At first, there so much noise. Phones ringing, kind and supportive messages flooding in. Appointment after appointment, preparation for surgery after surgery. Fitting it all in becomes a full time job. Information is a flood, coming at you faster than you can process it, like drinking from a fire hose. People are everywhere, offering a hand, food, respite, coffee. Health care workers asking question after question after question. You feel at the center of a very large, uncontrollable storm.
And almost immediately, you are isolated, alone.
Because even surrounded by people you love, something irrevocably separates you. While life continues for everyone else; meetings, errands, normal people problems, dinner plans, ordinary worries, yours narrows to scans, lab results (lots and lots of lab results), side effects, and the unbearable weight of waiting over and over to find out if the medication is working. You are still here. Still yourself. But invisible to reality as the rest of the world moves on, leaving you behind.
Loneliness overwhelms when language fails, when words slice open your soul. No, your fatigue is not the same as the fatigue caused by cancer. No, your pain isn’t the same, physical or psychological. No, you cannot compare the one time you encountered a complication when we face complication after complication, day in and day out. No, don’t try to compare, don’t stretch for common ground. No, don’t try to put me or my experiences inside a neat little box. I overwhelm that box, nothing about me or my experience fits and nothing is neat.
There are no simple words for the fear that just won’t quit, night after night after night. No easy explanation for how your own body can suddenly feel unfamiliar, the betrayal of unlikely to, the statistics that don’t prove to be true, yet again. No sentence or verbiage that captures the mind numbing exhaustion of always being on edge, watching. When people ask how you are, the truth is too heavy for the space between “hello” and “I’m fine.” So you say you’re okay. And each time you do, the chasm widens. Each time you smile and accept that correcting ill advised words will garner side eyes (or worse) you get farther away.
Cancer distorts time. It steals the calendar you once lived by. It changes everything, from relationships to celebrations.
You stop measuring life in moments and start measuring it in appointments. In scanxiety and results. In statistics at a population level that won’t ever apply to an individual. In where you fit on a graph. An unremarkable report becomes a milestone — and a reminder of how fragile relief can be, how fleeting NED. Others speak casually about next year, five years from now, retirement, vacations, grandchildren. You nod along, while quietly living in three (3) month intervals, unable to plan or even conceive beyond that, while quietly grieving how you won’t meet the next generation in person, maybe not even seen your child graduate from kindergarten.
Then there is the loneliness of being misunderstood.
Exhaustion and frustration are interpreted as anger. Boundaries are violated and treated as nuisances. Well-meaning encouragement can feel like pressure to be brave. Misplaced optimism = dismissal. Advice can feel like fingernails on a blackboard when what you need is simply to be heard. Positivity becomes toxic, a burden. You realize, sometimes painfully, that no one; no matter how much they love you, can carry this weight for you and the pressure to handle it all without complaint is crushing.
If you are a HCW, don’t congratulate someone on having their port removed — they just might have a life threatening blood clot inside that port, not achieving the end of treatment. Don’t call an infusion that will make them miserable for days, just a regular infusion. Never ever call any cancer, the easy cancer. Don’t ask when someone will be done with treatment. Don’t make people who have lost their fertility walk past happy people taking their fresh babies home from the hospital just to get to the infusions that will ensure that fertility can never come back.
Next time, instead of chastising a worn out patient to be “nice,” consider what part of their burden you could alleviate. Next time, see what you could do to make an appointment run smoothly instead of punishing the patient for perceived slights — it’s likely actually not about you. Next time, pick up the phone and check on the people around you. Next time, don’t write someone off because they cancel a lot, keep up the invites. Next time, realize a sick person spent every spoon they had to just show up and cannot do more. Next time, don’t give excuses. Next time, just lean in. Next time, include us.
Next time, ask questions.
No Half Measures 