An early start this morning which saw us being picked up at 6.15 am.
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.
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 🤞.
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!
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.
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.
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.
I have had my third Radium 223 treatment, almost 2 weeks ago at the time of writing.
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.
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.
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
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.
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.
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.
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. 👍😁
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.
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.
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!
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.
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”.
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.
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.
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!!
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.