Facing My Mortality: A Patient's Thoughts

William Croninger
4 hours ago
8 min read

A reflective article by Jane I., LCSW

Assisted by a professional, William Croninger, OTR

[Jane's words]

Pain. It is now my constant companion. Sometimes I can keep it at bay, other times it is all-encompassing and controls my every waking moments. But let's step away from that for a few moments...

My friend suggested that I use my house as the centre point of this final journey:

I rather like that. The house is sited on a pleasant street, just West of the city of Portland in the US state of Maine. My family has been in this area since the late 1700s and this house is a very special place for me. My father built the home upon his return from service in the Pacific during WWII - and I was most likely conceived in one of these rooms. It contains so many memories for me... As a young girl, I remember walking by the kitchen at times and seeing my parents in an embrace. So many memories of growing up with sister and brother, the generations of deer and other small creatures, that always seemed to wander into the back yard in the morning.

There is another set of feet walking the path around the small pond now, enjoying the flowers that fill that space.

The new feet?

Well, that is the granddaughter that my son and his partner brought into this world, back in 2023. Unfortunately, I do not have the strength to lift my granddaughter onto my lap. She is approaching two years old now; she is becoming her own person, adopting her own characteristic demeanour, finding things that attract and excite her.

I've been a licensed clinical social worker (LCSW) for over 40 years. Initially in medical facilities and, up until my retirement - just before the onset of COVID - in public schools. After I retired, I would occasionally see clients in an office I shared with another LCSW, but more often online via Zoom, where I maintained a full load of clients. I took much pride in my ability to continue to be productive, learning to use new digital tools to work with my people.

The diagnosis - and mortality

In March of 2022, I began to notice unrelenting right abdominal pain after bending over to clean up a spill. Surgery followed in April and, when I woke, I had a diagnosis of appendiceal cancer. It's pretty rare and, similar to pancreatic cancer, tends not to be found until it has metastasised body-wide. Mine was no different.

What was my reaction? I made up my mind that it would not beat me; I would certainly beat it.

Following surgery, I just did not seem to be recovering as fast as I would have thought. Two weeks after surgery, a physiotherapist and occupational therapist called to set up my appointments.

At that time I could barely get out of bed, secondary to weakness and pain. Neither the physician nor the therapists had spoken with me regarding how I was doing and when I wanted to begin my therapies. Bottom line was that therapy ended prior to me being able to engage purposefully in them.

Sadly, neither the occupational or physical therapist asked me how this had affected me. They seemed more interested in talking about their own upcoming retirements.

I would ask you to think how losing your independence would affect you. Not just the actual physical changes in your ability to perform your activities, but in your concept of yourself...

At that time of the initial diagnosis, I was a proud 65-year-old woman, known for her vigour and engagement in the community. I was completely independent and enjoyed working in the garden, the book club and frequent outings with "the girls".

All that had changed; changed completely, following one trip to the doctors.

I changed physicians and underwent a six-month course of physical therapy. I learned a great amount about my condition, as well as new ways to move and live - whilst facing my mortality. At some point, I was told that there was "nothing else that could be done" for me, as the cancer had metastasised throughout my body. No build up - pretty much out of the proverbial 'blue'. It was estimated that I could live 6-12 months...

It was devastating. My immediate reaction was sheer terror. "What will I do?"

I could barely get out of bed, I couldn't cook for myself, couldn't do laundry, or even shop - due to my weakened immune system. The home I had lived in and loved for so many years now had places I could not get to (just no energy, or too much pain).

I was the person that helped others - professionally, but also cared for my mother, my father after his stroke and my husband, as cancer killed him. I had held their hands; figuratively and literally when they needed assistance.

With one conversation, I moved from being a caregiver to a seemingly helpless sick lady. I know, I kind of sound like I was whining, but the shock was overwhelming - particularly when I had initially been told I would recover and go on with my life.

It particularly bothers me when friends say things like "Oh, you will beat this."

I am NOT going to spend my final days and months battling cancer. In the end, cancer is going to kill me. I can accept that. The other thing some people tell me is: "You don't need to do anything; just stay in bed, pull the covers up and go to sleep."

At least initially, friends and former co-workers were helpful. "If you need anything, just call", they would say. But after decades as a social worker, it became quickly apparent how uncomfortable they were talking to someone with terminal cancer. Gradually, they have drifted away. Some of those people still remain, but the numbers continue to diminish...

A Professional's Thoughts

[William's words]

I found Jane's experience of contact with therapists deeply upsetting when we talked. None of the professionals seemed to have sat down and asked, "How are you feeling? What are you thinking?"

We are occupational therapists, we pride ourselves in 'treating the whole person'. This was certainly not done in Jane's case.

