Palace of Care – Smiley

Photo by Jacob Vizek on Unsplash

I had finally completed my examinations and could start my specialist training. I had been drawn to both Medical Oncology and Palliative Medicine from a relatively young age and I could try working in each speciality for six months before deciding which one I wanted to pursue in the long-term.

One morning during my six months working in Medical Oncology I was in clinic with an Oncologist who I considered to be my mentor. Standard practice was for me to see the patient first, then present the case to my mentor, who would then come and see the patient.

A big friendly smile in the form of a slim 26 year old man walked in with his pregnant partner of similar age. They were accompanied by his cousin who was in his 40s. Smiley’s story was a sad one and had begun eight weeks prior to his clinic appointment. Life was good, he had a steady income from a job he enjoyed. In the weekends he loved playing rugby in the local team. He and his partner had been together for five years and were going to take the next step. Baby was on the way, and was due in five months’ time. Everything was going well until it wasn’t.

He had always been fit and healthy throughout his life, but in recent weeks something hadn’t felt right. He really had to push himself harder during the rugby games. He had trouble keeping up with the rest of the team, their opponents seemed stronger, and were able to break through his tackle attempts. After the game he found it took him longer to recover than usual. He didn’t think too much of it, tried going to sleep earlier, but still would start yawning mid-morning.

It wasn’t until the pain started that he became worried, intense pain would occur just after eating. Over the next weeks, the pain worsened and then he started having nausea, and then vomiting. He ended up in hospital and the doctors were surprised when his x-ray showed that he had a bowel obstruction, a blockage of the bowel. A scan confirmed the obstruction, and it appeared to be caused by a bowel cancer. Rare in a man his age, but not unheard of. The section of bowel that had been affected by cancer was removed in surgery and the remaining parts were joined together. He had recovered from the surgery well, and was keen to get back to playing rugby again. He had been through further investigations, which had shown that the cancer had spread to his liver. 26 years old with metastatic bowel cancer to liver, unable to work and with a baby on the way, a situation that would’ve wiped the smile off most people’s faces, but not Smiley’s.

The Oncologist joined me and we talked about the treatment plan, that Smiley would be having in the weeks to come. He would need to have palliative chemotherapy, meaning cure not possible, aiming to control the cancer and prevent further spread. We also talked about other treatment options that might improve his chances of success, but that these were only available in the private sector and would be expensive. It felt cruel to give him some extra hope, only to dash it straight away when we had to talk about the costs involved. There was no way that this young family could afford that sort of money involved. He talked to his partner and cousin and they opted for the standard treatment. This would be done as an outpatient.

I caught up with Smiley three months later during one of his chemotherapy treatments. He had tolerated his treatments well, and was still beaming his big friendly smile. His cap covered his lost hair, but otherwise he looked much the same. He had two more cycles to go and was feeling good. He said that the team had told him that he might be able to start playing rugby again. I wished him well, and I was glad that he was doing well with his treatments. We exchanged big smiles as I left.

I completed my six month Medical Oncology position and then started working in my first Palliative Care position. A speciality that I had been looking forward to working in for some years. I had been working in the hospital palliative care team for a number of months when we received the referral for Smiley. I had wondered how he had been, and went to see him.

The big friendly smile was there but his cheek bones jutted out. He had always been slim, but had lost too much muscle mass. He reminded me of many of the palliative care patients I had cared for in the past. A jarring realization that he looked like patients who had died. His partner and their four month old baby were with him. Named in memory of Smiley, who they knew would not be there to watch his son grow up.

They talked about Smiley having gone back to play rugby after he had finished his chemotherapy. That he had a few good months when things were almost normal. Their son arrived and sleep left their household, so when he started feeling tired he didn’t think too much about it. Then the nausea and vomiting returned, which he remembered all too well. His cancer had spread further into his abdomen, which had led to another bowel blockage. I changed his medications to try to relieve his symptoms but he continued to vomit.

The Oncology team arranged for Smiley to be reviewed by the surgical team to see if there were any surgical options. The surgeon asked to meet with Smiley and anyone he wanted to join the conversation. Twenty members of his family came for the meeting. Smiley’s mother, aunts, uncles, cousins, his partner, her parents. It was important that his family were there for him as in their culture decision making is a shared process, they would all decide what the plan would be.

The surgeon talked to them directly in simple English and discussed diverting the stomach contents, away from the site of blockage, and into a tube which would drain into a collection bag. This would stop his vomiting and would allow him to eat and drink whatever he wanted. The family discussed with Smiley what he wanted , and they were all supportive of Smiley having the procedure.

This was the best example of collectivist decision making that I had seen. I’ve arranged many family meetings over the years in which people don’t even turn up let alone participate. Smiley had a strong team backing him to make his decision. He was not alone and would continue to have their ongoing support. The operation was successful and Smiley was able to be transferred to his local hospice for ongoing care with an aim for him to go home.

The next time I saw him would be in a human interest article in one of the national distributed women’s magazines. The story talked about his partner and son having spent the last weeks of his life in the local hospice. His big friendly smile still brightened the photos that captured his fading light.

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