15th March 2017
“I am living with cancer”: Saddleworth mum shares how her work as a Cancer Champion has helped others, and how you can do it too
As the Partnership continues its mission to recruit 20,000 Cancer Champions to spread positive health messages and support people affected by cancer across Greater Manchester, one Saddleworth mum talks about what being a cancer champion means to her.
My name is Jo Taylor. I’m 46 years old, I’ve been married to my lovely husband Jeff for 25 years and we have two beautiful children, our daughter Faron who’s 10 and our son Regan who’s 12 now. I’m not a big fan of gyms but I do like to be active and I particularly enjoy cycling and walking as I love being outside. I like pitching in with my local community as well and like a lot of mums I get involved in my kids’ school via PTA meetings, the local community association etc, so I’m pretty busy.
I was 38 when I was first diagnosed with breast cancer. It’s hard for anyone, but it felt especially hard to me as I had a very young family (my son was a toddler and my daughter was only a baby at the time). We had just moved to Saddleworth 10 months prior to start a new life in a new place. We had the perfect life, everything was great. Then cancer hit and our lives completely changed. I don’t think even I realised at the time what a big impact it would have on us. What with surgery, chemotherapy, radiotherapy and follow-up surgeries, a lot went on over the next few years and it felt very difficult. I now have secondary breast cancer, which unfortunately is incurable.
The information I got from the NHS at the time of my diagnosis was good but was mainly leaflets from health professionals. The information was quite clinical and didn’t answer some of the more personal questions I had. For example, I knew that I wanted everything to look as ‘normal’ as possible as quickly as possible and was thinking about having reconstruction of my breast. I wanted to see actual photos of real women who had had this done, to help me decide (I mean, you wouldn’t buy a new car without checking it out first, would you?) But that sort of information wasn’t readily available and still isn’t (although it is now a little mission of mine to change this!). And if you can’t find information via the NHS, you go looking on Google and places like that, and you can get a bit lost – there’s a lot of misleading information out there, it can be quite scary.
I wanted information that was personal to me, and I realised that I probably wouldn’t be the only one looking for a more individual approach. There are a lot of pre-conceived ideas about who a ‘cancer sufferer’ is and even what they look like that can make you feel a bit like you’re all on your own. When I was first diagnosed I was quite young and throughout my various treatments I was often sat in waiting rooms with people who were a lot older than me. I had no-one similar to me to talk to.
That all changed two years after I was diagnosed when I met some new friends through a Breast Cancer Care’s younger woman’s forum. It was a two day residential course and I met some fantastic people, several of whom I am still really good friends with now, eight years later. Four of us got together afterwards and did a photoshoot for Red Magazine and, during that shoot, I got the idea to make a website all about breast reconstruction that would help people get all of the personal, individual information that I felt was missing when I was first diagnosed. I did my research, pulled together the most helpful information I could find from reputable sources like the NHS and breast cancer charities, and put it into plain English for my website After Breast Cancer Diagnosis (ABCD)
The main thing that makes my website different is that it tells real stories about cancer from a personal point of view, not just a clinical perspective. I share my experiences and I encourage others to tell their stories as well – I’ve got someone writing a piece about breast density as a guest blogger right now. It’s all about real people and what really happens once you’re diagnosed. And I get so much positive feedback about how useful people find the site.
To me, being a cancer champion just means supporting the people around you by talking about cancer more openly. For example, I went to an event recently to help raise awareness about the work that Maggie’s Centres do and chatted to quite a few people there. There was a lady who didn’t want to self-check her breasts because she didn’t know how to do it, so I talked her through it and now she knows how and feels much more comfortable with it all. Another lady I spoke to thought cancer was a hereditary disease – myths like these are so important to tackle. Hereditary breast cancer accounts for only 5-10% of all breast cancers diagnosed. The rest are all down to lifestyle and other factors as well as being just plain unlucky, cancer at the end of the day is down to just something going wrong at a cellular level.
I was able to talk her through things like exercise, diet, not smoking, and she really took it on board. She took my details and she’s just invited me to give a talk at a group that she leads so hopefully that will influence other people too. That’s what I really love about being a cancer champion – the connections you can make with other people.
Talking about cancer can be hard, but people are living with it a lot longer now. Patients like me have a median survival of 3 years. I’m into my third year now and I’m still here and living a very full life! We’ve got a family holiday to Murcia coming up, we’re all going to Glastonbury later this year and I’ve possibly got a solo trip planned, which I’m very excited about!
I feel like one of the things that has really helped me is that I love being active. Don’t get me wrong, I’m not one of those people who have to beat their personal best time when they’re out running or anything. I just enjoy being out and about, doing things at my own pace. Cycling is definitely my favourite exercise, but I love walking too. It’s just so lovely to be outside in the fresh air with your friends.
If you want to become a cancer champion – do it! You don’t need to make a website, lead talks or anything like that. Just talk to your friends and social circle. You can influence more people than you realise just in your day to day life – everyone can make a difference. It’s about being able to spread the message that you can do something – you can take control of your own health, you can be better informed and, most importantly, you can make a difference. I absolutely love helping people – and you will too!”
Jo Taylor runs the website After Breast Cancer Diagnosis
You can also follow her on Twitter at @abcdiagnosis
This case study is an example of the excellent work our GM Cancer Champions could get involved in. Links to further information have not been verified.