In 2007 she travelled from our home in Scotland to Sheffield for gamma knife treatment on one tumour that could not be removed. She then went on to have spinal surgery and laser surgery on her left eye. In 2017 she was due to go in for a Whipples operation, but on opening her up it was decided her endocrine cancer had spread too much, and they couldn’t proceed. She then went to the Beatson Institute in Glasgow for chemotherapy treatments (3 rounds). From there she went onto lanreotide injections and was on this for 5 years.
Sharon first heard of the belzutifan treatment from fellow VHL warriors in the USA which was having fantastic results. She fully invested in the treatment on finding out it was on trial here, she tried to make it her mission to get on it. She tried and tried her hardest and went for tests. Unfortunately, her white blood count was just under the acceptable range. She failed this a few times. This was very disappointing for us as a family, but we still pushed on with eventually no success. Sharon got chemo treatment at the end of November 2022, which she took a bad reaction to, and on the 1st December 2022 she ended in hospital, we were told she wasn’t going to make it. On the 16th we were told as a family (Sharon didn’t know) that she wasn’t going to make the night, but she was a fighter and made it.
We were then told the next day, there was nothing else that could be done for her. She was then put on palliative care (she still didn’t know) and they gave her 6-12 months to live. Even in hospital she still fought to get on the trial, sending emails and phone calls to anyone she could. She even had a Zoom meeting with Professor Caplin in London. She still wanted on the trial and fought to get on it.
We got Sharon home on the 8th of January 2023. Sharon’s favourite time of the year was Christmas, which she spent in hospital. So, on the 24th of January, we had her Christmas Day at home, with family and close friends (we all put on brave faces to make it a day to remember).
The 14th of February was the dreaded day that she was to see her consultant. This was the day she found out the truth. It was one of the hardest things I have ever done, taking her to the hospital to hear the news. As you can guess she was devastated, she believed still that if she could only get on the trial, she would be ok. It wasn’t happening. Unfortunately, on the 14th of March sadly Sharon passed away peacefully at home with her family around her. 💖💖💖R.I.P.
I still believe if the trial had been used right and not just for selective patients that Sharon would still be with us. Sharon was such a brave warm amazing woman, who always had a smile and amazing laugh no matter what she went through. She always made time for fellow warriors and would do anything to help them. I’m sure even up there she is still fighting for fellow VHL and other cancer patients. I feel that belzutifan should be open to all. After over 20 years of fighting her body had no fight left. We met some amazing people over the years, and I hope I can still fight with them, and continue to raise money to fight this horrible disease.
Andrew McNeilly
