Below she shares her story as a long-term survivor.
When I was diagnosed, I was in my first year of A-levels at college, which was my social life. That, and studying. I remember everything leading up to the diagnosis, but I don't remember the day I was told.
In the lead up, I knocked my leg through a fall, which left me in excruciating pain. The pain would keep coming and going, leaving me screaming in agony when trying to move. I was also unable to rest or sleep. No position was comfortable, and the lump would increase and decrease in size.
This went on for a couple of months. We didn't have a car, so I had to get to the GP by bus when I could barely walk.
The doctors told me nothing was wrong, and it was all in my head. This happened on a few occasions.
In the end, I called an ambulance and was taken to hospital in Birmingham, where I was transferred to the Royal Orthopaedic Hospital (ROH). It was there that I received a bone biopsy, which confirmed Ewing sarcoma.
Luckily, it was only four months between the symptoms starting and my diagnosis. I think that has been my saving grace.
My parents divorced when I was very young and we had no family in the UK, hence no family support. We all felt isolated, and my mother couldn't fully understand what was happening. As a result of this, I didn't have the opportunity to discuss my treatment options with anyone else. We were very much in the hands of the doctors and medical team.
My treatment started quickly. I would go into hospital every fortnight, receive chemotherapy 24/7 for a week, and return home again. My mum didn't speak English, and it was really hard to translate medical terminology.
With the drugs I received, one of the side effects was temporary amnesia. Friends did come to see me, but I wouldn't remember.
Eventually, the visits stopped because they had to study, get on with their A-levels, and prepare for university - what I should have been doing.
It was so hard seeing everyone else moving on.
After several sessions of chemotherapy I had my left tibia (shin bone), knee, and distal femur (lower thigh bone) removed and replaced with a metal prosthesis. I then received post-operative chemotherapy.
For 14 months, my entire life was hospital and home.
During this time, I turned 17 and a few months later my chemotherapy was given to me at a different hospital. I was moved from a children's ward to an adult's ward. To say this was hard to deal with would be an understatement. The isolation was worse as I had no means of contact with the limited friends that I had made.
Throughout treatment, the college staff were so supportive. They would come and teach me at home in-between chemotherapy sessions out of their own kindheartedness. The aim was that I would continue with school and sit my A-levels with everyone else, but unfortunately I was too sick for this.
This was a tough pill to swallow because you feel stuck, and you don't know when things are going to stop. Growing up, I lived in a non-progressive neighbourhood, and university was my chance to escape.
Cancer was not going to stop me reaching my end goal despite the bad days. It wasn't even up for discussion.
The area I grew up in was predominantly Indian, which did have drawbacks with unkind comments from people my age. Returning to college after treatment, I decided that I wouldn't wear a wig. My hair was very short, and I had multiple ear piercings. Back then, it wasn't the norm for an Indian girl to be looking like that!
It caused lots of open stares and whispering.
After treatment, I felt like I had to overcompensate and try to do things as normal (despite life-changing surgery) because I wanted to be like any other teenager/ twenty something. I travelled the world, danced on tables... I wasn't going to allow cancer to win.
In 1990, I went to Essex University as I thought it was best to be on a campus university as I wasn't sure what I would be able to do physically. I soon realised that was a mistake, and that I never should have turned down London School of Economics (LSE) as that was my dream. Now that I was in remission, I shouldn't be the one to stop myself pursuing my dreams.
So, in 1991, I went to LSE to study Accounting, Finance and Economics. Unfortunately, I missed my first term due to corrective surgery, which made things even harder when you can't involve yourself in all the activities and need to explain a cancer that no-one has ever heard of. It was even more difficult to get others to comprehend the impact of limb-salvage surgery. I then had another procedure in my second year due to a reaction to the prosthesis.
Over everything, the long-term and late effects have been the hardest thing. I have suffered renal impairment, had multiple follow-up operations, I have an auto immune condition, and I continue to experience extreme pain in my joints.
Once you get through treatment, you think that everything is over, and that couldn't be further from the truth.
With regards to fertility, nothing was discussed with me at all, including preserving my eggs. I was lucky enough to conceive a son naturally, and I had my daughter through IVF, but I also experienced seven miscarriages.
Despite everything that has happened, I do feel very lucky. I've seen some extraordinary things, including the Galápagos Islands, Machu Picchu, and the Maldives. I tried skiing, which I think might have been a step too far — it was so painful; I don't know how the para-alpine skiers do it!
In 2018, I had my first major revision in 31 years. Unfortunately, it didn't go to plan. One huge issue is that I had one of the original prosthetic designs which they no longer made. From waking up from my procedure and with the first bend of my leg, I knew there was something wrong. Six weeks later, at my first post operative check-up, this was confirmed. The replacement was too large for my small frame. Due to the gastrocnemius flap atrophying, I was at risk of the prosthesis coming through my skin.
I was placed in a full leg brace and five months later I had a huge skin graft where they removed part of the outer thigh and placed it over my knee. Again, this was not a straight-forward procedure. Another four months passed, and I underwent a procedure to replace that prosthesis with a modified, new, smaller piece.
Following on from that procedure, I was up and about very soon, but I never felt quite right. On the first day of a holiday in 2022, I was screaming in pain and couldn't move. This happened on and off for a few days but then disappeared for the rest of the holiday. Once I returned home, it happened more frequently, to the point where I couldn't use my leg at all.
I managed to see a consultant, who couldn't see any issues. This continued, and unfortunately there was an infection in my femur. By the time the consultant had picked it up my femur was already deteriorating. It slowly started to shatter inside, and I could no longer move.
Eventually in 2023, I had my hip and the rest of my femur (thigh bone) replaced, meaning that everything in my left leg was gone. That was my most recent procedure. I have gone from requiring no mobility aids to being permanently on crutches to move around. Unfortunately, I have had several major falls and have broken my ankle, which I can't afford to do. We are now exploring further surgery to help with this.
Times have changed from when I was diagnosed, but I remember how isolated I felt then, and have done all these years. It's important to reach out to others whether that's your family, hospital staff, or support groups.
Also, don't be afraid to ask as many questions as you can, no matter how silly you think they are. This is happening to you at a time when there are so many other changes going on in your life. Don't be afraid to ask for help, cry when you need to, and laugh when you need to.
The reason I'm still here 37 years on is because I was diagnosed within four months. I was one of the lucky ones, but I have met others who were not diagnosed until much later, and their treatment was not as effective.
When young people complain of extreme pain, doctors, GPs, and medical staff need to listen and take action. It's so important to listen to your body as you will know it better than anyone else!
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