Famous Last Words!

Up early today as I am off to UCLH for a CT Scan and a blood test.  I am feeling pretty good and so I am expecting a fairly routine day prior to my Outpatients appointment tomorrow.

Famous last words!

We got picked up on time and was soon zooming down the M11. We arrived at the hospital on time and headed to the Imaging Department.

After checking in there was a bit of a wait as we waited for a scanner to become available.

When the scanner was available I was taken into the scanner room and asked to lie on the bed.

The main building at UCLH, my scan was hoping to take place in Imaging Department.

A cannula was fitted and the radiographer did a good job getting it in first time.

I was hooked up to the machine that would push the contrast fluid in and asked to lie flat.

I immediately felt pain and discomfort lying flat as usually they put a support under my legs to help take some of the pressure off my back.

A CT Scanner similar to the one I was in today.

I asked for some support for my legs which they tried to put in place but I was halfway in the scanner and it was proving difficult. They were also asking me to lift both legs at the same time which was never going to happen!

I was in pain and so I asked them to pull me back out of the scanner.

Once I was out they could then fit the support under my legs and I felt much more comfortable .

They were then able to continue with the scan which only took around 5 minutes.

With the scan done we headed over to the Macmillan Cancer Centre for a blood test.

There were about 20 people in front of us and so we had time for coffee and before long it was my turn to go in.

The plebotomist was very good and managed to get the needle into the vein first time and the blood was taken.

Little did I know that I would be seeing the same plebotomist again before the day was done!

We were on our way home having left the hospital after the blood test when I got a phone call from Janet, one of the CNS’s who said that my haemoglobin levels were very low and that I needed a blood transfusion.
It would seem that my haemoglobin was at 62, the lowest it has ever been and is a fairly serious level to be at. This would help explain my breathlessness!

This chart shows that my Haemoglobin was already low, 62 is by far the lowest!

But to get the blood transfusion I needed to get a Covid Swab test done and also a blood cross match.

There then followed a debate as when to have the transfusion, with Thursday being our preferred option as Barbara is away on Friday.
As it happens the transfusion is is now scheduled for Wednesday (tomorrow) at 9am.
This meant we had to turn around and go back to the hospital and have a blood cross match and Covid Swab done.

It took around 20 minutes to get back to the hospital and fortunately we were able to queue jump and the covid test done.

The blood cross match was taken fairly quickly and by the same plebotomist that I seen early in the day!

Once again we headed home and before long I got another phone call, this time from a nurse in the team that would be doing the blood transfusion and that they could fit me in at 9am tomorrow which suits our plans better ๐Ÿ‘๐Ÿ˜.

So an early start tomorrow with pick up scheduled for 7am tomorrow.

I just hope everything goes to plan ๐Ÿคž.

4 Weeks Since Discharge ๐Ÿ’ช

Well it had been 4 weeks since I was discharged from hospital and for the most part I am feeling pretty good with no signs of infections or anything else that might put me back in.

Plenty of fluids in hospital.

As a reminder I have been in hospital 5 times since October with a total of nearly a month in hospital. And as soon as I was discharged I began to get ill again so 4 weeks out is a major milestone for me.

All that time in hospital and probably the steroids and other medication, have taken their toll on me and I have suffered from muscle wastage and feel weak. I cannot walk very far and soon get out of of breath.

I am slowly building myself back up and am trying to get my life back to normal.

We went out last night for dinner to celebrate my wifes, Barbara’s birthday, which was a treat for both of us.

And of course treatment, scans and appointments continue.

Waiting for a scan, you can also see my brace which I wear most of the time.

I have had my third Radium 223 treatment, almost 2 weeks ago at the time of writing.

Having a cannula fitted prior to Whole Body Bone Scan and third Radium treatment.

For me it is hard to tell how effective the Radium is, I don’t seem to have any side effects which is a result and am not suffering any extra bone pain.

I am having a series of scans which will help tell if the Radium is working and should get the results at my next Outpatients appointment.

My PSA has dropped a little to 1,572 from 1,678, so a change of around minus 100, which is good news. Not sure if this is down to the Radium or not as I was warned that the Radium could cause the PSA to rise.

One change on the medication front is that the maintenance dose of Dexamethasone that I am on has gone from 0.5mg to 2mg. Partly on my request as while I was in hospital being on the higher dose seemed to help.

