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 – August                      Chemotherapy
  • August – September       Immune system compromised
  • August September          Pickup up infection
  • October                               Hospitalisation 1
  • November                          Hospitalisation 2
  • November Home

And in a bit more detail……

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 Alexandra’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 couldn’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 it’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. 👍😁

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!

Oncology Outpatients 11 August 2021

Back at UCLH today for my Outpatients appointment prior to having Chemotherapy on Friday. I am also going to have a blood test and a Covid Swab Test.

A very different journey today as we are away in Southwold. So about an hours drive to Ipswich train station followed but a 1.15 hour train ride into London and them 10 minutes on the tube.

But totally worth it as being on holiday gives me do many benefits and even the train journey was nice and relaxing.

I arrived at the hospital in good order and was soon called forward to the second waiting area and straight in to have my observations done.

My blood pressure was a little high and even after taking it three times I wasn’t able to bring it down by much.

I guess it could be high because of the travel to the hospital although I feel quite relaxed or it could be because I was poorly the other day?

And then before I knew it I was in with the doctor who did a review of how I had been. I told him about the side effects I suffered and he said this was fairly common and I should expect more!

He also went over the results of the PSMA PET Scan that I had on Friday. Which basically showed that more mets had developed since my last scan in May.

The next scan will be in around 8 weeks so let’s hope the chemo has an effect by then and has reduced them down a little 🤞.

If the chemo is not effective after 3 treatments then they will stop it as there would be no point in having the chemo. So fingers crossed 🤞.

After the appointment I then headed downstairs and had my covid Swab and blood test done. All quick and efficient.

Now I just need to wait for the result of the covid test before chemo on Friday, it should be clear as I am showing no symptoms.

Side effects – 9 August

Well what a day and it didn’t start well!

I awoke to a splitting headache, fatigue and tiredness, aching jaw and muscles. It was so bad I couldn’t get out of bed and infact I never got up until 1 pm in the afternoon and I was still feeling pretty rough.

And so I can only put this down to side effects from the Carboplatin Chemotherapy that I had on the 23rd of July. I was a little surprised to be getting side effects like this so long after treatment.

And even now as I write two days later I still don’t feel 100% and am still taking paracetamol and brufen to keep things under control.

And so now I wonder what this means for future treatments and I am due the next one in 2 days ?

The other thing about the 9th was that was the day we were heading to Southwold in Suffolk for a week’s break and so I was gutted to be feeling so under the weather.

Eventually I pulled myself together and felt well enough for the drive and so we headed off to Southwold.

And it must be true what they say about ‘sea air’ as we went for a walk along the beach and I felt a lot better. That sea air was a real tonic.

So we are making the most of our time on the coast although I will need to go to London twice, once for my Outpatients Appointment and then for treatment.

So watch this space 😉

It was overcast when we arrived.
Watching Teddy having fun on the beach always makes me smile

Oncology Outpatients and GFR Estimation 3 Sample Scan and other stuff – 21st July 2021

Well, it’s a full and busy day at the hospital today in preparation for starting chemotherapy on Friday.

Before having any treatment at UCLH you now need to have a Covid Swab Test done at the hospital which is understandable. What I don’t fully understand is why you don’t need the test for scans and other tests.  So, this is another reason to be here twice in a week.

On arrival I headed for the Blood Test department and booked in for my Covid Test, as it was early, I only waited a few minutes before I was called in for my blood test.  The phlebotomist had barely got the needle in my arm when the receptionist appeared and said I was in the wrong place as I was booked into something called “The Pod”.

Just arrived at the hospital.

So, without hesitation the Phlebotomist pulled out the needle and aborted taking my blood which seemed a bit strange as she had completed the painful and difficult part of the process and could have soon drawn my blood as well!!

I was thinking that today I will be a human pin cushion!!

I got myself sorted and made my way upstairs to “The Pod” which was a portacabin type building setup just outside the exit doors.  I was met by the nurse who was going to take my blood and do the covid swab.  He wasn’t quite sure why I was booked into the pod, but I suspect someone had made an error while booking me in and booked me into the wrong place.

Anyway, the covid test and the blood test then went smoothly although by now I had two plasters on my arms where the different needles had been put into my arm.

Then it was off for my outpatient’s appointment, I had my eye on the coffee stand and a Flat White but thought I should head up for the appointment.

