My Worry Now

My main worry now after my visit to A&E yesterday is that when I next see Mark Linch, my Oncologist, is that he might want to stop me having further medication as part of the Neptunes Trial.

Whereas my own thoughts on the matter are that I would sooner be having some unpleasant times but keep on the trial as that gives me a better outcome in the long term.

Fingers crossed for when I see him in two weeks.

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.

Treatment No 2

Many of my recent posts start with something like ‘well here I am on the train again’.

Which is where I find myself once more. The journey to UCLH in London has become a big part of the day taking several hours there and back.

And of course not forgetting we are in the middle of a heatwave, although it is quite pleasant this morning with the aircon whirling away.

I am suffering a bit this morning, my back is giving me more pain than usual. Not sure why, I don’t think I over did it yesterday.

One of the things I want to ask about today is to get a better understanding of the diagnostic of my back and what ‘multiple sclerotic bone metastases‘ really means. Is that something that immunotherapy will treat or will I always have it now?

Things are going well, we arrived at UCLH just after 8am, checked in and went for a blood test.

By the time that was done my name was on the screen and we made our way to the clinic reception.

I was quickly seen by Danny our trial nurse who did my observations, my blood pressure was very good 119/71. Both Barbara and Danny commented on how good it was.

I am obviously relaxed this morning 😁.

My weight was taken but we won’t go into that 😉.

And I need to provide a urine sample but we won’t go into that either😉.

1015am and we finally got to see Dr Linch. He asked about my health and gave me a quick check over.

We discussed the meaning of ‘multiple sclerotic bone metastases‘ and he explained that with prostate cancer the affected area of the bone increases growth and it maybe this that is causing me some back pain.

He said that the immunotherapy should deal with this as well although it would be hard to quantify as healing bone would look the same in a bone scan.

I showed him a couple of spots I have on my shoulder and neck and he thought I should go and see my GP and get a dermatology appointment to get them looked at. He said it would be ok to have them treated while on the trial.

He said I should be at less risk of skin cancer as the immunotherapy should work on that as well.

He also gave me a prescription for Co-codamol to provide some extra pain relief for my back.

Then as something new we had to see a pharmacy nurse.

More waiting 🤔.

I need my bacon sandwich!

And then a funny thing happened.

A nurse came out and quietly called out a name which sounded very much like mine. We followed her into a room where a slightly surreal conversation followed!

The doctor introduced himself as a breast surgeon and asked if we had been to the clinic before.

All the time he was looking at Barbara.

I answered.

He looked confused!

We did a name check.

He was expecting a Lisa ####field.

We laughed, we were in the wrong room and we made a hasty exit.

Back to waiting for the pharmacy nurse.

Once we had seen the pharmacy nurse we headed out for a very late breakfast and a walk to Regents Park.

Then it was back to the treament floor and time to do another jigsaw while we wait.

Then 4.20pm and I am finally connected up to the drip and the first drug is starting to go in. Thats the Nivolumab.

Once the treatment actually started everything went smoothly.

I did fall asleep at one point💤💤💤.

Same as last time, I had the Nivolumab then 30 minutes rest and then the Ipilimumab.

Soon it was time to head home, I was shattered, we had been at the hospital for 10 hours and by time we got home we had been out for over 12 hours.

Still it’s all worth it.

3 weeks now until treatment 3.

Back Again

Back on the train once more heading to London. Off to UCLH but for a Urology appointment in Westmoreland St.

Arrived in plenty of time for my appointment despite opting to walk from Warren Street to help improve my step count.

I saw Dr Nauth-Miser who started by giving me the results from my recent ultrasound and flow test.

He said I had no problems with my flow and that my prostate was not blocking the flow.

He did comment that my prostate was small, about 16mg I think he said.

We then chatted about options and concluded that staying on medication was the way forward although I will stop taking the Tamsulosin and Finesteride and just take Solifinicin. Which I will take in the morning.

I have a follow up appointment in 3 months to review how it is going.

He did mention some other options if the solifinicin does not work.

I think it will come down to me to decide how big an issue it is getting up in the night to pee.

It is an issue as I seldom get a full nights sleep and sometimes feel very tired but could I live with it?

A new word – Sclerotic

Today I learnt a new word.


As in the sentence “His recent CT of the chest, abdomen and pelvis shows multiple sclerotic bone metastases and no soft tissue disease”.

This is sentence from a recent consultation update sent to my GP.

This is the first time I have seen this word used and I am not clear what it means.

So its time for a quick Google search and where better to go than Wikipedia!

“In medicine, sclerosis (also spelled sclerosus in the names of a few disorders; from Greek σκληρός “hard”) is the stiffening of a structure, usually caused by a replacement of the normal organ-specific tissue with connective tissue. The structure may be said to have undergone sclerotic changes or display sclerotic lesions, which refers to the process of sclerosis.”

Thanks to Wikipedia for this and it is about as close I have got for now.

So the big question is, what does this mean?

I knew I had cancer in my spine and suffer from back ache and I guess this is down to the Sclerotic Bone Metastases or a hardening of bone material due to the effects of cancer?

Does anyone out there know?

I will, of course be asking my oncologist when I am at the hospital in a couple of weeks and would hope to learn more.

And the second question is……..

What can be done about it?


Follow up check

Don’t ask what time I was up today!

