HOPE ON A PENDULUM

Murray, William Staite; Action and Inaction; York Museums Trust; http://www.artuk.org/artworks/action-and-inaction-8316

Part of the THIS IS THE MOMENT series. 

January 29th, 2019

I got my second scan results, once again, through my sister-in-law who is a radiologist. She received my email at the beginning of her vacation (she doesn’t—can’t—take nearly enough time off), and promised to let me know how things looked as soon as she got back. When she did, I received a very brief email stating that things were “stable”: no new lesions, no growth of existing tumours. STABLE. I immediately replied, asking if that meant that nothing had shrunk, she replied again: yes, stable.

After processing her words a bit longer, I felt myself sliding down into a gutter of sadness. Of hopelessness. It was so precipitous, it was almost like the sweeping downward movement of a rollercoaster.

Wadsworth, Edward Alexander; Souvenir of Fiumicino; Manchester Art Gallery; http://www.artuk.org/artworks/souvenir-of-fiumicino-206329

So much for my bravado. My morale is wobbly and vulnerable. My mind was filled with a frantic salad of thoughts such as:

– “Stable” means the drugs are (already!) no longer having the desired effect on the tumours/

– “Stable” means the beginning of the end, because if the tumours aren’t shrinking anymore, then the second we stop treatment, they’ll spread everywhere/

 – “Stable” means the cancer has adapted; when I got the first scan results that were so favourable, there was a brief period when I thought: “Maybe I’m one of those people who will be “cured”, against all odds, of their stage 4 cancer. But I’m not./

 – Maybe I’ll be dead in a year…perhaps two years…I won’t be part of the future.

I was hurtling down a steep incline, having lost sight of all of the answers to the question: What am I afraid of?

Like mountain climbing when, after a near catastrophic fall, you struggle back up to where you set your carabiner, and you see that you’ve moved well beyond chemo base camp, and that the stakes now feel even greater.

Hughes, Lynda; Light, Hope and Dancing; Victoria Centre; http://www.artuk.org/artworks/light-hope-and-dancing-64368

Then I thought to go online and just look at what the American Cancer Society has to say on the matter. I found what I was looking for under the heading “Managing Cancer as a Chronic Illness.  I read through the sections several times and each time, it was like pushing my mind’s refresh button. Each time, things were slightly altered.

I think that I’ve arrived at a crucial place: I must now accept that stage 4 cancer (barring a medical miracle) is chronic cancer—if you’re lucky. If it doesn’t spread like wildfire. A cancer that you can live with for a while (…to be determined). And living with chronic cancer means several things, including the fact that the life that you had before you were diagnosed is GONE. It will not be resurrected. GONE. Got that?

This was so from day one but I hadn’t yet understood and absorbed it.

Amongst all of the daydreams that sweep things back and forth in my mind was this notion that perhaps, if I was very, very lucky, perhaps one day this life I have right now would all be gone and in its place, my old life—the one that contained my work, my physical strength and stamina, my greater independence, my ability to travel, and the plans I shared with my sons about the future—would return. That I would have a life after cancer.

I know differently now, and should have sooner, except that, apparently, my mind relinquishes its patterns reluctantly, and holds onto its schemas the way very small children cling to their parents. I live and hope to keep living with cancer. That’s my new narrative.

Organ, Bryan; Pendulum Number 3; Leicestershire County Council Artworks Collection; http://www.artuk.org/artworks/pendulum-number-3-82559

Time is breaking down my resistances, and I can now see that I will be able to live with cancer for many months and, perhaps, years. This means a life lived close to hospitals, to medical care, to drugs and treatments. Regular medical intervention and supervision of my cancer and health, till I die. Freedom within those parameters.

This all coincided with bad news we received. Heartbreaking news, concerning a close member of our extended family; someone we haven’t known all that long but love deeply, who, at 53 years of age, has also been diagnosed with stage 4 cancer of a different type, but who had the news thrown at her in a manner I consider violent and without compassion.

These coinciding events—my scans and her scans—sent me reeling, creating such a mournful feeling in me.  I have lived seven more years than she. How can I not feel rent by this news?

It seems as though there will always be broken pieces to pick up and make room for in the mosaic of my life.

Yesterday, I was back at the CHUM for my routine pre-chemo tests, and spent a while with my oncologist, Dr. Aubin (whom I’ve mentioned before), who heads the clinical trial I’m participating in. I was waiting to see her before writing any of this to you.

Bentley, James; Helping Hands, Cancer Research Sponsored Walk, Buckley, 1st October 1994; Flintshire Museums Service; http://www.artuk.org/artworks/helping-hands-cancer-research-sponsored-walk-buckley-1st-october-1994-180360

She greeted me with a smile, and a cold, which she thinks she caught during her flight back from San Francisco where she and her team were presenting their work and findings so far. She was full of enthusiasm about the outlook of research in her field.

She examined me, and then we discussed my recent scan results, and when I mentioned that I was disappointed, she looked at me and said no, no, that she was very happy with the results; that the cancer is being controlled and that there was, in fact some modest shrinkage, and that all was well. That these sorts of fluctuations were to be expected. And she said it all with a broad smile, so I believed her, and told her that I have finally understood that my disease is chronic. That I know what this means. And she nodded, and smiled.

Before we parted, she said to me that working in oncology is a real challenge, but that patients like me made things much brighter.

It’s hard not to feel buoyed by such words, and so I shall try to knock some sense into myself and repeat to myself that the future is unwritten, and I shall try to narrow the swings of the pendulum to which my hope is tethered.

Lassen, Jeanette; The Road to Health; NHS Lothian (Edinburgh & Lothian Health Foundation); http://www.artuk.org/artworks/the-road-to-health-184508