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 ๐Ÿ‘.

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 ๐Ÿคž.

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!

Blood Transfusion Number 4

Today I am back on a hospital bed, not where I expected to be and hopefully just for the day๐Ÿคž.

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 ๐Ÿ˜€.

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!๐Ÿคฏ

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 ๐Ÿ˜‹ ๐Ÿ‘Œ

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 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.

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 ๐Ÿฅ.

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.

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 ๐Ÿ˜‰

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

Radium 223 โ€“ Treatment 1

Well today was a big day as it feels like I have been waiting to start the new Radium treatment for ages!

What is Radium 223?

Radium 223 is a mildly radioactive form of the metal radium. Radium 223 can shrink areas of cancer cells that have spread to the bone. This reduces symptoms, such as pain, and helps you feel more comfortable.

How does Radium 223 work?

Radium targets bone cancer cells. This is because it is similar to calcium, which is also absorbed by bone cells. The cancer cells in the bone take up Radium 223 and it then releases radiation which travels a very short distance. 

This means that the cancer cells receive a high dose of radiation which can destroy them. And healthy cells receive only a low dose or no radiation.

We had a midday appointment so had plenty of time to get up to the UCLH.

We passed this little old stadium on the way!!

We arrived slightly early and so nipped to a coffee shop for a nice coffee and a cake and soon I was feeling good and ready for treatment.

We made our way up to the fifth floor and the Nuclear Medicine department and after checking in it didnโ€™t take long for my name to be called and we were taken into a room where the Radium 223 would be administered.

The procedure was to be done by a Doctor, a cannula would be fitted by a nurse and there was a scientist present to oversee safety.  There was also a registrar in attendance so a very serious procedure that is actually very simple in how it is administered.

Which is via a cannula and only takes a few moments once everything in place.

They do take great care to avoid any spillages or accidents as the clean up would need to be very carefully done and with great care.

We did notice that the staff were wearing colourful rings which are actually small radiation sensors and help monitor the amount of radiation that the nuclear medicine are exposed to.ย  They are sent off to a lab to monitored.

The dose administered had an activity level of (MBq) 6.27 and looked to be just a small syringeful of liquid of which every drop was used by drawing blood into the syringe and pumping it back into my arm.

And before I knew it I was putting my jacket on and we were heading home.

For the next week or so I have to be very careful when going to the toilet as effectively I would be urinating radioactive urine and so had been advised to sit whenever going to the toilet.  To be very careful with any spillages and thoroughly wash after going to the toilet.

I should also drink plenty of fluids to remain hydrated.

The main side effects are diarrhoea and sickness as well as some fatigue and initially some bone pain.  We will have to see what might happen.  Fingers crossed all will go well and I will not get any side effects.

Right now, I am pleased to be home and catching my breath, I have high hopes for this treatment and hope to avoid any serious side effects!

In terms of hospital appointments, I have a fairly quiet few weeks ahead with an outpatientโ€™s appointment booked for the 15th December where I will also have blood tests and so on.  So apart from knowing how I feel I am not going to have any results until then.

Oncology Outpatients 17 November 2021

Itโ€™s always amazing how quickly appointments come round, no sooner am I discharged than I was booked in for my next Outpatients appointment.  Which is of course a good thing, and I am very pleased that they are being proactive.

And this was an amazing visit if for no reason than we were in and out within an hour and that included a blood test.

Today I was seeing the Lead Consultant which is sometimes good and sometimes bad as it normally falls to him to deliver the tougher news.

But as he called my name, I could almost sense him smiling behind the mask he was wearing, and I think this was down to him seeing me in good shape.

He did comment that on Monday when they held the weekly MDT (a meeting where they review patients) (Multi-Disciplinary Team) that that they were worried about how I had been in hospital and whether I would be fit for treatment.

But he was pleased to see me walking around and moving well and I think he could tell I was well on the way to rebuilding my strength.

And so, the tone of the appointment changed to something much more positive and after a quick examination he was pleased to announce that I could go ahead with the Radium 223 treatment and that they would get it booked in and aim for Friday 26th November.

Barbara and I were both smiling and so relieved to hear the good news.

This was all subject to the blood test I was about to have and so we headed down for the test and was pleased to see that there was only five people in the queue.

Because of the effects of the Radium 223 the measurements that are important have changed.

Radium 223 works on the bone Mets and so is likely to cause a spike in PSA and so that becomes a less important measurement of success.

What does become important is the blood work which of course comes from the bone marrow and again the haemoglobin is at the forefront followed by Alkaline Phosphatase and then as always, my general health and response to treatment is looked at to see how I am doing.

And it is these things I will be monitoring myself and be keeping a keen eye on.

On the haemoglobin front it has actually gone up since I was last tested in hospital which is fantastic news.  Not by much but from 112 to 117 in the week or so since I have discharged.

This might be down to two factors, the first that the blood transfusion was kicking in and secondly, I had been eating food which is good for your blood work.  I had been on a menu of red meat, liver and bacon, oily fish and so on, every little helps.

