Life-changing Moment

There are many days and dates, and many reasons that those dates stay with us through our lives: when we get married, the birth of our children, a memorable event and so on. For everyone those moments are different, and we remember them in all kinds of ways:with fondness, love, happiness and joy. We remember bad times too, sometimes more clearly than the good ones. Today was one of those days for me.

Shown into the day surgery ward with 3 other guys, we were assigned beds and the regular checks, temperature and blood pressure, taken by the nurses as they prepared us all for the minor procedures we were about to have. The anaesthetist came and saw me, ran through the usual questions, and said he would see me before the op etc..

About 8.30 the consultant, Mr Murray arrived and sat on the bed. And here was the bombshell which i did not expect. He explained the procedure then told me that 98% of these type of growths were malignant but he would know more after the operation. However, at this time he already knew what was suddenly dawning on me: this was not going to be a simple cut it out and follow up. He told me he would want to see me in 3 weeks time and he would have more information then, and that he was going to book me a bone scan as well.

Furthermore he told me that there is a high incidence of bladder cancer in smokers, and yes, I had smoked all my life, untill last October when I discovered e-cigarettes and effectively I hadnt smoked for 3 months and was just using a rechargeable electronic cigarette. More of that later.

My mind was racing: all the usual stuff, 3 weeks to live, how do I tell the wife, allsorts!. Murray asked me to sign the consent form, and said he would come see me this afternoon. In a short while I was being moved to the operating theatres and woke up in recovery an hour or so later, very sore but other than that as OK as i could be.

Suddenly the conversation with the consultant came back to me, and once I was back in the ward I was alert enough to send a text message to my wife explaining in a very short version what he had said. I knew i couldn't phone her at that time as I would have ended up in tears, and so would she. I had to call someone so I rang my sister, explained a little of what had gone on, and asked her to tell my mum, who lives next door to her, and to give my wife Jenny a call, to make sure she was OK.

The plan was that Jenny was coming to collect me later that afternoon, provided I was allowed to go home. Suffice to say, even if I wasn't she was coming anyway! Still all the bad scenarios were running around in my head, and they wouldn't go away. Jenny texted me to say she had left home and was on the way to Canterbury: about 30 minutes drive. I will explain more about my wife in a separate post but you need to know she is disabled, after a stroke some 6 years ago, and walks with a stick. For her to walk any distance is immensely tiring and a huge effort. so an hour after she left home and she hadn't arrived i was starting to worry. Canterbury hospital, as they all are these days becomes very difficult to park, and there seems to always be a lack of disabled parking spaces. My cynical mind says the reason is that a disabled bay with free parking is not a revenue stream, so only provide the bare minimum required, and get money from all the other spaces. The layout of the hospital is one long corridor: she parked by outpatients, in a disabled bay, and then walked. This walk is probably some 400 yards along this main corridor, which for my wife is like running a marathon. 45 minutes it took her, and she finally appeared round the corner looking shattered. God! I love this woman so much!

We had a cup of tea (in our world tea is the great fixer: keep your alcohol and all that, PG tips every time!

Then without warning the consultant arrived: he stood at the end of the bed and leafed through a load of notes, almost as if he was trying to find the right words. I held her hand, and we listened.

there was not one but several tumours in the bladder, one of which seemed to have grown through the bladder wall (not good!) and he had taken several biopsies, and removed most of the other ones. He told us he had booked the bone scan, and that he woule the biopsy results in 3 weeks when he would see us in his clinic, but suffice to say, "you have a substantial tumour that is not going away. Once we know more it will enable us to determine the best treatment, They discharged me and we drove home in a state of shock.

A simple and painless procedure...

A cystoscopy is a widely used procedure that involves, not to put too fine a point on it, inserting a flexible tube with a camera on the end into the urethra. The tube is then passed up into the bladder which allows the doctor to see the inner wall of the bladder. When they send you the appointment they send a very informative little leaflet from which i quote ".. a simple and painless procedure". They lied.

Think of this: the flexible tube is wide enough to contain the camera and a light source. That means it's several millimetres diameter, and to be honest, unless you're hung like a donkey, which I most certainly am NOT, it friggin' well hurts!

I have to say that it is an extremely odd feeling, which unless you have experienced it is very difficult to describe. I will add that one male colleague at work, on hearing I was having a cystoscopy, at in my blissful ignorance at that time, said "yes, I had one of those once", and walked away with a smile on his face. Now I know why!

