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.