William Ramshaw resides in the expansive Pacific Northwest. He is a six-year survivor of pancreatic cancer and has written a memoir Gut Punched! Facing Pancreatic Cancer.

William Ramshaw

As much as I want to believe my doctors are beyond brilliant and can do anything, they are people too. Much like me, they have good days and not-so-great ones.

Before finding out I had pancreatic cancer I rarely saw a doctor. Perhaps I would see my general practice doctor for an annual physical every three or four years. I should note when I turned yellow, it was this same general practice doctor who ordered an emergency CT scan, which likely saved my life.

Post-cancer, I see a raft of doctors. I see a gastroenterologist to monitor my digestive system which is a mess. Missing the top third of my pancreas courtesy of a Whipple procedure to extract my pancreatic tumor, I take enzymes to help me digest my food. I see an endocrinologist to track the progression of my diabetes. He also monitors my osteoporosis, courtesy of the abdominal radiation I had to help excise any post-surgery cancer cells. Did I mention I see a podiatrist who is tracking my peripheral neuropathy — loss of feeling — in my feet? Yet another side effect of my diabetes.

Perhaps it is not cancer-related, but I see a cardiologist who is wondering why my atrial fibrillation (AFib) instances are increasing.

As I told one of my doctors, I have doctor fatigue.

While many of my doctors listen most of the time, I’ve had instances where I’ve had to remind a doctor to listen to me rather than assume they understand what is going on. I live in my body. They don’t.

What are the signs your doctor isn’t listening?

Constant interruptions. These can be subtle with words like the repeated use of “Uh huh,” “Uh huh, “Uh huh,” … But it can be more direct with the doctor cutting me off mid-sentence. Interruptions.

Fidgeting. Let’s face it, most doctors are overscheduled. But this isn’t my fault. Hurriedness.

There but not there. Looking away or worse: that vacant stare shows they have checked out and are wondering how many more patients they have to see before they can hit the road for home. Distractedness.

Aggressive body language. Facial expressions of contempt are the worst. While I can understand the “why” behind this it makes it no less acceptable. Lack of respect.

Being prepared. I always write out a bullet list of what I need my doctor to know. Like many, when the white coat opens the exam room door, my mind goes blank. Having a written list of changes in my medical situation, what I need help with, and questions I have, helps me stay focused and not ramble wasting my doctor’s time. Additionally, to prepare for my appointment, I often do a little research on my questions to help me have a discussion with my doctor rather than being told something I may or may not understand. Be prepared for your appointment.

Being courteous. One never knows what kind of day a doctor is having. Minutes earlier they could have had a tense discussion with another patient or worse things may be happening to them or someone in their family they simply can’t talk about. Give them the benefit of the doubt. Be courteous.

Rewinding the conversation. If I find my doctor is not listening, I have found it helpful to use words like, “Can we rewind this conversation?” and restate my point. If needed, rewind the conversation.

As a last step, change doctors. I rarely have to take this type of drastic measure, but there are times when changing doctors is necessary. Doing this doesn’t need to be a confrontation but rather it can be handled with a comment to one of the doctor’s schedulers, “I would like to see a different doctor. Who might you recommend?” When asked why? I simply say, “‘Name-of-the-doctor’ and I are not working well together.” There is no need to provide details. The doctor is there to provide care to a patient. If you feel the care needed is not being provided, change doctors.

Rather than shrink back from having a “tough” conversation with a doctor, it is critical to do just that. Often these types of conversations, rather than ending a relationship with a doctor, strengthen it.

So, if you find your doctor isn’t listening to you, show up prepared for your appointments, always be courteous, rewind the conversation when necessary and most of all, don’t hesitate to change doctors if nothing else works.

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Articles

Here are four signs of your doctor not listening and four things I do when they don't listen to me.

What I Do When My Doctors Don’t Listen 

Having never smoked, when she got the news she was stage 4 a year ago, everyone tried to support her and her husband, but we all knew her chances of beating it were slim, if nonexistent.

Earlier this week I got word about another good friend who is facing lymphoma, a cancer of the lymphatic system, the body's germ-fighting network. I suppose the good news is he has a great doctor, a leader in treating lymphoma, but this doesn’t make it any less scary.

A neighbor behind me has been fighting metastatic breast cancer for three years now. While she’s holding her own with the help of a cocktail of two chemo agents, sadly, day-by-day she’s losing her hard-fought battle. A few weeks ago she told her husband, “I wonder if I’ll see this coming Christmas.”

Three years ago I lost another great friend to a run-of-the-mill sarcoma, a cancer of the soft tissue. A pastor, not as a pastor but as a good friend, often visited me in the hospital during my fight with pancreatic cancer. Only 52, with so much more life to live, he left behind a wife and three teenagers to fend for themselves.

Every time I witness another senseless cancer death I go into a funk. Every time someone around me gets told they have cancer, much like many cancer survivors, knowing how hard their cancer road will be I end up reliving my fight with pancreatic cancer. Grief floods me knowing what is ahead for them. With cancer being intensely personal to each of us, do I stand off and remain silent or do I inject myself into their story? I wish I had an easy answer to this question, but I don’t.

