Nat & Alvin

Where do I start? From as far back as early 2020 and throughout that year, my husband Alvin began to feel tired on a regular basis and was sick a few times after meals.

At the time, his symptoms were very similar to type 2 diabetes. However, as it was the height of the pandemic, getting to see his GP was difficult and Alv put it off (he didn’t like going to the doctors at the best of times).

His symptoms would come and go

On a few occasions, when playing with our young son, he felt discomfort and sensitivity around his stomach area – however, these symptoms would come and go. Our son is autistic and can be very boisterous in play. Our son also liked to cuddle up to his dad in the evenings before bedtime. It was during these times that Alv began to complain about a pain in his side, particularly when our son was leaning on him.

I remember Christmas 2020, Alv’s stomach was bloated and had ballooned quite a bit – he was struggling to fasten his trousers and put it down to over-indulgence and weight gain as it was the Christmas period. However, his appetite had decreased and the pain in his back and side, including the sensitivity around his stomach area, were becoming more frequent – something wasn’t right.

In January 2021, the pain was becoming unbearable with Alv being unable to sleep. He was taking co-codamol regularly in order to help to ease the pain and make it more manageable, but it wasn’t working. He even experienced a mild infection for which he needed a course of antibiotics, however, the initial course didn’t work. He required a further two courses of the antibiotics to clear the infection – his body was clearly having trouble fighting infections.

He decided to go for tests

He called his GP and during a phone consultation, Alv requested a scan and blood tests. His GP asked where the pain was located to which Alv said he felt it was ‘under his ribs’ on his left side. He also mentioned the back pain.

The GP felt this could be a cardiac problem and booked Alv in for a phone appointment, not a face to face, with the cardiologist. The call with the cardiologist quickly confirmed that it was not a cardiac issue.

In total, Alv had 3 blood tests over 6 weeks from January to the end of February. The last blood test was lost and he was rushed through for a final blood test on the 1st March 2021.

The GP sent him to hospital

His GP called at 5pm that day and told Alvin to go straight to our local A&E and to demand an MRI. His GP also asked if Alv was jaundiced – at this time, he wasn’t. Our thought was, why had the GP asked this? Was there something wrong with Alv’s liver?

Alv was admitted to the local hospital. Whilst in, he had the MRI and the next day on the 2nd March he was asked if he had a family as a ‘mass had been found’ on his liver.

I was devastated when we got the diagnosis of pancreatic cancer, but Alvin stayed strong

On the 4th March 2021, Alv and I went to see the consultant. Even before we went into the room, Alv turned to me and said, ‘don’t cry.’ He knew I would and, deep down, like me, he knew that it was going to be bad news.

I remember everything and where everyone was sat in the room; I can’t forget how ominous everything felt. We were told he had possible metastatic pancreatic cancer at stage 4 and there was a mass at the base of his stomach and liver. The cancer was described as aggressive. Biopsies needed to be done to determine the primary of the cancer, however, they were 99% sure that it was pancreatic cancer.

Everything just stopped, I was devastated. Alv was so strong saying, ‘it is what it is.’ We asked for treatment options and the possibility of the cancer shrinking enough to improve life expectancy – we had no idea about pancreatic cancer or the symptoms, we were so naïve.

Alv was a joker and always put others’ needs above his own and tried to make people feel good. He told me when he got back to the ward after he was diagnosed and all the nurses went round his bed feeling sorry for him, he turned it into the ‘Alvin Show’ and made them all laugh – he didn’t want anyone feeling sorry for him.

His health deteriorated quickly

The biopsies confirmed the diagnosis on the 19th March. Alv’s first appointment at the specialist centre was 31st March 2021. He was booked in for a drain on his stomach some weeks later.

Alv seemed strong and fit at the time, but he soon deteriorated over April. He was in and out of hospital with breathing problems, his weight plummeted, but he tried to fight on and kept his sense of humour.

On the exterior, he was strong, but I saw the panic attacks. He said one night, ‘you don’t know what is going on up here Nat’ as he pointed to his head. He never wanted to see me cry as it would break him. I promised not to cry in front of him and I never did.

Alv didn’t have the drain on his stomach until the 3rd week of April when, after an appointment at the specialist centre they decided to keep him in. His SATs (the oxygen levels in his blood) were low. He came out on the 26th April, so positive and jovial. He said, ‘I think I can beat this Nat.’ He couldn’t have been more wrong.

They told us there was nothing more they could do

In the early hours of Sunday the 1st May, Alv was rushed into the local hospital one last time. I was called later that day to be told, ‘there was nothing more they could do.’ He was being treated for a chest infection, but it was delaying the inevitable and the consultant told me that Alv had ‘made peace with it.’

My whole world collapsed. I rushed in to see him and told all his family the devastating news. Alv had been placed on a Covid ward ‘just in case it was Covid.’ This was ludicrous! It was obvious it was his cancer. As a result, I could not go into the room he was in. I could only stand at the door with our son. Alv looked at me and said, ‘I never wanted this for you Nat.’ Again, I would not allow myself to cry as I did not want to upset him further. I had to stay strong for us both and our son.

His last week was a blur

Alv was eventually moved to another ward. The last week was a blur and so surreal. Alv was in so much pain and the medication made him delirious. The last time I saw him, he said that he just wanted to sleep. All treatment was stopped and they made him as comfortable as possible.

Alv passed away in the early hours of Friday 7th May. I was destroyed. I was unable to hold Alv’s hand as he took his last breath as our son needed me due to his Autism. He was so confused – where was his daddy and why had his mum disappeared in the morning? Our son has no concept of death. Being ill and dying is such an abstract concept to the autistic mind. I firmly believe he still thinks his dad is in the hospital as that is the last place he saw him.

I returned home after seeing Alv in the hospital and went into auto-pilot, sorting our son out for school (I had to keep his routine as normal as possible). Later that day I suffered a seizure. I can only think that this happened due to the shock of how quickly it happened, holding everything in and being unable to fully process it all. I’ve since had two more seizures and been diagnosed with epilepsy.

I focus on doing some good

Alv wanted me to make sure our son was cared and provided for as best as possible.

I made a social story and memories book for him, and we visit Alv’s grave each week. I tell him, ‘We’re going to see daddy.’ I have no idea what our son’s understanding is, as he cannot tell me. This breaks my heart. Instead, I just have to carry on, trying to keep things as normal as possible, but still preserve the memory of my soulmate, my best friend. I still cannot accept what happened. I had counselling after he passed away, but it was too soon and had no impact.

I undertook Challenge 24 in November 2021 and raised over £800 in memory of Alv. I plan to do this every year. It helps me to focus and feel like I’m doing some good for others who may be affected by this awful cancer.

August 2022