“There are periods of time when it really gets me down. It’s the fear that it might come back, and the fear that the battle may last forever.”

Hi, my name is Deborah and I’m 59. I am a functional skills co-ordinator, which really means someone who sorts out English and Maths for adults with learning differences. I also teach a retail class in a local charity shop. In my spare time I love shopping and meeting up with friends. I’ve got two daughters in their twenties and I’m married to Paul. We met when we were four years old at junior school, then we lost touch and re-met in our late forties, so we’ve known each other a long time.

Had you heard of bladder cancer before?

I’d never heard of bladder cancer before I was diagnosed. Never.

What were your symptoms?

Almost three years ago I went to the loo and had some blood come out. I thought, ‘Ooh, that's a bit strange.’ A couple of days later it happened again, so I thought I’d better go to the doctor. I assumed it was a urine infection, because I’ve had them on and off for years, but fortunately the GP sent me straight for a scan. The nurse doing the scan said I had a ‘fuzzy area’ and that she’d report it back to my GP. I still didn’t really think much of it, because, well, at the time I thought everyone gets cancer, but not me. I got home and walked in the front door on my way back from hospital and the phone was already ringing. It was the hospital – they said they needed to send me to see a consultant – at which point I suddenly started to think something was going on, as they had rung me so quickly.

I had an appointment for a cystoscopy two weeks later, although I had no idea what it was at the time. When I walked into this little examination room, they looked at my scan results and said, ‘Well, we need to get this out.’ I was booked in for a TURBT followed by a Mitomycin chemo wash, although that wash didn’t happen because there wasn’t any Mitomycin in the hospital. So the consultant asked if I wanted to go ahead with the op anyway. To be honest I didn’t really know anything about what was happening to me, so I just said, ‘Yes.’ I wanted it over and done with.

What was your initial diagnosis?

It was a G2 pTa, so ‘nothing much to worry about’ according to the consultant. But since then it has become a more aggressive G3.

What has your treatment been?

After the TURBT I was told I’d have a check up in three months time, and that was clear. Another check up three months later and they found another fuzzy area. The nurse told me she though it was an infection, but after another TURBT it turned out it was carcinoma in situ (CIS) Grade 3. At this point in time I had a phone call from a different consultant who said I needed to come in for BCG treatment. So I started that treatment.

I saw the same consultant again a month and a half later. He asked me why I wasn’t having my bladder removed. I wouldn’t normally swear, but I thought, ‘What the fuck are you talking about?!’. I’ve never had a consultation since. It put me in a bit of a panic really as I thought, should I carry on with BCG or should I have my bladder out now? Now I’m three years down the line and I’m still thinking the same thing. I always have that thought in the back of my head, should I have my bladder out now? I’ve been clear so far (touch wood), but I have a voice in my head that asks if I am just delaying the inevitable because of the high risk of recurrence. So, it’s like playing a waiting game, wondering, ‘I’m nearly sixty, should I go for this now or should I wait til I’m sixty five or maybe even older?’ How long do I wait for what I think may be the inevitable? It’s a very difficult balance.

I’ve had eighteen BCG treatments so far. I’ve been lucky, because I was one of the last people to get a dose of BCG before the shortage, but other bladder cancer patients I know have not been so lucky. At the moment I am just waiting to hear when my next check up is. 

It’s funny, every time you get the all clear after treatment you are euphoric, but then are basically starting again and it’s time for the next round. It’s draining.

How has it changed your life?

Umm, it’s interesting because initially it was like the end of the world because I thought I was never going to have cancer. That would always happen to someone else. Now, having learnt more about bladder cancer, I know that I don’t fit any of the normal criteria – I’m not a bloke over sixty, I’ve never smoked or worked with chemicals. I have always had a healthy lifestyle. So, the diagnosis was a bit of a shock. It felt very unfair ... why me, why the heck have I got it?

I would say now that I’ve just learnt to live with it. I try not to let it affect my life too much. That’s the best I can say. There are moments of well, not despair, but periods of time when it really gets me down. It’s the fear that it might come back, and the fear that the battle may last forever. In some ways if you have your bladder removed it’s probably better, as I think there’s more likelihood of staying clear.

With what I’m having done now, because I keep being told how aggressive my cancer is, if I go to the maximum 27 BCG doses, then what happens after that? My head is thinking all the time, ‘Is it coming back, is it coming back?’. I worry how I am going to keep it away. I’ve had my optimum doses, but let’s face it, they don’t really know what the optimum dose is. Some say you only need BCG for a year, some say differently. There will always be that thought. In fact right now I feel just that, I can always feel my bladder and can feel where the pain is ... and I worry if there’s an infection or is it the cancer back? Life just goes on like that all the time. It’s always there in the back of my mind.

There’s no point going round with a long face forever though is there? You’ve got to try and be positive. You’ve got to let your emotions out when they have to come out, but that’s not normally in front of other people. To other people I’m coping with it really well, or that’s what they always tell me. What’s the alternative? I want to scream sometimes. I don’t cry about it now but I do have down periods ... although they don’t last very long.

I have learnt to live with bladder cancer. I don’t want to live the rest of my life with it, but that’s what I feel I’m going to have to do. I see people who have had their bladders removed and they are living their lives freer of cancer, so that’s always in my mind, making me wonder if I should be going for bladder removal.

Why is this campaign important to you?

Well, I don’t like my picture being taken at all, but this is so important as it’s about bladder cancer. The information needs to be out there, so this is a bigger thing than me. Somebody has to start the ball rolling.

Are you going to beat it?

I don’t know. That’s the problem isn't it? I just don’t know. Both ways scare the shit out of me. I do often think, after I’ve had the BCG and I’m feeling really crap, ‘Why the hell am I putting up with this?’ if in the end I am delaying the inevitable. I wonder why don't I just go for bladder removal now while I'm still fit and healthy. I just have a feeling I will end up having my bladder out as I’ve been told my cancer is highly aggressive.

Debs

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