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!
As I start writing this update I am sat in a chair in A & E where I have just received 2 types of antibiotics via a cannula.
I awoke yesterday feeling pretty unwell, I was tired and achy and felt feverish.
I spent most of the day on the sofa.
When I woke this morning I felt slightly better but felt that something was wrong and I needed further help. I am worried that I might have another infection and want to catch it early if I can.
After a long wait to get through to the GP Surgery I finally managed to get through and told them my problems. And while I was hoping for a home visit I was promised a call back from a doctor.
After a couple of hours the doctor called and we chatted through my concerns and symptoms. He agreed that an infection maybe highly lightly but it needed a blood test to confirm and that should be a ‘same day blood test’ and the best place to get that was in A&E!
And so we grabbed my hospital bag, just in case I ended up staying in. It has a t-shirt, underpants, bed socks a small wash kit. And some essentials like phone charger and my Kindle.
There is also a bottle of water and some protein bars to help keep my strength up!
We arrived at Princess Alexandra Hospital at around 5 pm. Barbara was there to help me check in but then we were told that it was patients only and she would have to wait outside. This is due to Covid restrictions and to protect the vulnerable people in A&E.
After about a 45 minute wait I was called forward and asked a load of questions and then a cannula was fitted.
I was then moved to a waiting area where other patients were having other infusions and treatments. I was to have two different antibiotics to start with, I think these are general antibiotics and something more specific would be given if they identify a particular infection.
The infusions were given separately and took about 20 minutes each.
Shortly after the infusion completed I was seen by a doctor who again asked more questions. And he did an initial assessment although he was still waiting on the results of the blood test.
I was returned to the waiting area and read from my Kindle for a while.
And then it was back to see the same doctor who gave me more of a physical examination.
More importantly he confirmed that my infection markers were raised and that I had an infection. In the short term, I was to have an ECG and a chest x-ray. I say short term but it was after midnight before I had the x-ray.
I was also to have some fluid via infusion to keep me hydrated.
It was starting to look like I would be admitted to the hospital so that the source of the infection could be found and treated.
I was also assessed by a doctor from the Medical Team, who again asked loads of questions and gave me a thorough examination. She also thought that I would be admitted.
And while I was hoping that I might have caught this earlier and it would be treatable by the GP or in A&E I think the hospital is the best place to be as they will do loads of tests and have laboratories on site who can turn around quick results.
So now I think the main thing I am waiting on is for a bed to become available, it could be a long wait!
I am going to finish this update here, I am still in A&E, in fact I am am now on a trolly bed about 10 metres from where I started writing the update.
I will be trying to catnap and hope I get a bed soon so I can settle down for the night.
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. 👍😁
I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.
The diagnosis I was initially given was.
Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9
Since then my PSA has been as low as 1.6 and as high as 1585.
In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example. Side effects have been tough at times and diverse, from minor to visits to A&E.
Hormone Therapy – Prostap Ongoing
Chemotherapy – Docetaxel
Radiotherapy – On Spine and Shoulder 3 times
Immunotherapy – Nivolumab and Ipilimumab
Chemotherapy – Cabazitaxel
Lutetium 177 – Current Treatment
Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.
I believe to rest to be more accurate.
Blood Test 42 at least
Bone Scan 10
CT Scan 7
Prostap Injection 10
PET Scan 1
And of course on top of this there have been the regular outpatients appointments and other trips to the hospital. At times I have been to the hospital everyday for a week and at other times just a monthly visit.
Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.
I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.
I am hopeful that the Lutetium is working as it should and I look forward to the future.