Its my birthday

And I am off to London today for a Urology appointment, I think I will make this the last as we are not making any progress. I feel I need to resign myself to Nocturia, getting up in the night to pee although it has been a little better of late with me not getting up so much.

And I am combining today’s visit with a blood test to save me coming back up to London tomorrow and Wednesday. So back on Wednesday to see the oncologist and see what my PSA is now reading.

I arrived a little late for my appointment due to a delay on the tube but was quickly seen.

The doctor was struggling to bring up my records as they had a new computer system so I summarised my story and gave him my current situation which is that I am getting up less in the night.

I also said that I thought we could draw a line under my treatment as there was little to be done. He agreed stating that it was not uncommon for someone of my age to be getting up in the night.

So that should be my last trip to Westmoreland Street.

Then I walked over to the Cancer Centre for my blood test. I had a 20 minute wait and then I was seen.

They too were working with a new computer system and soon she had found my records and the blood test request which included a PSA test.

Blood taken it was time to head home, hopefully I will get a bit of time down the allotment with Teddy.

Back on Wednesday for chemo and to see what my PSA is doing.

Fingers crossed 🤞

Urology Update

Back up to London again today but to a different part of UCLH this time, yes it was back to Westmoreland Street for a 3 monthly catch up with my Urologist.  I am still going to the toilet 3 or 4 times (sometimes more) and was hoping this could be sorted out.  Last time I saw him he said just to try Solifinicin on it’s own to see if that improved the situation.

Urology Dept

It didn’t!

I made it there in good time and surprisingly as soon as I sat down my name was called.

We had a chat about how things were going and I told there was no difference when taking the Solifinicin and when I was not and if anything the Solifinicin caused constipation.

He checked the size of my bladder on his records and said it was a regular size and should be OK and looking at the Flow Test there is no blockage.

He said that it is sometimes the case that men do get up in the night.

I think he is setting the scene that there is nothing he can do.

In the meantime though he said to try Bendroflumethiazide which is a water tablet which should help you go.  The idea being that it makes you go in the day so you need to go less at night.

We shall see!

The pharmacist who issued the tablets said I should not go out for about 3 hours after taking them making it sound like they would work quite quickly!

I think I will try them in the evening first of all and see how it goes.

Once again fingers crossed.

 

Back Again

Back on the train once more heading to London. Off to UCLH but for a Urology appointment in Westmoreland St.

Arrived in plenty of time for my appointment despite opting to walk from Warren Street to help improve my step count.

I saw Dr Nauth-Miser who started by giving me the results from my recent ultrasound and flow test.

He said I had no problems with my flow and that my prostate was not blocking the flow.

He did comment that my prostate was small, about 16mg I think he said.

We then chatted about options and concluded that staying on medication was the way forward although I will stop taking the Tamsulosin and Finesteride and just take Solifinicin. Which I will take in the morning.

I have a follow up appointment in 3 months to review how it is going.

He did mention some other options if the solifinicin does not work.

I think it will come down to me to decide how big an issue it is getting up in the night to pee.

It is an issue as I seldom get a full nights sleep and sometimes feel very tired but could I live with it?

London Calling

Another day in London and I am sitting on a busy tube trying to drink enough water to make sure I can complete the flow test and ultra sound I have scheduled for 0930.

I hope the tube doesn’t get stopped as I sit here with a full bladder!!!

Arrived early for my Ultra Sound.

It paid to arrive early as I was second in for my ultra sound and flow test.

The test started with the Ultrasound and a quick check that my bladder was full and then into a toilet where you pee into a funnel that cleverly detects your flow and records it as a print out.

Then another quick ultrasound to check whether my bladder was now empty.

It all clever stuff and looks high tech to me.

A quick photo for posterity and I am done.

The nurses were friendly and knowledgeable.

A quick walk then to UCLH on Euston Road and the Macmillan Cancer Centre where I need to provide another urine sample.

I hope it won’t be too long as my bladder is starting to fill once more😑.

A short wait and then I get seen. Another quick sample and that’s me done for the day.

Time to head home and take Teddy for a walk 🐶.

Manic Monday

07.36 Sat on the train once more making my way to London. Today I have a Urology appointment at 0900 and then a Bone Scan at 1100. The first appointment is at Westmoreland Street and the second at Warren Street.

Let’s hope it all goes to plan!

Feeling a bit tired after a horrible journey home yesterday and then an early start but overall I feel recharged and ready to start the Neptunes trial and all that may bring.

0840. Just arrived at UCLH Westmoreland Street where the Urology Department is. There are 5 off us in the waiting room already. Got chatting to one man who had travelled down from Milton Keynes. He sounded like he was from the USA.

0940 and I finally go into see Mr Nauth-Misir who was having problems with his PC, a nurse came in and gave the keyboard a wipe and that seemed to resolve it.

