Oncology Outpatients – Bad News

An early start this morning which saw us being picked up at 6.15 am.

An early start and it was just getting light

The reason for this was to get to the hospital early so I could get a blood test done so the results would be ready in time for my Outpatients appointment. As it was we arrived before the blood testing section opened and so was first in the queue 👍.

The blood test went pretty well and was soon done. The plebotomist kindly put my vials of blood in a priority bag and said the results should be in in about 30 minutes.

Blood test number 158 at UCLH

So with the blood test done we headed out for some breakfast and ended up in Pret.

We had a leisurely breakfast and even had a go at Wordle!

We then headed back to the hospital with the hope that we might be seen early 🤞.

Masks are still in fashion at UCLH!

And we didn’t have to wait long to be seen. There were ominous signs as we were seeing the lead oncologist and two nurses were in attendance!

And it was to be bad news!

We were told that the Radium 223 treatment was not working as there was an increase in bone mets as well as new mets on lymph nodes. The cancer was spreading and existing mets and lesions were growing. My PSA was 1,970, a fairly large increase of around 400 since the last reading.

Worse still there are no other treatment options available or trials that I would be eligible for!

What all this means is that the cancer will now be allowed to take its course and it is just a matter of how much time I have left? This is probably measured in months rather than years.

We are of course devastated and still reeling from the news.

In the short term I will be transfered back to the oncology department at Princess Alexandra Hospital (PAH). I will also be referred back to the palliative care team who will help look after me over the coming months and they will deal with any health issues that crop up.

So as I sit writing this I am anxiously waiting for some contact from PAH so I can start to come under their care. I am conscious that I still have problems with my haemoglobin and need to have regular blood tests to monitor it.

In the mean time we are busy making plans and high on the agenda is a cruise down the Danube River however we will only book it closer to the time depending on my health at the time. We also have a short trip to Norfolk coming up over Easter which will be nice and a good change of scenery.

And who knows what else we may get up to, it is not in my nature to be down or depressed so watch this space!

Back in Hospital

Well it would seem that I am in a bitter cycle of infection, hospital, home and then infection.

So am I back in hospital having been admitted on Friday afternoon. Numerous tests have been done and last night I had a blood transfusion which has helped.

This is my 4th visit since October.

The infections are debilitating in themselves with a great deal of pain and fatigue.

Once they start treating I do begin to feel better but wish there was a permanent solution and I cannot stay on antibiotics.

Fingers crossed I can break this cycle.

A quick visit to A & E

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 have lost count as to how many cannula I have had over the years!

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.

Who knows what tomorrow will bring!

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. 👍😁

Three Years On

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
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • 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
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • 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.

Back in A&E

Woke this morning with a bit of a rash which slowly got worse as the day progressed.

About 7 pm I called the UCLH Chemo Helpline who asked for photo’s.

After a wait they recommended that I go to A&E.

Got there about 10pm.

Before long I had seen the triage nurse who was a little short with us.

Then it was off for a blood test and to have a canula fitted.

Come about 11pm a nurse came over an gave me an injection of antihistamine. Didn’t get the name as he had a strong accent.

Now (11.40 pm)waiting to see what happens next.

At about half past midnight I was seen by a doctor who gave me another check over and told me my bloods were ok. She would get an ECG done and prescribed a course of antihistamine for me to take.

We finally left A&E at about 1.15 am and had a really easy drive home as all the sensible people were already in bed 😉.

A Monday in A&E

Having gone to bed with a minor headache and feeling slightly hot I awoke this morning with a raging headache and a temperature of 39°.

And generally feeling pretty awful.

I phoned the UCLH helpline who advised me to go to my local A&E.

I phoned mum to ask if she could look after Teddy ( the dog) and my brother in law kindly offered to take me to Harlow A&E.

On arrival at A&E we were met by Barbara who had come from work, she helped me check in.

After about 30 minutes Barbara went to see when I might be seen and I was escalated to the Red List.

Within 10 minutes I was being seen.

My observations were done and some notes taken.

I was then moved into a room were thankfully there was a bed I could lie on as I was feeling pretty rough by now.

I was then hooked up to an IV and given 2 types of antibiotics and some IV Paracetamol.

I also had a chest xray and a ECG.

I started to feel a bit better, not sure what it was, maybe the paracetamol?

Once the IV meds had finished I was then given 1000ml of saline solution to boost my fluids.

I was then seen by a Doctor who did a few more checks and then he went off to check my xray.

Before long he was back and said everything looked fine apart from one ‘infection’ marker which a little high.

He had also spoken to the onclogy team who said this sounded like it was a reaction to the Trial Drugs I have taken as part of Neptunes.

He also asked me about my broken ribs which he had seen on the xray, but that was from a fall about 20 years ago!

We then had a chat about how I was feeling, I was feeling much better by this time. So we agreed I would go home once the saline completed.

So after about 5 hours in A&E we headed home, I felt better but still felt a bit groggy and done in.

I have to say that all the staff I met today were very good, kind and friendly. Nothing but praise for them all.