Patient stories - living with leukaemia.jpgJulie works as a Nurse Consultant at the Royal Papworth Hospital in Cambridge. This is her story.

“In 2016 I was diagnosed with acute myeloid leukaemia… I was 40 years old with a young daughter. It was devastating – I had been through a really difficult time in my life; and I was feeling constantly unwell and under stress. I had repeated throat infections requiring antibiotics and eventually my GP sent off bloods and ordered me to rest. The next thing I knew I was being sent to A&E at Addenbrooke's (Cambridge University Hospitals NHS Foundation Trust) and spent most of the next six months in hospital.

 "The Haematology/Oncology team at Addenbrooke's have been amazing. After diagnosis, I was immediately started on chemotherapy, unfortunately I did not respond to the first round so was told that I would require a stem cell transplant to stay alive. I was matched with a donor and underwent a stem cell transplant in September 2016. The team at Addenbrooke's worked closely with Anthony Nolan to find me a perfect match.

"Anthony Nolan matches you with bone marrow donors based anywhere in the world. My donor lived in Germany where there is an opt-out approach to being on the register – in the UK we require people to sign up, it is relatively easy and I would urge anyone between 16 - 30 years to join the register via www.anthonynolan.org to help save the lives of people with blood cancer.

"My treatment hasn’t been straightforward, I have had lots of complications since having the transplant; this year there has been the additional challenge of having treatment during the covid pandemic. I have also been struggling with graft versus host disease and I am now having to have immunosuppression to avoid any further issues.

"I think being a nurse and having a good understanding of the body and disease has helped me through my illness; I am informed about my care and this has also helped when discussing my symptoms with my medical team. Royal Papworth Hospital continue to be hugely supportive during all of my treatment and in enabling me to work whilst still undergoing various procedures. I am three years in remission but my health still has a significant effect on my life.

"I would say to others...... Positivity is probably the most important aspect of getting through the tough times, by finding purpose, joy and meaning throughout my treatment I have grown stronger and more resilient. Also to be your own advocate... find out about your disease and the potential treatments and side effects and go in to your medical team with questions or concerns.

"I’m really lucky to have fantastic local support from my friends and family, and there is really valuable support available for people with blood cancers from Leukaemia Care and Blood Cancer UK."

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