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.

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!

6th Night Ahead

I am now approaching my 6th night in hospital and the days are starting to blur one into another.

In many ways it had been a bit of a frustrating day as I have been told I would have part of the blood transfusion today and a CT scan and as I write it is 5.45 pm and neither have happened!

On the blood transfusion someone has been round and taken blood for crossmatching so I would hope the transfusion goes ahead.

And as an inpatient they can come and collect you at any time for scans and xrays.

I will probably get hooked up for the transfusion and they will turn up for the scan!

I don’t know what hours they work in the different departments but it was fairly quiet over the weekend but I suppose both could still happen?

I am in a bay of four people so people come and go and you get to hear their stories; some very similar to my own and others very different.

I have a great view of London from the window but haven’t been able to make much of it while I am confined to bed. What I can see is the dawn getting brighter and more recently the dark of the evening coming on and the tops of tower blocks lighting up.

Here is my window and you can just about make out what I think is Euston Tower.

So I will post this rather dull update and if I do get either the blood transfusion or CT scan I will let you know.

Sorry if this sounds a bit down but it is more boredom more than anything. I am so looking forward to getting our of bed and being able to move around a bit more!

Back in Hospital Again

Once again I am sorry for being quiet but the title gives the reason away.

On Wednesday I was at the Macmillan Cancer Center for a blood transfusion as my red blood cell production is down and in particular the haemoglobin.

As you may recall I had recently been in hospital with a Urinary Tract Infection and I think this had not been fully cured as I was starting to feel very rough and had to use a wheel chair.

And so back to Wednesday, after the first unit of blood had been infused I developed a high temperature and was vomiting so the transfusion was stopped and I was admitted to the hospital where I remain as I write.

The view from my window, my wife took this when she visited.

I am overall feeling much better thanks to lots of steroids, antibiotics and fluids etc.

The infection I have has been identified and I am of course to defeat the bacteria causing the infection.

I am likely to be in hospital until Tuesday but nothing is for sure at the moment. I would sooner stay in longer and go home fully cured than risk another flare up in a couple of weeks time.

I will try and fill in the blanks and expand the detail once I am home and better able to focus the brain.

Many thanks to those that have messaged ๐Ÿ‘ โค

Oncology Outpatients 1st Sept and Chemo 3rd Sept

A busy couple of days last week with a trip to London and ULCH for my Oncology Outpatients appointment on the Wednesday and then this was followed by Chemotherapy on the Friday.

The outpatients appointment went well although I had to wait about an hour to be seen and as I had a relatively early appointment, 09.40, I though I may have been seen more promptly. The appointment didn’t last more than 10 minutes and was really just a quick review to see how I had been since my last chemo on the 13th of August.

For which the answer was I had been OK, the severe attacks of pain I had suffered after round 1 had not returned and apart from being tired I had been OK.

We did discuss having another PSMA PET Scan which will help tell whether the Carboplatin is working or not and I have asked for this to be after the 20th of September as we are going away until then.

But given my rise in PSA I am thinking that the Carboplatin is not working. More about that later.

So the other two things I had to do while I was at the hospital was to have a Covid PCR Swab test prior to having treatment and also a blood test.

And while these two things are done in the same place there are two queues, more time sitting and waiting!

I was called forward fairly quickly for the covid test but had to wait about an hour for the blood test.

And with all these things done I headed home.

On Thursday I got the results on the blood test which for the most part was OK, some areas like my red cell count were low but only slightly and nothing to worry about really.

My Alkaline phosphatase levels were a little high at 274 for which the standard range is 40 to 129. Alkaline phosphatase gives an indication of cancer activity in the bones so a little worrying that it is climbing.

Of more concern though is my rising PSA which has now gone up to 646 from 396 so a rise of 250 in 3 weeks!

So while we are not near the highs of 2019 the PSA is climbing and two rounds of Carboplatin don’t seem to be holding it down. So the PSMA PET Scan will be the big test and show what is going on.

