14 Mar 2018 | Partners in Care
Author and young cancer survivor Jake Bailey made international headlines when he delivered his end-of-year prizegiving speech as head boy of Christchurch Boys’ High School in December 2015, just one week after being diagnosed with Burkitt’s non-Hodgkin’s lymphoma.
Jake, who has been in remission since 2016, shared the story of his diagnosis and subsequent treatment at the Health Quality & Safety Commission’s Let’s Talk forum. He discussed the highs and lows – from delays in diagnosis, to the incredible team of health care professionals he considers himself lucky to have worked alongside during his treatment.
While he was invited to speak at the forum about the areas of his treatment which could have been improved, Jake is quick to reiterate how grateful he is for everything his health care team has done for him, and how his experiences within the system were overwhelmingly positive. He noted that, while it’s confronting for patients and professionals to look at the times where things went wrong, it’s important to do so, particularly for the benefit of the patients who will come after him.
A series of system failures meant Jake wasn’t diagnosed as early as he could have been. Scans which could have helped diagnose his condition weren’t looked at by his doctors or dentists, his pain was put down to his wisdom teeth which were subsequently extracted and his pain levels were downplayed.
The type of cancer Jake had is incredibly fast growing and can double in size every 24-48 hours. By the time he was diagnosed, his body was riddled with tumours and the tumour in his jaw was sticking out through the holes left by the removal of his wisdom teeth. The delay in diagnosis bought him within two weeks of death.
'When you’re 18 years old, that’s far closer to death than you are comfortable being,' he noted with a laugh.
He has several examples of ways the system failed while having treatment, and recalls an experience where he was transferred through the hospital for a scan without a face mask, and picked up a bug.
Jake spent 50 days straight in Christchurch Hospital’s bone marrow transplant unit leaving only once to make the speech which thrust him into the spotlight. That time was spent in an isolation room where visitors had to go through two airlocks and two hand washing stations before even making it onto the ward.
'I genuinely believe that through sharing the details of my story, I have the ability to positively influence the consumer experiences of future patients. It’s important to me to be part of the change I want to see.'
While he looks back on his time in hospital with positivity, Jake says he was lucky to have a strong and confident advocate – his mum Janine – but he realises that many consumers may not have such strong family support.
'While my outcome may not have been different, had I not had my family there to advocate for me, it would have been a much longer and slower process to be diagnosed and treated.
'It was them who pushed for me to be seen by specialists, it was them who took me to appointments, it was them who pushed for answers when we felt like we weren’t getting any.'
Jake sees the dedicated health care professionals as the biggest asset of our health care system.
'The most important part of my experience with our health care system was the people who stood beside me throughout it. And that wasn’t just my family – it was a team of truly incredible medical professionals, who I will forever be connected to.
'The staff that made the biggest impact for my family and I were those that saw us as part of the health care team. They understood the psychological impact that isolation can have and made allowances to minimise this.
'They approached their job in a holistic way and gave support on a real and personal level. They made an effort to get to know us as real people– they were humble, hugged me when I cried, talked to me when I was lonely, laughed with me and ultimately saved my life.'
Jake will remain forever grateful to the amazing health care workers who supported him and says that the points he makes should be seen as the failures of a system, not the individuals who work within it.
Jake has written a bestselling book about his experiences called Jake Bailey: What Cancer Taught Me.