough. They not only saved my life but also supported me emotionally through some very difficult times.
“No one knows what the future holds, but I’m just taking each day as it comes. In terms of my amyloidosis, I’m now on a combination of drugs that has put me into remission, and Dr Sharpley has reassured me that there are more options if it comes back again. I have always felt very reassured and cared for by her and the whole Christie team. They’re always there when I need them.
“What I’ve been through has changed me as a person. If there is one piece of advice that I could give to others facing adversity, and this is the main message I’m trying to get across in my book, it is that a positive attitude can really make a difference. It certainly has for me,” Terence adds.