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I was diagnosed with cervical cancer not long after Jo Maxwell passed away. My cancer was staged at 1b and I had a radical hysterectomy. Cancer is something that doesn’t ever leave you. I’m grateful for the treatment I received almost twenty years ago, but cancer leaves its scars both physically and mentally.
I had met people during my treatment who were going through the same thing as me, but some those close to me struggled to understand the impact my diagnosis had on me. I remember once looking out of my window and seeing a friend walking down the path towards my front door. I felt so happy that she'd taken time out of her day to come and see me. But instead of ringing the doorbell she just posted a card through my letterbox and quickly returned to her car. She wanted to show that she cared but didn’t know how to speak to me, comfort me or empathise with me. So I can really empathise with how Jo Maxwell struggled in getting the support she needed back then. Just like her, at times I felt really alone. I wasn’t aware of any forums, helplines or services so I poured my feelings into a notebook as a way of trying to make sense of what I was feeling. That was the closest thing to therapy I could find.
I also really struggled to find accurate and helpful information during that time. Just like Jo and her husband James, I spent countless hours on the internet trying to find out as much information as I could during my treatment, but with little success. So when I found Jo’s, it was like finding a light in the dark. There was everything I needed in a nutshell: support, information and friendship. The Forum and the Helpline were, and still are, invaluable. You can speak to friendly people who are there to listen to you no matter what you’re going through.
I volunteer with Jo’s Voices and it’s given me the opportunity to give something back. Jo’s Voices allows me to use my experiences of cancer to shape their projects. A day where I have done something for Jo’s always feels like a good day, whether that’s responding to a survey or reviewing information. I feel that Jo’s hope that everyone could one day have access to reliable information and wonderful support will be realised through this wonderful charity and it has already helped me and so many other women. I always feel like my input is taken seriously and I know if I pick up the phone I’ll get a welcome response.
There is definitely so much more understanding of cervical cancer now than there was 20 years ago and I feel Jo’s has played a big part in that. I remember when I was being diagnosed I found the referral process incredibly frustrating. It took three lots of smear tests spread across about 18 months that all showed cell changes before I was finally referred to the Women’s Unit at the local hospital for further investigation.
After all these years I still wish that they’d referred me sooner. Who knows, maybe I might have been saved a lot of treatments and perhaps I wouldn’t have lost my fertility. It seems like there is now a faster pathway when a smear test shows cell changes which is testament to the medical advances that have happened over the last 20 years.
My greatest wish is that no one has to go through what I went through and that we can achieve the goal of a world without cervical cancer. I know that Jo’s and the work they do has, is and will play a huge part in that. When I was diagnosed in 2002, cervical cancer wasn’t really ever spoken about and there seemed to be a great deal of shame about it. It’s so amazing to see women with similar experiences to me fronting campaigns and talking openly in the media about their stories.
But there’s still a lot we need to achieve to make that dream a reality. There are still a lot of barriers to increasing cervical screening and HPV vaccine uptake as well as tackling misconceptions and misunderstandings around cervical cancer and HPV. But I know Jo’s will be there to shout about this and I’ll be with them every step of the way.