Prostap Time Again

I have a Prostap Hormone Injection every 12 weeks and it’s amazing how quickly it comes around. The prostap is a hormone injection which restricts the production of testosterone which in turn helps to feed the Prostate Cancer so it is important that I have this although I am not sure how much it is doing in terms of fighting the cancer.

What I do know is that it gives me lots of hot flushes, some mild some pretty intense.

I arrived for my appointment on time and discovered that the surgery now had a video doorbell! I donned my mask and pressed the button, there was a fairly long pause before a voice asked me if I had an appointment, I said I did and they then asked my name. I could hear the clicking of the keyboard as my name was typed into the computer. Another pause and then the voice said OK I will be with you in a moment and the connection to the doorbell was severed.

In my head I could hear the footsteps of the person walking to the front door!

I was allowed in and asked to disinfection my hands and then directed to take a seat.

Within a minute or two the nurse appeared and called me into the treatment room. The injection had already been prepped and she told me that last time I had the injection I had it in the right side of my stomach and so this time I would have it on the left side.

Although I was prepared for the injection I managed to jump as the nurse touched me, I think it was her cold hands! My jump caused her to stratch me, my fault as I had moved.

Second time I was ready and the needle was in and the fluid was pushed into me. Then it was over and a plaster was put over the hole where the needle went in.

The prostap injection uses a larger needle than a standard syringe and so only certain nurses can administer this injection and so they get plenty of practice with it and are very good at giving the injection.

The nurse looked up the date of my next injection in 12 weeks and so I would be back on the 27th of January 2021. Not my first medical appointment for 2021!

This was my 14th Prostap Injection, 13 have been done at the GP’s surgery and one at UCLH. I think I will continue to be on Prostap for the foreseeable future which I don’t mind although I could do without the hot flushes.

An Exciting Trip Out

Well today as been full of excitement, well not really that exciting but exciting for me.

I have been out of the house today and visited the GP in Thorley for my three monthly Hormone Injection.

It was good to get out and see a small part of the world.  It was also good to get behind the wheel of the car and do a bit of driving.  They have resurfaced the main road through the village which we had seen from our house but hadn’t driven down, looks like they have done a good job and now all the potholes have gone.

I arrived at the Surgery with my mask and gloves on and like last time I needed to ring the doorbell to be let in.

I actually feel this system works much better as there was no waiting around and I was straight in to see the nurse.  Although I guess less people are going to the surgery and that is why it is more efficient but I am sure there are lessons to be learnt!

The nurse was very good as well as quick and efficient, the injection is done with a big needle and I never felt a thing which is always a good result.

And before I knew it I was off home, I made the most of the drive and went through town to have a look around.  The roads were quiet and driving was a pleasure but I can’t see that lasting!

Soon I was home and looking forward to my next adventure which is tomorrow when I go out for a blood test!

 

A Right Palaver

So two simple things need to happen, I need my three monthly hormone injection and I need to have a blood test in time for my next Oncology Outpatients Appointment on the 3rd June.

It would make sense to have them both at same time and have them both done by the GP’s Surgery. After all I normally have my Hormone Injection done by them and I had recently had a blood test done at the surgery.

So last week I started making enquiries about getting this done.

First of all I had to convince them that this was the best plan!

Then they couldn’t access the nurses diaries as they only release appointments 2 weeks in advance.

The person I was speaking to said she would speak to the practice manager and get back to me.

And true to her word she called me back and said that the practice manager had said that I should be referred to the District Nurses who would come to my house and do both the Hormone Injection and the Blood Test.

What a result I thought, I was happy with this outcome.

A few days passed and then I got a call from one of the District Nurses who asked if I was housebound. I said I was as I was classed as Extremely Vulnerable. She asked if I was housebound prior to the virus and I said no.

She said then I wasn’t technically housebound and that they couldn’t visit and I would be referred back to the GP.

Great?

So I messaged the surgery who got back to me the next day, it was the same person that I had previously spoken too!

We discussed the problem and she tried to book me in. She managed to book me in for the hormone injection but couldn’t access the calendar for booking the blood test.

She would call me back!

And she did, to tell me there were no available slots for blood tests and so I would need to go to The Rivers Hospital and have a blood test done there!

The surgery would post me a blood test form to take with me.

I was straight on the phone to The Rivers and managed to get booked in.

So I now have my Hormone Injection on the 27th and the Blood Test on the 28th! One woth the GP and one at The Rivers!

What should have been fairly simple seemed to become very complicated. It’s a good job I am pretty robust and can work through these situations but I can see a lot of people finding this very stressful.

I feel more needs to be done to make these things simpler and less of a palaver!

Fingers crossed🤞

Prostap Number 14

Back at the GP’s Surgery today for my 3 monthly Prostap Injection. The surgery is very quite today because they have suspended the ‘walk in’ clinic due to the Corona Virus.

There are two of us sat in waiting room when normally there would be about twenty.

The Prostap or hormone injection is a pretty straight forward procedure which just involves having a large needle stuck in my stomach.

Today the injection was done by Bonnie, one of the nurses.  There was also a trainee nurse in attendance who was learning what was going on.

So a quick and easy procedure today, hot flushes will follow no doubt.

A busy week this week as I have an oncology appointment on Wednesday and an appointment with the Neurosurgeon on Thursday.

Watch this space!

Three Years On

I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.

The diagnosis I was initially given was.

  • Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

Since then my PSA has been as low as 1.6 and as high as 1585.

In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example.  Side effects have been tough at times and diverse, from minor to visits to A&E.

  • Hormone Therapy – Prostap Ongoing
  • Chemotherapy – Docetaxel
  • Radiotherapy – On Spine and Shoulder 3 times
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • Lutetium 177 – Current Treatment

Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.