Of course there is a trade off with steroids as they can cause muscle wastage and in my case keep me awake so my sleep is a little disrupted. But I think overall the higher dose is beneficial for me.

One of the key differences on being discharged this time is that I want to do things whereas previously I had just about managed to get up and lie on the sofa. And so I have been doing a number of projects that I had either previously started or had wanted to start.

One of the projects I have completed.

This is all helping with my rehabilitation and getting things back to normal.

And of course one of those normal things is writing this blog and I shall try and get back to writing about things as they happen or come into my mind.

I wish you all well โค๏ธ.

Hospital Day – Am I Heading Home

Well today has been a successful day with the second part of the blood infusion completed and I can now mobilise ๐Ÿ˜๐Ÿ‘.

Hospital life started early this morning with observations, blood pressure and temperature being taken at just before 6am and my morning medication was left to be taken with breakfast.

After the slow start yesterday it was nice to have breakfast at 7.30, I opted for toast and marmalade with tea, a change to the Rice Crispies I have been having.

Early breakfast meant I could have an earlier wash albeit in bed, due to being confined to bed.

And so this meant that I was washed and sorted for when they started to prep me for the blood transfusion, yesterday was a little chaotic as they were trying to prep while I washing and trying to get sorted.

But today I was ahead of the game. The prep for the blood transfusion is taking a blood sample, checking my observations and making sure the cannula works OK.

All the prep was done and the blood was connected and set to be transfused in three hours, it’s about a third of a litre of blood so quite a slow rate and that is done to protect me.

About two thirds of the way through an excited therapist turned up from Occupational Therapy to let me know that my CT Scan had been reviewed and my bed confinement had been lifted and I could get out of bed and start moving around.

Also I would not need an additional brace or anything else, I could just go back to the previous practices I had adopted prior to admission.

Sounds easy aside from the fact I had spent the last week flat on my back!

Anyway the blood transfusion completed on schedule and the therapist returned just after lunch.

The first task was sitting up and I could feel the blood rushing from my head and a slight lightheaded wave rushed over me although after that initial wave I was feeling good.

The therapist helped me sort my gown out and get my brace on and then we were off down the corridor for a quick walk. I felt pretty good and was pleased my legs remembered how to walk.

The corridor is not long so it wasn’t a long walk but it was enough for those first steps.

I have since repeated the walk and will do another before settling down for the evening.

Overall I felt quite good although I recognise that it will take some time to get my strength back up and even longer before before I can walk Teddy again but what a goal to have ๐Ÿ˜๐Ÿ‘.

On a walk with Teddy

I have managed to spend most of the afternoon out of bed and had my evening meal sat on a chair at the table which is another positive move and one that I enjoyed.

I was also able to sit in the chair and read the newspaper and a couple of magazines, have you ever tried reading a newspaper flat on your back, it can be done but it can be a struggle at times especially when the paper fights back ๐Ÿ˜… ๐Ÿ˜‰.

A cloudy day in London but I was able to get up and take the photo ๐Ÿ‘

And so there are hopes I can head home tomorrow. There is still one last hurdle to be cleared and that is I still have a catheter fitted and that will probably be removed in the morning once they are confident I can make it to and from the bathroom. A journey I have already completed ๐Ÿ‘.

And once the catheter has been removed we need time to go to the toilet several times and make sure everything works as it should.

So with all my fingers and toes crossed I could be heading home late tomorrow afternoon or early evening ๐Ÿคž๐Ÿคž๐Ÿคž๐Ÿคž

For me the main thing is to be heading home in the best possible shape so I do not get readmitted in another couple of weeks. I already have an Outpatients appointment booked for next Wednesday where I think we will be talking about next steps.

Hospital Day 7

Well as day 7 draws to close it has been a positive day with some steps forward.

The main thing was that I managed to have one unit of blood as part of the transfusion and there was no reaction. So a real result ๐Ÿ‘.

I must confess that the thought of a blood transfusion has made me a little, not quesy, but perhaps more mindful of what is going into me and where it has come from. I have had lots of medication in drips, infusions and injections but these are mostly, as far as I am aware made in a lab whereas the blood is very much donated. Very kindly donated I might add.

From here it looked like a little alien!
And into the arm.

I also manage to get the CT Scan on my spine done although it is still to be reviewed by the neurosurgery team and so that means I am still confined to bed.

