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 moreπŸ˜‘.

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 🐢.

Patient Research Ambassador North Thames Meeting

Back in London today but for something different as it was the quarterly CRN North Thames PRA Meeting.

That’s Clinical Research Network North Thames Patient Research Ambassador Meeting.

Better to use the abbreviations πŸ˜‰.

I will explain more about the CRN and being a PRA in a later post.

Today we started the meeting with a session of Mindfulness which was interesting and only took a few minutes.

I will be trying this at home and the good news is you can do it in bed😁.

We then got updates on the CRN from Christine and Iain.

And then a very interesting talk from Professor David Werry on Stroke Research and how he uses patients in the different stages of research from setting up the trial and all the way through.

I learnt a lot from this about Strokes but it made me wonder how much patient engagement there is in other trials.

We spent sometime talking about what we had been up to as PRA’s which was good and interesting to hear the range of things that are going on.

We finished off the day with a quick comms update and I made a quick video with Lauren about my research experience and my PRA experience.

Then time to head back home before coming back to London on Monday for my Urology Ultrasound!

Back to London

10.20 A slightly later start today as I just have the one appointment today. 11.10 with Mark Linch for a catch up on the Neptunes trial and the tests and scans I have had so far.

I still need to have the Transperineal Biopsy but don’t have a date for that yet and I think they said I would have a MRI scan as well.

11.05 and we have arrived at UCLH and have been directed upstairs to Reception 2.

12.35 and we are finally called in but instead of Dr Lunch we meet Prof Gert Attard.

A confusing start to the appointment sees us talking about the Stampede Trial and whether I wanted to go back on it. Eventually Dr Linch comes in to clarify matters and we agree that I will not go back onto Metformin but they will continue to take observations and feed data into the Stampede Trial.

More consent forms need to be sign so that UCLH can continue with that trial.

We also go through the paperwork for the Neptunes trial.

I am told that I should have the Transperineal Biopsy and the MRI sometime over the next two weeks and that treatment should start on 4th July πŸ˜πŸ‘.

I am also told I need another ECG as the previous one was done 2 earlier, it needs to be done within 2 weeks of starting the trial.

I also need to have another blood test and provide a urine sample.

We also spend some time with the Trial Nurse, Emily, who some more detail about what will be going on. She also provides a complex schedule of all the things that will be going on. It looks very busy but is difficult to read.

I may create my own schedule with dates.

After seeing Emily we head down into the bunker for a blood test with a very nice nurse who has taken my blood a few times. She is very good and I hardly feel the needle go in.

It’s a complex blood test and she fills up 6 tubes with blood. I think they must be testing me for everything πŸ˜‰.

Then it’s off to the main building for the ECG which was very quick.

Finally we can head home, we were gone for longer than I hoped and look forward to seeing Teddy once we get home.

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 😁.

Holiday

I am on holiday this week which is fortunate with the Neptunes trial starting soon. They have advised against travel for the initial part of the trial so it is good timing.

The holiday also gives me time to get ready for the trial. I want to be both physically and mentally ready.

So today I had a good walk to help with the fitness and it gave me some time to think.

I am on a little island off the coast of Croatia that is so quite and peaceful. It is the perfect place to relax as well and I found myself smiling at the beauty and the solitude.

The perfect place to unwind before starting on tests and then the trial.

Pill Sorting Time Again

About every 3 weeks I sort through my pills and fill up my dosette boxes so it makes it easier to take the pills.

The good news is that I am taking less pills now. Because of the Neptunes trial I am no longer taking Metformin or Enzalutimide.

Because I am going on holiday tomorrow 😎, I needed to sort out pills for holiday including some additional pain killers just in case I need them.

Good news, all go for Neptunes

After all my worries I received some good news today and that is that I am eligible for the Neptunes Trial.

They have screened 14 people so far and I am only the second to be accepted onto the trial. A rather dubious claim to fame!

So this is going to be a busy couple of weeks as I need to have loads of tests done.

I have already had a further blood test today and an ECG.

Still to come are.

CT and MRI scans

Bone scan

Transperineal Biopsy

And more blood tests.

So I am back to UCLH in two weeks.

Good job I am on holiday for a week before then.

I am to stop taking the Enzalutimide and Metformin but keep going with Hormone Treatment.

I am also going to keep taking the Finesteride, Tamsulosin and Solifinicin.

Had a good chat with Dr Mark Linch about the trial and also met the trial nurse who will be helping with the trial. His name is Danny.

On the downside my PSA had risen slightly to 9.24.

I had my blood pressure done today which was on first reading 157/94 Which is a little high and then 138/93 on the second.

I had 99% oxygen saturation

A pulse of 71

And my temp was 36.4

My weight fully clothed was 109.1.

Both Barbara and I are very pleased that I am IMS positive and on the trial. I will write more about what the trial involves in due course and will keep updating as we go throughout the trial.

Waiting…..

Well it’s waiting time again….

Here at the Macmillan Cancer Centre they use a 3 stage approach.

First you check in with the main desk in reception on the ground floor.

Then you wait.

Then your name appears on a screen and you go and wait somewhere else. In my case Outpatients Reception 2.

Again you check in.

And then you wait……..

As I write we are 45 minutes past the appointment time.

There is then a third stage where your name is called and then you go to a examination room and wait there!

Reception 2 doesn’t seem as busy as past visits although the wait seems just as long😐.