Oncology Outpatients – Bad News

An early start this morning which saw us being picked up at 6.15 am.

An early start and it was just getting light

The reason for this was to get to the hospital early so I could get a blood test done so the results would be ready in time for my Outpatients appointment. As it was we arrived before the blood testing section opened and so was first in the queue 👍.

The blood test went pretty well and was soon done. The plebotomist kindly put my vials of blood in a priority bag and said the results should be in in about 30 minutes.

Blood test number 158 at UCLH

So with the blood test done we headed out for some breakfast and ended up in Pret.

We had a leisurely breakfast and even had a go at Wordle!

We then headed back to the hospital with the hope that we might be seen early 🤞.

Masks are still in fashion at UCLH!

And we didn’t have to wait long to be seen. There were ominous signs as we were seeing the lead oncologist and two nurses were in attendance!

And it was to be bad news!

We were told that the Radium 223 treatment was not working as there was an increase in bone mets as well as new mets on lymph nodes. The cancer was spreading and existing mets and lesions were growing. My PSA was 1,970, a fairly large increase of around 400 since the last reading.

Worse still there are no other treatment options available or trials that I would be eligible for!

What all this means is that the cancer will now be allowed to take its course and it is just a matter of how much time I have left? This is probably measured in months rather than years.

We are of course devastated and still reeling from the news.

In the short term I will be transfered back to the oncology department at Princess Alexandra Hospital (PAH). I will also be referred back to the palliative care team who will help look after me over the coming months and they will deal with any health issues that crop up.

So as I sit writing this I am anxiously waiting for some contact from PAH so I can start to come under their care. I am conscious that I still have problems with my haemoglobin and need to have regular blood tests to monitor it.

In the mean time we are busy making plans and high on the agenda is a cruise down the Danube River however we will only book it closer to the time depending on my health at the time. We also have a short trip to Norfolk coming up over Easter which will be nice and a good change of scenery.

And who knows what else we may get up to, it is not in my nature to be down or depressed so watch this space!

The Enkel Arms

Ok, I can hear you saying what has a pub got to do with Prostate Cancer?

Well… the blog is called Prostatecancerandbeyond.me and this fits very much into the beyond bit.  And The Enkel Arms is a place I sometimes pass on my way back from UCLH.

But my connection to The Enkel Arms goes back much further than recent trips to UCLH!

When I was a lad and still at school I used to work on a Fish Stall selling all kinds of fresh fish and the stall was outside The Enkel Arms on a Saturday and Sunday.

This was just before I joined the Army at sixteen although I worked on the stall for four or five years.  So I probably started there when I was 11 or 12 and we are talking 1971/2 until 1976.

Labour laws were very different then and many stalls had kids working on them to help out and get some extra pocket money.  In fact I had been working on stalls and in markets from a much younger age.  Where we lived in Walthamstow had a mile long market and so there were loads of jobs for kids to do and somehow I ended up on the Fish Stall.

The owner or stall holder/fishmonger was a guy called Bob and he was really a great guy.  He taught me a good work ethic that set me up well for later life.  He also paid well and provided other treats like McDonald’s for lunch, this was the seventies and McDonald’s was new to the UK so very much a treat.

And of course there was always some fish to take home although my mother never knew what to do with things like squid and octopus and some of the exotic fish that I brought home!

Bob once said that he would set me up with my own fish stall once I was older but I was was intent on joining the army and so went down that path. I do sometimes wonder if I would have made a good fishmonger 🤔.

And so that is my connection to The Enkel Arms and seeing it again has brought back so many memories of those days that I had forgotten about.

Blood Transfusion Number 4

Today I am back on a hospital bed, not where I expected to be and hopefully just for the day🤞.

Today I was supposed to be having my regular Outpatients appointment and yesterday had a CT Scan and blood test in preparation for the appointment.

On the way home I got a call from the hospital informing me that my haemoglobin level was very low and that I needed to urgently have a blood transfusion.

And so instead of an Outpatients appointment I am having 2 units of blood which takes about 4 hours.

This is my 4th blood transfusion in recent months in an effort to try and get my haemoglobin up and under control.

My haemoglobin level was 62 yesterday, the lowest it has ever been. The normal range for adults is between 130 and 170.

You can see from the graph that my haemoglobin has been running on the low side for a while!

Graph showing my haemoglobin level.

Haemoglobin carries oxygen around the body and so I have been getting out of breath very quickly and luckily for me that is the only real side effect I have experienced.

I have been feeling well since I was last in hospital and so was a little surprised to get a call yesterday.