On the downside my PSA was 1,129 which has gone up from around 860 while I was in hospital.  This is hardly surprising as I am not really having any treatment at this time aside from Hormone Therapy.

At the time of writing I donโ€™t have an up to date reading for Alkaline Phosphatase but at the start on November it was at 251 which is high and has been running high for sometime as per the graph and a few years ago was in the 700 to 800 range so it has come down alot.

So I am feeling pretty upbeat, I have had some good feedback about Radium 223 and am hopefull it will work well. As with all these treatments it does come with side effects, including diarrhoea, sickness and some bone pain and I will be doing all I can to mitigate those by going into this as fit as I can and will of course be staying as positive as I can.

The Last Few Months

Hello all, for those that are regular followers of the blog I firstly wanted to say a big thank you for the ongoing support, it really does help.

I also realise that things may have got a little confusing as to what had gone on and happened and so the point of this post is to try and summarise that into something a little simpler to follow.

The short story is

  • July โ€“ August                      Chemotherapy
  • August โ€“ September       Immune system compromised
  • August September          Pickup up infection
  • October                               Hospitalisation 1
  • November                          Hospitalisation 2
  • November Home

And in a bit more detailโ€ฆโ€ฆ

At the end of July I started on Carboplatin Chemotherapy, the plan was for six cycles but I only managed three cycles as the chemo was not having a positive effect on the cancer as shown in my rising PSA and in scans.   The third and final treatment being at the end of August.

What the chemotherapy did do was to weaken and compromise my immune system and it effected my ability to produce things in my blood like Haemoglobin as well as red blood cells and the like.

This meant that I was vulnerable to infection and other things.

It would seem that sometime in September I did get an infection which was later identified as a Urinary Tract Infection based on Ecoli.

By the end of September, I was struggling to walk and was in a fair amount of pain.  At this time I was not aware of the infection and thought it more of a flare up of the cancer or bones mets.

I started to take stronger medication including oral morphine which helped although it probably masked a few issues as well and also made me think it was more bone related than an infection.

By 12th October we were phoning the GP and a doctor was dispatched to visit, we also contacted UCLH and described the symptoms and they both diagnosed an infection, I was prescribed antibiotics.

By the 14th I was in even more pain and taking more medication and so I concluded it was time to go to A&E and see if they could sort me out.

And so, I went to Princess Alexandraโ€™s Hospital in Harlow.  After 24 hours in A&E I was admitted to a ward and given my own room.  On the plus side I was subjected to a whole range of tests and thoroughly checked out.  An infection was identified, and I start to receive intravenous antibiotics which are much better than oral as they get to work much quicker.

I was also treated for other minor symptoms like iron deficiency in my blood and so on.

An overview of my blood work, the Flags show where it is either higher or lower than the standard range.

Lots of fluid and other things were given.

I was discharged on the 19th October and was glad to be home.

In hindsight I had been discharged a little too early as I still had the infection, I was feeling much better but the infection was still there and this became evident after a few days when I started to feel pain again and was starting to struggle.

It got to the stage where I couldnโ€™t wash or dress myself!

On top of this I was scheduled for a number of visits to UCLH to prepare for Radium 223 treatment.

The big problem I had was that my haemoglobin was too low to have treatment and so a blood transfusion was scheduled for 3rd November.

My Haemoglobin over the last few months which was low even before starting the chemo but you can see it rising following the transfusions.

I duly turned up for the transfusion, feeling rough but I thought I could handle it.

I was scheduled for two units of blood which would be infused over 4 hours.

During the transfusion they regularly take your temperature and blood pressure, and it was picked up that my temperature was rising, first through 37 degrees and then into 38 degrees.

I was also starting to feel feverish with nausea.

And no sooner had they given me anti sickness tablets and I was vomiting them back up again, and a screen was drawn around me to save some of my dignity and to protect other patients.

By now I was feeling pretty rough and by all accounts I had lost the colour in my face and looked unwell.

At this it was decided that I would be admitted to UCLH as an emergency admission.  They have several cancer wards at UCLH which deal with cancer related emergencies such as mine and they also deal with more rigorous cancer treatments and problems.

And so, this was the start of nine days as an inpatient, there are separate posts which go into some of the detail of what happened each day for the days that I was able to write.

On the plus side I had a room with a view!

And once more it was identified that I had an infection, I think the same infection and that it had never been fully treated while I was at PAH and that I was discharged from there too early.

This time I was thinking that itโ€™s better to spend more time in hospital and get properly sorted than to rush home.

And home is where I am now trying to make sense of everything that has happened and also recover from the effects of a hospital stay and build my strength back up again.

I would like to point out that I have no reall complaints about how I was looked after and do not wish to appear critical, it is easy for me in hindsight to say things that may appear critical but I am really pleased in how I was looked after by all the NHS staff and doctors.

Later today I have a physio coming round to visit which marks the start of my return to getting back my strength and normality. ๐Ÿ‘๐Ÿ˜

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.