Nothing brings nursing more to life than from hearing the lived experience of patients and members. I am delighted to introduce Sophie, a fundraising officer from the Move Against Cancer charity. In my role as the UK Professional Lead for Long-Term Conditions at the College, where I support the RCN Cancer Forum, Sophie recently shared her story with me. Her experience highlighted her strength and the support for nursing staff have amongst our patients. I’m sharing her treatment experience, the support for Move Against Cancer charity and the role of the nurses caring for her.
"In 2015, as I was preparing for my first-year university exams I was given a devastating diagnosis of Acute Lymphoblastic Leukaemia. At 19 years old, my whole world was turned upside down as I was told that I would need 2 and a half years of treatment with the aim to cure the disease. At that point, it felt like all control had been taken away from me, and I went from having a bustling social life, working towards a psychology degree and looking forward to travelling the world with my partner, to being admitted into hospital for 6 weeks whilst I was treated with my first round of chemotherapy.
From the get-go, I knew that although I couldn't control what was happening to me, I could control how I dealt with the situation, and from the first day of treatment I tried to remain as positive as possible and do what I could to help the situation. One of the main things I did (with the encouragement of my medical team and family and friends) was to carry on exercising. Sport had always played a huge part in my life, and it was something that I knew would help both my physical and mental health.
After around a year of treatment, I was able to join the gym again whilst I was on an 18-month course of oral chemotherapy, and by September 2017 I had finished all treatment and was in remission. My partner and I went on a few long-awaited holidays, and life started to get back on track.
However, in June 2018 I was given the news that the leukaemia had returned, and a Stem Cell Transplant was my best chance of survival. In October 2018, I was admitted into an isolation room at my local cancer centre and was in hospital for 9 weeks whilst I had the transplant. The transplant process was tougher than I ever could have imagined, and my body felt like a shell of what it once was. During this time, it felt impossible to exercise, and when I was finally discharged it felt like the journey had only just begun.
In February 2020, I was told that I had relapsed for a second time and that CAR T Cell Therapy was the best option for me. Being a relatively new treatment, I was feeling very apprehensive at first, however I tried to remain positive and took the "third time lucky" approach. I knew that my body was still healing from the stem cell transplant and so I needed to get as strong as possible to give the CAR T Cell Therapy the best chance of working. That's when I found Move Against Cancer charity. I was referred to their 8 week online support programme, and from the very first call with one of their Cancer Rehab Specialists I knew that this is exactly what I had been looking for throughout my whole cancer journey and I was just gutted that I hadn't found it sooner. I was given a bespoke exercise programme that was tailored to my needs and goals, and over the 8 weeks I worked 1-1 with my cancer rehab instructor to get me in the best physical shape I could before going into hospital for my CAR T Cell Therapy.
I was admitted for CAR T in May 2020 and was told on my admission that I would likely be in hospital for 6 weeks. However, unlike my previous treatments, I now had a "toolkit" of exercises that my Move Cancer Rehab Instructor had equipped me with, so during my stay in hospital I would do some of those exercises. It would be things like gentle stretches, yoga, breathing/meditation and some chair-based exercises if I was having a tough day. It was at this point that I realised the true power of exercise for those living with and beyond cancer, as I dealt with the CAR T Cell Therapy incredibly well and was discharged from hospital after just 2 weeks.
When I got home, I was even feeling well enough to play badminton in the garden with my parents and do some resistance band workouts that I had done during the MOVE programme. I was so grateful to MOVE for all the support they had given me that I knew I just had to get involved more, even when having to break bad news to me about a relapse. They remained calm, compassionate and caring throughout the whole process.
Throughout this whole process, I had fantastic support from my GP and GP Nurses. After my Stem Cell Transplant, I needed to complete a re-vaccination programme, and it was always a pleasure to catch up with my GP Nurse at these appointments. She kept on top of my schedule, whilst also ensuring I received annual Flu vaccinations and any covid vaccination boosters - including reaching out to my immediate family members and making sure they were all up to date with their vaccinations to keep me safe! Since my Stem Cell Transplant, I have also been in early menopause, and my GP Nurse has annual HRT reviews with me and if I ever have any issues or worries about anything, I know that she is only a phone call away. For me this has made a huge difference to my care, and I really can’t emphasise enough how supportive my GP and GP Nurses have been to me these past 9 years." Sophie Mulligan.
Thank you, Sophie, for sharing this inspiring determination and story, and it is great that you had a positive experience with the nursing teams throughout your treatment. Listening and understanding our patients’ stories through cancer pathways is key to ensuring high quality care is delivered at all times. If you have a story you’d like to share, head over to SenseMaker to share your words. We are delighted to be working with Move Against Cancer charity, so keep tuned for more projects coming your way soon!