Tidsy we arrived at the Macmillan Cancer Centre on time and made our way to the 4th floor where the Transfusion would happen where I was directed to a side room which would be mine for the next few hours.

I could see the Telecom Tower from my room.

A nurse came along and settled me in and fitted a cannula, the first attempt in the right elbow found her struggling to get into the vein so a second attempt was made into my left forearm which was successful 😀.

The cannula was put into my forearm and you can see bruises from previous blood tests.

It was then just a case of waiting for the first unit of blood and then we could get things going.

The first unit of blood.

Because of my previous history with transfusions, I had a bad reaction with the first and was hospitalised, they tend to set the transfusion to go slower over 2 hours to help prevent any reactions. I also think I was in a side room because of this and because my haemoglobin level was quite low.

Once the blood was hooked up there wasn’t much to do and so I slept for a while.

This is a pump used for transfusions and other medicines. I hate them as they alarm once complete and then it takes ages for someone to come along and silence them. And if it is not my pump then it is someone else’s!🤯

The lunch time menu came around and I ordered Thai Green Chicken.

There is not much that can be done while having a transfusion and so I read a little and dosed a little.

Before long lunch was served and while it didnt look great it tasted fantastic. I really enjoyed it .

Lunch was very very tasty 😋 👌

Before long I was hooked up to the second unit of blood, it was slightly larger than the first but was still set for 2 hours to complete.

At this time the nurse said that I might get a third unit of blood because my levels were so low. And she would check with the doctor.

I hate to complain about the NHS but it does seem that when changes are planned or thought about that things go a little awry! Perhaps it is the involvement of doctors who are so busy that they say they will call back and never do?

Anyway this created a nearly 2 hour delay while I waited to see if I was going to have a third unit or not, which is very frustrating and makes for a long day.

But I hate to moan especially as I feel lucky to be getting the treatment I am and that the NHS is so busy with everything going on.

Once the doctor made the decision that I would have just the 2 units things happened quickly, I was disconnected from the empty blood unit and my cannula was removed.

And I was able to head home.

By the time we got home we had been out for more than 13 hours and while I had spent much of the day lying down and dozing I felt shattered. I think that any hospital visit takes it out of you, there is emotional stress, lots of prodding and poking with needles and a big reminder of how fragile you are.

I looked forward to a quiet night and going to bed early!

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 👍😁.

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

I just hope everything goes to plan 🤞.

Prostap Number 19

Every 12 weeks I have a hormone injection called Prostap or Zoladex as it is also know.

The injection is given into the stomach and is a slow release medication that suppresses the production of testosterone. Testosterone can feed Prostate Cancer and so the less testosterone the better.

I have been having this injection for years now, ever since being diagnosed and this is my 19th injection.

The injection is done at the GPs surgery by a specialist nurse, I think because of the size of the needle. The injection is given in alternative sides of my stomach and this time around it went into the right side.

The big downside of Prostap is the side effects. Hot flushes and cold sweats are common and there is a battle against weight gain to name but a few. Sometimes the hot flushes can be quite severe and come from nowhere and at other times they are much milder.

Today’s trip to the surgery went well and I didn’t have to wait too long to be seen. I was in and out in 5 minutes.

Only 12 weeks until the next one!

4 Weeks Since Discharge ðŸ’ª

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 ❤️.

Update 4 March

Today I am back at UCLH and sat in the Nuclear Medicine department.

Cannula and a smile

Two procedures to be done today.

The first is a Whole Body Bone Scan, I have just been injected with a radioactive trace which will take about 2 hours to work its way around my body and then it’s 30 minutes in the scanner.

The scan will show my Oncology team the state of my cancer.

The second procedure is an actual cancer treatment called Radium 223 which is injected via a cannula and only takes around 10 minutes.

The Radium attacks any cancer cells it may find in my bones.
So a very radioactive day today.

Overall I am feeling much better than I have over recent months and it’s been nearly 3 weeks since I was last discharged from hospital 🏥.

Let’s hope that continues.

All the stays in hospital and the problems I went in with have taken a toll but I am slowly building myself back up and am getting on with things.

I hope the photo captures how well I feel.

Back in Hospital

Well it would seem that I am in a bitter cycle of infection, hospital, home and then infection.

So am I back in hospital having been admitted on Friday afternoon. Numerous tests have been done and last night I had a blood transfusion which has helped.

This is my 4th visit since October.

The infections are debilitating in themselves with a great deal of pain and fatigue.

Once they start treating I do begin to feel better but wish there was a permanent solution and I cannot stay on antibiotics.

