Christine & Mal

Mal was a happy, generous hearted man who saw the good in everyone. A long standing technical editor who made sure our TV shows were fit to watch, he had an eye for detail.

He collected a vast music archive, most of which was obscure and from all sorts of era’s and genre’s. Playing guitar, listening to and collecting music was his passion. He was so full of life – a cliché I know.

Mal’s symptoms and diagnosis

In April 2017, Mal started to feel unwell with stomach pain, pale stools and dark urine. He developed jaundice, and was told to see his GP after an appointment at a walk-in centre.

The blood tests were rushed back and the doctor arranged for him to be admitted to our local hospital where he underwent a barrage of tests and scans. An endoscopic examination confirmed the diagnosis of pancreatic cancer. Mal was devastated and terrified.

He had a biliary stent fitted and his jaundice gradually faded. He was discharged and referred to a specialist hospital for further tests.

The cancer had stayed local, but it had started to wrap itself around a vein. He was borderline operable.

Chemotherapy

The chemotherapy Folfirinox was prescribed – he was fitted with a PICC line, and I was taught how to change and clean it. Mal was so positive, he felt sure that the chemo would shrink the cancer enough to be operable.

The treatment started in July. Within a week of starting treatment the anti-sickness steroids spiked his sugar levels. He was diagnosed with diabetes and began to inject himself with insulin twice a day.

He was very pale and suffered from neuropathy (tingling in his fingers and toes), to the extent that he had to wear gloves indoors. He went off certain foods, and it was hard to get him to eat anything.

Folfirinox did not shrink the tumour, and Mal was beside himself with fear.

I took him to an acupuncturist to help with the side effects of the subsequent prescription of GemCap chemotherapy, which shrunk the tumour slightly. He began GemCap treatment just before Christmas, the last infusion to be administered on our 10th wedding anniversary, 11th April 2018. Mal suffered with the usual tiredness and nausea, so we didn’t have much of an anniversary. By that time I had given up work to care for him.

Further treatment

By this time, we had sold our flat in Hampton, Middlesex and moved to a rental in Leatherhead. We needed the equity to be able to live, and also to be able to get away for the odd weekend away. There were mixed opinions about this from medics, but I knew we needed to make some memories. I don’t regret that one bit.

We had a break from treatment and then Mal was sent for a PET scan, an MRI and CT scans to check the cancer had not metastasised. We were relieved that it hadn’t and we were referred to the specialist hospital for him to commence chemoradiotherapy.

He contracted an infection immediately, so there was a decision to be made to have palliative radiotherapy over a period of six weeks. This was after a spell in hospital to try inserting a duodenal stent because of a blockage.

Managing his symptoms

Mal experienced a lot of pain and nausea during and after the treatment. He couldn’t eat, so he was taking liquid supplements. Sadly, we were forced to move house again because of our landlord, but we found a large country house to live in. He stayed with relatives whilst I oversaw the move.

We started seeing a community cancer nurse who helped Mal manage his pain, but during the whole of December he was beginning to develop ascites, was in pain and in and out of hospital. They discovered varices (enlarged, swollen veins) in his oesophagus, and varices bands were inserted.

Various blood transfusions were administered, and finally, after a miserable Christmas in hospital, he was discharged to the local hospice. The consultants told us he was near the end of his life.

End of life care

Mal wanted to come home, so they quickly arranged for a hospital bed and the necessary equipment to aid his mobility.

They didn’t expect him to last the week. He decided he was going to defy medical science, and he saw a medical herbalist to help with his symptoms. We changed his diet to help with his diabetes, and he ate well for the first time in months. He became quite chipper and regularly held court from his bed or his chair.

Sixteen days later, on January 26th 2019, I knew that would be his last day. He had ‘left’ his body, but he was in no pain at all. He died peacefully just before 8 pm, after which his carers appeared, his and their timing was impeccable.

Had Mal had an early test to avail himself of, I believe he would have been operable. I would like to find out why healthy people are suffering from this disease.

August 2019