The outpatient’s appointment went fairly smoothly and was just a simple check up to see how I was feeling and to get me to sign the consent form for chemotherapy.

Job done it was now time to head for the main building and the Nuclear Medicine department where I was going to have the GFR Estimation 3 Sample Scan.

The Main Building.

Once again, I eyed the coffee stand but I knew there was another one in the main building so off I went only to discover that the coffee stand in the main building was closed!!

It was too far to go back and so I headed up to Nuclear Medicine and checked in and while the procedure is called a scan it’s not.

What happens is that I was injected with a radioactive source and then had to wait 2 hours while the source circulates around my body and then they would take 3 blood samples each an hour apart.  The 3 different blood tests are then compared and from that comparison they can work out the strength of the chemotherapy I can have.

GFR stands for Glomerular Filtration Rate and is a test which measures Urine Albumin which is a protein in that is filtered by the kidneys and so by measuring the amount of Albumin over the 3 different blood tests they can work out how well my kidneys are working and how much chemo I can have.  The radioactive source enhances the test and they can see how fast the radioactive source is being processed by my kidneys.

I hope that makes sense?

This is the first time I have been through this process and so it must be something that they do when using Carboplatin the chemo I was going to have this time.

Back to being a human pin cushion!

What the process also meant was that I was to have 2 cannulas fitted, one to inject the radioactive source and the other to be used to take the three different blood samples.

Cannula One

I was fitted with one in my left hand and the radioactive source was administered and then the cannula was removed.

I was then told I could do what I wanted for the next 2 hours while we wait for the source to circulate and so I thought it was coffee time!  Only to be told no tea or coffee, I needed to be caffeine free!!

Ah well.

I checked the map and looked for a nearby park to sit in and read my book for an hour.  I found a park called Gordon Square which was nearby and found a shady spot to read. 

As an aside the book I am currently reading is “The Stand” by Stephen King, which is about a global pandemic, quite topical for a book first published in 1978!!

Time passed quickly and soon it was time to head back to the hospital another cannula and the first of my blood samples to be taken and then it was a case of waiting an hour for the next sample and so on.  I couldn’t go far and so read and dozed in between the samples being taken.

Finally, the third sample was taken, and it was time to head home, it felt like a long day and I was feeling a little tired, I also had four plasters where the different needles had been.  I call these sympathy plasters as they will get me a few minutes of sympathy when I get home!!

I would soon be home and be able to rest before returning on Friday.

Prostap Injection 19 April 2021

It’s always amazing how fast these Prostap Injections comes round, I have them every 12 weeks or 84 days and when I put them in the calendar it seems like they are a very long way away but before I know it I am phoning up the GP to book myself in for the next one!

And this one was no different, I called the GP about 2 weeks ago and got a slot booked in for today.

These days it is difficult to know whether to go early or not and also will I get a parking space or not.  It helps having the Blue Badge as I can park closer and in places I wouldn’t normally be able to.

Anyway I arrived just before my allotted time and pressed the buzzer, my name was taken and I could just about make out the clicking of the keyboard as my name was checked.  And then in my mind I could hear the steps of the receptionist making her way to the front door.

I was directed to the waiting room.

The Waiting Room was empty.

And after a few minutes I was in to see the nurse who was all set to go.

As I was wearing my spinal brace she asked if I would like to have the injection in my stomach while standing up which I opted to do, she had recorded that the last injection was in my right side and so this one was to be in the left side.

A sharp prick in my stomach and the injection was done and I was heading home.

12 weeks until the next one!!

Two days later and a very angry bruise has developed where the injection was done, I have had some minor bruising in the past but nothing like this!  You can see the circle where a small sticking plaster was put over the injection site.

Quite a bruise!

The good news is that it looks worse than it feels, there is no pain at all!

Blood Test Results

Well, it took a week but I finally got my blood test results back from the blood test I had on 8th March.  Not sure why it took so long but I suspect that it took time to be reviewed and processed at the GP’s Surgery.

And there is good news and bad news!

The bad news is that my PSA had gone up from 163 to 241, a rise of 78 when I was expecting it to go down following on from the Lutetium treatment.  I had really hoped that the Lutetium would knock it down as it had done in the past.

On the plus side, for the most part I feel fit and healthy.

I have forwarded the results onto UCLH and will see what they say on the 24th March when I have my next outpatients call.

The rest of my blood work looked ok to me apart from a few things which looked a little low or a little high in one case.

