In 2011, at the age of 27 Charlene was diagnosed with osteosarcoma in her left knee. Charlene has kindly shared her inspirational story.
Before my diagnosis I was working with children, delivering activities during the summer holidays. I noticed that I was in a lot of pain in my left knee. I found it difficult to walk or run. This was very unusual for me. I initially consulted my GP and was given pain killers. But the pain continued. I went back to my GP as I was adamant something was wrong.
I was immediately referred for an X-ray at my local hospital and within a week I was having a biopsy at The Royal National Orthopaedic Hospital. During this time, I believed that I had fractured my knee. Around a week after the biopsy I was invited back to the RNOH for my results. My mum came with me.
That day I received the most devastating news of my life – I had Cancer! All I could remember hearing was those words ‘You have cancer’.
I never heard anything else afterwards. I was in complete shock. All I could think about was my son, who was 5 years old at that time. Thoughts of him going through life without his mum. The medical team explained that the only option to save my knee was to remove the tumour and do a full knee replacement. At this point they were unsure whether I was to receive chemotherapy or radiotherapy. I don’t even remember how I got home!
I had never cried so much in my entire life and sleep was now a thing of the past. The friends and family that knew of my diagnosis were very supportive. Although they tried to comfort me, keep my mind off it and keep my spirits up, I couldn’t tell them how I was truly feeling. I found no consolation in anyone or anything. I kept this burden to myself and watched my worries and anxieties intensify and manifest.
After diagnosis I underwent test after test. More X-rays, CT Scans and MRI’s. My operation took place a few weeks after diagnosis and surgery lasted up to 12 hours. I was in hospital for just under two weeks. I was sent home on 12 different medications, taking these up to three times a day and unable to walk with over 200 metal clips which stapled half of my leg together.
This physical pain was the worst pain I’ve ever felt. I didn’t have to go on chemotherapy or radiotherapy but I still had to experience the heavy cocktail of medications, which had similar effects. The side effects of these drugs caused damage throughout my body and digestive system which led to further surgeries and more medication, which slowed down my mobility progress.
I was left homebound, gained an extreme amount of weight and my mental health suffered. I was severely depressed and felt isolated. I spent so much time in and out of hospital it was almost like I belonged to the hospital.
My life wasn’t my life anymore.
The hardest things for me was not being able to go out, especially to work, as I was a very active person. Not being able to play with my son broke my heart. Unable to read or write as I’m so passionate about books and learning new things. I wasn’t able to complete university or pursue my business aspirations.
Although I came close to giving up a few times, one day I decided that I was not going to live like this anymore. Enough was enough. I was tired of feeling helpless. Tired of seeing my son seeing me like this. This wasn’t the life intended for me.
After intensive rehabilitation with the help of the physiotherapists at the RNOH I was able to walk independently and re-gain the feeling in my knee again - two years after surgery. I also weaned myself off all the medication, including two types of morphine.
During my treatment I did reach out to the Bone Cancer Research Trust and MacMillan. I wasn’t able to tell my story as I was still so traumatised about what I was going through. I was unable to open up to them. But I knew deep down that one day I will work alongside this amazing charity with the hopes of starting my own charity one day.
It has taken me 7 years to share my story as I now feel ready.
I want to raise awareness for the following reasons; Cancer is such a devastating disease that I don’t think you’ll ever get over but you learn to cope with. Osteosarcoma in particular, raising awareness for this rare bone cancer is extremely close to my heart. I want to give hope for others. Even in my darkest hours I was able to see a small glimmer of light. I face daily challenges with my health and mobility struggles.
I’ve accepted that life will never be the same, but I take every day as it comes and never take for granted what I have and how far I have come. Despite these challenges, within the past few years I have opened my own charity, had another child and opened multiple businesses.
I am now mentoring start-up businesses, hosting a monthly networking event, ambassador of a charity where I’ve recently appeared on ITV News and local newspapers. I use my platform to raise awareness through public speaking engagements and I’m also a cancer support coach. I am now known as 'the woman with the iron knee.'
I recently attended a Bone Cancer and Bone Sarcoma Support Group and being amongst other bone cancer survivors gave me a true sense of community. During my treatment I was unable to attend anything like this, so it was particularly special for me.
It gave me a chance to speak openly knowing that the group fully understood what I went through. Hearing everyone's stories I realised that I'm not alone in facing a disease so very rare. I found it has helped towards my healing process and I'm hoping these support groups will be beneficial to patients too.
I am now looking forward to attending more support groups, meeting, connecting and sharing stories and advice with my fellow survivors.
I would encourage all bone cancer patients or survivors to attend one of the Bone Cancer Research Trust support groups, whether you've just been diagnosed, going through treatment or life beyond cancer.