Sadly, most often I feel helpless. What can I do? What can I say? Words like, “You’ll beat this.”, seem hollow and pointless. Telling them about the tough recovery from the likely surgery to extract their tumor also seems pointless. Or telling them about the hours they will be spending in the chemo room is pointless as well. They will learn these things in due time. It’s not mine to tell. Perhaps things will go better for them than they did for me. Above all, I avoid telling them about what’s ahead unless they ask me point-blank.

So what do I say? For the most part, words in themselves mean little. Perhaps the best I can do is to listen closely and reflect back to them what they’ve said or could not find the words to say. The sheer terror of cancer leaves many of us speechless and struggling to put words around questions, like “Will I make it?” Or, “What will happen to my family?”

The worst part of trying to help a friend facing cancer is much like a flashback to a long-ago tragic event their cancer reignites my cancer journey. Suddenly it all comes flooding back to me, my hours-long surgery, months of radiation and chemo, followed by complication upon complication. But I need to press through my challenges and be there for them. They need me now as much as I needed them back then.

In all this, I’ve found the one gift I can give them is to simply be there for them. To walk alongside them. To support them. To do something for them they cannot do for themselves. The options are limitless. Take them to a doctor’s appointment or watch their kids while they are there. Go shopping for them. Bring them a meal. Mow their lawn. Get creative. Do what you can.

So next time you hear of a friend embarking on their own cancer journey, use this as a call to action. Say little but do a lot. Be there for them.

Today I had lunch with a good friend only to learn his next-door neighbor lost her fight with lung cancer two days ago. 

Coming Alongside Friends With Cancer

People experiencing a near-death event often talk about having their life flash before them in ultra-fast-fast forward, now I know what they mean. When I heard those words with “pancreatic” thrown in to give them an extra kick, I felt like I had been drop-kicked. Would I be there for any of my three daughters’ big days or would one of my brothers have to serve as a sort-of-dad stand-in? I didn’t know.

Those five words are among the most terrifying that can fall out of any doctor’s mouth. But yet, once one hears these words, their terror seems more like a snarling and snapping dog that is all bark and often only nips. At least for me, finding out I had cancer was the easy part. Much like that sharp pain when a band-aide is ripped off, I winced but at the same time, I dug in for the fight. (Sadly, for some, these same words freeze them in a block of fear rather than calling them to action.)

For me, being a type-A guy who looks at everything life throws at me as a do-or-die challenge, I set out to survive. Once I understood I had pancreatic cancer with a hideous survival rate so low many consider it a death sentence, I read everything I could find about it. Using the FDA regimen I was to be treated under helped me focus my reading. Simply Googling name-the-cancer often turns up spurious stuff that has little medical relevance.

As much as knowing more about your cancer can be debilitating, it can also be liberating. A well-informed patient can engage in substantive conversations with their doctors. It allowed me to participate in my care rather than having it done to me.

Make no mistake, there is nothing easy about the path from finding out you have cancer to celebrating survival, which is like scaling a vertical wall of rock and ice similar to climbing Mt. Everest: treacherous, especially in the death zone above 26,000 feet where oxygen is near non-existent, everything matters. Not only following your doctor’s orders but understanding the “why” behind them is crucial. If you don’t understand, ask questions until you do. An answer like, “because I’m the doctor” is of little help. But from my experience, most doctors seem to appreciate an “engaged” patient rather than one who “forgets” to follow their orders. Cancer is not like a common ailment where not following your doctor’s orders gets you a stern look and the talk. It can be life or death — your life.

For me, after turning yellow and having my bile duct stented (a scraping taken during the stenting revealed my cancer), everything happened in blinding succession. After quick meetings with my surgeon, and the doctor who would administer my chemo, along with the one who would radiate me, everything happened all at once. I had a several-hour Whipple procedure to extract a 1 cm tumor sucked up to my bile duct, followed by 30 radiation sessions augmented with a chemo pump followed up with six more chemo sessions. Most will tell you “cancer-time” is surreal. So much is happening, it’s hard to keep track of all the appointments, the scans, and the tests, it seems endless and worse, never-ending. I vaguely recall my last chemo session some 10 years ago, but I still have my rather cheesy, yet cherished, completion certificate stashed away. It’s not lost on me to still be around when few see two years, and most don’t see five, making me not only a unicorn, but a multi-colored one.

Why I survived this remains a mystery, as I had no special treatment. Being far too sick, and unable to travel, I couldn’t participate in a cancer trial with some exotic yet-to-go-to-market wonder drug. Other than attributing my survival to having an experienced surgeon who I recently found out had done more than 600 Whipple procedures, it is hard to say why I have survived thus far. In trying to understand, a couple of years ago I participated in a full genetic study where they looked at 84 genes but found nothing spurious. So, who knows why I beat the odds and survived? I can tell you this unicorn is showing all his colors.