I believe to rest to be more accurate.

  • Blood Test 42 at least
  • Bone Scan 10
  • CT Scan 7
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • Prostap Injection 10
  • PET Scan 1

And of course on top of this there have been the regular outpatients appointments and other trips to the hospital.  At times I have been to the hospital everyday for a week and at other times just a monthly visit.

Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.

I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.

I am hopeful that the Lutetium is working as it should and I look forward to the future.

Back Home

Well I survived the trip to Bratislava and am back home again now and getting back into routine. I am really glad we went ahead with the trip and the challenges it presented as it was a real morale booster and to some extent a touch of normality.

Back home now and feeling a little frustrated that things are moving so slowly around my back, the focus seems to be on getting the back brace and I believe who is going to fund it.  In the end I think the Oncology Department have funded it and I had a phone call this morning saying that I should expect a phone call from the company that makes the braces so I can go in for a fitting.

Overall I feel my back is on the mend although it might be the pain medication that is keeping the pain under control and as such giving me a slightly false impression.  Whatever I need to take care not to aggravate the current injury or create another.

I do wonder what would have happened if I had just gone into my local A&E department?

I am also keen to see someone for the Neurosurgery team and get more info about my back, questions like.

Will it heel?

Are other bones/vertebrae at risk?

Can I take anything to reduce re-occurrence?

Can I do anything to reduce re-occurrence?

But let’s get the brace and take it from there.

I do have a date for my next Lutetium treatment and that is now on the 17th of December, so not long.   I am also due more hormone therapy before then and I need to get that scheduled in.

So I continue to take it easy, walking is still painful after a short distance and standing still can be even worse.  I also have to be careful lifting things and not over stretching.

Part of normality for me is getting to walk Teddy, something we both enjoy.  Currently I am only doing short walks with him and some friends take him out a couple of times a week for a longer walk which works quite well but I would love to be going along as well.  Here he is in his new winter coat.

 

 

Prostap Number 13

Off to the GP Surgery today for Prostap injection number 13, hopefully lucky number 13!

The appointment went smoothly with me arriving just before the appointment time and I was soon seen by Bonnie who has done the bulk of my injections.

The injection was fairly painless and administered while I was in a seated position into the left side of my stomach.

I am still surprised at the size of the needle!

I was also asked to complete a short questionnaire and book a review with a pharmacist to go through the medication I am on which is a telephone call booked for next week.

The next injection is booked for 17 December.

Prostap

Had my Prostap injection today at the GP surgery, i think it’s my 9th Prostap injection.

The injection is known as a hormone injection or Hormone Therapy and it’s purpose is to suppress the production of testosterone which Prostate Cancer feeds on.

I guess it works to some extend although it doesn’t seem to be effective at slowing down the cancer which is spreading and my PSA is still rising.

The appointment today was quick and easy, I had gone to the surgery to book an injection and was told there was a space in the afternoon.

Result😁👍

A Chilly Start

A chilly start to the day today with a heavy frost on the cars. When I last went to the hospital the last remains of summer were there to keep me warm.

This morning it was down to a cup of tea and a blueberry muffin!

Hopefully just a quick trip to the hospital today with the main purpose to have a blood test to check that my liver is still stable with no toxicity from the Nivolumab two weeks ago.

I will need to wait around for results just in case the results are not good and I need something to treat the liver.

Fingers crossed all will be ok for treatment in two weeks.

After picking up the trial vials from Emily it was off down to Blood Tests for blood tests, we didn’t have long to wait before my number was called and I was in the cubicle with a new plebotomist.

He had a quick look at my arms and decided my veins in my arms were not very good so he opted for my left hand.

He was very good at getting the needle in, quick and painless.

So far so good.

But while the needle was in the flow was not so good.

After filling the five vials for the blood test he decided that we needed to get another line in to fill up the trial vials.

So a double needle job this morning!

Fortunately he was very good at getting the needle in and so I didn’t do too much squirming around.

You can see from the photo above all the things I am being tested for, that is one of the good things about being on a trial.

I still need to learn what all the different tests are, a project for another day.

So we had an hour or so to wait for the blood test results to come back so what better to do than go for breakfast. We decided to treat ourselves and choose to go to Patisserie Valerie for breakfast.

I was feeling in a good mood and Barbara thought she would take my picture!

I was having none of it!!!!

Once we returned to the Macmillan Cancer Centre we were quickly seen by Dr Linch. We had a good chat and he had some good news about the trial.

A report had been published about a similar trial in the USA called Checkpoint 650 and it said that a lot of the participants had responded well to the trial. I had seen a headline about this but had not realised that is was a sister trial.

He gave a quick update on the Neptunes trial and said that one of the other participants had spent a week in hospital due to side effects so I count myself lucky with the ones I had.

He gave me an examination which was all ok and we reviewed my health since my last visit.

The results of the blood test were not in and we were asked to return in an hour.

We did so and was seen by Fernando the Clinical Nurse Specialist who said my bloods and especially my liver were ok, a few were a little high but nothing to worry about.

So the good news is I dont need to take anything else and we could head home.

Overall a positive day and I am happy with the outcome 😁.

Once I got home I had a couple of hours to wait then it was off to the Doctors Surgery to see Nurse Bonnie for my Prostap (Hormone Therapy) injection which considering that it is a big needle going in my stomach, went very well.

Back in 12 weeks for that again.

Hormone Injection No 8

Back at the Herts and Essex today for my 3 monthly Hormone Injection, the whole process was pretty quick and I was only there for about 5 mins.

There is something odd about having an injection in your stomach.

We did have a debate about whether you could have the injection early or not and I will be checking with the oncologist when I see him next.20180807_115648