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A year ago our CEO was told she had cancer. Here’s her story.

A year ago our CEO was told she had cancer. Here’s her story.

12 months ago I was sat in a chair being told I was one in a million. Now normally this is the kind of thing that I would've lapped up - especially around appraisal time - but this day was anything but normal.

20 minutes before that phrase hit my ears I'd left my husband in the car, telling him that he didn't need to come in with me. I’d had a recurring cyst removed a couple of weeks earlier, and I was only popping in to make sure my scar had all healed. I was sure I'd be back in 5 minutes.

The good news was that the scar had indeed healed nicely.

The consultant was sat on the other side of the desk to where I was sitting. We could not have been further away from each other in that room if we tried. I remember him leaning back into his chair to tell me I was one in a million. It was a phrase I was going to have to get used to hearing over the coming months. He went on to say that they'd never had anyone else come through their doors who had what I had. That I was being referred to the Royal Marsden immediately. He almost sounded excited. He then reeled off a long name.

Now I'd like to think that I had an inkling of what he meant because many years ago I worked closely with medical underwriters, but I suspect it's more likely down to the number of hospital and medical programmes I can't get enough of - see, TV can be educational!

I remember my reply. "Are you telling me you've found cancer?" Which I now realise sounded more accusatory than it did a question. But I was angry. He chose now of all times to use jargon - which also amused me slightly as I've spent a good proportion of my working life championing the power of using plain English. He nodded.

The whole process felt like it took an eternity - each day felt like a week. But in reality I was treated really quickly, and a skillful operation by a reassuring and determined specialist sarcoma consultant cured me of the cancer that was cosily setting up home in my back. But until that point came, I was living with something that I knew was silently and sneakily spreading its spindle-like tentacles within my body - and had been for a good few years before it showed itself. And that did my head in. This 'monster' made me itch. If I could have clawed it out myself I would have done. But I'd have needed to be a contortionist to do that, and I have trouble touching my toes at the best of times.

My employer was brilliant, and I'll never forget the love I felt from colleagues, friends and family. It mattered more than they will ever really know. But even with all this love and support I felt very alone. I was one in a million. It was a lonely club to be in. And a club I didn't want to be a member of. I lost count of the amount of times I came into contact with people who almost took delight in telling me or those around them (like I didn't know) that what I had was extremely rare. Was that supposed to make me feel better or somehow special? Because it didn't. I felt vulnerable. Isolated. For while after the operation I was incapacitated. And I cannot begin to describe how desperate I was to 'get back to normal'.

There were some lighter moments. For some reason most people assumed I had breast cancer, and would silently mouth those two words and gesture with their hands - just in case I hadn't picked up on the area of the body they thought was involved. It all felt very Les Dawson's Cissie and Ada at times. And when I was talking to the consultant about the operation, he tactfully told me that the extra stone (ahem or two) I was carrying was actually a GOOD thing, because it meant there'd be enough 'spare' skin available, and I'd avoid having to have a skin graft. Hurrah for cakes!

I called the operation my 'back lift'. I lost a whole bunch of freckles I'd grown up with, and it was very strange. It was like a constellation you knew so well not being in the sky anymore.

And I learned a huge amount. I saw and felt first-hand how good and bad businesses are at responding to customers who are unwell. I had to repeat myself too many times. Some days I was ok with that. Other days the words got stuck in my throat - the reaction was normally one of an awkward silence, followed by the obligatory call for my reference number. Those experiences have certainly helped me to have a much deeper understanding of what customer experience really means, and the impact it can have when it isn't so good.

And it did change me. It gave me the drive to co-create - with a couple of friends who are equally as passionate as I am about improving inclusive accessibility in the UK - MeIncluded.co.uk. An online community where people review and share their experiences of how good businesses and services are at disabled access, the quality of facilities and the customer service they provide. These shared real-life experiences give people an informed choice about where to go, eat, stay and spend their money. And collectively this constructive feedback helps businesses hear, understand and respond better to what their customers want and need and  shine a light on where they are doing well, and where they need to improve. We want to make good change happen - in a way that works for everyone.

So I expect you're thinking I'm going to end this blog  by saying how having cancer turned out to be the best thing to happen to me. I'm not. It wasn't. But what it did do was let me see and feel first-hand the significant difference good and bad customer service can have on someone going through a tough time, the impact of language and the strength that comes from having support from people around you. And I thank it for that.