“I had blood in my wee. Twice, simple as that. I told my GP who dismissed it as an infection.”

Hi, my name is Mandy and I’m 50. I like spending time with my family and I love my dogs. I’m married to Tim, and we’ve been together since 1986, so we’ve been through a lot (I had a Mohican at the time!). I go to Zumba when I can and I like to spend time with my friends. I love good food and get togethers and being sociable, oh, and the odd show. I also crochet a lot under the pseudonym The Happy Hooker. And I have tattoos ... my favourites are my daughters’ initials and Tim’s name.

Had you heard of bladder cancer before?

No, never. Which is odd because then I found out my grandad had it, but I’d never heard about it because no one in the family spoke about it.

What were your symptoms?

I had blood in my wee. Twice, simple as that. I told my GP who dismissed it as an infection and treated it with antibiotics. She sent it for an infection test, and of course it came back clear, as there was no infection. I wasn’t offered a follow up appointment as that’s not the normal practice with UTIs. I took the antibiotics and then several months later I had blood in my wee again and I thought there was no point going back to my GP as she would just dismiss it as another infection. Being stubborn I decided not to go back. Several months later though, I was speaking to a locum about niggling headaches I was having, and she was so thorough. She was running other blood tests and I decided to mention the blood in my wee to her. All of a sudden alarms started sounding and everyone jumped into action. From there it was all very quick.

What was your initial diagnosis?

I can’t remember the technical terms. When they told me I was a bit of a drama queen and I struggled to take it in. It was very small and non invasive though. It was described as an anemone which was half a centimetre across on the right hand side of my bladder. The man told me I had the ‘insignificant type’ of bladder cancer. Luckily, I can laugh at that comment now!

What has your treatment been?

I had a TURBT late last year, with a Mitomycin chemo wash immediately afterwards. That was it and I was sent home. Three months later my first check up cystoscopy was clear, then I had another six month check up which was two months late, but luckily it was all clear. I’ve been clear since then and I’ve now just been put on annual check ups.

How has it changed your life?

It hasn’t changed my physical life, but between diagnosis and check ups I was consumed with knowing it was the highest recurring cancer, so it was going to come back. Then, after my first all clear I was fine, but then they said I wouldn’t have another test for six months, so I had months where I felt very confident. But then you get neat the next check up date and you worry again.

Every morning when I wake up I wonder, ‘Has it come back, have I got cancer?’ Physically, there’s nothing there, it’s just the statistics that frighten me. Sometimes it’s the only thing I think about all day. It’s scary knowing the people I’ve met through the Fight Bladder Cancer group who were diagnosed at the same time as me have had recurrences, and also people who’ve gone downhill really quickly. There are people who were diagnosed late who have now got advanced aggressive bladder cancer and also people we have lost to the disease.

It's difficult, because my parents have enough on their plate so I protect them, in fact, I didn’t tell them I’d been diagnosed until after I got my first all clear. I also have a very young daughter and I don’t want to tell her. I have to look after my family. I think when you are a mum it’s difficult, so I put on a brave face most of the time. I just think ‘What have I done?’ I don’t smoke, I eat healthily ... we do healthy things. I don’t know why it’s happened to me.

Why is this campaign important to you?

Because no one talks about bladder cancer. No one knows anything about it. When I talk about it people immediately forget I have it because I don’t look ill. I want people to be more aware of it, I want more money to be put into research and treatment. I want anybody who goes to the doctor with a genuine fear to at least be examined. All it takes is a dipstick test to know if there is blood in your wee, and I want GPs to understand and check properly. People shouldn’t feel embarrassed about it or feel ashamed. We just need to make people aware of the signs and symptoms and get people to talk about it.

Are you going to beat it?

Yeah, I think I have. My husband refers to it as ‘that time I had a touch of cancer’, it was a bit like ‘the week I had the menopause!’.



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