"My father died on Sunday the 8th of May - part 1"

About: Epsom and St Helier University Hospitals NHS Trust

My father was diagnosed with stage 4 (i.e. terminal) mesothelioma in June 2015.

He was a robust, healthy (apart from this) 78 year old man. He lived with my

mother in a semi-rural area in North-East Wales, and kept very fit.

Up to a few weeks before he was diagnosed, he did exhibit any symptoms.

He had a course of chemo, and their quite oncologist

dissuaded my parents from either radiotherapy or surgery. So, when the

chemo finished in December, there was no further treatment offered.

We refused to accept the "inevitable" and found out information

about a phase 2 trial for a promising drug called keytruda from

Merck that was being handled by the Royal Marsden hospital.

Only about 15 people in the UK were accepted for the trial, and we

had some hope. We weren't naive about his prospects, but the choices

were certain death, or a chance of more life - obviously we took the latter.

While staying at the Maelor hospital near Wrexham to attempt some pleural

drainage,he acquired a chest infection. No confirmation of this, but

antibiotics prescribed by default. Fair enough.

On Tuesday 3rd of May, I drove my parents down from North Wales to my

brother's house in south-east London. Dad was frail but still fighting,

and quite lucid. Appetite frequently goes with last-stage cancer cases,

and we were getting as many fortified drinks and soft foods down him as possible.

He didn't want to die, was in hope for the drug, and worked as hard as he could

with us to take nourishment into his system.

2 days later, my family turned up at the Royal Marsden for the drug trial

assessment. My father had walked most of the way (a distance of nearly 100

yards !) from the main entrance to the assessment room, but a nurse thought

he looked very ill, and immediately got him into an ambulance to the

St Helier A & E department.

I arrived from Leicestershire a few hours later, and on speaking to the doctor

asked about intravenous nutrition, specically something to boost his

blood albumin level. In their words, "it wouldn't do much good, and

the benefits would be only short-term" and "let's see how he is in 24 hours".

I firmly believe that the last quoted remark was a snap judgement from

an over-worked doctor (without access to all the context of my Dad's situation)

and was an expectation that my Dad wouldn't survive the next 24 hours.

But he did survive it. We were moved from a ward in the Acute Care Unit

to a room there, and continued to try to feed Dad as much as possible with

fortified drinks and soft foods. He took some of them in, but appetite

wasn't there really. I asked again about assisted feeding methods, no

joy again. Late on Friday we were moved to a room in Ward B1 - nice room,

tv, en-suite, etc - but nobody told us that this was a palliative care

ward, i.e. a place where you go to die. We only found this out when a nurse

mentioned it. (Continued ...)

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