Back at UCLH again today, got an early appointment 0910 in the hope that there will be less waiting around, only time will tell.

Arrived at UCLH just after 8 and booked in and then got a blood test done.

I then went for a sneaky bacon sandwich in the main building.

By the time I returned to the Macmillan Cancer Centre my name was on the screen and I booked in at the second reception.

All going to plan 😁.

And by 0917 I am in a consultation room and in pops Dr Linch.

A quick chat and a checkover and all is ok.

He said that it is likely that it will be 2 or 3 months before I see any changes.

He also said that side effects may happen at any time, not so much because of the cumulative effect of the drugs but because it is training the immune system so some changes may happen.

I did learn that 20 men have now been screen with 5 being IMS positive.

And that the trial is starting to be done by other hospitals.

So I am back in 2 weeks for the next treatment, bloodtest and outpatients appointment.

Got a week off from Neptunes next week, Happy Days 😎.

Treatment Number 1

Today is the big day and I am feeling a little nervous. Partly because I hoping the treatment will really be a miracle and also because I had a bad reaction to the first two chemotherapy treatment and I worried the same would happen again.

It was going to be a busy day as I needed to see the Trial Nurse and then the Oncologist before I could be signed off for the treatment. I was due to see the oncologist at 11.10 and then booked in for treatment at 12.30.

We arrived at the Macmillan Cancer Centre in a timely fashion and made our way upstairs and headed to see Emily the Trial Nurse. She sent me off to get some blood samples and I took my own tubes with me.

That done it was time to see the Oncologist or should have been!!

We waited 2 hours to see him before being called in where I was examined and given the all clear for the treatment. I was told to come back in a week for a checkup so I booked an appointment for an earlier time in the hope that the waiting time would be less.

On the downside I learnt that my PSA was now 10.5.

We made our way up to the second floor where the treatment room is and checked in. We were directed to the nurse in charge of the section where I would be looked after.

She said there would be about a two hour wait while the pharmacy makes up the drugs so we headed out for some lunch.

We were back after an hour and decided.

Transperineal Biopsy

What can I say, this was not fun and could possibly be the most painful 30 minutes of my life.

I need to blank those 30 minutes out as I may need to have another one later in the trial.

My day started early and I was at UCLH Westmoreland Street for just after 8 pm.

Shortly after arrival I had another canula hanging out of my left hand and had completed a long questionnaire.

The MRI was a doddle compared with what was to follow.

If you have never had a MRI its a noisy affair that takes about 20 minutes.

Once the MRI was complete I made my way up to the 2nd floor where the minor surgery unit was based.

Another questionnaire and then I was given my outfit for the next few hours.

I didn’t mind the socks or surgical stockings but the nhs issue pants were another matter!

A bit of waiting around then I was seen by the surgeon who would be carrying out the procedure. He asked more questions and gave me a brief of what was to follow.

My smile was slowly fading!

Before long I was escorted down to the theatre and asked to lie on the bed. The leg stirrups gave me a shiver as I realised my diginity was soon going to be gone.

To make it worse the team was quite large consisting of 3 men and 3 women. They all introduced themselves but I only remember Frank and Glenn who were very cheerful and seemed to be enjoying the moment unlike myself: i could feel my blood pressure rising!

It was then time for my legs to go into the stirrups and the last shreds of diginty were cut away as my nhs issue pants were cut off.

I tried to focus on the beat of the heart rate monitor and recall what I had learnt about Mindfulness although I wasn’t sure I wanted to be too much in the moment!

An antibiotic injection in my arm followed and then everyone moved for a grandstand view of where the action was to take place.

I focused on the ceiling.

The first of two local anaesthetic injections made me gasp and instinctively pull away, which is difficult when strapped into the stirrups. But I could feel my thigh muscles tense up.

The ultrasound probe was then inserted so the doctor could make sure he was taking the samples from the rights place as identified on the MRI earlier.

The doctor said one more injection, this was to be an internal anaesthetic. Again I gasped as the needle went in, I am sure I could feel it going deeper this time and the anaesthetic being pushed into my Prostate.

The doctor then said I would hear a clicking sound as he took the samples and demonstrated the click, he meant good but to me this was like some form of mental torture.

I am not really sure how the samples are taken but it felt like a needle was inserted and inside the needle was a small grab that could take the sample.

This procedure was completed 8 times and by the end of it I was panting and could feel my heart beating. It was so painful and i wished that Barbara was there to hold my hand.

Relief came as they started to clean me up and took my legs from the stirrups, at least i could relax my legs.

As I was wheeled into recovery I was still panting; with relief that it was over!

Despite what I had been through I was itching to get going, I just wanted to get home.

The criteria for discharge was that I had to pass urine. Fortunately I needed to go pretty quick and before long I was heading home hoping that I would never have to go through that again.

First treatment tomorrow.

Double Blood

Back in UCLH for blood tests today.

I am having something called group and save where they take bloods twice.

I have just had one blood test and now waiting on the second.

Second test was a little trickier and the nurse ended up taking the blood from my hand.

I am definately getting more sensitive to needles and jumping around a bit!

It’s a long way to come for 2 blood tests although i did visit the treatment floor which was useful.

It’s going to be a busy week, I have 3 visits to UCLH this week.

Blood today.

MRI and Biopsy tomorrow.

And then the big day on Wednesday, my first treatment.