Tuesday 19th November 2019

Rachael in hospital

My tumour is called a Giant Cell Tumour of the Clivus. It's attached to the Clivus bone in my skull and presses against my temporal lobe and brain stem. Giant Cell Tumours (GCT) are very rare and aggressive; they are usually found in long bones such as legs and arms, so the location of mine is extremely rare. 

Because of that, the tumour cannot be surgically removed. 

As it is so rare, there was little knowledge about it and no treatment. I had three brain surgeries, radiotherapy and bisphosphonate infusions but it still continued to grow. By this point, it was pressing well into my temporal lobe and brain stem. I suffered from double vision, headaches, epilepsy, balance and speech problems, left side weakness and severe fatigue. 

My family and I thought nothing would work, until my oncologist told us about a new clinical drug trial. 

My parents contacted the doctor in charge of the trial, and told him about my case. He agreed I would be a good candidate, so my oncologist referred me to him. My parents and I travelled to Birmingham from Edinburgh to be assessed for the trial. I had blood taken, a physical exam and signed a lot of paperwork.

Then, finally, one and a half years after I was diagnosed, I got my first injection. 

I was the first person in the UK to receive this drug. My parents and I travelled to Birmingham every week for three weeks, for what they call a loading dose. After the loading dose, we travelled there once every four weeks for further injections. 

After three months, I had a scan to check if it was working. The results showed that my tumour had shrunk by 1.4cm, which you could see in my brain scans from before and after starting the injections. Another three months later, I had another scan that showed my tumour was stable. My left side weakness, speech and balance had improved and my seizures reduced. 

Rachael's brain scans showing her tumour shrinking

The trial saved my life - without it, I wouldn't be here. Thanks to medical research, my family and I have overcome this obstacle and I get to live the rest of my life. 

I strongly believe that young people should have more access to trial drugs and be involved in medical research. Doctors and consultants should be made more aware of trials and shouldn't be afraid to use them. Not only could it help advance the future of drug and treatment progression, but it would also save lives. 

Rachael shared her blog as part of our General Election 2019 call to all political parties in the UK to #EndCancerInequality.

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