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.

Roasting Hot Today

And heading back to UCLH for an Oncology Outpatients appointment to review where we are.

There is a lot to review after the stay in hospital and radiotherapy last week.

I also need to get my head around all the scan results that I had previously had.

But for now it’s getting to the hospital and dealing with the heat.

The journey wasn’t too bad and we made good time. Got to the hospital and had a quick blood test.

Looking at the computer it would seem I have had 32 blood tests at UCLH, which is quite a few. On top of that I have probably had another 20 or more at Princess Alexandra and local all in the space of two and a half years or so.

Blood test done it was off for some breakfast.

Soon we back at the reception and in time for a quick check over with Danny and Ilona the research nurses who took all the usual blood pressure etc.

We were actually called forward almost on time, one of the advantages of an early appointment.

So we had a fairly good chat today and covered a fair bit of ground.

The bottom line is that the cancer is progressing at a fair rate with new sites both on bones and in soft tissue as evidenced by the PET Scan.

It also showed bone mets in my skull but as no previous scan exists we do not know if these are new or not.

On the plus side I have no head or brain issues aside from a slight fog which I put down to treatment.

On the Lutetium front it turns out that you cannot have it within 4 weeks of radiotherapy so that gives us a bit of a timeline.

I should be referred tomorrow and will hopefully get to see a specialist next week with a view to getting the first treatment as soon possible after the 4 weeks is up.

I am very keen to get this treatment started with the hope it will slow things down or even improve my condition.

My PSA is currently 449 which is high but no longer sure how relevant this really is. I guess it is just another indicator to be used alongside

In the meantime I am going to stay on Dexamethasone but a smaller dose and also the morphine slow release tablet but with a view to only taking it at night and using the Oramorph as a pain relief backup if needed.

So bad news and good news.

And I am not sure how I feel.

I am naturally optimistic and want to keep happy and make the most of life but it can be tough.

Radiotherapy Number 5

We were lucky getting on the train today, it was just pulling in as we got there.

A little too close for comfort!

Hopefully it is just plain sailing from here on in.

I am glad it is the last treatment today, it has felt like a long week with all my time thinking about when the next appointment is.

And what would you expect for a Friday, one of the machines was being serviced and there was a 45 minute delay.

So we sat and waited.

The treatment was as quick as usual with both sites being zapped. It takes longer to get you into position than it does to do the treatment but I guess this is key to getting the radiation to the right place.

On the screens there are loads of numbers all to do with position, mind boggling for me but I am sure it is all meaningful to the radiographers.

Anyway, last treatment done and Barbara and I are heading away for the weekend.

Looking forward to a nice relaxing weekend.

Radiotherapy Number 4

On the train again heading to London and UCLH for Number 4.

It’s a 5.40pm appointment today which is later than I would like and probably means we won’t be home until around 8pm.

Still if this is all I can moan about then it’s a good thing 👍😁.

Feeling a lot better but still using the walking stick to provide some support to my legs. Had a little back pain but with the slow release Morphine and a top up of paracetamol I seem to be one top of it.

Appointment run over as expected, in fact I may have been the last person in.

It’s done now with one to go👍.

Radiotherapy Number 3

Back at UCLH.

We have it fine tuned getting to and from the hospital now.

Let’s hope the treatment goes smoothly.

I have taken my anti sickness tablet that seemed to have worked well yesterday.

So fingers crossed 🤞.

There was a bit of a delay today, they were running behind schedule, that’s the problem with the later appointments.

Tomorrow’s is even later so who knows what that will bring.

The treatment itself was quick and uneventful.

I can’t imagine how people who do six weeks of radiotherapy cope, it’s not so much the treatment but appointment times and getting to and from the hospital.

Well more than halfway through, number four tomorrow 👍.

Radiotherapy Number 2

Back at UCLH today for treatment number 2.

Hopefully I am better prepared, I have taken an anti sickness tablet called Ondansetron which I hope will get me home ok.

The treatment itself was much quicker today as they did not need to take any X Rays and I was in and out fairly quickly.

