And That’s How You Narrate A Story

Mark recently shared with its makers the story of a happy family who almost lost everything and the one husband who had to keep them all together — I mean, how Marketcircle‘s Daylite Productivity Suite saved his sanity.

Here it is:

If you’ve ever had to deal with a cancer diagnosis in your family, you’re probably familiar with the changes it imposes on your life how it plays with your cognitive focus. This is what my family experienced when my wife, Andrea Ross, SMS’d me on October 6, 2009 with two big-small words: “It’s cancer.”

After I overcame the shock, I realized I would have to be Andrea’s chearleading champion and primary support. I half-jokingly announced to anyone I spoke to that I was taking on the role of project manager of Andrea’s treatment program. I also realized I would have to be coordinator of the family members and friends who emerged as our support system. In the process, I had to learn the medical language of cancer.

Daylite was the perfect tool to stay on top of our new life. It was my co-pilot. I maintained contact records and meeting notes for our new world which included a surgeon, medical oncologist, radio-oncologist, Breast Cancer Clinic case worker, Patient Designated Nurse (PDN) and a home care nurse. There were surgical prep appointments, an arsenal of tests, three surgeries and all the related recovery information, nuclear medicine appointments, energy treatments, blood tests, six chemo treatments over 18 weeks, six weeks of radiation treatment (30 in all) and port-a-cath flushes.

If that’s not enough, our family still had to function as one. Daylite helped me keep track of our daughters’ (then eight and ten years old) extra-curricular activities and invitations from friends and family who hosted them for playdates, ski outings, dinners and sleepovers.

I depended heavily on Daylite’s ability to link appointments, phone calls, emails and contacts to task and projects. I kept good notes in the details and meeting minutes fields. I can’t think of a feature of Daylite that didn’t help me keep my wits about me.

Daylite Touch was a fantastic tool, as well. I used it to stay on top of everything wherever I was. Having said that, I couldn’t have the 3G features of my iPhone enabled in most of the hospital, and I was more than conscious of the stigma attached to taking “handheld notes” during face-to-face meetings. So, I kept handwritten notes using my Livescribe Pulse Smartpen (livescribe.com) and attached the PDFs into appropriate records in Daylite. This saved me missing important information and allowed me to avoid a double entry note system. It was a snap!

I’m excited beyond words that Andrea’s been given a clean bill of health. The busiest part of her treatment program ended in time for us to enjoy an amazing and re-connecting summer. She returned to work in September. She have another four years of Tamoxifen and has lingering discomfort from the assault on her body. You learn to love life and live it all over again.

Did Daylite save Andrea’s life? No. Mine? Perhaps. We’ll never know. What I do know is there’s no way I could have kept my wits about me while tracking of all of the goings-on using any other personal organization software – definitely not as efficiently or effectively.

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And that’s just off the top of your head

We’ve learned the hard way there are people who have no idea that what they say to cancer patients and their support systems is inappropriate. Andrea published a brilliant post about this, I See Dread, People, and I’d like to offer a refresher with five helpful hints of my own.

AT TIME OF DIAGNOSIS: Upon learning about the diagnosis, be supportive and keep your own horror stories about the disease (or any other less than positive stories) to yourself.

HELP: If you offer help, be specific — for example, ask when you can have the kids over for a play date or offer to send a meal over on a specific day (bonus: ask about any food alergies, nutritional needs and dietary restrictions).

DURING TREATMENT: Check in during the treatment process and renew (or offer new) specific offers of help. Make it known you’re thinking about the person and their family.

AT MILESTONES: When a milestone has been achieved, be a part of the moment by celebrating with the person and their family. Something like, “Congratulations!” is a very good start. You can freestyle that by acknowledging the difficult journey it’s been for the person to get to that point and how thrilled you are for the person that they’ve made it to this milestone. “Be there.”

SHOW GENUINE INTEREST: If you know the person has a blog, follow it. It’s a great place to stay up to date and even leave messages of support and positive thoughts at regular intervals. It’s also a great tool to know when help is needed the most. If you know the person has a blog, catch up before you contact them. It shows you care and their health and journey is important to you.

Put our heads down and power through

Now that chemo’s over and Andrea’s nearly completed her full recovery cycle (which means she’s about a week away from being able to be out in public without an elevated risk to her health), we can start thinking about the next stage of her cancer treatment… radiation.

