Lies, damned lies and cancer...

(First Published December 17th 2019)

It is now 11 weeks since my operation and what a time it has been.  Obviously I have had plenty of time on my hands so have been able to keep abreast of the news and current affairs.  Never have I heard so many lies told and so much mis-information spread through all forms of media. Sadly, it appears that I am no better than our, so called, leaders.

My own personal catch phrase on leaving hospital was ‘and I came home cancer free!’ It turns out that I lied. My saving grace is that it wasn’t on purpose. At my age I should know better than churning out so called facts without all the relevant information but if it’s good enough for Westminster…

Here is a quick recap for those who may not have read my earlier blogs. In early August, after a variety of tests, I was diagnosed with bladder cancer. Due to the severity of the cancer the recommended treatment was a Radical Cystectomy. This involved removal of the bladder and prostate gland plus some lymph nodes. I chose the option of having urine diverted through a conduit formed from a piece of my small intestine, through a stoma in my abdomen to be collected in a bag. It turns out that this was an inspired choice.

The operation was fairly brutal and, for me, involved an 11 day stay in hospital.

I last wrote two and a half weeks after returning home so shall pick up the story from that point.

My recovery has continued to come along at a pace. It is such a joy to see yourself improving on an almost daily basis. Now my wounds have completely healed I am able to have a proper shower - such a pleasure after having to carefully wash around 6 wounds! After 8 weeks at home I went back to driving. The world is my oyster plus I’m able do school & college runs. It is fantastic to be able to get out of the house and go for a proper walk in the countryside. I started at a few hundred yards and have gradually built it up to six mile walks. 

Up until a couple of weeks ago progress was good, but I appear to have hit a hurdle.  I have started getting stabbing pains in my abdomen in the area beneath my stoma. It generally happens when I am sitting down and stops if I get up and walk around. Fortunately, my normal appointment with the stoma nurse was last Tuesday so I was able to talk things through with her. There were no visible signs of any problems and the stoma itself is good and healthy and doing what it is meant to be doing. She suggested I make an appointment with my G.P. plus arrange a urine test to discount any UTI’s. I did this but also decided to phone the urology department at the local hospital for their advice. It turns out that they had been trying to contact me. I had an appointment booked on December 19th to see my surgeon to discuss my recovery, kidney function and histology results etc. They wanted to cancel the appointment and reschedule it for January. I explained my pains and fortunately they had a cancellation for the following morning (last Thursday) so it was obviously all meant to be.

We discussed the results of the various tests I had been awaiting and the news was a mixed bag. The blood tests showed that my kidneys are performing as well as they would be normally which is great news. The histology results on the bits they had removed told a different story and this is where my excitement at being cancer free disappeared. The results show that my lymph nodes were completely clear which is great news. However, the cancer had spread into the prostatic urethra (basically the bit of the urethra that passes through the prostate gland.) There was also a different form of low grade cancer in the prostate gland itself. This is the reason my choice of an ileal conduit was so fortunate as a neo-bladder would have been out of the question under these circumstances. Fortunately these bits have been successfully removed but there are no guarantees that there is no cancer further down the urethra. So, having secretly been chuffed that cameras being inserted up my bits were a thing of the past, I am now faced with having flexible cystoscopies every three months. If anything untoward is found I will face further surgery to remove the urethra.  There is also a small amount of cancer at the end of my right hand side ureta. My surgeon assures me that this is not of major concern and rarely proves to be a problem plus I am in the system and will be regularly monitored.

We discussed my pains and my surgeon’s concern was that I had developed an internal hernia and suggested a CT scan to see what was going on. An hour later and it was all done! Incredible service! He phoned me later on that afternoon, having had a chance to look at the results himself, and was pleased to report that there were no indications of any hernias. He suggested that the reasons for the pains may well be due to me doing too much i.e. cut down on the stomping through muddy fields. He also said that any aches or pains so soon after surgery are fairly normal and although it is always wise to get them checked out it is often par for the course.

That was 5 days ago and I’m pleased to say the pains are far less severe and less frequent than a week ago so it would appear that rest is the order of the day. That is proving problematic in itself. I had reached the stage where life was starting to return to, almost, normal and I was able to enjoy my last few weeks before returning to work. I am now stuck inside with the recent results praying on my mind. I am well aware that you can’t put a price on your health - but I have been doing some maths. Every month I don’t work costs us at least £1000 so the thought of another possible operation in the New Year doesn’t fill me with seasonal joy!

These last 5 days have been the hardest for me since I first started having symptoms over a year ago. Whilst I was visiting the toilet at the hospital my surgeon did make the point to Alice that this was always going to be ‘long haul.’ I need to start practising what I preach, that is don’t get bogged down by the past or the future and just try to enjoy the moment. I’d be telling even more porkies if I pretended that the recent news wasn’t hard to digest but digest it I must, and not forget that a positive attitude has already got me a long way and will continue to do so if I allow it to.