Same Words, Different Language
If you say the word cancer outside the hospital, it has the weight of a cannonball, smashing into a dialogue, destroying all semblance of polite conversation. Once it has been dropped on them, people do not know what to say in order to lift and carry a word so heavy, so explosive.
But if you are in the Elephant, Giraffe or Lion Ward of Great Ormond Street Children’s Hospital, and you say the word cancer, it is just a word like any other word.
In a place like that where almost every patient has cancer, the word is too general to be heavy or meaningful. The nurses and doctors there are treating cancer every day. Cancer is commonplace, expected.
Retinoblastoma, Zephyr’s cancer, is uncommon so the word can spark some curiosity, but the word cancer on its own feels light as a feather.
Chemotherapy outside the hospital sounds scary and intense. It sounds like sickness, like tubes, like poison, like fear, like skimming lightly over the waters of death, trying not to sink in.
But chemotherapy in the hospital is treatment. It's medicine. It means maybe getting a child better. A nurse who administers chemotherapy has passed through special training; it’s a source of pride and responsibility.
Chemotherapy outside the hospital sounds vague, dangerous, mysterious.
Chemotherapy in the hospital is never vague, always specific. It is freshly prepared in a special chemo kitchen, readied to the specifications of each patient. The perfect measurements and timing are essential.
While it is complicated and nuanced, it’s also commonplace and dependable. It’s there every day dripping from the finicky, beeping machines. The nurses have nicknames for the different combinations. They called Zephyr’s cocktail (carboplatin, etopocide and vincristine) "Joe," as though they were on a first name basis with it. Joe made Zephyr’s chemo sound fun, playful, just a normal guy, a guy that everyone likes for being so down to earth but also so easy to talk to. Good old Joe.
Everyone likes Joe. From their perspective Joe is a "mild" chemo. From the outside perspective there is no gradation. Chemo is chemo.
Everything inside the hospital is so matter of fact. These words that bear SO much weight and portent on the outside are just parcels of information. They are dry and clean and tidy. They are useful but not emotionally complicated. They do not mean more than they seem to mean. They just are what they are.
On the outside all of these words mean so much they barely actually mean what they are supposed to mean anymore. These words are tumors with fuzzy indistinct edges, bubbling outwards, no clear definition, threatening to spread and consume all the conversation around them.
When you tell someone that your baby has cancer, their eyes tend to go wide and they are temporarily speechless. There is no playbook for them in these moments and it shows. Some people look stunned, some inexpressibly sad, some worried, and some just look incredibly uncomfortable.
At that point I always feel like it’s my job to make them feel better. To reassure them. I leap in as quickly as possible to say, “don’t worry, he’s fine, he’ll be fine,” so they can get their bearings, and then I follow up with “children with this kind of cancer almost never die in developed countries,” just to be sure that they can stop flailing and gasping for words, grasping for empathy, unpracticed at what to say or do in the face of another person’s suffering.
I see them exhale with palpable relief when they realize they are not as out of their comfort zone as they’d first suspected. When they know this conversation isn’t going to be as dreadful as first it seemed.
In the first few weeks after Zephyr’s diagnosis, I was in such a state of shock that I felt a need to say words like cancer and chemo out loud outside the hospital without softening the words, without comforting the listener. I learned that these words gain an incredible amount of force once they are discharged. I needed to see their impact, to see the look on people's faces, the shock and concern; it helped ground me in my own feelings, reflecting back what I needed to let myself feel.
But after a while it became emotionally easier to talk about Zephyr’s cancer inside the hospital instead, where conversations don’t get imbued so easily with melodrama. Where you can ask a question and have it be met with a factual answer, and not a bunch of feelings that reflect the listener’s own preconceived notions, fears and discomfort.
The nurses listen and are kind, and they do not look worried or out of their comfort zone. They have seen all this before. They know what to do. I listen to them talking, laughing and gossiping as they move down the halls and through their day, and it makes me feel better, like somehow all of this is normal, is ok, is just life happening after all.
Although the nurses I spoke with could never relate to all the horrors I was going through as a parent, all the intense and awful emotions, they could talk comfortingly and factually about what was happening. I was allowed to have my feelings there, and they were met with a kind calmness that diffused rather than amplified the words I was saying.
On top of everything else that cancer patients and their family members have to deal with, the burden is usually on us to learn to speak different languages fluently with the same words. To navigate the lack of emotion inside the hospital, and the overabundance of it on the outside.
The hard part isn’t being in one setting or the other, it’s bouncing back and forth between them. I get emotional whiplash having to completely change my calibrations for the impact a word or phrase will have depending on who I say it to.
Outside, people’s imaginations can distort our situation into something grotesque and tragic that I barely recognise. But in the hospital, the commonness of our challenges makes me chronically underplay how difficult, painful and frightening things have been.
Neither extreme reflects the actual experience, and perhaps that is one of the ways that loneliness creeps in. Because it is so difficult to communicate how hard, how scary and yet how mundane it all is and have someone else actually understand.