32 year old Nikky has shared an honest and open account of Ewing sarcoma and amputation on his blog 'Bad to the Bone'. We chatted to him about why he chose to blog about his experiences.
Hi Nikky. What inspired you to create your blog and share your experience with others?
After being diagnosed with bone cancer for a second time and needing a below knee amputation I found myself reaching out to others who had been in a similar position, hoping that they could offer me some advice on what I was about to go through. Thankfully the Bone Cancer Research Trust put me in touch with two amazing people who were able to answer questions I had about surgery and life as an amputee.
It was this that motivated me to write about my own experiences in an attempt to help someone, somewhere going through a similar ordeal. I used a blog as the platform for what I had written because I knew it could be shared easily through social media sites such as Facebook, Twitter and Instagram, giving it the chance the to reach a much wider audience. I am in the process of writing the next few parts which will be about my most recent diagnosis and amputations. The plight of cancer sufferers is well publicised yet there is still so much more that can be done to help those faced with the disease and all that comes with it. Sharing my story and my experiences was the least I could do.
You're currently undergoing rehabilitation therapy. Could you tell us a bit more about this and how it's all going?
I have been having physiotherapy for around 7 or 8 weeks now. Things seemed to have progressed pretty quickly. The staff at the City Hospital are fantastic. We worked a lot on core strength and weight baring through my amputated leg using a PAMM aid up until last Thursday when I tried my prosthetic on for the first time.
It was a real shock to the system at first; not just physically but mentally also. I had expectations of myself that were unrealistic and I was left a little deflated when I couldn’t instantly run up and down the room of the mobility centre. It was hard to adjust and I was frustrated that something that had once come so easily to me was now taking so much effort and concentration. I managed a couple of lengths of the room where I was having my physiotherapy. I walked up and down between a set or bars and began to understand that it would take time to adjust but as long as I did as I were told it wouldn’t be too long before I was walking around freely.
I am now just a week on from my first attempt at walking and I am managing to walk with just one walking stick. My next challenge will be tackling stairs.
Do you have any words of advice or encouragement for current patients; particularly those who may be facing an amputation?
You will surprise yourself at just how strong you can be. There will be times when you’ll need a helping hand so don't be afraid to ask for one; no one is expecting you to face cancer in your own. Talk to someone about the way you are feeling and if like me it doesn’t come easily then keep a diary. It was a huge help throughout my first diagnosis.
Believe in yourself, have faith in your own ability and be proud of who you are and what you have achieved. You are capable of absolutely anything.
We know you're keen to raise awareness of primary bone cancer. Can you share any plans you have for the year ahead (and beyond!)?
Myself and my friends are all big into football so a football charity match was an obvious choice when deciding how to raise money for the Bone Cancer Research Trust. It will be held at Eastwood Community Football Club on Saturday 3rd June. The game will kick off at around 4pm. Once the game has finished things will carry on into the evening with a raffle, a local live band and DJ set. All are welcome. There will be a small entrance fee with all proceeds from this and the raffle going to BCRT.
I have set myself a personal challenge for August/September 2018: joining the Bone Cancer Research Trust team to climb Kilimanjaro!
Click here to read more about Nikky's open and honest account of his experiences on his blog Bad To The Bone.