Every six months, I have follow-ups to make sure my cancer remains at bay. Nothing is easy about these things. Like most cancer survivors, I dread them, but I know they are a must. My life may depend on them finding a new outbreak of cancer and restarting my treatment post haste. I hope never to hear the second most dreaded words one can hear from a doctor, “I’m sorry your cancer has returned.” If I get those words, make no mistake, I will be back in fight mode.

And oh, by the way, I got to be there for two of my daughters' weddings when I didn’t expect to be there. I’m holding out for the third, my baby.

Most of us dread, simply dread, hearing the words, “I’m sorry you have cancer.” I did.  

The Easy Part of Cancer 

Not yet knowing the “routine”, I stood at the nurse’s long arched counter and watched them work, expressionless, their faces pressed into their flat panel displays. It was as though I was not there. They seemed to be lost in whatever they were doing. With the words still echoing in my ears, “I’m sorry you have pancreatic cancer.” I felt like a ghost.

After standing there for what seemed like minutes rather than seconds, one nurse caught my attention. She seemed happy to be there, smiling as she worked. Walking over to her end of the counter, I stammered, “I’m Bill. I’m here to get an IV set for my CT scan.” Smiling, she said, “Take a seat anywhere you like. I’ll be right over.” From then on, I always looked for, I’ll call her Emma, as she seemed to enjoy her joyless job. She sparkled. I found her radiance infectious.

When Emma wasn’t there, I sought out, I’ll call her Grace. Although I didn’t care much for basketball, she loved it and watched every single game our hometown college team played. We often joked back and forth about whether basketball was worth watching or not. While she thought her life would end without it, I thought my life would end with it as I viewed it as a waste of what time I might have left. Despite all the carnage around her, she rose above it. Always smiling. Being around her buoyed my spirit. She gave me hope when I had little.

Then there was, I’ll call her Helen, a middle-aged woman, who had gone back to school to become a nurse. She did my “chemo training”, something I recommend to anyone setting out on their cancer journey. Said simply chemo is damned scary. Untruths are rampant. Knowing the arduous trek you are about to set out on is beyond helpful in so many ways. When I had a 101-degree or more fever after a chemo session, I knew what to do. When I developed mouth sores, I knew what to do. Thankfullyother than male pattern baldness, I kept my hair. Much like that experienced guide who knows the best trails to the summit with the majestic vistas, she dragged me through my chemo. I am forever grateful for her.

Even with pale shadows of death surrounding them, both Emma and Grace, along with Helen, went far beyond what was required of them. Sadly, they are long gone. Treating us cancer patients takes a deep emotional toll. I miss each of them.

Amid fighting cancer, I often wanted to give up, but these three caring nurses got me through it, despite myself. Much like an odd combination of cheerleaders pumping me up and grizzled drill sergeants barking orders at me, they pushed me beyond what I thought I could do. Words fall far short of being able to express the debt of gratitude that wells up in me for all they did for me.

At this point, I wish I could say I was done with the chemo room, and I do mean DONE. But sadly, I’m not. Once a year, I have to go back there to have an IV set for yet another follow-up CT scan to allow me to be infused with contrast during my scan to help the radiologist see any anomaly more clearly.

While there, I always make a point to tell the nurse who sets my IV how much I appreciate all they do. Seeing dozens of people each day and perhaps hundreds per month who are fighting for their lives, some of whom the tide is turning against them, takes a brutal emotional toll on these nurses.

Now ten years into my cancer journey, from my observation, it seems the chemo nurses only last two or three years before its savagery becomes too much for them to take, and they move on. I am sure there are gallant exceptions, nurses who can disconnect from their day at the office, but they seem to be few. Seeing what they do, I doubt I could last a week if even that in the chemo room. I think it’s simply too heartbreaking to see the endless suffering week in and week out.

I’m not sure what type of person it takes to work with us cancer victims, but I doubt any of them do it for the money. Perhaps it is to gain experience. I don’t know, but my sense is these nurses care in a way most of us don’t and can’t understand. Why would anyone face the brutalness of cancer day in and day out except that they believe in helping others even when it empties them out in ways no one but them can understand. From what I’ve seen, “care-fatigue” is real. Left unattended, too many nurses burn out far too soon.

Being a nurse is a calling, but taking care of those of us stricken by cancer is a sacred calling. Nothing else can explain why someone would choose to work in a place where so many people are viscerally panicked for their lives, grasping for any hope whatsoever, flailing at times. Other than a sacred calling, I don’t know what to call it.

Sure, there are the daily wins. A patient who completes their chemo and gets to ring the bell amid a small celebration. But most days aren’t this way. Next time you are at your clinic, take a moment to look your nurse in the eyes and tell them how much you appreciate all they do. Better yet, print this out and give it to your nurse on your next visit to the chemo room. You’ll make their day a little brighter. And perhaps when they set your IV, it won’t hurt as much.

I remember my first trip to the “chemo room”.

William Ramshaw

What I Do When My Doctors Don’t Listen

Coming Alongside Friends With Cancer

The Easy Part of Cancer

How My Nurses Dragged Me Across the Cancer Finish Line

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