Ruby Kendle, 14
"I have a long term diagnosis now, but I try not to let that affect me day to day."
Being diagnosed at a young age
Hello, my name is Ruby, when I was 6 yrs old I was diagnosed
with neurofibromatosis type 1, this is a genetic condition
that affects people in many ways. When I was 7 years old,
I started to get symptoms which included vomiting, double
vision and dizziness. We saw my GP who knew something
wasn’t right so referred to me to a paediatrician, who
ordered me a MRI scan for the next day. After the MRI
we saw an oncologist who broke the news I had a
brain tumour In the cerebellum, I was then rushed to
John Radcliffe to have brain surgery that was 7 hours,
I also had hydrocephalus so I was put on steroids for this;
I was in hospital for 2 and half weeks and had a month off of
school as well. Then, I had MRI scans to monitor once a year.
In November 2015, they found a second tumour. I had relapsed
this time and the tumour was inoperable, so after a biopsy
on the 20th of December they decided to monitor its growth.
In April 2016, it had doubled in size so I started a 18 month
long chemotherapy course, which include vincristine, carboplatin
and vinblastine. I faced 4 months of intensive chemo, which resulted
in constant nausea and I developed neuropathy. During chemotherapy
I was extremely neutropenic which resulted in me getting blood
poisoning: luckily it was caught in time and I was transferred by
ambulance to the hospital to receive IV antibiotics. Due to the vincristine,
I lost a lot of mobility and used a wheelchair all of the time when I was out.
I also got extravasation (where the chemo leaks out of the central line
causing burns) on my first chemo.
During chemotherapy, I was lucky enough to access the Teenage Cancer Trust,
which were a great help to me and I made some great friends. And the
Ellen MacArthur Cancer trust trips were life changing! I now have a
group chat with some of my close friends from my last trip to Cornwall
called ‘bottle’- interesting name but has a hilarious meaning to us!
Since finishing chemo I have been diagnosed with chronic pain, chronic fatigue
and HSD, all of which can be extremely difficult to manage! But there are many
great thing about being off of chemotherapy: I get to see my
friends a lot more and go to school which I missed! I have a long term diagnosis now
but I try to not let that affect me day to day.
REMEMBER YOU ARE TOUGHER THAN CANCER!!