I am also please to report that the anti sickness tablets seemed to have worked with no side effects to mention.

Fingers crossed that it will be plain sailing for the next 3 treatments🤞.

Radiotherapy Number 1 – update

Well the treatment went well but the drive home was another matter!

We decided to get an Uber home and it was actually a very nice car.

We wiggled through the streets northbound away from the hospital.

We had just reached the North Circular Road when I started to feel sick. Not a rumbling but a feeling in my stomach.

I hoped it would pass.

As we neared the M11 I asked Barbara if she had a carrier bag in her bag, she gave me a strange look until I explained.

She then produced a poo bag from her pocket, at least I had a bag if the worst happened.

We drove up the M11 and I was feeling worse.

As we passed the Harlow turnoff I asked the driver to pull onto the Hard Shoulder.

He had barely stopped and I was out of the car retching over the crash barrier!

I threw up a couple of times, just a clear fluid, not a carrot in sight!

What were people thinking as they sped past?

I regained my composure and got back into the car.

Not far to home and thats where I wanted to be.

I managed to make it home without a repeat incident.

I have since eaten and while I feel pretty rough and tired I don’t think I will be sick again🤞.

Did I receive a big dose of radiation today, I don’t know but it’s never effected me like this before, I shall discuss it tomorrow with the Radiographer.

For now it’s bed for me, I feel done in.

💤💤💤

Radiotherapy Number 1

Back to UCLH today for the first of five Radiotherapy Treatments. Not my first Radiotherapy and in fact it’s my third set having been treated before at the North Middlesex Hospital and UCLH.

My appointment time is 5pm so a bit late in the day for my liking but the train is fairly empty which is good.

The annoying thing is I got a phone call from the radiotherapy department asking me if I would be there for 4.30pm! They have no concept that people need to travel in and we aim for the appointment times given.

Previously I have tolerated Radiotherapy pretty well so I am hoping it will be the same again.

The main difference this time is they are targeting two sites on my spine so I guess that means a double dose?

We arrived promptly at 5pm and was soon called forward to wait in another area.

We were given a quick briefing and a chance to ask questions.

I asked about the double dose and the radiographer said it was not a double but two single doses.

I guess there is a difference but not that I can understand 🤔.

Soon I was called into the room with the machine!

Nice lighting with The XX playing in the background, very relaxing.

Because I was having two sites treated I would go through the process of positioning, X Ray and treatment twice.

It was fairly quick and easy and you don’t feel nothing during treatment.

Did it really happen?

Then it was time to get dressed and I was given my schedule for the week.

1 down 4 to go👍.

Hospital Day 2

Well I awoke feeling fairly tired after a tired and restless night on the Ward at UCLH.  What with all the beeping of IV Pumps, staff moving around and argumentative patients and on top of that my own restless mind, it was never going to be a good night.  I also had Dexamethasone late in the evening which would keep me awake.

I was also supposed to stay on my back all the time and that was starting to cause me some backache or perhaps I should say, add to my back pain.

Still it was morning and I was wondering what the day would bring.

Before long the tea trolley arrived and I took a welcome cup of tea.

As I was immobilised I had to use a bottle to wee which wasn’t easy but I coped!

Tea was soon followed by breakfast and I opted for toast and marmalade with more tea.

I was feeling rough and really wanted to have a wash and clean my teeth, how was this going to work?

I was soon hooked up to the drip again and infused with some Dexamethasone, I asked about a wash and was told I would be having a bed bath, can’t wait!!!

Come around 9am Barbara turned up and I was very pleased to see her and she brought Tea and Cake with her, along with a change of clothes and other supplies from home.

Then it was time for my bed bath and time to wave bye bye to the last of my dignity, to be fair the people who did the bed bath were very good and thorough although by the end of it my hair looked like Dr Emmet Brown from the Back To The Future Films!

I was then seen by one of the Oncology Registrars, Dr Yin whom I had seen in clinic before, so he was familiar with my case.  He asked how I was and check me over, he said Dr Linch would be around later in the afternoon and that I was going to be scheduled for radiotherapy but he didn’t know when that would be.

