This is Rob's story, as told by his partner Andy.
I met Rob when I was 20. When we met it struck me how generous, kind, thoughtful and handsome he was. He had the most infectious laugh and we were together for over 15 years.
On the 7th July, I woke early to go to the gym. Rob didn’t usually wake at this time, but he was saying his stomach pain was back. He told me, “go to the gym, I’ll be fine.” I stopped at the door and said “I don’t think I’ll go.” He replied, “good, I don’t want to be alone.”
Rob’s stomach pain had happened before, and would last around 10 minutes and then go. Being in the height of COVID, we didn’t think to call the doctor. Who calls the doctor for a stomach cramp?
This time, it didn’t ease so I called 111. Rob didn’t want to be a nuisance or risk going to hospital, as he had asthma and COVID was scary. We were told Rob’s GP would call. Within 30 seconds, the GP said “gallbladder attack” and an ambulance was sent. Rob was taken to the hospital alone.
When I made it to hospital Rob was in agony, doubled over in pain and vomiting dark brown liquid. He was anxious to be in hospital, but I tried to reassure him within the single hour I was allowed to visit. Then, I had to leave him, alone and in pain.
The next day I booked my hour visit and was taken to a side room and told Rob was in intensive care. They said it was a precaution and would help them manage his pain. Once Rob had settled, I was allowed to see him. His pain was managed so he was more comfortable, which was a relief.
A doctor told me he had pancreatitis, caused by a gallstone becoming stuck. I’d never heard of it, but that evening I went online. I saw there was no cure or treatment, you just have to hope for the best. In severe cases, it can cause organ failure and lead to death. But that’s really severe cases, not Rob, I thought.
A few days on, Rob was taken to another ward for a week, but he was hot, uncomfortable and had no one-to-one nurses. He had so many scans, but we didn’t understand what was happening and we were scared. Rob was allowed one visit per day with a maximum of two people, so I would go most days and the other days his parents would see him. I felt selfish, but Rob was private and proud. I knew he wouldn’t like nurses or his parents keeping him clean.
Concern was growing as Rob was retaining a lot of fluid, was swollen and hard. His parents and I couldn’t understand why it couldn’t be drained. With limited visiting time it was hard to speak to a doctor.
Rob could text, but his messages started making less sense. I received a message saying, “Something’s not right. The nurses want to call you, but I want to be the one to tell you.” I immediately left for the hospital, thinking the worst and when I arrived, Rob was on the edge and wouldn’t speak in front of the nurses. I was allowed to wait until Rob had another scan. When he woke, he was irritated, angry and snappy with the nurses and I. He’d developed delirium, but I didn’t care. That day, I spent most of the day caring for him and listening to him. Later that day, Rob was taken back to ICU.
ICU visit were different. His parents and I could all go together. On one visit, we were told there is nothing that can be done for pancreatitis and that, “the end result is inevitable”. I remember hating the doctor for saying that. Every time we rang for an update, they’d say, “obviously Rob is very poorly”. Despite being told this, it never quite registered that Rob might not come home. No one told us the recovery rates.
Visits were stopped in our area due to COVID. One Sunday, I was called by a doctor who said, “we’re dealing with multiple organ failure.” I had read those words online, and they hit hard. This is severe acute pancreatitis.
We would video call and I was grateful for speaking to him when he was Rob, and not Rob with delirium. It was time for Rob to be put in an induced coma and on a ventilator, but he pleaded for more time. His parents and I reassured him and I told him we’d speak when he woke up. He replied “what if I don’t?”
While Rob was in an induced coma, we’d ask the nurse to put the phone by his ear so we could speak to him. He went for surgery to remove some fluid and we were allowed to see him before and after surgery. His stomach sized had reduced, so we clung onto that hope.
On the 2nd August I received a call. Rob was declining and we needed to be there with him. We got to the hospital and just held him, but I could tell he wasn’t giving in. He’d always been the strongest person I knew – the one I looked to. The doctor gave Rob another 24 hours to fight.
The following day, we returned to hospital. We were told there was no more they could do for Rob. It was time to remove Rob’s life support. We all held him so tightly. We let him know it was okay to stop fighting and how much an impact he’d had on our lives.
When Rob’s story is shared, it will have been three months since Rob passed. If you ask me how his mum, dad and I are doing, the honest answer is I don’t know. I can’t comprehend what happened and we have so many questions.
Andy, Angie and Nigel (Rob’s parents) have raised over £2,000 in his honour. Rob’s legacy will live on in the research, awareness and information that his family make possible. Thank you."One thing I'm sure of is, if Rob's story can help another family, it's worth sharing. I hope that one day, no other family has to hear 'there's nothing we can do but hope it heals itself." - Andy, Rob's partner.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis. We are dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition.
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