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Real Stories...

My name is Mark

It's important to have specific goals so you have something to look forward to.

At 63, Mark was doing some consultancy and working as a trustee for a social enterprise organisation while his wife, Tracey, helped at a charity supporting local vulnerable families. A keen golfer, members of a lively Anglican church and a ukulele band, their retirement seemed to have got off to a great start.

My wife, Tracey, and I met when we both worked for John Lewis. We’ve been married for 15 years and now live just outside Southampton, with Tracey's daughter living nearby and my three sons living in London, Manchester and Sheffield. We little thought our early retirement would take such a turn – but then no one imagines that this kind of thing is going to happen to them, do they?

The first ominous signs

Early in 2019, I had two episodes of blood in my pee and was treated for UTIs. My GP also organised blood tests and an ultrasound to check for any prostate issues. But after six months with no answer to continuing discomfort, and after a third episode of blood in my pee, I referred myself to a urologist. A CT scan and cystoscopy confirmed a small (1cm) tumour in the dome of my bladder.

A nasty shock

Soon after my cystoscopy I had a TURBT operation to remove the tumour. The pathology results were a big shock as the consultant told us that the tumour was muscle-invasive and aggressive. Having expected just monitoring with the possibility of BCG treatment, we were now faced with chemotherapy and then either bladder removal or chemoradiotherapy. Although we were assured the chances of a cure were good, I was very aware that there was a significant possibility that I wouldn't make it. 

Two days after getting this news we saw the oncologist at Southampton General Hospital to discuss the chemotherapy. I never made it home as heavy bleeding following the TURBT operation meant I was admitted to hospital to have my bladder irrigated. I went home after three days but the following day I was re-admitted with a very high temperature. I had acute urinary sepsis and there were some very dodgy moments when my temperature was very high and I felt really unwell. After another three days in hospital I started chemotherapy the following week. 

From chemotherapy to surgery

There were three cycles of chemotherapy, lasting for nine weeks. During that time I had more appointments to discuss my treatment options and I decided to go for the radical cystectomy (RC). Because I had gone to Portsmouth for a second opinion, I was able to transfer there (possibly the only transfer from Southampton to Portsmouth other than Harry Rednapp!) for robot-assisted surgery. 

Four weeks after the chemo finished, I had the RC, which went well, and I was discharged after eight days (extended a bit by being very sick the day after the operation). 

And back to my new normal

As I write this, things are going really well. I am 13 weeks on from the operation and life is getting close to 'normal' again. The best news of all was that the pathology results confirmed there was no cancer left in my bladder or outside it. The presence of some pre-cancerous cells confirmed that bladder removal had been the best option for me and the consultant gave us the happy news that my chances of long-term cure were the 'best possible' following an RC operation.

Of course, I have been making some life changes – any cancer diagnosis which leads to chemotherapy and two operations is going to lead to profound changes. During the chemotherapy, life ranged from relatively normal to resting up and being tired and staying at home, although the fatigue only hit me for three or four days of each three-week cycle. Following the RC operation the focus has been on a steady build up in exercise combined with a healthy lifestyle.

Looking for the positives

The main positive for me has been the success of the treatment. My chances of a full recovery have improved significantly since the very sobering prognosis after the tumour was removed and examined. At the time, the surgeon said I was the 'perfect patient' to come through it as I am fit and do not have too many unhealthy vices! I held onto this assessment and the three Fs (faith, family and friends) have helped me through. My wife would add food to the list and the fact that I never lost my appetite helped my recovery immensely. 

The mental challenge

There is no doubt that a diagnosis of bladder cancer is a huge shock. Suddenly you have to face several months of treatment and you come face to face with your own mortality and the worry of all the tests and results that go hand in hand with the treatment. 

Being part of the FBC support group has taught me that the impact of treatment and operations vary hugely – we are all different! My advice to anyone starting out with a bladder cancer diagnosis is to stay positive and don't base your expectations on the experience of others. I had a relatively easy time with chemotherapy and never lost my appetite. My bag has had only one leak in 13 weeks and that was minor and sorted out in five minutes. It's also important to have specific goals so you have something to look forward to. I booked a couple of short breaks during 'free' weeks of chemotherapy and I planned to build up to playing a full round of golf about four months after the RC operation. In the event, I played 18 holes 12 weeks after the operation, which gave me a huge boost, especially as the following day we went into 'lockdown' to fight the Coronavirus – I had got there just in time! 

Fight Bladder Cancer has been such a help

The website was very helpful in understanding bladder cancer and the treatment options, and the support group on Facebook has also been brilliant. There was loads of good advice soon after my diagnosis and around the time of the RC. As time has gone on, most of my input has been supporting others, which is very satisfying!

My plans for Bladder Cancer Awareness Month

I had planned to do the walk and to help man a stand outside our local hospital. However, it is looking like we may not be able to do these due to the Coronavirus outbreak. But I am sure I will be able to find some useful ways of supporting BCAM virtually as it is so important to spread the word about Fight Bladder Cancer.

 

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