Fingers crossed I can break this cycle.

First Blog of the Year 2022

Well here we are in 2022 and only 5 days into the New Year and I have already been to the hospital twice although not for anthing serious.

Yesterday was a visit to UCLH for a blood test prior to today’s visit for my Outpatients appointment.

The upshot of the appointment was that my PSA has stayed steady at 1,670 which is good. The downside was that my haemoglobin had dropped to 76 and so was classed as being low and would help explain while I was suffering from so much fatigue and tiredness.

Having had a few blood tests recently yesterday’s went into the tender part of my forearm, I was warned there might be some brusing!

So the plan is to give me a blood transfusion on Friday to bring my haemoglobin up and then a week later have the second Radium 223 treatment.

I am looking forward to the blood transfusion and really hope that it gives me a boost. Currently I can do very little and have to break tasks into small chunks of activity with rests between each chunk. I also look forward to being able to get out and about and just do normal things like the shopping or going for a coffee.

We made as much of Christmas and New Year as we could and I thank my family and friends for adapting the days so I could take part.

Since my last post I was admitted to hospital with another infection but only spent 3 days in that time as I believe we caught it earlier.

I also had another infection which showed up it a urine test and this time was prescribed antibiotics so we could treat the infection at home.

Overall it has been a rollercoaster of fatigue and tiredness with bouts of pain. I have been off my food and at times just the thought of eating makes me feel nauseous.

I am hoping that the blood transfusion will help me turn a corner and then we can just concentrate on treatment and fighting the cancer which to some extent has been neglected while the focus was on my general health.

I do apologise for the lack of writing at times but when I am feeling rough I feel less inclined to write.

I will try and do better in 2022 😉

I do hope that everyone had a Merry Christmas and I wish you all the best for 2022.

A quick visit to A & E

As I start writing this update I am sat in a chair in A & E where I have just received 2 types of antibiotics via a cannula.

I awoke yesterday feeling pretty unwell, I was tired and achy and felt feverish.

I spent most of the day on the sofa.

When I woke this morning I felt slightly better but felt that something was wrong and I needed further help. I am worried that I might have another infection and want to catch it early if I can.

After a long wait to get through to the GP Surgery I finally managed to get through and told them my problems. And while I was hoping for a home visit I was promised a call back from a doctor.

After a couple of hours the doctor called and we chatted through my concerns and symptoms. He agreed that an infection maybe highly lightly but it needed a blood test to confirm and that should be a ‘same day blood test’ and the best place to get that was in A&E!

And so we grabbed my hospital bag, just in case I ended up staying in. It has a t-shirt, underpants, bed socks a small wash kit. And some essentials like phone charger and my Kindle.

There is also a bottle of water and some protein bars to help keep my strength up!

We arrived at Princess Alexandra Hospital at around 5 pm. Barbara was there to help me check in but then we were told that it was patients only and she would have to wait outside. This is due to Covid restrictions and to protect the vulnerable people in A&E.

After about a 45 minute wait I was called forward and asked a load of questions and then a cannula was fitted.

I have lost count as to how many cannula I have had over the years!

I was then moved to a waiting area where other patients were having other infusions and treatments. I was to have two different antibiotics to start with, I think these are general antibiotics and something more specific would be given if they identify a particular infection.

The infusions were given separately and took about 20 minutes each.

Shortly after the infusion completed I was seen by a doctor who again asked more questions. And he did an initial assessment although he was still waiting on the results of the blood test.

I was returned to the waiting area and read from my Kindle for a while.

And then it was back to see the same doctor who gave me more of a physical examination.

More importantly he confirmed that my infection markers were raised and that I had an infection. In the short term, I was to have an ECG and a chest x-ray. I say short term but it was after midnight before I had the x-ray.

I was also to have some fluid via infusion to keep me hydrated.

It was starting to look like I would be admitted to the hospital so that the source of the infection could be found and treated.

I was also assessed by a doctor from the Medical Team, who again asked loads of questions and gave me a thorough examination. She also thought that I would be admitted.

And while I was hoping that I might have caught this earlier and it would be treatable by the GP or in A&E I think the hospital is the best place to be as they will do loads of tests and have laboratories on site who can turn around quick results.

So now I think the main thing I am waiting on is for a bed to become available, it could be a long wait!

I am going to finish this update here, I am still in A&E, in fact I am am now on a trolly bed about 10 metres from where I started writing the update.

I will be trying to catnap and hope I get a bed soon so I can settle down for the night.

Who knows what tomorrow will bring!