Cancer Diaries

i.

My mother accumulated documents: grocery receipts, christmas cards, party invitations, funeral programs, minutes from every committee she was ever on, notes on miscellania. And envelopes. Going through her documents, I found lots and lots of used envelopes stuffed with other used envelopes. She must have held on to some of them for 30 years. Envelopes filled with envelopes. Perhaps there’s a metaphor there. Even though—should it be even though?—her life was so richly documented, she did not keep a narrative diary.

My mother’s diaries were appointment and pay diaries, especially the latter. Each month, she’d note what she’d paid and when: water, electricity, internet, domestic work, and home repairs. When the grass was cut. Or the leak in the roof fixed (again!). Or the rain gutters cleared. Or some electrical thing or other fixed. Her diaries tell a story of her house.

They tell, as well, stories of outings and travels: a golf match here, a church trip there, a family outing somewhere else. They do not mention weddings or funerals, and I wonder why those are absent. Again, these are not narrative journals. At best, they might be considered cursory notations by someone who lived through and with other people, who accumulated and told stories.

Perhaps the kind of storytelling my mother did meant she did not need to write down everything.

ii.

My mother was first diagnosed with cancer in February 2016.

Her 2016 diary is not chronological. Time moves in other ways. One must know what they are reading.

The first notation about cancer is financial. It is placed in January 2016: Rent, Chemo, Radiation, Food, Transport, Flight. A number that is wounding. These numbers could only have been written around March, at the earliest. After we had contacted hospitals in India and got quotations. I am not yet sure what to make of this achronology, how cancer moved back through time to flavor that time.

Perhaps it is simply that every diagnosis is retrospective: it names something that had already been acting on one without one’s knowledge. Perhaps it is also that every diagnosis is, first and foremost, economic. Cancer care quickly exhausts insurance, and one must ask how and whether it can be paid for.

An entry for February 8 names a doctor, a location, and a time. Was this the first consultation? Perhaps. Was this the moment it all changed? Perhaps.

Names and numbers crawl across the pages. Some are donations from families and friends. Others ordinary household expenditures. Some are phone numbers. People who needed to be called? They move across pages, not marking when people were called. Simply indicating that some kind of contact had been made. The numbers already existed as contacts in her phone, so I think about the act of writing down those contact numbers.

My mother frequently wrote down numbers from her contacts when making payments by mobile money. A way to keep track of expenditure and income. Also, a way to make real what felt virtual. Mobile money records exist on the phone. If necessary, one can request a statement. Writing it down made it real differently.

I am not sure how to account for this record keeping. This doubling of labor. Perhaps doubling is the wrong way to think about it. Writing makes different relations visible. 

iii.

We left for India in April 2016. The flight details are not noted in the diary. In February, my mother had a full hysterectomy, and while she had healed enough to fly, she was still in pain. Travel was uncomfortable. None of this is noted in the diary.

On arriving, she was scheduled for a series of blood tests and a PET scan that would provide information to guide the treatment. Again, none of this is noted in the diary. The diary is full of gaps. Even as I fill those gaps. I am, in one way, one of my mother’s cancer diaries.

The first entry that names cancer and treatment is Wednesday, April 13, 2016: 

#1st CHEMO

GOD SEE ME THROUGH 

AMEN

That first chemo was slow, because the doctors wanted to see how she’d respond to treatment. Did it take 10 hours? Something like that. The pre-meds took, maybe, an hour. Mostly to help manage the side effects of the chemo. And then the chemo—were there two drugs or three? I have the records, but I will not check right now. Each one was administered very slowly, over 2 or 3 hours. There were regular temperature and blood pressure checks.

With the exception of brief bathroom breaks, I sat by my mother for the 9 or 10 hours, getting the nurses when required. My mother was in good spirits. She told the nurses that she had trained as a nurse. She made friends and coconspirators. She had a way of eliciting stories, building connections, making a shareable world.

After the chemo was done, an outpatient procedure, I got a wheelchair and we went to our accommodations to manage the side effects.

iv.

The next entry, Tuesday, 19 April 2016: 

BLOOD SAMPLES GOOD

Many blank pages follow. And then: Monday 4 July 2016:

OFF Rx

LOW HB, PLATELETS

Wednesday 13 July 2016:

Platelets blood transfusion

Thursday 14 July 2016

Radiation

Friday 15 July 2016

Radiation

Saturday 16 July 2016

Radiation

Sunday 17 July 2016

Rest

I will not include the rest of the radiation treatments. And, indeed, apart from those first three of many radiation treatments, no others are listed.

Where do words trail off. Why do they trail off. Other record systems exist. We had a radiation card that was signed following every treatment. It was all recorded. Some records are doubled and others are not. I do not know what requires some things to be doubled.

It might simply be that she was too exhausted from treatment to record what had happened. It might be that leaving treatments unrecorded allowed her to imagine otherwise onto those blank pages. I hope so.

v.

I have my mother’s medical records. Every test. Every scan. Every procedure. It is, probably, close to 500 pages of documentation over the 4 years she was in treatment. By the time we left India in 2016, it was probably about 200 pages of test and procedure results. Detailed narratives of drugs given and how she handled chemo. Detailed accounts of the radiation treatment. Receipts. So many receipts: for housing, for groceries, for drugs, for trying to live so we could live.

The post-chemo reports all have something like “patient was fine” or “patient handled treatment well.” They are about the only things that hint at my mother’s emotional state.

“Give this pain to no one else,” Shailja Patel writes. And this was an ethic my mother carried. Even when she was in pain and frustrated, she never took it out on me or the medical staff.

I do not yet know how to think about the sparse account in her diary juxtaposed against the voluminous account in her records. I do not need an account of my mother’s feelings: I was there. I lived with them.

Still, I trace her handwriting and want something. I am not sure what.

vi.

I am the third cancer diary.

My mother’s sparse diary.

Hospital records.

Me.

I am trying to figure out what this means. I wrote about watching my mother receive cancer treatment in India. And then, when the cancer returned, receiving treatment in Nairobi.

Her veins hardened, so it was difficult for blood to be drawn. The phlebotomists had to use needles used on infants. Her veins hardened. Some “moved.” I don’t know how else to explain it. A chest port was inserted so treatments could be administered. She did not worry overly much when hair started falling: years of perming her hair in the 80s had thinned it considerably, and she wore a wig long before it was fashionable. She loved her hands. She was upset when the nail beds turned black, one of the side effects of chemo.

Mostly, it was the frustration of losing ordinariness. Having to use a walking stick. And then a wheelchair. I will not detail the other losses. Some secrets are still hers. Always hers.

vii.

I am the third cancer diary.

Over the years, I have wondered if I should write an account of those final years. Of the many moments of kindness and generosity from strangers. Of the many moments of surprise and wonder. Of those brief pockets of pleasure. Of my mother’s persistent smile. Her joy in small children.

Perhaps that kind of writing might happen one day. For now, I remain like the blank pages of her diary: holding on to stories that are still not mine to tell. Holding on to the strength and grace she modeled. Holding on to who we were to each other in fraught spaces.

For now, this is enough.