Buckle up...we're off again..!

(First Published April 21st 2024)

It's been a fraction over five years since I first went to my G.P. with symptoms that led to a variety of tests, the conclusion of which was a positive diagnosis of bladder cancer. A major operation quickly followed to remove my bladder, my prostate gland and some lymph nodes.  I also had a section of my bowel removed to be made into a stoma  to divert urine from my kidneys.  (This is all documented in previous blogs for those that may not know my story and want to know all the gory details.)

Now, I don’t know if this applies to all of those who have had cancer, but since this time there has been a small ball of anxiety hidden deep within me (about the size of a screwed up toffee wrapper I would say.)  It doesn’t do much. It doesn’t really affect my everyday life but it’s there and it tells me so every single day.

About a month ago things changed. I started having some new symptoms and my toffee wrapper sized ball of anxiety quickly turned into something more akin to a screwed up wrapper from a 200g bar of Dairy Milk.

I started having a slight bloody discharge from my, now redundant, urethra. There has been no pain or discomfort, just a discharge every two or three days.

Unlike 5 years ago, this time I didn’t hang around and quickly tried to book an appointment with my G.P. (or any G.P.) but things have changed. There was nothing available for the next two weeks but the receptionist did forward me a link whereby I could ‘text the practise’ with my symptoms. I did this, making sure I outlined my history and making sure I pulled out the ‘Cancer card.’ 

Less than 10 minutes later I was phoned up by a young Doctor who said that my case was ‘interesting.’ He advised me to pick up a swab from the local Surgery and get it sent off to be tested. He then gave me a 7 day course of antibiotics to clear up what he thought might be an infection. I phoned the Surgery a few days later to find out the results only to be told that swab results normally take two weeks to come back. I phoned the Surgery back after a very long two weeks to be told that the results had come back clear and that they wouldn’t have got it touch as they generally don’t for negative results.

Meanwhile, the symptoms persist, my chocolate wrapper is rustling and I feel I’m not getting very far with my G.P. Surgery. I therefore chose to cut out the middleman and phoned through to the Urology department at my local Hospital and asked to speak to the secretary of the Surgeon that performed my life saving operation nearly five years ago. She initially seemed a little put out to be taking a phone call from someone that has bypassed their G.P. but once I explained the situation was very understanding and said that she would speak with a Consultant and get back to me.

She phoned me back a couple of days later to say that I would shortly be contacted by the Urology admissions team to get a flexible cystoscopy (camera up the winky) arranged. 

Since my operation I have had regular 6 monthly cystoscopies, all of which have been clear. The last one was in October last year and the Consultant said that he thought it should be ok to go to yearly checks. Ironically, that was exactly six months ago…

I get a phone call a day later and am booked in for a flexible cystoscopy at 1.30 at the Princess Royal Hospital the following Thursday (3 days ago.)  As always, I arrive early and, unusually, find a parking spot immediately. A new Urology department was built at the Hospital at the end of last year and this is my first visit. It’s a very impressive building with a huge waiting area and is completely deserted. I manage to find a nurse who tells me that everyone is on their lunch break, so I take a seat and sit with my anxiety for 20 minutes. 

People start returning from their breaks and I am finally called through. As always, I am asked to provide a specimen of urine and as always, I politely explain that this doesn’t really apply to people with urostomies as the urine passes through a piece of gut and will therefore be full of gut bacteria. Previously, I have always been told to get undressed and don a gown in readiness for the procedure. Obviously, cutting down on laundry bills is a good cost cutting exercise so on this occasion I am told that I can have a gown or I can just lie on the couch and ‘drop ‘em.’ My dignity went long ago so I was happy to go with the latter.

The procedure starts with the insertion of some numbing gel followed a moment later by the camera along with its own water supply. I think that this is the twelfth time that I have had this procedure done and, although it is not a wholly pleasant experience it is not nearly as bad as the mind thinks it’s going to be, plus it is over extremely quickly (especially when there is no bladder to explore.) Also, unlike 99.9% of the population I am extremely familiar with the inside of my urethra (there is a monitor at the end of the bed showing every last detail) and know when mine is looking good and healthy. 

This time things are different. My once healthy looking urethra is not looking so good. There is ‘stuff’ floating about, not unlike the ‘Upside Down’ from Stranger Things. As the camera reaches the end of my urethra my heart sinks. There is a large mass covered in what looks like pus. On previous occasions the procedure would now be over but not this time. In, out, twist it around, in, out, get another Consultant in to have a look, in, out, more twisting, it was brutal.  As I lie there with my trousers around my ankles on water soaked mats the moment is completed by being given an injection of antibiotics in my backside as a precaution against further infection due to all the prodding about. I’m not a happy bunny.  My chocolate wrapper has morphed into a hand grenade covered in 3 layers of tin foil and has lodged itself, firmly, just below my solar plexus and is refusing to budge.

There is very little left to say. Of course no one is going to diagnose me there and then. The Consultant tells me that the next step is a biopsy of the mass which will be done under a general anaesthetic plus a C.T. scan. He would like these to be done in the next two to four weeks. The nurse says “take care” and I’m on my merry way, back to work to prepare and cook a buffet for 150 people. When I get to work I don’t mince my words and explain the situation as best I can without letting emotion take me over. Everyone makes the right noises but then the silence sets in.

Having a cancer diagnosis can make life quite lonely. I appreciate that many people find the whole subject very difficult to approach as many of us will have experienced someone close to us suffering. I may be a bit different but I want to talk about it. Whatever the diagnosis may show I want it to be part of my normal daily conversation. If it isn’t, my tinfoil covered hand grenade will remain firmly in place which could lead (heaven forbid) to the pin falling out and that’s not a mess I’m sure I’m ready to clear up at the moment. So, if you’re reading this and are more than just a casual acquaintance, feel free to send me a message. I love any excuse to let loose with a bit of graveyard humour and am currently looking to get the words ‘knob cancer’ into as many conversations as I can. 

On Friday I’m kindly offered the opportunity of just working a half day. To be fair I have been offered ‘whatever I need’ which is fantastic. Although I’d rather keep busy, I accept as my head is all over the place. I’m just having a bit of lunch before going home when my phone rings. It’s the Hospital. Fabulous! Time is of the essence when cell division may be involved and things are moving quickly. What follows is the most extraordinary conversation I have ever had with the NHS. It is a lady from the admissions team on the end of the line trying to book me in for a pre-op (essential before any general anaesthetic to ensure that I’m fit enough to go through with it.) She tells me that there is no availability before the end of May. I tell her that the Consultant has said he would like the biopsy done in two to four weeks. She then reiterates that there are no spaces before the end of May and that there’s nothing to worry about as it isn’t cancer…I’m completely gobsmacked. I explain to her that following my operation five years ago the cancer was found to have spread into the top of my urethra which is why the Consultant is keen to move quickly having seen the mass currently residing there. She grumpily concedes and tells me that she will have to go back and check with the Consultant and will phone me next week. Extraordinary…!

So there we are… it seems that I am ‘back in the game.’ I’m not going to bore anyone any further with possible future treatments or scenarios. Those are for a future blog. As this has been a pretty miserable account of my previous few weeks I thought I’d lighten the mood with a couple of photos of apple trees in our garden that are looking particularly fantastic at the moment and are blissfully unaware (as far as I know) that I’m feeling a bit shit at the moment.