PCA supporter shares her story

One of our supporters shares her story, in her own words, anonymously after she sadly lost her husband to pancreatic cancer. For the purposes of anonymity, names and places have been altered.

My husband was always capable, fit and able to overcome most problems he encountered – he was the very opposite of a whimp. He was a Master Mariner (with an Extra Master’s ticket – i.e. top qualification in the shipping world; and who had also held a private pilot’s licence as we lived in Kenya for many years and he flew to un-get-at-able spots for work purposes).

His symptoms started in 2008 with “gastric attacks/acid reflux” which he – and I am afraid, I too, dismissed.  The following year (2009) he had three really bad bouts which left him housebound.

At the end of August 2010 he had another attack and woke up shivering and in great pain – I rushed him to the surgery where a doctor recommended I take him straight to hospital for an assessment.  Admitted to a ward he spent the next MONTH (September) being assessed, going bright yellow, and although he had “a blockage” which prevented the gastroscopies they attempted from seeing anything – we were never told what it might be .

I feared a tumour (and imagine my husband did too) and finally at the end September we were told, in a cold and uncaring fashion, that he had a tumour which happened to be Pancreatic Cancer which was incurable but they could offer him palliative care which would include a stent and chemo. After they took my husband for the fitting of his stent I asked the consultant how long he might have. “Huh” he said in an offhand and  detached manner, “it’s usually three months but he’s strong – about five months I’d say.”

So ended life as I knew it.  What he may or may not have said to my husband, I dare not imagine.

We decided this thing was not going to beat us. We did everything we were told and tried to carry on as if it wasn’t happening – with pancreatic cancer that is pretty impossible. But we gave it a go for the eight months he managed to hang on in there.

The “palliative care” was a disgrace: after our original Registrar (working under a consultant) at the hospital, they had seen us a couple of times, he was then transferred to a hospital in the South and from them on there was NO CONTINUITY at ALL. My husband was in and out of hospitals for chemo and for when his temperature soared and he had to be on antibiotics.  Then when he started doing “Sulphur Burps” 24/7 for days on end, (something common with pancreatic cancer patients I now know) not one doctor at the hospital knew why – or how to stop it “just take Gaviscon” until finally, a young doctor on duty in the chemo section agreed that YES, It IS related to his cancer.

I then searched the internet to find something to help, printed off my findings (there was a by-pass op that could be performed) got them to the consultants at a different hospital and he had  a by-pass.  First though, he had to be pumped out to rid his body of the huge build up of old blood, fluids etc… This was painful, unpleasant and horrible and he was often kept waiting for hours to have this unpleasant procedure because, apparently, only one nurse there knew how to do it!!

After his – pass op, my husband was very, very poorly and as he was unable to feed himself I was asked to help. I discovered there were little bottles of liquid food that he could keep down and, from them on, that he how he survived.

As for “Care” – that was totally lacking in a particular hospital. At one point when he went for a scan at a different hospital, (I was not allowed into the scan room) he was made to lie flat and as soon as he did, all this stuff poured out of his mouth; the awful nurse i/c of the scanner was angry with him for “being sick”.  Did she know NOTHING about pancreatic cancer or the law of gravity???  He was sent away from the scan room with his tail between his legs. Had I not been so exhausted and terrified I would have verbally fought her. The particular group of nurses in that area seemed to work out of the hospice and two weeks before my husband died we were assigned one of those.  She came to the house, took all the necessary details and went off on a fortnight’s cruise (no stand-in nurse was arranged!).

And it seemed to be the Hospice which controlled the pain relief drugs too – the hospice was difficult/near impossible to contact evenings and weekends.

A couple of days later he got worse; days later, was confined to bed and it was increasingly difficult.  I called the surgery for help.  A nurse duly arrived but said she could not help me take him to the loo because of “Health and Safety” regulations about injuring her back.  We returned to hospital and two days later he died.

If only the NHS in the hospitals we visited had been as caring an organisation as the NHS one reads about in the newspapers. I felt his treatment was BARBARIC.

Two things would have helped :  (1) Continuity of Staff.  (2) Knowledge of the particular needs and symptoms (sulphur burps, unable to lie flat etc) of pancreatic cancer patients.

This story sharer has asked to remain anonymous.