In the Journal of the American Medical Association, Samuel Auger wrote that
The emotional and physical stress on patients with head and neck cancer through diagnosis, treatment, and surveillance can be immense, and greater than that experienced by other cancer survivors. Rates of suicidality are twice that of other patients with cancer, triple that of the general US population, and increasing.
One component of the stress of throat cancer is pain. The soft tissues of the mouth and throat are richly endowed with pain receptors. The first signal that I was ill was the pain I experienced when trying to swallow in early 2020. The pain increased during the radiation therapy, when five days a week for seven weeks, we tried to burn the tumour out of my throat.
Since then, throat pain has fluctuated but gradually increased over time. I can’t explain either the fluctuation or the gradual increase. Neither can my physicians. They say, “We see this.” I don’t know what else they can say.
Here are some lessons in pain management.
Lesson 1: Living with throat cancer requires learning to manage pain.
Living with cancer – or any chronic illness – requires developing and maintaining routines. You manage something to achieve a goal, so start by clarifying your goal. The obvious goal is minimizing pain, but that’s not what I am trying to do.
Instead of minimizing pain, I try to avoid intense, disabling pain. I do that by eating soft, unspiced, non-acidic foods, staying well-hydrated, and taking a mix of hydromorphone (an opiate, the trade name is Dilaudid) and Advil. I take pills every 4 hours in a routine I worked out with my doctor. That sounds simple, but it took a lot of trial and error to work it out. For example, how do you take a pill at 4:00 AM if you sleep with a partner?
I could take enough opiates to eliminate pain, but I don’t. Why not? The dose of opiates needed for that leaves me sitting on my couch, staring at the wall, losing time. I don’t have much time, and I still have things I want to write. Each waking hour is precious, and I’ll tolerate moderate pain to keep a clear head.
Lesson 2: Pain management is complicated; get help.
I try to keep strictly to the dosing schedule. The reason is how hydromorphone acts over time. Dilaudid has only mild side effects (headaches and nausea), works quickly, and clears the body quickly. A standard 1 mg tablet will relieve pain in about 15 minutes, and the analgesia will be gone in four hours. I wait at least four hours before taking another pill; otherwise, the daily dose will creep up. But it’s impossible to control life so you never let more than 4 hours pass. Things can deteriorate if I go 5-6 hours.
I spoke with my oncologist, who wrote me a prescription for extended-release Dilaudid, a 3 mg capsule I take every 12 hours. Same dose, but an 8:00 AM/8:00 PM routine is much easier to sustain.
To get help, you may need to see other doctors. Your oncologist specializes in cancer treatment. She will know about treating pain, but not as much as a palliative care or a pain specialist. Ask your oncologist for a referral.
Lesson 3: Do not self-medicate with alcohol.
I was a moderate drinker; alcohol was part of my hospitality to friends and family. My idea of heaven is to have you over and serve you tagliatelle al ragù alla Bolognese, paired with a brunello di Montalcino. Or I could make you a Oaxaca Old Fashioned (like the classic cocktail, but made with reposado Tequila and Mezcal instead of whisky and agave instead of white sugar syrup). A small amount of alcohol promotes relaxation, reduces social anxiety, and encourages mild disinhibition. In summary, it promotes sociability. It’s no accident that alcohol is part of every culture: it helps us bond.
But not with cancer. Yes, alcohol may be mildly analgesic, but if you have your first vodka and cranberry at 9:00 AM, you are not managing your pain. I hear you say, “I already have cancer; what do I have to lose?” Here’s what you can lose.
Even moderate consumption stresses several organs that are already stressed by your disease. You are more prone to accidents, and your cognition is impaired. Even a little alcohol hurts, and a 1-drink-a-day habit can rapidly accelerate to 4.
Worst of all, alcohol increases your risk of depression. Do not play around with this one. Depression is a life-threatening condition that attacks your will and energy. A depressed person has trouble doing the constant daily maintenance, including pain management, that his illnesses require. This creates a vicious cycle: losing control of pain further saps your will and reinforces your despair.
If you have cancer, stop drinking now.
You are an absolutely amazing human being. I admire your strength and courage that finds a way to make purpose of an awful situation. I hope you are finding comfort and happiness in spending whatever time it is that you do have left with those you love. Thank you for sharing your journey.