We love Andrea’s radio-oncologist. He’s an incredibly nice and patient man. We experienced a remarkable trait of his during our consult with him last week; even though he may know where we’re going with a particular thought or question, he waits until we’ve finished speaking before responding. He doesn’t jump to conclusions or feel it necessary to cut short our thoughts.

Andrea will have a CT scan in the next few weeks. During that appointment, a technician will mark the two locations at which the radiation treatment will be directed. This ensures the treatment is always directed at the same spot.

Beginning in May, Andrea will have radiation treatments each weekday for six weeks. Despite the frequency and duration, radiation seems much less scary to me than did chemo. There are no meds, and no physically- or emotionally-crippling side effects.

We’ve been told to expect Andrea to feel fatigued over the course of the treatment as her body works to regenerate cells that are being killed off each day (just as it got the regeneration process underway from the previous round). We’ve also been told to expect that Andrea will present sunburn-like skin irritations and discolouration beginning in the treatment area around week four of the program.

After she powers through radiation, Andrea will begin hormone therapy. Given what we’ve been through, that’s not as far off in the future as it sounds.

The Supporter Experience #3: Applause

Today was Andrea’s second chemotherapy session. As always, she was a champ. I sometimes wonder how I would fair in the same situation.

Today, as I watched Andrea’s medicine bags drain I clued in to a celebratory atmosphere just opposite where we were sitting. It was a gathering of nurses making a happy fuss over someone as they were disconnecting all of the tubes; disconnecting for the last time as it turns out. Then there was a procession of nurses clapping and hooting as they followed the patient down the hallway of clinic for what will hopefully be their last visit there.

My focus for chemotherapy is to keep our heads down and power through. If we can keep Andrea healthy, she can remain on schedule and we can listen to the nurses cheer her on as we leave the chemo clinic for the last time on April 2.

The supporter experience #2: sleep

Perhaps my biggest and most consistent struggle since Andrea first discovered the lump in her right breast has been sleep. For a good chunk of September and almost all of October I was relieved if I could get four hours of sleep a night and thrilled if three hours came in one shot.

I did my best to not train my body into that pattern. I was more likely to lie in bed, restless and frustrated — yet still so as not to bother Andrea — than do something entertaining or productive. On the rare occasion I’d read a book or go to my computer and mindlessly surf for a few hours. The fact is, I had so many things on my mind that I wouldn’t remember much of what I did in those waking hours anyway.

Where at one time my sleepless nights were because of my concerns over Andrea’s health, our family and household, being unable to sleep became the ironic additional reason I couldn’t sleep.

And so it was that I would get by each day on a diminishing hours of sleep. Eventually, at the encouragement of my mother and her physician friend, I asked my family doctor for a prescription for Trazadone. I took it for three nights before I gave up on it and let my insomnia run its course.

I think it was mid-November before I was able to get a decent sleep. Since then I’ve also taken the occasional weekend nap knowing the role of sleep for staying healthy and effective for my family. The holidays were particularly nice for that.

Photo: Me, exhausted during a train ride to Quebec City, 2 days after Andrea’s diagnosis.

The supporter experience #1: don’t panic

Don’t Panic. Those are the insightful words that grace the cover of The Hitchhiker’s Guide to the Galaxy, the fictitious guide in the earthly book by Douglas Adams. I’ve tried to live by those words for most of my adult life. When our home was broken into in September 2006; don’t panic. When United Airlines lost our luggage last Christmas; don’t panic. When I discovered I didn’t have my wallet with me when I was at the grocery checkout a couple of months ago; don’t panic.

As the loved one and primary support of someone diagnosed with cancer, don’t panic is a golden rule. Throughout the process you will hear a variety of cancer experiences from people all too willing to share whether you want them to or not, whether they understand the impacts of their stories or not. Surgeons, oncologists, nurses and anaesthetists will use words you’ve never hear before and will talk about side effects and will likely allude to long term impacts from treatments.

You may even have an experience like we had a week after Andrea’s breast cancer diagnosis. Andrea’s dentist found a cyst in her mouth and suggested it be biopsied. Thankfully it turned out to be nothing (Andrea must have bitten the inside of her cheek). However, for four stressful hours, we dealt with the possibility that the cancer wasn’t confined to Andrea’s breast.

Don’t panic.

Being the primary support means you need to be rational and calm. New language, information and ideas need to considered as part of the whole and you need to remain coherent when throwing in the towel seems the logical thing to do. It’s completely okay to be emotional so long as you don’t let your emotions interfere with being an advocate for your partner, communicating with your medical team and making sound decisions.

I’ll talk more about emotions as I share more of my supporter experience.