Sharon and her son Robert's story

Last September 2020 covid was the main problem keeping both my sons who are disabled safe. I never thought testicular cancer would be a bigger one or we would be facing a cancer diagnosis with my eldest. Last year we were changing my son 30 year old he has fragile x syndrome. His left testicle was huge. We took him to the local hospital and he was immediately sent to a bigger hospital. The next day after a ultra sound we were given the news it was more then likely testicular cancer. He would require a operation to remove the tumour and testicle. We left the hospital thinking ok get the operation over with and that’s that. No not by a long shot. 2 weeks later we took him back in and he had the operation. It was hard but I thought the dam things gone now. He was then referred to oncology. We tried getting bloods from him in the November didn’t happen so he was admitted in the December bloods and a scan. This is when we were told it had gone to 2 of his lymph nodes. We had to fight for treatment for him taking on the trust. We didn’t know were to start but we requested his medical notes. Eventually we got a human rights lawyer involved. We were told he couldn’t have the BEP chemo fair enough as it’s over 70 plus hours and he would not sit to have it done all his procedures like blood draws are done under sedation. I never thought with a curable cancer we would be told there was nothing could be done and the oncologist would send him home with 12 months to live. To say we were devastated and shocked and frightened is an understatement.  I am a very proactive person and to say I wasn’t excepting 12 months!! After taking the trust to court etc we got Robert treatment. A complaint is in now and is being investigated. If the oncologist had talked to us we could have worked with him to find a treatment package and ways to deliver it. My mental health has taking a battering must admit as Roberts oblivious to what’s going on. He doesn’t know or understand that he has cancer etc. Roberts since January been having chemo treatment and has now finished it all. Just because your disabled it doesn’t mean you can’t have treatment. Yes it’s harder but it’s doable Roberts proof of this.  Sharon Bourn