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Living beyond bladder cancer

30.05.18 Categories: Patient stories, Supporter stories,

Meet 63-year-old Paul Nathan - a lawyer, radio DJ and model. He’s also a survivor of bladder cancer, although this would never be how he defines himself. Paul prefers to think of himself as having got over cancer, rather than surviving it.

This international men's day, Paul speaks about his experience of living with and beyond the disease.

A sudden diagnosis

Paul’s diagnosis in summer 2014 followed the most common symptom of bladder cancer: his urine was brown which was caused by blood in it. When a CT scan revealed a blockage in his ureter – the tube joining the kidney to the bladder – he was quickly booked in for surgery and chemotherapy.

‘First of all they cut away the cancer from the bladder (also known as resecting) and used some localised chemo, which they put into the bladder while I was still asleep,’ explains Paul. ‘They put a stent in the kidney and I had a catheter in, with a bag. Two weeks later I went back and had another operation, this time for them to clear the cancer from the ureter.’

It was then discovered that Paul’s kidney function was so low that he’d need the kidney removed and his bladder resected again. Unfortunately, after having this surgery Paul was told that his condition had developed to high grade non-muscle invasive bladder cancer.

A six week course of BCG therapy was due to follow, which is the installation of the BCG immunotherapy drug into the bladder through a catheter. This causes the body to create an immune response to try and stop producing the cancer cells.

However, before the treatment could begin it was discovered that the cancer had continued to spread across the bladder, as well as to the prostate. It was when Paul was told that he would probably lose his bladder and his prostate that he went for a second opinion from Mr Khan at Guy’s Hospital, who he says explained ‘absolutely everything’ to him.

In March 2015, Paul’s next operation was the removal of the prostate and bladder, and a new opening called a stoma was made for the urine to pass through and be collected in a bag.

Recovery

Paul spent 11 days at Guy’s, which he remembers as a very tough time but with lots of support offered by staff.

‘When you’ve had an operation like that and you’re really feeling dreadful, you really just don’t want to be there. But the nursing staff and the doctors were absolutely brilliant, and I had two fantastic surgeons who came to see me at least twice a day.

‘The highlight was the ninth day when Mr Khan came and told me that there was no cancer in all of the lymph nodes that were removed. I pretty much just gave him a massive hug. And then two days later I went home.’

Initially, physical activity wasn’t an option for Paul as it often led to urine infections. But once he’d given his body enough time to recuperate, fitness became a firm focus.

‘Finally, in summer 2017 I was able to start training again with a personal trainer. And I’m probably in the best physical shape I’ve been in since my twenties.’

Paul says his training has been an important part of his recovery, and he wants other people to know the benefits of this approach.

Get over cancer and get fit

‘I know that being fit probably increases my chance of living longer,’ says Paul. ‘If you’ve got over it then cancer is not the end of your life, and actually you need to make very little changes.

‘If you were fit and healthy before then you need to make no changes, you just need to get yourself back. And if you’re not, you need to be. You need to start looking after your body, from a physical point of view but also from a mental point of view. 

‘To say, “oh well, I’ve had some organs taken out so I’m half the man I used to be” – it’s rubbish. Yes, of course you’ve got to change some things, like drinking lots of water and not too much alcohol. And of course I was upset by it…I mean, I’ve got a bag hanging on me. But it’s just a bag and it keeps me alive.’

Paul feels strongly about addressing the stigma of having a bag, frequently posting photos and videos on social media of his training sessions, with his bag on display.

He has now been free of cancer for three years and returns to Guy’s Hospital for check-ups annually until hopefully being signed off after five years. A side-effect of his surgery is the possibility of recurring urine infections which Paul finds painful and unpleasant, but manageable enough that he can happily get on with his life.

Paul’s message

‘I didn’t go through this journey just for me, that can’t have been the reason for me to have cancer and then survive it,’ says Paul. ‘I never really use those words – “survival”, I prefer to say I’ve “got over it”.
‘I have to go out and spread some messages, and that message is: you can get over this too.
‘If you get bladder cancer and have your bladder removed or maybe your prostate, you can still do pretty much everything you ever did before. Get yourself fit and enjoy your life - that’s what life is for.’

The TOUR team at Guy’s and St Thomas’ are doing important research to fight bladder cancer and help prevent this disease more effectively.

Find out more about the team and how you can support their vital work.