I’m a Type A, calendar-keeping, list-making planner with a touch of OCD. I like making and adhering to a schedule and don’t deal well with interruptions.
Cancer was the rudest interruption imaginable. Cancer said: “You’re on my schedule now.” But it also whispered: “Cherish your friends and family. Live in the moment.”
I didn’t expect a cancer diagnosis when I went to my doctor complaining of (TMI alert!) rectal itching and an uncomfortable sensation that I needed to empty my bowels all the time – even after I’d just done so. I had Googled my symptoms and diagnosed myself with irritable bowel syndrome and/or hemorrhoids.
The explanation turned out to be more serious: Stage II anal cancer. (Note: Anal cancer is closely tied to HPV, or human papillomavirus, which can be prevented with an HPV vaccine.)
Cancer taught me a lot. For instance:
- It helps to talk about it. The first order of business (before you’ve fully processed the news yourself) is to share it with your spouse, parents, siblings, a bestie or two. Even cancer patients I know who never shared their news broadly (and that’s a very personal, and sometimes professional, decision) told those closest to them.
I shared the news slowly – with my mom, dad and sister, at first. Next, with Shannon Carney, a lawyer and cancer survivor who runs Wind River Cancer Wellness Retreat, whom I’d interviewed a year before my own diagnosis. Then, with a few close friends – and finally, with everyone via CaringBridge:
I was diagnosed with Stage II anal cancer on Dec. 21, 2016. The initial surprise wore off the next day. I went about the work (including CT scans, PET scans, consultations and waiting on insurance approvals) of figuring out a treatment plan.
- Laughter is good medicine. Shannon told me: You’ll need to make people comfortable with the kind of cancer you have. A sense of humor is indispensable. I enjoyed telling people that my chemo was administered via a PICC line which I carried around in – how funny is this? – a fanny pack. (A PICC line is a thin tube used to administer medicine via a vein.)
- Search for a silver lining. I began to redefine what constituted “good” news. I had 4 centimeters of a tumor removed – as much as the surgeon could take without impacting gastrointestinal organs. And the cancer hadn’t spread. This counted as good news.
A single woman in my 50s, I suddenly relied on my parents more than I ever had in adulthood. And I appreciated them more, too. Another unexpected joy. One of my entries from CaringBridge:
My mom has become an expert in the dietary needs of cancer patients. She cooks most of my meals … and won’t allow me caffeine. She has turned the guest bathroom into a spa, where lavender baths are regularly poured … My dad continues in his role as the Rock of Gibraltar. His practicality and dependability … are like a lifeboat. It’s all business-as-usual with my dad, which helps me feel normal.
- Maintain as close to a normal schedule as possible. Having cancer becomes a lousy and demanding (and unpaid) full-time job. So, having something that feels like your typical routine helps normalize that which is anything but. I’m a self-employed writer. Not whining here, but if I don’t write, I don’t get paid. I told my editors and clients about my illness and also told them I would continue to work through treatment as best I could. I told them I hoped they’d continue to send me work. And they did. Not everyone feels like working during treatment. And some can’t. I was lucky. My work helped sustain me.
- Find your tribe. Don’t try to fight cancer alone. It helped me immensely to talk to others who’d gone through, or were going through, the same thing. Colontown is a private Facebook group for people with GI cancers. I got more timely and accurate information here than from any other group. When I wondered if anyone else had suffered mouth sores from chemo, I asked the “Colontownies.” They were able to tell me how they dealt with them.
- Take someone to your appointments. I didn’t and wish I had. You’ll be getting a lot of information, and you may be in sort of a fog of disbelief. (I was.) I misunderstood some things my doctors said. If I’d had a friend with me to listen and take notes, it may have clarified what confused me.
- Assign a gatekeeper. If you have a spouse or partner, that’s the obvious person for this role. I had a dear friend who served in the role. She could post for me on CaringBridge – an indispensable tool for keeping friends updated. She let people know that I was wiped out from treatment and wouldn’t be able to respond to calls or messages – but that they were appreciated, nonetheless.
- Tell people what you need. It’s not easy to admit you need help. But when people offer, they genuinely mean it – even if they’re not sure how to help. Do you need a ride to your doctors’ appointments, help with meals or keeping up with laundry, someone to sit with you during chemo infusions? By the way, I wished I’d ask to see the infusion center –where drugs are administered via IV -- before I went. The more information you have about next steps, the better.
- If you need time alone, say so. It is acceptable and understandable not to feel up to visits some days. Your gatekeeper can deliver the message if you don’t feel up to it.
The late mother of two friends of mine used to put up orange pylons in front of her house when she didn’t feel like having visitors during her late-stage cancer. You may not need literal pylons (although they do work!), but whatever your metaphorical version is, use them.
- Get used to uncertainty. Your doctors can’t predict or warn you about every possible side effect. I never had nausea (as I assumed I would), but I had painful mouth and throat sores from chemo I hadn’t been prepared for. Scans may show something “suspicious,” and you’ll have to return for more scans – days or weeks later – that may prove the suspicion was nothing to worry about, after all.
- Try to quiet your mind. Meditate. Get outside, if only for a few minutes. Light a candle. Doodle.
- Getting over chemo and radiation takes time. Maybe more time than your doctor will tell you. My doctors told me treatment would be over in six short weeks and I’d be “back to normal” within a month. Not so. I lived with painful neuropathy, crazy swings in blood pressure, difficulty breathing while attempting to do something simple – like go for a walk – for many months.
Many survivors feel varying degrees of anger, fear and anxiety. It’s the opposite of the combination of relief and gratitude I thought I’d feel, and that threw me for a loop. I was a survivor, and wasn’t that worth celebrating?
Not when I couldn’t walk around the block without soiling myself.
I was surprised how much I missed being surrounded by people making a fuss over me. How crazy does that sound? But cancer and crazy can go hand in hand. I hadn’t been prepared for cancer, and I wasn’t prepared for its lonely aftermath, either.
I’m now about two years past treatment, and the worst of the after-effects have vanished. Cancer doesn’t consume my thoughts anymore. It’s part of my medical history and my life story, but just one part.
Throughout my journey, I met brave people who were battling their own cancer – sometimes for the second, third, fourth time. I felt a kinship to every cancer patient or survivor I met. As my friends’ mom – with the orange pylons – used to say: When you’re diagnosed with cancer, you become part of a club you didn’t want to join. But there are some awfully nice members.
Page Leggett is a freelance writer in Charlotte and regular contributor to Healthy Headlines.
Novant Health Buddy Kemp Cancer Support Center offers support to any individuals impacted by a cancer diagnosis throughout the Charlotte region. Services include counseling, support groups, special events and more.