Tuesday 19 June 2018

Rog T's Cancer Blog - You can't spend a penny in the digital age!

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 54years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October  which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive.  I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture? 

Guys, we gotta talk. Seriously. There are many downsides of having prostate cancer. Perhaps the biggest of these is a premature death. Then there are the 3i's Incontinence, Impotence and Infertility that can follow a radical prostatectomy and other procedures. All of these are pretty scary to think about. Fortunately for me, I suffer none of the above. But far and away the most common symptom is increased need to do a wee. It can be a real nightmare for many sufferers. As someone who is sociable and likes a drink with friends, it means that I have to spend an amount of time planning journeys out. You have to think strategically. As you leave a pub or club, you may not need to go to the toilet, but how will you feel in an hour's time, as you are stuck on a bus or tube train? 

Last night I had to suffer a strange and unusual torture, courtesy of the worlds worst train company, Thameslink. As regular readers of this blog will no doubt know, the Thameslink service has been upgraded, with a new timetable and new Desiro trains. For men such as myself, the new trains are wonderful. They have not one but three toilets. That means that I'm pretty well catered for if the need takes me on a journey home. Sadly nothing in London when it comes to transport is ever quite as it seems. I watched the footie in The Rack and Tenter in Moorgate with friends. When the match finished, a quick check of the Thameslink App showed that there was a train at 9.46 from Farringdon to Mill Hill.  It also showed that the next three trains were cancelled. For me, this meant that the pint was finished and we had a short hop to Farringdon on the tube. At the time, I didn't need the loo and I new I'd be on a marvellous new train in 15 minutes, job done. 

That is where things started to go wrong. At Farringdon we found that the train had magically been transformed into a fast service to St Albans. On enquiring with the Thameslink staff, I was informed that the quickest way home was to go to St Albans and then get a train back to Mill Hill. Farringdon is 12 miles from Mill Hill and Sta Allbans is 16 miles. So to do a 12 mile journey I had to do a 32 mile detour. 

At this point, I also realised I needed the loo. The logical thing to do was go to Kings Cross and get a tube to Burnt Oak, but this would mean a loo stop somewhere. I suggested to my companion that we get the Thameslink to St Pancras and transfer onto the Tube. This would mean I could use the loo on the train and that would see me through.

So on we get, what could possibly go wrong? Well as soon as we boarded, we found all three loo's were locked and out of service. One of the downsides of such occurrences is that as soon as you realise there is no loo, then you become absolutely desperate. But no worry, we had to change at St Pancras, and there is a loo on the platform. Fortunately, the journey was only five minutes. As we disembarked, I made a quick, leaving my companion on the platform waiting. As I emerged, suitably unencumbered, he was screaming at me "Quick jump on the train". He was on the carriage and the beeper went. I don't recommend this, but he put his foot in the door, allowing me to board. I asked "are we going to St Albans then?" He replied "No, it's now all stations".
For once, my need to go to the loo had worked in my favour, as if I'd not needed the loo, we'd have left the platform and been waiting for a tube train.

This is not the first time a Thameslink collapse has severely impacted me. A couple of weeks ago, I was travelling from Blackfriars and again all trains were cancelled. Then I decided to take the tube. I was also pleased to remember that there was a loo on the station. So I made my way down. Then I found there was a problem. You had to pay 30p in cash to use them and I had no cash. Only my contactless card. No worries, I'd get some cash out of the machine. So I go to the station cash machine, it isn't working. Eventually, I remember there is an RBS machine on New Bridge St. So I go up to that with a tenner. The next thing is to get some change. So I go to WH Smiths "Can I have some change please. I need to use the toilet". I am told "Sorry, we can't open the till unless you buy something". The only thing is I don't want anything. So I look around for something. I see a packet of polo's. They are 60p. I hand over a tenner and get £9.40 back. that is made up of a £5 note, a £2 coin, two £1 coins and two twenty pence pieces. As I look at the change, I say "sorry can I have two ten pence pieces instead of a twenty". The young man says "sorry, I can't open the till to give you change". At this I get a bit irate and say "Sorry I don't want the polo's, can you give me a refund". At this, the guy snarls and takes them, returning me three 20 pence pieces". 

At this point, I realised that there were only two options. One would have resulted in a jail sentence and the other was to pay 40p to use the loo and by now I was desperate. I opted for the non custodial option. I was by now quite irritated. Not only had Thameslink cancelled my train making me half an hour or more late home, their coin operated loo had given me a detour to RBS and a potentially explosive encounter with a member of WH Smiths staff. I'd also had to overpay to use a urinal that would have been free if the train was running.

For those of us living with cancer, they say that stress should be avoided. I have no idea how one can possibly avoid stress with the current state of our commuter railways. What I do know is that for people in my position, trains should not have all of the toilets out of use. I do not believe that all three loos were broken, I believe that the company locked them to reduce costs. As to charging for a public toilet in a train station which is required because they can't run a service, it is daylight robbery. As with many things related to cancer and other chronic medical conditions, it is the mundane that grinds you down. I don't know if the bosses of train companies ever stop to think what the real life impact of locking train loos is on people who need to use them due to a medical condition. We (us men) don't like talking about when we wee. That is why these companies get away with this. 

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