Real Stories...

I'm Pete, a 49-year-old second-generation Italian, PR and Marketing Manager for a UK entertainment company. I have been with my partner, David, for coming up to 12 years. I'm still young at heart, and to be honest I have a bit of a checkered past (given the industry I work in!). I love good food, and enjoy the gym and keeping fit. I'm always up for a good city break or lying on a beach somewhere hot. I've a rather eclectic taste in music – what else would it be given the decades I have lived through? Also, we have a dog called Thomas, he's a rescue and has ‘issues’.

How did bladder cancer come into your life?

In autumn 2013 I was at work, went to the toilet mid-afternoon as usual, but when I went to the urinal I started weeing blood. I didn't say or do anything, just went home, picked Thomas up from the vet (he had been neutered that day). At home I had another wee – I was weeing blood again. David came home from work as I was calling 111. I explained what had happened and then the doctor called me back immediately and made an appointment for me at the out-of-hours clinic.

At the clinic the doctor asked me to produce a sample. I did, but it was clear, with no visible trace of blood. I felt stupid, the doctor put me on antibiotics and told me to visit my own GP after the weekend. I carried on having blood in my wee sporadically for the next 4 days. By the time I got to see my own GP to give another sample, my wee was visibly clear. My GP thought it was either an infection or possibly a kidney stone and recommended that I have an ultrasound scan. After 4 days I stopped bleeding and things returned to normal.

I received the appointment for the ultrasound, but meanwhile, almost exactly 4 weeks after my first bleed, I started to have blood in my wee again. I rang the hospital to see if they had any cancellations at the ultrasound unit, and amazingly they had one within the hour, so I went straight to the hospital for the test. I was at my GP's surgery that evening and he told me the results from the ultrasound came through and showed nothing.

But I was still having blood in my wee. The following week we were due to go to Las Vegas to celebrate a friend's birthday so I needed to make a decision about what to do – to cut a long story short, I spoke to the insurance company and as I had not been diagnosed with anything they said I was covered. I went to Vegas – it was great and whilst there had no blood in my wee.

A few days after we got back the blood started to appear again. I decided this time I would take a photo diary. To this point i had not produced a sample with visible blood in it for any of the doctors. The bleeding got worse, and got so bad that on the Wednesday (the day before my appointment with Urology) I had actually got ‘blocked’; my wee was like red porridge. Very concerned by this point, I went to see my (unsympathetic) GP, who said there was nothing he could do and if I was in any more discomfort or pain I was to admit myself to A&E. However, he did tell me to look on the bright side as the ultrasound results had ruled out kidney cancer!

Thursday came and David came with me to the clinic. First I had an initial consultation with the staff nurse who asked me to produce a sample. I went into the toilet and tried to produce something – nothing – then suddenly, like opening a carton of claret yoghurt I produced a sample – a thick gelatinous claret sample. As instructed I left the sample in the toilet and went out and notified the nurse. She went in, came out with the sample, looked at me and quickly took the sample into a room, went and found another nurse and another nurse and went into the room which had my sample. One of the nurses went out and came back with a doctor, who entered the room, came straight back out and took me into the consulting room.

At this point they called David from the waiting room and told me that they were going to admit me, to catheterise me so they could flush out my bladder. I just had to wait for a bed. That was the start of 72 hours in hospital, during which time I went through 120 litres of saline, 9 ‘levages’ over a 14-hour period to unblock me. Trust me, those were the worst 72 hrs that I had endured, the discomfort, the lack of sleep, the pain – all with an 18 mm catheter down my penis.

I was also given a CT scan during my stay. The registrar said that he would get me on the list for a rigid cystoscopy on the Monday, by which time my bladder would be clear enough for a good look round. The registrar was off on the Saturday, so the ward round was done by a senior urology consultant. At this point I had just been taken off the saline washes, and I could tell that this urologist didn't really believe me or think it serious, so I showed him my photo diary. He said I was fine now and to go home, after asking about the rigid cystoscopy that I was offered by the registrar, I was told that he didn't see why I had to ‘jump the queue’ and I would be seen as procedure dictated. I was to return to the clinic in a fortnight for a flexi cystoscopy.

I waited and 2 weeks later I went for the flexi at the Thursday clinic, this time administered by a different registrar. David came with me again. Anxious and apprehensive, we both watched the screen. There it was – to me it looked like a mushroom as the camera panned round. It was smooth on top and striated underneath, like a mushroom, or like a balloon structure that had had all the air sucked out of it and it had collapsed on itself. At this point the registrar took some pictures and told me he thought it was a harmless growth that grows around the ureter from the kidney and that I had probably had it since birth. They planned to keep an eye on it and I was told to go home and that they would call me back in about 6 months.

Two days later the registrar called me and said that the urologist wasn't happy, so could I come back in for a rigid cystoscopy. I went in on Christmas Eve 2013 for my first TURBT. It was carried out by the original registrar who admitted me into hospital back in November. They removed a sizable tumour and I was kept in overnight and allowed home at 2pm Christmas Day. Because of the holidays I didn't get the results until the 3rd week of January.

What was the initial cancer diagnosis?

After what seemed months (but was only 4 weeks), I was told that the cancer was Grade 3 PT1 and that I would have to have another TURBT. What that showed would govern my future. On the second TURBT they found it to be clear and it was decided that I would go on a course of BCG.

What life changes have you made now you are affected by bladder cancer?

Both David and I stopped smoking straight away. Nowadays we eat as healthily as we can, and I've also upped my exercise at the gym. Basically I try to live life as much as possible.

What positives can you share about your experience?

Right now I'm probably the healthiest I have ever been. Mentally, cancer has made me stronger as a person. I've also met some great people along the way.

How has Fight Bladder Cancer helped you?

When I was diagnosed there was no support offered by the hospital. Because I was younger, it was as if they didn't know how to deal with me or answer the questions I was asking. Fight Bladder Cancer has always been there for us, as we've all been there – we all know what each person is going through, be it mental or physical. We laugh and we cry together, but most important is the constant support.

What advice would you give someone who has just been diagnosed?

Join the Fight Bladder Cancer Confidential Forum as soon as you can, even if you're waiting for your diagnosis, as the waiting is the worst time. Once you're diagnosed and you know what you're dealing with you can get help for how you're going to deal with it. Then you can rationalise and come to terms with it all.