So, the upshot was that the doctor found what appeared to be a small polyp like growth inside the bladder. "That's what we think is causing the bleeding" he said. It is certainly an odd feeling seeing a crystal clear real time image of the inside of your bladder on a TV screen. "We will book you in after the New Year for a similar procedure but done with a non flexible tube (double ouch!) under general anaesthetic."

The booking was made before I left, and set for 16th January. At this point there was no drama. a single small growth inside the bladder, would be removed in January and while it would need to be sent for biopsy, in 99% of cases the whole growth is removed, and while there is then a need for regular check ups over time that would normally be the end of tumour problem. The worst thing I had to look forward to was a cystoscopy every few months.

Christmas was upon us soon enough, and then the New Year and in pretty quick time the day of the operation was here. Arrive at 7.30 am they said, and so I did.






  

Testing 123 (456789)

I am writing these first few posts retrospectively as the decision to blog this has only come a little way down the line, but i wanted to get everyone in on the story from day 1, as it were.

So, a couple of days further on and still there is blood, which is a worry. Back to the doctors and he suggests i have some blood tests, and an ultrasound of my bladder to see what might show up, if anything. Thus begins the long saga that will continue of trips to the hospital. In this case its the QEQM which is only 10 minutes up the road from us. As always parking at QEQM is an issue; even with a blue badge, there are some half a dozen disabled spaces in the main car park, and at 4.30pm (the time of the ultrasound) these are like gold dust. Two whole sections of the main car park aisles are blocked by any number of cars all with engines running, waiting for that poor unsuspecting person in one of those disabled bays to come out, and suddenly 6 little old ladies in Nissan Micras descend on the space before the present occupier has even unlocked their car. I can't be bothered and grudgingly pay the £3 parking fee having negotiated the war zone that surrounds the disabled bays, each car being driven by a blue badge pensioner who will NOT pay the 3 quid, their steely eyed glare on every poor unsuspecting person walking from the hospital entrance into the car park.

Anyway, its into the ultrasound and an inconclusive test that doesn't tell us much (as I found out later).

The next couple of weeks goes by, some days with blood and others without, so as I am still not convinced that the antibiotics either were the right option, or if they were they weren't doing the job, the GP decides I need to have some further tests. He refers me to the Urology team for a cystoscopy (his words: a painless little procedure that uses a camera to look inside the bladder).  

The First Inkling

I live in Kent, and commute to London daily for work. Because my journey into and out of work takes some two and a half hours each way on the train it's always a good plan to have a pee before leaving the office. The trains do have toilets of course but sod's law says on the day you need the loo, the train toilets will be out of order. (The state of South Eastern trains and services is another subject entirely so let's not go there!)

So, its just before 7pm, after a day in the office, and I pop into the loo before leaving. Had the usual pee and thought it looked a bit dark but thought no more of it. Journey was the usual boring clatter to the East Kent Coast, and arrived home at 9.30 as normal. The wife (you'll get to know more about her later) was getting my dinner ready, and I went to the toilet.

The light in our bathroom is much brighter than the loos at work, and as i looked down, all I could see was blood: not dark but bright red nothing but blood! "Oh shit" I thought.

Came out the loo and called the wife: "you'd better have a look at this"

"Not good" was her summing up. I agreed.

Now, GP's these days work under the auspices of a special kind of Hippocratic Oath which means they are only able to offer care between the hours of 9 to 5, Monday to Friday. Outside of these hours patients are left to their own devices, so it was a call to NHS Direct, and a telephone consultation, resulting in a visit to our GP's locum service who happen to have a 24 hour office at the local hospital, The Queen Elizabeth the Queen Mother Hospital (QEQM) in Margate. That was pretty inconclusive as the standard course of action for blood in urine is treat it as a urinary infection, and give antibiotics, which is what happened this evening.

So that was that for the evening: its then time to visit the GP nwxt day and follow up, but his initial conclusion is the same; continue with the antibiotics and we will see from there in a week.

At the same time as all this I am also having an issue with my right shoulder, and the doc has referred me to a specialist team to look at that, and while it's important I note that here, the arm issue will become more clear as we move forward. The expert assessment is its a rotator cuff injury of the shoulder.

So that was the first inkling that anything was wrong: I hadn't had any blood in my urine before, not had any bladder or abdominal pain, so up until then, no cause for alarm or panic.

And so it began.