Kirsty's Story: Living with Neurofibromatosis and Scoliosis

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Kirsty, who by now was already struggling financially, was faced with the choice of eating or going to hospital with all the additional travel costs and parking charges. Like any mother would, she chose to care for Daisy! After Kirsty’s death, her family started her supporter goup to raise funds and awareness of brain tumours. The findings from the survey were so useful and relevant that researchers from the University of Liverpool asked her to publish her results in a scientific journal. She is in the process of doing this with a team from the University and expects to publish them in September 2018. Kirsty playing the violin How to improve the experience for people with pancreatitis But I just got on with it: I made friends with other children who were also going through treatment.

I decided to write a book about how I cope with Neurofibromatosis and Scoliosis in words that we can understand and that children will also understand. Some of my doctors have also contributed to the book. The book was so successful that I kept being asked to write a second book which is what I have done. The second book also contains around 40 other stories of other people who also suffer from Neurofibromatosis, this gives an understanding as to how Neurofibromatosis affects people so differently. There is also information from some of the medical profession who are involved in my medical care. I'm delighted to say she's now studying an SVQ in social care and hopes to pursue nursing in the future. I'm so pleased that I helped support her during these difficult times, and that I met someone who's so passionate about the role. I feel like I contributed to her decision to pursue this career and this makes me feel so proud. People in the policy world are starting to recognise it, and organisations such as Sustrans are working with disabled people on improving access and comfort on new and existing infrastructure. We went to a free seminar where we found out all about the treatment options and the processes which enabled us to make informed choices about the best treatment for us. We then arranged a consultation and following this we had the relevant testing. We then started treatment in July 2016, a few weeks after our wedding. In a small room that just fitted Kirsty, Adrian, Val, me, a nurse and a consultant, they showed us the brain scan and announced that Kirsty had an aggressive Glioblastoma 4 brain tumour. The prognosis – without treatment – was 6 months. With an operation to remove the high grade tumour, followed by radiotherapy and chemotherapy, 12 to 18 months. Our world stopped then.”Kirsty spoke critically of home abortions saying how people talk about the procedure happening in the ‘comfort of your own home. Without travelling to a clinic or hospital’ but in reality her experience is that the memory of the loss of her child is now in her home forever and ‘it’s no longer the safe, happy place it once was’.During the abortion Kirsty looked down and saw the blood on her bedroom floor. ‘To this day I’ve still got a stain on the carpet’ she said, ‘Which is all I’ve got left of my baby now.’ I was used to walking on my own so although it was great to have company and it certainly helped, it didn’t worry me when I was solo. I’d put my headphones in and listen to music. Eventually Kirsty felt there was no choice but to start the process so she took the tablets. She couldn’t take any painkillers as the ones that had come in the post were ones which made her ill so she continued without them. She drifted off into some kind of sleep amidst her painful cramps but it was when she woke up that the nightmare began. She lifted up her blankets to see if anything had happened and it’s hard to imagine the hellish, bloody scene that met her eyes. Kirsty waited hours for her parents to leave the house then dragged herself to the bathroom, ‘I remember washing the blood of my baby down the shower’ she told us.

What happens, happens. It’s not worth worrying about. I always find a way to celebrate what I’ve missed and make it special. Kirsty went eight hours without being given antibiotics, with them administered eventually at 9pm. She was sent to a surgical ward where they said they had to put a stent into her kidney. Kirsty went for the surgery but then their mum got a phone call from the consultant saying that she needs intensive care after the operation due to the sepsis – which was the first time that the family heard the word. Chloe said: “I felt like it was the beginning of the end at that point.” You have been a godsend! I can’t explain the relief it has given me to know I can get myself straight again and be able to give my daughter all she needs. Thank you for your support.”Under the Patient Safety Incident Response Framework (PSIRF) there will be greater engagement with those affected by an incident, including patients, families and staff. Ensuring they are treated with compassion and able to be part of any investigation. Contents I am proud of my amazing team, who have worked (socially distanced, of course) so hard throughout a global pandemic which hit us mid-build! Learn about Kirsty’s Story | Neurofibromatosis & Scoliosis over on her podcast as she starts to date and find love – find out how she tells new potential partners about it.