Personal stories Living with a blood disorder Gemma's story Gemma's story starts back in 2010 at the age of 48, when she was diagnosed with non-Hodgkin’s Lymphoma. After participating in three different clinical trials with many twists and turns, Gemma is now in remission and lives a healthy lifestyle in Broome with her husband of 40 years. Without any other symptoms, I noticed a tingling and a lump under my arm and went to visit my local GP in Broome. My GP thought it didn’t look serious but decided it would be beneficial to perform a needle aspiration. However, the results from this procedure were inconclusive. So, whilst in Perth for a school reunion, I decided to book an appointment with a doctor for further investigation. “During the diagnoses you feel sorry for yourself for a couple of weeks: then I thought: ‘put your big boots on’ and get on with it.” The lump was removed and tested, and results showed that I had Follicular Lymphoma which is a form of non-Hodgkin’s Lymphoma. Despite my father having non-Hodgkin’s Lymphoma, it is still not known if there is a genetic link. He passed away at age 62. “I never felt like I was going to die. Then I thought, this could kill you; I was flippant about it.” Prof. Baker organised PEP scans and MRIs and found three spots under my arm, pancreas and neck. I underwent chemotherapy and then joined a clinical trial for the drug ‘mabthera’ with Perth Blood Institute’s clinical trial division. Twelve months into the trial I was in remission until they found a lump on my groin. Unfortunately, due to a chest infection I had to suspend my participation in the clinical trial. “It’s important to stay positive throughout your cancer journey when things don’t go to plan, to stay healthy and fit and make good lifestyle choices.” After the infection cleared up, I was able to enter a trial for a second time, and in this instance, I was on the trial for 18 months and the drug was working effectively. However, after another chest infection and lung damage I was forced to leave the trial again. Once I was well enough, I had an opportunity to re-join another clinical trial until its completion in January 2021, and after some time with the team, my latest scan showed I was clear of cancer. “No one wants to face it; I didn’t look like a cancer patient.” My daily life has returned to normal, but I am conscious that I am living with some unknown which could return whenever. If or when I experience more lumps, I face the reality of needing more treatment or going back on a clinical trial. “If the trial doesn’t work you’ve lost nothing.” It was wonderful to receive such amazing treatment and attention from Prof. Baker and the staff throughout the PBI clinical trial – scans, blood tests, and the constant monitoring and reassurance from doctors, prevented me from panicking about symptoms. At the start of the trial, it was difficult travelling from Broome to Perth; however, the trips were paid for by the clinical trial sponsor which was helpful. The PBI nurses were always available and very good at explaining things in layman terms too. “Professor Ross Baker and Dr Maan Alwan were always a phone call away - I can’t fault them.” Being in complete remission is wonderful; I have a good quality of life now thanks to the treatment I received from PBI’s clinical trial. Thanks to PBI, I am still able to manage my local BP station; babysit my grandchildren and travel abroad to Canada.