Nikki was diagnosed with Ewing’s Sarcoma in her pelvis in 2002, at the age of 16.
I was diagnosed with Ewing’s in December 2002 at the age of 16 after finding a lump on my pelvis. I first noticed the lump in October and carried this burden alone for two months as I was too frightened to tell my parents. The day I finally told them was awful, although the relief I felt was enormous.
After that day things happened very quickly. My local GP sent me for an emergency ultrasound and I was diagnosed there and then. It’s strange what you remember when in that situation. I remember my doctor was wearing a mac! And I remember standing outside the hospital with my dad crying.
As it was so close to Christmas my specialists decided to wait until January to begin treatment.
My first trip to Dublin for chemotherapy was very scary. But like anything, you eventually become used to it and find a routine, which is what I did.
I had six cycles of chemo to shrink the tumour and then travelled to England for my operation. Thankfully the operation was a success. This was followed by six more cycles of chemo and then five weeks of radiotherapy.
I was pre-warned about the effects of chemo (losing my hair, weak immune system etc) but no one mentioned the damage radio can do or the damage chemo could do to my ovaries. I was never given the opportunity to freeze my eggs and as a result I cannot have children. This is even more heartbreaking than going through the treatment but that’s just the way it is.
For a few years my hip was fine. Life was back to normal, I had even started modelling, which was a huge achievement for me, feeling confident enough to let people see the scars. I was healing and all was good.
Then, in the space of a single day, I ended up in hospital on morphine. The radiotherapy had completely destroyed my hip.
It was crumbling and pressing on large nerves in my leg which caused absolutely crippling pain. It took doctors a full year, and a 10 week hospital stay, to decide that a total right hip replacement was needed. So in 2007, I underwent my first hip replacement. Again, the operation was a success so life continued.
It had changed now though. I walked with a limp and suffered from chronic muscle and nerve damage. I was also diagnosed with lymphedema and had a slight leg length discrepancy, but nevertheless, I was determined to go to university so I continued on with my studies and got a place in the National University of Ireland, Galway.
Things began to deteriorate during my first year away, though. I decided to take a year out and go to Australia in 2011 with my friends, but I went with the knowledge that things were not right with my hip. Four weeks into my trip I was admitted to hospital with a suspected clot in my leg, but after further testing, specialists were satisfied that it was not a clot. Turns out it was a massive infection in my hip. I spent 10 weeks in a Perth hospital while they took out my infected hip and put in a temporary replacement. I flew home (first class, thanks to Travel Insurance!) and was admitted straight back into hospital from the airport. The temporary replacement (spacer) was meant to come out in January 2012 but a fall at Christmas (too many sherries!) landed me back in hospital with a snapped femur.
I spent Christmas Day in hospital recuperating from surgery and getting used to my new thigh to knee length scar. (It’s pretty cool).
The second hip replacement took place in May 2012 but this operation wasn’t so successful. The prosthesis was custom made for me in England and was designed to fuse with my natural bone. But unfortunately that didn’t happen.
The radiotherapy had killed all the muscle and bone around the site of the tumour thus eliminating any chance of fusing. This means that I cannot have another replacement and have been left with a lose hip and a considerable leg length discrepancy. I now walk with crutches and will remain on these for life. I am technically disabled and my future will be difficult.
But, I made a decision a long time ago to remain positive and thankfully I have never regretted that decision! Everything I have been through has made me the person I am today.
It has made me determined to prove to people that I can still do all the things they can do.
I went snorkelling in Egypt in April 2013 and loved it! I might not be able to run around but sure who wants to run anyway, it’s tiring!
Thank you for taking the time to read my story, and if you ever find yourself in a similar situation feel free to drop me a line. firstname.lastname@example.org