The trip to the scanner involved a quick trip around the hospital on what looked like a lovely day.

Getting out of bed is a major milestone and a step towards getting home and that all important next treatment. It also means that things like the catheter can be removed and I can confirm I can toilet normally.

I learnt a new abbreviation today, TWOC or Trial Without Catheter. So basically just normal toilet function.

I had to interupt the doctor to ask what TWOC meant, sometimes they forget they are talking code when they talk in front of patients, I know why they do it but they do need to involve and explain to us patients.

So there has been a fair bit of sitting around, which is most of my day, the blood transfusion took three hours where I had to sit fairly still to prevent the infusion pump going into alarm.

And I feel I have been waiting all day to hear about the CT Scan, that wait goes on!

The highlight of the day was of course a visit from Barbara who as well as bringing a tasty strawberry ๐Ÿ“ tart also brought her smile and stories of home.

She also took the next couple of photos of the view and crackers they are too.

The setting sun and Post Office Tower
And a few moments later!

So spirits are high and I feel there has been positive movements today. It is unlikely that I will be discharged before Thursday or Friday now which ok as it means I will go home in a better state.

I don’t especially want to spent another weekend here as for the most part I would be in a bit of a limbo state. So fingers crossed ๐Ÿคž.

I was going to take a selfie but couldn’t find my comb!

CT Scan 17 Feb

Back at UCLH for another scan on my back, a CT scan this time.

The good news about a CT scan is that they are quick, it took 3 minutes for the scan. It took me 3 hours to get there and back? Just saying ๐Ÿ˜‰.

The reason for the scan was to have another look at my back, I think the CT scan can give a different view to the MRI I had before.

As always the people I dealt with were excellent and the scan was quick and simple.

Just have to wait for the results now.

Vertebroplasty Day One

Today is admissions day for my Vertebroplasty procedure, it all feels a little rushed having just had the phone call yesterday.

I had a fairly busy morning what with walking Teddy and then getting him to the dog sitter and then before long I was picking up Barbara and heading to the train station.

A comfortable train ride and a taxi saw us arriving at the National Hospital for Neurology and Neurosurgery where we made our way to the Queen Anne ward, my home for the next couple of nights.

20200108_134300

I was given a bed in a small section of the ward where it looked like there would be four of us.

No real instructions were given on what to do and we were left to our own devices.

Eventually I was given a hospital wrist band and found out that I would have an X-Ray and a CT Scan.

After another wait a porter arrived and I was wheeled to the imaging department, in many ways it was good to have a porter as the hospital was a rabbit warren of corridors and rooms.

We arrived to the chorus of an intermittent fire alarm, which meant stay in place, there was some confusion and fire marshal’s came and went.

Silence.

Thankfully and it seemed the whole hospital gave a grateful sigh!

X-Ray first in the same room I had the X-Ray in December and then the CT Scan and before long we were heading back upstairs to the ward.

It would seem that there was now nothing to be done but wait until the morning so I started to settle in more.

20200108_153803

Barbara headed off at about 6.30 pm by which time I was in my pyjama’s and listening to music.

I had my blood pressure done a couple of times which was a little high, I felt fine but is probably down to pre-op nerves.

I also signed consent forms and so on, blood tests, ECG and there was me hoping for some “Me Time”!

Before long I was ready for bed and hoped for a good nights sleep, alas it wasn’t to be what with call alarms being pressed through the night, my neighbour snoring for England and nurses clomping about it proved to be a restless night!

Still I would get a good sleep in theatre………….

 

 

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.ย  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.ย  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.

Hospital Day 2

Well I awoke feeling fairly tired after a tired and restless night on the Ward at UCLH.ย  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.ย  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 wasnโ€™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, canโ€™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.ย  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 didnโ€™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.ย  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.ย  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 wouldnโ€™t get cold as I couldnโ€™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.ย  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.ย  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.ย  But still why does it take so long!

Finally just after 6pm we set off home in a taxi, I couldnโ€™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.

Hospital Dinners!

Well today has been a bit of a day with me being admitted into UCLH Hospital!

Not what I expected when I set off this morning for my Oncology Outpatients Appointment. I was expecting a review and an update on all the scans I had had and to find out about the Vision Trial.

I did find out about the Vision Trial and while I was accepted onto the trial, I had the right levels of PSMA, I had been randomised into the Control Group, not what I wanted to hear.