I once had an order on a new patient from a physician, who stated he wanted 'aggressive ADL training'. Reading over the medical record, it was pretty clear that her condition was terminal. I read the order to her and asked "Is this what you want to do?" Her answer was an emphatic 'NO!' "I know when I next leave this room it will likely be feet first on a gurney."

I asked "What do you want to do?"

Her reply was that she wanted someone to listen to her, as she told her life story. So we collaborated on what she would be willing to do and that I would then listen to that story. Everyone has a life story; nobody wants to just fade away into oblivion.

Ask what your client is feeling - not just physically, but in their 'soul'.

- What is important?

- What can they no longer do?

- What do they want to do? What will continue to give their life meaning?

- What is keeping them from that? And, as an Occupational Therapist, how can we help them continue in those vital areas, that will give life meaning?

I think most of us feel this; the panic of not knowing what to say. The need to say something 'helpful', or to raise a friend or patient's spirits. The fear of saying the 'wrong thing'.

Prior to becoming an occupational therapist, I worked in public schools here in the US, as a guidance counsellor. Over the years I spent in that setting, I gradually came to feel more comfortable 'opening closed doors', behind which dwelt fear and pain.

People often want to talk - and if you are frightened, imagine what the person in the hospital bed feels!

Watch your client. How do they seem to be feeling? What are their hands doing? Here, you are looking for covert signs of what may be distress, in facial expression and hand activity.

Try an open-ended question, like "Do you want to talk about what may lie ahead?" If the response is negative, drop it and move on. Realise that how the client feels is their own right. We aren't there to 'make them feel better'...

A young woman entered my office years back, with a particularly distressing situation at home. I was completely at a loss as to how to help her, as the issue was not going away regardless of what I did or said. In the end, we stood and I asked her if she would accept a hug. She did and then left. I felt terrible - like I had done nothing for her. Her situation was no better than when she walked in. A few hours later I returned to the office, to find a note on my desk:

"Mr C, I knew there was nothing you could do for my situation. Your listening and the hug was the perfect response. If you had tried to do anything else at the end, I'd have known you were just being phony."

Jane knows what lies ahead. I am not going to be able to diminish her pain, or even quell her fears of the unknown. But I can sure listen to her, as she processes the experience.

As Occupational Therapists, we cannot solve all our patient's issues.

But we can demonstrate humanity and that we value their words.

In that first interview, concentrate on how the disease process has affected your client:

- How does he/she define themselves?

- What is important to them?

- What can they no longer do - and how can we problem solve, in order to help them return to that activity?

The diagnosis is really unimportant. We are Occupational Therapists - we help people maximise their independence and quality of life.

A Patient's Thoughts (continued)

[Let's now return to Jane and her words...]

I want to go on living the parts of my life that are important to me: Cooking meals when I can; ordering food that will be delivered; talking on the phone with my gardener, to get the place looking beautiful.

I even talked to the representative of the firm that will carve my mortuary bench. I picked it out last week - and it felt great.

I will close the business officially in September of this year [2025]. I had some goals around how I would spend my life during retirement. These goals no longer seem possible, but I've developed new goals - and will pursue them...

Texts from Jane

[24/07/2025]:

"In an hour I'm opening the window in this bedroom, so I can hear the birdsong."

[30/07/2025]:

"I got to the state park an hour later than planned, but feeling better all over. Before I even sat down on the bench, the waterworks came. Slow and sweet, trickling. My thought was that finally I had got back there. It's been so long that I truly cannot place when I'd been there last! I let all my thoughts go wherever they wanted... I cried and stopped - and cried again for a long time. So much pain, loss, disappointment. But also, in the last weeks: Pain relief, moments of meaningful connection (some deep!), clarity (both mental and emotional) and the basic success in ridding my life of bad juju! Corrective emotional experiences abound! The tears streamed... my shoulders shook... I sat. It was beautiful. I did it! I can go again, anytime I want. Another freedom before I'm gone. I bought the car pass for my son to use too. Tidal pools are great for our busy toddler!"

A Professionals Thoughts (continued)

Jane (in the image below) wanted to go to one of the state parks. She has pretty much stayed inside these past months. But I learned that, with the new meds, she is in a period where she is feeling quite a bit less pain - and so has been 'sneaking out' in her car, to increase her tolerance for driving!

Please, take the time to get to know your clients - regardless of how they will leave the facility. I would often ask my clients if they would like to 'breathe fresh air' and none of them ever said no. So, if ever possible, we would wheel them outside, to this place where they could feel a breeze and we could be alone and talk...

When I taught occupational therapy, I frequently told my students how working with a client was essentially like dancing. At times we lead, at times they do - and we are there for support.

Try it! I am amazed at how many have written to me since I left the university - to tell me that they remember that challenge: To try to 'dance' with their clients.