“Suddenly, when you realise that you could be dead in a fairly short period of time, it makes you change.”
Hi I’m Andrew, I’m a bit of an old reprobate really. I’m a firm believer that life is for living, I love jumping in puddles, good food and nice wine. I’m married and have two grown up children and three granddaughters. My party trick is sucking jelly through a straw. I love all kinds of music from opera to pop music but I hate country and western. Although I used to be an architect with my own practice, after being diagnosed with bladder cancer I decided to stop the day job and dedicate my time to starting a bladder cancer charity. Health wise, I’ve started running this year in a bid to get fitter having had five years of fairly serious medical problems.
No, I’d never heard of it, and that’s odd as my mum was a nurse and my dad was a medical tutor. I also have aunts who were nurses, but I’d never heard of it before they told me I had it.
I had sudden blood in my wee while I was at an exhibition in Birmingham. It was bright red, a bit like weeing red paint. It was terrifying. Other than that I had no other symptoms at all. The doctor at the emergency clinic told me I had an infection and then I was sent for some further tests at the hospital. I had a cystoscopy and some other tests and they told me I had a friable prostate. They said that was the cause of the blood in my wee and not to worry.
However, the blood in my wee carried on for another eighteen months. I was given some tablets to try and reduce my prostate, but it didn’t make any difference. I was finding it harder and harder to go to the loo. Luckily for me I then moved house and saw a locum at my new GPs. I told him about my symptoms and very rapidly I was sent to another hospital for further checks. I remember him saying, ‘We’ll put it down as a cancer referral ... but just for speed …’ I wasn't sure what was happening at the time but I just wanted it to get sorted out.
When I saw the radiologist he asked me how long it had been since I’d seen someone, and it was like when you go to the garage and they ask you who last serviced your car. I knew straight away something was very wrong and something had been missed. They told me there was something in my bladder, ‘a mass’ which looked like a tumour but that they couldn’t be sure. They told me I’d have to have a rigid cystoscopy straight away under general anaesthetic – without it they couldn’t see clearly because of all the blood. After the cystoscopy they confirmed that I had bladder cancer ... I don’t remember much else from that meeting, my mind went blank.
I had a Grade 3 T4.
The offer from the medical team was simple. They could only offer me bladder removal. There was no point in me having chemotherapy as well because the kind of bladder cancer I have doesn’t respond to it. Because there was very little information on the kind of bladder cancer I had they really couldn’t give me an idea of prognosis, but they overall survival for this stage of cancer is only 15%.
I had a couple of weeks to wait before I went in for the surgery. I threw a big party, got engaged, went to the seaside, saw a proms in the park … but basically I was sleepwalking through that whole period. The concept of having your bladder removed is so alien – it doesn’t matter what anyone says to you, it’s mind blowing and impossible to come to terms with at the time. You just can’t comprehend life post surgery. You know you have to do it but the future at that point is an unknown concept.
Well, you suddenly realise that you’re mortal and that’s very strange, because facing your mortality is something you might think about when you presume it’s a long way off, but suddenly, when you realise that you could be dead in a fairly short period of time it makes you change. It makes you realise that every day is important and your own personal happiness is very important. At that point you need to stop the bullshit about life and realise what the best thing is for your future. Everyone is different and makes different choices.
For me, my choice was to not do the day job any more but to find a way to make a difference to those affected by bladder cancer. At the time there was no support at all for patients. When I found out bladder cancer was so common and that there was just no one there to help ... you have all your loved ones and friends around you but you have to deal with it yourself. It's a very personal thing having a cancer diagnosis. As much as everyone around you supports you, you do need to find people who truly understand what's going on in your head, which was why I started the Fight Bladder Cancer charity.
Because the situation with bladder cancer is unfair. It’s a cancer that’s not talked about, it’s not properly funded, it’s not researched – basically it’s ignored. As a result people are dying who don’t need to die. People are in a very lonely position out there with no one to talk to. We need the spotlight to turn on to bladder cancer, because otherwise in another thirty years there will still be no new treatments and no proper research and more people will be dying from it unnecessarily. We need to get an equal awareness and effectiveness with other cancers, so that people have a better chance of survival. We need to get the same spend per patient as other cancers. People are dying because no one will talk about it. That’s a very sad place to be.
I think I’ve already beaten it. In fact I’m sure I’ve already beaten it ... but there’s always a ‘but’, and that’s just what it’s like to live with this diagnosis. The longer I am clear, the chances that it will come back are less and less, but it’s still a possibility. I know people ten years past their bladder removal when the cancer’s come back. And if it comes back there’s virtually no second line treatment for advanced bladder cancer and the prognosis is exceptionally poor. That’s always in my head. I know it is the highest recurring cancer of all and that’s scary. I’m pretty certain I’ve beaten it, but the phrase is pretty certain, not definite.
Shout Out About BC
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