Being in the control group means I would get normal ‘Standard of Care’, which I would get treatment that is already in use and not something cutting edge.

For me this would mean Steroids, Dexamethasone most likely.

I know I am no expert on this but my gut feeling was that the Vision trial and Lutetium 177 was the way forward for me.

But for now there were other things to worry about.

As soon as we started talking about my leg pain and Polymyalgia then the concern was raised that it might be caused by Spinal Cord Compression, this is where cancer in the spine presses on the nerves running through the spine causes pain and weakness.

So the immediate thing to do was to get a MRI of the spine so it could be better reviewed.

I was also surprised to hear that thry were going to admit me into the hospital do they could keep a close eye on me.

I would also be immobilised and would have to stay flat on my back!

This meant I was lifted by 6 people from bed to bed and moved around the hospital by porters.

This was all a very big shock as I had travelled to the hospital and had been walking around. I also had expected to go home.

What was I going to wear!

There was some confusion……

I was moved to the 10th floor where the cancer ward is and moved onto another bed, where I spent the next few hours.

It turns out I should have been taken straight to Imaging for the MRI.

So it was about 7.30 when I finally went in for my MRI having been lifted another 2 times!In the meantime I had my first hospital dinner which was too bad ๐Ÿ˜.

The MRI was 45 minutes of discomfort and loud noises, I was glad when it was over.

Barbara had been with me all through the day and had got me a small hospital survival kit.

I was sad when it was time for her to go and look forward to seeing her tomorrow.

Since returning to the ward I have been hooked up to a drip and given some Dexamethasone and some pain killers.

I lie here now in my hospital bed listening to the noises of the ward.

We I sleep I don’t know, the Dexamethasone might have other ideas and my mind is spinning but I need to give it a try.

Apologies for any typos, it’s been a bit of a day!

Back again

Seems like it was only yesterday since I was here, well it was, I was here for a blood test.

So now waiting with slight apprehension as to what that blood test may reveal.

Two weeks ago my PSA was 481 up from 398 three weeks before that.

I am also awaiting the results of the CT Scan I had on the 12th. What would that reveal?

And I am hoping that I will to hear about the vision trial and whether I can get on it and what future treatment may look like.

So an important appointment today.

We have a slightly later appointment today, 10am although it is nearly 1030 already!

And then it was 11am before we finally saw a doctor, today we saw Professor Gert Attard.

He started by talking about the Vision Trial (I will talk more about the trial in a later post), and gave me the information sheet and consent form to take away and read, which is great news, he said I should come back in two weeks, complete the consent form and then I would have a PSMA PET done to confirm I was eligible for the trial.

All I have to do know is to keep my fingers crossed that I get onto the active arm of the trial and not the control group.

He also talked about another trial and getting consent done for that so I can be tested for it, the trial name escapes me at this time but is a study looking at PARP Inhibitors which is linked to an abnormality in cancer cells. I need to understand this trial more and will try and write a little more about it as I understand it.

So overall that is all good news.

My PSA has also stayed fairly steady and is now at 498 up from 481 two weeks ago, so a minor increase and hopefully an indication that the big rise in PSA is steadying out.

Fingers crossed.

He also talked about the CT Scan that I had on the 12th and said that the tumours on my lymph nodes around my pelvis was about 30% larger, which is a bit worrying! Hopefully with a new trial on the horizon I will have plenty of scans and they will keep an eye on these tumours.

I do wonder if the Cabazitaxel Chemotherapy or the Prednisolone steroid I was on did something that triggered the rise in my PSA, however I suspect we will never know, I just hope it stays steady now.

We had a brief chat about the pain I suffered last week and how I managed it and I told him that I had taken some cannabis oil which seemed to stop the pain straight away. Initially I think he was surprised and then interested in my response to it.

I do think more research needs to be done around cannabis oil and it’s benefits in pain relief/management but it won’t be funded by ‘big pharma’ that is for sure.

So for me it’s back in 2 weeks to complete the Vision Trail paperwork and have blood tests done and then the PSMA PET should follow quickly after that and then it should be all go for the first cycle of treatment although I cannot seeing that being for a month or so, maybe longer.

Overall I feel more optimistic than I have over the last few weeks and really hope that I get onto the active arm of the trial.

Please keep your fingers crossed for me.