“Life is meaningful because it’s a story. And the story’s arc is determined by the moment when something happens. So unlike your experiencing self that is absorbed in the moment, your remembering self is not only trying to remember the peaks of joy and the valleys of misery but also how the story works out as a whole. …the story’s ending matters.”
Atul Gawande, Being Mortal
In September 2014, my late husband Peter, was diagnosed with a brain tumour and subsequently 4th stage lung cancer. Over the next 12 months, the oncologist and radiologist presented us with many ‘scanned images’ showing what was happening inside Pete’s brain and body. They took Xrays, CTs, and MRIs. These ghostly blue images with red crosses indicating tumours, were both fascinating and scary. We both felt an immediate urgency to get rid of the cancer in Pete’s body as quickly as possible.
Over the next 9 months these images represented the success or failure of various treatments. The following extracts were written in 2015 as Pete and I tried to make sense of what was happening to him though these images.
At first I had planned to publish these observations in a blog where Pete could add his perspective and insights. I focussed on writing about events in relation to my studio practice, rather than dwell on the emotional journey as he was not comfortable about sharing his hopes and fears.
I thought Pete would have at least 2 years before the debilitating effects of cancer took hold. Pete was even more optimistic and planned on being around for another 5- 10 years. However it became clear to me, after the first lot of chemo, that he didn’t have long. I continued writing and drawing sporadically not really having much purpose, other than continuing some kind of ‘pseudo’ research practice. Pete decided to add to the Blog after I had published. He preferred to be part of my art experiments rather than spend time deliberating over issues to do with reading scans. We just tried to have fun each day, despite Pete’s daily struggle to stay alive.
In the beginning, seeing changes in these scans, and understanding what we saw, was extremely important. Sometimes we read the scans incorrectly causing unnecessary angst between oncology visits. I was a steep learning curve. As the months passed by, and Pete’s condition deteriorated, he preferred to ‘feel’ how his body was coping, rather than focus on visual changes. The images became less relevant to him and he had little interest in looking at them. I became obsessed and wanted to know what was happening as a result of various treatments he was subjected to. It gave me the illusion of control.
It raised questions for both Peter and myself about the process of ‘fighting cancer’ and what knowledge is really needed to have quality time at the end. I may explore these questions further, and exhibit some of the visual outcomes, when the memories of this time are not so raw. Meanwhile, this is a topic of conversation with many people I know and meet, so I have included some extracts. This may form the basis of an exhibition post PhD.
2015 Diary extracts:
“Today I decided to start a story; a blog. I have been recording and trying to make sense of the last nine months through my drawing and visual arts practice. The drawing research I am conducting as part of my PhD, has taken on a new and surprising direction since the events of last September. It started as an inquiry into the value of drawing in the creative process and has become my ‘therapy’. Drawing is helping me understand and come to terms with the ‘terrorist’, that has taken my husband and me hostage; Cancer.”
“It is a difficult week. I have put my PhD on hold but I am still ‘fiddling’ about with aspects of my drawing practice. I have been continuing my early squiggle and doodle experiments, which have taken on a therapeutic role. I am not sure where this mindless repetition and patterning will lead, but I am currently finding comfort in the continuous lines.”
“As Peter is now officially retired he volunteered to do some prints of his body. The process was funny and ridiculous; like playing in mud. You can’t be serious when naked and covered in blue paint. Although Pete struggled physically getting up and down, we laughed a lot. It was a bonding experience.”
“It has been 10 months. Precious time seems to be slipping away. Increasingly I find myself not only doodling lilies and lily pads, but cross sections of brains.”
“Sitting in the MRI waiting room last night, I could spot the ‘foreigners’ to this hospital world. When Peter emerged from his noisy MRI ordeal, we immediately looked at the scans the receptionist handed us. I know the scans are not to be used as a diagnostic tool, but the temptation to look at them, and see if there were any new changes, is just too strong.”
“My experiments with water squiggles (marbling) and pareidolia, have also taken on a different direction. Originally I saw faces, animals, landscapes and all the usual imagery that most people see in random marks and textures, but now all I can see are cancer cells, xrays, CT scans and MRI images!”
“Emergency is not a restful environment. I have a huge admiration for the doctors and nurses who work in these places. Emergency is a magnet for the dysfunctional. Today the place was full of police and ‘nutters’. There was a man covered in cuts, bruises and tattoos circling the ward occasionally harassing patients. The man in the next bed has a strange ‘groan’ that sounds like a muffled scream. Nurses and doctors sporadically rush like a flock of green and blue birds towards the sound of an alarm. Despite this, Peter is very pleased to be in hospital. He can breath again.”
“I brought Pete home yesterday. He is now tethered like an astronaut to the mother ship of oxygen. In hospital he had an xray – I saw the two doctors looking at ghostly images and discussing something on the other side of the emergency ward. I recognised Peter’s rib cage. They took another MRI scan of his lungs and compared this with the last one. The young doctor, Mat, walked over to tell us the bad news. “The cancer appears to have grown significantly”. But hadn’t the last scan only been taken three weeks ago? This is happening way too fast!”
Peter passed away on 21st August, 2015.