On the plus side I feel well apart from the side effects of the chemo, I am still walking and enjoying life and getting out and doing things. My appetite is good and I enjoy the odd beer now and then.

So now it is really a waiting game to see what the scan shows and what treatment may follow and at this time that is most likely going to be Radium 223.

So Friday came and Barbara and I headed to London, she is still not allowed in while I have treatment but it is comforting having her with me for support and we also manage to have a quick lunch in Pret which was a treat for both of us.

As well as having Chemotherapy I was also to have my Zoledronic Acid infusion which is a few weeks over due, they have been focussing on the chemo and let the Zoledronic Acid slip a little.

The Zoledronic Acid is to strengthen my bones so I am pleased to be back on it as it will help keep me healthy.

Overall the treatment went well and once the cannula is in it is pretty straight forward, I have some pre meds, anti sickness, Domperidone and 8mg of Dexamethasone steroid. The downside of the steroid is that it makes me a little hyper and stops me from sleeping, they also cause some constipation and so I have that to look forward to!!

And before long we were heading home.
Lot’s to think about but we have a short holiday coming up to North Wales and so will get a chance to have a break and change of scenary and also recharge the batteries for any coming challenges.

A rough day and chemo update 16 August 21

After feeling pretty good following on from my Outpatients Appointment I took a turn for the worse on Thursday evening. We had been out for dinner which was fun and I was feeling good but during the journey back to the hotel I started feeling rough, with the onset of what could best be described as flu like symptoms.

I had pain in my back, chest and thighs and a cracking headache was developing. This pain was all in or around areas where I know I have bone metastases or ‘mets’ and so could well be caused by the chemo having a go at the cancer cells there. I also felt very fatigued and just wanted to go to bed, which I did.

We were staying in a very nice hotel but it is always more comfortable to be at home and close to the things that you know. So when I awoke in the morning we took the decision to head home once I was feeling a bit better to travel and therein lay once of the challenges.

I needed some stronger meds which I had at home but didn’t feel well enough to travel home and so I contacted my GP to see if they could prescribe to a pharmacy local to where we were staying and they said they could.

Several phone calls followed and I think that really the doctor wanted me to be seen as I was in a bit of a state but I didn’t want to be seen locally and potentially end up in A&E away from home. If I was going to A&E I would sooner be closer to home.

But in the end I managed to convince them to send the prescription to a locally pharmacy and was soon taking some oral morphine which didn’t take long to kick in.

I have to say a big shout out to my sister and brother in law who we were on holiday with, they were amazing and went to the pharmacy and waited while the prescription was sorted and then helped us pack. My sister in law then drove our car home while I travelled in the back of theirs. So a big thank you to them.

I also heard great reviews for the local pharmacy in Southwold who went above and beyond in getting the prescription sorted and even phoned my GP to chase things up. And so a big thank you to Reydon Pharmacy.

So I was feeling a little better and before long we were heading home. To be honest I spent most of the day in a bit of a daze, dozing in the back of the car, getting home and dozing on the sofa, you get the idea.

Well the oral morphine was helping which was good as I was due to have my next chemo the following day.

We thought it a good idea that Barbara comes with me and while she wouldn’t be allowed to sit with while I was having chemo she would be at hand if I needed help before or after.

We also decided that getting the train in London and then a taxi to the hospital would be the best way to go.

And fortunately all went to plan and the chemo went as expected. I was feeling better and more able to go through the procedure and soon I was done and we were heading home.

Another cannula

I did manage to get my latest PSA reading which has risen to 396 so up from 352 on 21st July. Add that to the increased mets shown on the scan and it does not make for good reading, so really hoping these second and third rounds of chemo are going to do the job.

And so now a few days later as I write I am wondering what the next few weeks will throw at me, I had thought that I had got away with the first round of chemo as I didn’t get any side effects until until the 3rd week, so who knows what might happen this time around.

With the chemo treatments being every 3 weeks they soon come around and I am already counting down until the next one!