My name is Jasmine, I am 20 years old and I have NF1.
It has been three years since I transitioned from paediatric care into the adult system. Looking back on the experience, I recall feeling incredibly uneasy and even a little scared about the process, but that is because we fear what we do not know.
What I do know is that nerves are normal, feeling anxious is normal and being worried about being able to build a rapport with your new team of specialists is normal.
We wouldn’t be human without these fears and it doesn’t mean connections between specialists can’t be reformed with new people. I spent seven years of the most intense part of my NF1 journey at the Royal Children’s Hospital, Melbourne (RCH).
I underwent a year of chemotherapy (once every 28 days) for an optic pathway glioma and developed a benign polycystic astrocytoma in my parietal lobe, before having my first brain surgery to remove the tumour at age 15.
Over the years, I saw an extensive range of specialists from all different departments at the RCH, including neurologists, oncologists and paediatricians. I saw an epileptologist, neurosurgeon and orthopaedic specialist, as well as my neurofibromatosis specialist. I grew quite attached to this talented team of people whose job it was to ensure my health and wellbeing was met from every angle - so naturally, it was hard to let go.
I also had the support of a NF Clinical Co-ordinator named Natalie from the Children’s Tumour Foundation. She made sure my family and I were comforted and always knew what was happening. To this day my Mum still has Natalie’s contact card in her wallet, the little NF penguin cheekily poking out.
I believe that good things come from breaking out of our comfort zones. So, when it was time to fly the coop and start a new chapter of my NF journey in a brand-new hospital, with brand new specialists, I used this to help me stay focussed and calm…well, as much as I could.
I remember attending my first appointment at the adult hospital. As I clicked the lift button and entered the first floor, I had to swallow the little lump of fear that bubbled up in my throat. My nerves simmered beneath the surface but having my Mum by my side kept them in check as we walked into the waiting room.
Without support from my paediatric transition nurse, my childhood paediatrician, as well as family and friends, transitioning hospitals would have felt like an impossible and daunting task, but it wasn't.
I walked into my first appointment with a USB stick and a DVD with back up MRI'S, that I was kindly given by Natalie and my team of specialists. This had all my scans, X-RAYS, MRI’s and doctors notes from my time in the children's hospital. This little stick and DVD were something that helped me know my new specialist would have all the information my paediatrician knew from all my years in his care.
“Jasmine,” my name was called. I glanced at my Mum and she nodded her head with a smile. She walked beside me into the doctor’s office; coming to sit in on my first adult care appointment for my NF.
This is something I recommend. It made me feel safe knowing that someone was with me, listening, absorbing the information I was hearing.
I handed my digital files over, spoke about my history and felt comfort in the process. I left the appointment feeling like a weight had been lifted off my shoulders. Looking back at the Jasmine who walked into that hospital earlier that day, compared to the Jasmine who walked out, made me giggle at her nerves. Little did she know it was all going to be fine.
If I could have made my transition different, I would have visited the hospital before my first appointment to get a sense of the environment; giving myself a little more time to adjust to what my new normal would be. Sometimes the scariest thing is the unknown, so if you can tick one thing off that list, then it can help reduce some of those nerves.
For those who are struggling a bit...there is always support"
Professor Kate Drummond
As a young adult who is three years into the adult care health system, my other piece of advice would be:
- To never be afraid to ask questions. No question is ever a silly question; and
- Don't ever hesitate to speak up
Something that my new NF Specialist, Professor Kate Drummond reiterated when I approached her with a handful of questions about her experience supporting other young adults’ transition into her care. She recognises that the process may feel “confusing and frightening” and wanted to offer some of her own advice.
Prof. Drummond urges young people to exercise both their rights and responsibilities when moving to adult care and to prepare themselves in ways that may make them feel more comfortable.
This might be physical tasks like chasing up MRI’s, sourcing strong communication between you and your teams, and use your right to the information and care you need.
"Keeping educated about your condition and health is always a good idea, as is keeping everything in one spot. It not only benefits you, but your team too,” Prof. Drummond explained.
She followed up by saying that most people adapt to the change in systems quite well, but for people who find it a little harder, there are teams there to help.
“Those who are struggling a bit, there is a care coordinator, neuropsychologist and a psychiatrist who can help out, as well as a social worker, the genetic clinic and more. There is always support,” she said.
Take those words from Kate herself and know that even when changing into a new system, seeing a new specialist or a hospital itself, ‘there is always support.’
By Jasmine Le Tisser
Professor Kate Drummond is the Director of Neurosurgery at The Royal Melbourne Hospital and Head of Central Nervous System Tumours for the VCCC Parkville Precinct.
Health Management Kits are available through the Children’s Tumour Foundation. Contact the support team by email support@ctf.org.au or by phone on 02 9713 6111 to find out more.