He also said that the MRI scan looked good and while I had a lesion inside my spine it was not putting pressure on the spinal cord and the purpose of the radiotherapy would be to reduce that lesion even more so that it would not grow.  The radiotherapy and dexamethasone should both work towards keeping it small.

It was turning into a busy morning.

I was then visited by a doctor from the radiotherapy team who talk me through the radiotherapy process and got me to sign a consent form.  My takeaway from this meeting was that they were going to start radiotherapy today and for five days and so I assumed I would be staying in for 5 days and started making plans to do that.

Someone would be sent up to take me down to the radiotherapy department later in the day.

Lunch arrived, tuna salad which looked quite nice and wouldn’t get cold as I couldn’t eat it then as I was once more hooked up to the drip for my second Dexamethasone infusion.

Some good news came in that I was no longer under spinal cord compression protocol and no longer needed to be kept immobilised which was great news, it meant I could sit and and walk about, first stop the loo!

20190711_135609

Initially I was a bit wobbly, but I think it was just because I had been immobilised for so long, I used my stick to help me get around and it was good to stretch my legs.  I would also be able to sit up and eat my lunch and not wear some of it like I did last night!

Lunch done I was soon picked up by a porter who took me down to radiotherapy for the planning scan.

I had been through this before so I knew the procedure, they would be doing a CT Scan and marking me up for the treatment, I gained another tattoo just a small dot on my chest, but it is now my third.

20190711_142135

It was at the end of the planning session that I learnt that I would not be having treatment until the 16th, contrary to what I thought I had been told earlier, what was going on?

Back on the 10th floor I just sat down when a physiotherapist turned up to assess me, She gave me a quick examination and asked lots of questions.  We then went for a little walk so she could assess me, and she offered me advice on using the walking stick, she also said she could provide me with another stick which might help.

On the way back I was ambushed by Dr Linch and his team, there was about six of them, we had a chat about how I was, and he said I could be discharged and go home.

Wow, I was thinking I would be in for a few days but was pleased to be going home.

He said that while I clinically had cord compression, I fell outside the parameters for the cord compression protocol which was good, and the aim was to keep me there.

I would have the radiotherapy next week and then see him again the following week for a catch up and a review.

I was now time to plan a quick escape and get home although the hospital had other ideas!!

We quickly gathered my bits together and I got changed, we were told we would go down to the discharge lounge where they would sort out my prescription etc.

This took ages and ages as we waited for the prescription to be fulfilled, we were told it was because I would be getting a controlled drug, morphine.  But still why does it take so long!

Finally just after 6pm we set off home in a taxi, I couldn’t face the tube!

We got home and I felt I would now be able to relax, it had been a long couple of days.

I must stay that all the staff at the hospital were great, kind and caring, there was confusion between departments and at time I felt I was kept in the dark but I guess it was an evolving situation.

Radiotherapy

Well today started a bit funny😁.

I had decided to have a bit of a lie in and so was surprised when I got a phone call from the radiotherapy department at UCLH asking me if I was coming in for my Radiotherapy. It turned out Dr Davda had booked me in for 5 sessions of radiotherapy to try and ease the pain I have been getting in my back.

I said I would be in as soon as I could.

At about 10am Dr Davda phoned me and explained that she had booked me in and had meant to let me know but hadn’t got round to it.

Anyway, after walking Teddy and getting ready Barbara and I set off for London, first a taxi to the station and then a train to Tottenham Hale where we caught the Tube to Warren Street.

Overall a simple journey albeit not one I had been expecting to be doing.

We made our way to the radiotherapy department which is in the basement of the main building and was asked to take a seat.

As it was my first radiotherapy treatment at UCLH I had to have a scan. As I had previously had radiotherapy on my back I already had a tattoo in the centre of my chest which they could use to line me up.

Once the scan was complete I was then back in the queue for radiotherapy.

The radiotherapy itself only took a few minutes on a very smart looking machine.

Once the treatment was done I was booked in for the following day.