We then went through my history and current medication.

I explained that I was still suffering from Nocturia and it was causing me to be tired.

I said I felt I was taking the tablets at the wrong time of day as I felt I was peeing more during the night.

He said the best of the tablets was Solifinicin and so I am going to go back on them but take them earlier in the day. He also booked me in for an Ultrasound and a Flowtest which will happen on the 25th June.

I will then have a follow up with him on 16 July.

He seemed like a nice man and once the tests have been done I hope he can sort the Nocturia out.

And then took a brisk walk to Warren Street passing Harley Street along the way.

I will write more about this on another day.

1045 and I arrive at the Nuclear Medicine Department on the 5th floor of UCLH. I was a little early and hoping to get things started early.

It was good job I was early as they said I had a CT Scan booked for 1120. While a CT scan was mentioned I was never told it was booked.

The scan was over at the Macmillan Cancer Centre so off I popped over the road.

I was directed into the basement and quickly processed and before long my trousers were off and I was wearing my hospital robe.

Good job I had my best boxers on as it had no ties on it so I had to kept a firm hold of it.

Once again I was called forward and a male nurse prepped me for the scan. For a CT scan they inject you with a contrasting fluid to provide definition in the images.

Prep did not go well and first attempt to put the canula in my arm did not go well and I was squirming around as he tried to get it into the vein. I am sure I am getting more sensitive to needles!

He did manage to get it in but said the vein was blocked so he then put the canula into my right hand. Which went much better although I still did a bit of squirming.

With canula in place I was then called in for the scan.

I waddled down the corridor with my hospital robe falling off carrying my belongings and losing my dignity.

I was soon lying on the bed ready for the scan.

In my experience whenever I have had a CT Scan they have asked me to put my hands about my head, I think this is so they can get to the canula. But it is a slightly uncomfortable position.

Once in position they attach the drip with the contrasting fluid in to the canula. You feel rather than see what they are doing.

I am not sure if the first scan is a dry run or not because the contrasting fluid is not used. The scan is controlled remotely as the radiographers operator the scanner behind glass. You are moved forward into the scanner and then a robotic voice asks you to “Breathe In and Hold”.

The machine spins and you are moved out of the scanner where the robot tells you can “Breathe Out”.

You are given a chance to catch your breath and then someone tells you that they are going to inject the Contrasting Fluid. I didn’t feel anything immediately but then it feels like warm water or blood is trickling down your arm. I realise this is the warm feeling that they had mentioned and not blood but it did feel weird.

Then once again it’s “Breathe in and hold” the machine purrs and then “Breathe Out”.

The whole scan process takes about 15 mins and is quick and efficient.

I am directed to the changing room where I change taking care not to disturb the cannula.

I then head off to the main building for my Bone Scan.

I arrive bang on time and am directed to a waiting area and pretty soon a nurse calls me forward and takes some details. She tells me that our injections are not yet ready and I am directed back to the waiting room.

Before long one of the nurses returns with a small trolley, on it are about a dozen small tubes, about the size of two toilet roll holders pushed together, they all have sticky labels on.

I got to pick my one up and they are really heavy, I guess they are made of lead to contain the radiation.

The nurse changes the adaptors on my cannula so she can administer a saline solution and the radioactive dose at the same time. The radioactive dose is in an unusual looking syringe made of metal. Again I guess to stop stop exposure to the radiation it contains.

The saline and the dose of radioactive fluid are both injected and that part is complete.

I am told to return at 3.20 PM for the scan and so with 3 hours to kill I head over to Southwark to meet Barbara for lunch.

By the time I return to UCLH at about 3 PM I am feeling tired. Not sure why but it had been an early start and I had been injected with Contrasting Fluid and a small Radioactive dose.

About 4pm I am finally called forward for my scan.

As I lie on the bed I am told the scan will last 18 minutes, time for a nap I thought!

They move the scanner really close to your face so the best thing to do is to close your eyes and keep still.

18 minutes later the scan is complete and I am told I can go.

Feeling tired I head to the station to make my way home knowing I will be back on Wednesday to see Dr Linch and find out the results and more about the Neptunes Trial.

Solifinicin

Ever since and before I was diagnosed I have had problems with Nocturia, going to the toilet a lot at night to pee.

This has been a real issue and has caused me to become very tried as I was not able to sleep very well.

One of the tablets I have been taking to try and resolve this is Solifinicin. The big issue with this is that it can cause constipation and for me it has and at times this has been a real issues which on one occasion lead to an ambulance being called (but that’s another story).

To my mind Solifinicin has never really worked in that it should have helped with my nocturia but I have suffered the side effects.

So while I have been away on holiday I have stopped taking the Solifinicin and to be honest I have not been up as much through the night and I have pee’d more through the day.

So I need to have a chat with my urologist and see what he thinks. Luckily I am seeing him on Monday 😁.