Serum calcium level 2.11 mmol/L [2.2 – 2.6]

Haemoglobin concentration 116 g/L [130.0 – 180.0]

Red blood cell count 4.29 10*12/L [4.5 – 5.5]

Or High

Serum cholesterol/HDL ratio 4.46 [< 4.0]

Now I don’t know what this means, but it looks like my blood count is down a little and that maybe due to the Lutetium.

I don’t know how this may affect the thinking around having another Lutetium Treatment in April but for myself I think it would be worth it but of course I need to listen to advice.

I have done a graph to help track my PSA, I think it tells an interesting story.  It shows that the Docetaxel that I had first of all really made a great impact as did the first set of Lutetium treatments that I had.

Everything else has been less effective although there is nothing that shows what effect the Hormone Therapy may or may not be having as I have been on that consistently since being first diagnosed.

I do wonder how long it took my PSA to reach 226 when I was first diagnosed and how that could have been caught earlier, I am sure it didn’t climb to 226 overnight and probably took a few years or more.

I do think that had I been tested early, perhaps when I was 50 then the disease may have been caught earlier and I would have been a much simpler case to treat.

But that is hindsight and for now I need to focus on treating the current problem and on staying fit and healthy.

Covid Vaccination No 1 – 5 Feb 21

It was my turn today for the Covid 19 Vaccination, I had previously been sent a text and had requested my slot by filling in an online form.

The vaccination was at Bishop’s Stortford Football Club, a place I am getting to know well after having my flu jab here and also bringing my mum for her vaccination.

Arriving at the Football Club

There was a queue to get in and someone checked our details. Then in the door and we were asked to clean our hands and of course we were wearing masks 😷.

The queue to get in, although long move quickly.

Another short queue and I was sent to booth number 3 and once again my details were checked along with more detailed questions and one around had I ever had a reaction to medication?

I answered that I had a reaction to chemotherapy and so a doctor was called, he was briefed and told me to wait for 15 mins after the injection to see if there was a reaction.

And then I was told that I would be having the AstraZeneca jab and I was asked which arm I would like it in.

I opted for my left arm and then the injection was done, quick and painlessly.

I made my way to the waiting area and watch as people moved in and out. Overall it looked like a pretty slick operation.

My 15 minutes were up and I headed out, there were less people waiting to go in, I guess they close for a lunch break?

They certainly deserve it.

Well done all.

Oncology Outpatients 3 Feb 2021

Ok so just had my Oncology Outpatients telephone call.

In this case it was not as good as face to face as we were discussing the PSMA PET Scan that I had on the 26th January and I felt that if I would have been in the hospital I would have been able to see the image and better relate to it. That said it is much safer do the appointment this way rather than going into the hospital.

I cannot really be sent an image of the scan as it is three dimensional and needs special software to be seen.

The scan did show an uptake in activity around the area’s that had previously shown that they had cancer in them, so parts of the spine, the hips, the pelvis, back of skull which is not great news but on the plus side it did not show any new sites or much activity in soft tissue, the lymph nodes and the like.

My PSA has risen to 182 up from 150 on the 4th January and so they feel that having the remaining 2 treatments of Lutetium is more urgent and are going to look at getting that booked in.

I also said that I was experiencing increased back pain and some pins and needles in my right big toe and so they are going to send me for a MRI Scan to look in more detail at that area in my spine.

The pins and needles in my toe might indicate some kind of Spinal Cord Compression which may be caused by the increased activity in my spine.

I have had pins and needles in my left big toe for some time but that is put down to the Vertebroplasty procedure causing a little pressure on the nerves and in many ways, I had grown used to it.

I have been experiencing a few more aches and pains over the last couple of weeks but not sure if that is because I have been walking a little more or whether I have over done it somewhere or is it the effects of the increased activity.  No one knows at this point.

So Now I have another telephone call booked for next Wednesday with hopefully a MRI before that.  Normally scan’s take longer to get booked in so I would be surprised if I have had it before next Wednesday!  But you never know 😉

I also asked again about the PSMA BiTE Therapy which was mentioned as a trial at my last appointment, and it was felt that it was better to do the Lutetium first and then look at trials.

So for now it is time to wait for the next scan and see what that shows.

Cancer certainly is a waiting game, always waiting for the next scan, the next appointment and so on.

Still it is better to be waiting 🙂