A few days ago, I stopped in to see the wonderful nurse who runs the surgicenter where John was prepped for his many surgeries. He was such a regular there that everyone involved recognized him immediately, even in the hallways. She used to joke when he appeared for a surgical prep, ” Mr. P!– please make yourself comfortable in our VIP lounge.”

The occasion for this visit, 8 months after John’s death, was  a photo I  discovered unexpectedly, of John in his surgicenter gown, with his  rakish blue surgical bonnet, reclining on the surgicenter bed, prior to his last RFA procedure. Next to him was this favorite nurse, with her arm draped lovingly around the head of his bed, and next to her was “our” anesthesiologist, with his arm around her. All were smiling with evident affection for each other. I knew as soon as I saw it that she would absolutely LOVE a copy of this photo.

I was right– she was thrilled to have it, said that this was exactly the mental image she carried with her of John. I moved into the bigger purpose of my visit: I wanted to ask her what she felt  were the most important things that John and I did that caused the medical personnel on our team to behave in such an above-and-beyond way. Their kindness and astonishing willingness to go way out of their way for us was truly extraordinary.  What did we do that was helpful to them? Were any of the things we did transferable to the experience of other cancer patients? How could our experience help others?

Her answer was swift. She said her #1 piece of advice to patients was:

Get informed. Know your options. Educate yourself. Speak up.

To this I would add: good doctors love an informed patient. Let me give you some examples:

Before one of John’s  more complicated RFA procedures, the anesthesiologist realized that he or someone on his team was going to have to flush John’s port. He himself had not done this in a long time and was a little uncertain about the details.  He was musing to himself that he was going to have to call one of the really experienced-with-ports nurses from another department for a quick refresher course. Because I had been taking painstakingly detailed notes all along on every aspect of John’s treatment, and because one of those  experienced-with-ports nurses had insisted that I become familiar with this process, I was able to flip to that entry in my notes and supply all the pertinent details myself– how many CC’s of what, and administered in what order.

He was not in the least disturbed to be receiving medical procedure details from the patient’s wife. In fact, I had just saved him a great deal of time and he was grateful for that.  He knew from our past interactions that we often knew more about the specifics of how various drugs worked or did not work for John than he did. Because he was a good doctor, he had no ego issues about working with us as equal partners.

Here’s another classic example, one that friends still have a hard time believing. This one involves scheduling, which is an infamous logjam in the smooth flowing of any patient’s treatment. A CT scan had revealed that there was a new tumor growing. We knew that the next step was to get an RFA procedure scheduled. Rather than sitting back for the inevitable agonizing scheduling wait, we proceeded directly to the radiologist’s office. We had no appointment. We asked to see our radiologist’s nurse. She appeared; John explained that he needed to talk to our radiologist immediately about scheduling an RFA.

Ten minutes later, we were in his office. He already knew about the new growth and was agonizing about breaking the bad news to us. John asked how soon he could do the RFA. He checked his calendar and gave us a list of his  available days, the earliest of which was just 5 days away. He pointed out that scheduling his time was the easy part, that getting the radiologist and the  operating space was the more logistically difficult aspect. He told us that our personal relationship with our anesthesiologist was the key, that he would gladly bend his schedule to fit with the anesthesiologist’s.

We went directly from the radiologist’s office to the surgicenter, where we had our dear nurse supervisor scan our  anesthesiologist’s schedule.   We compared available days, found a neat dovetail only a week away, and secured her promise to put John on their schedule for that day with “our” anesthesiologist in attendance. Then it was back to the scheduler in the imaging department, who we knew by name at this point. We explained that  we had a date on which both the radiologist and the anesthesiologist were available, that both had agreed to that date, and that we needed her to schedule and reserve the space for John. In less than 2 hours, we had gone from learning about the existence of a new tumor to being scheduled to have it eradicated in just one week.

This was all possible because we had developed a relationship of deep mutual respect and trust with our doctors. We had made it a point to become familiar with everyone who was connected with John’s care. We knew the names of our doctor’s nurses,  and of the schedulers. But even more than that, without really consciously intending to, John had made each one of them aware of the particular details of his case.

“I’ve developed another one,”

he would say confidentially to  a nurse or the very sympathetic scheduler about his latest tumor. I think that his doing this had the unintended but very beneficial effect of making them feel that they were a part of his team. They wanted him to succeed. They wanted to do everything they could to make that happen. Just as  importantly,  John and I were doing a lot of their work for them; they were very appreciative of that. It was a total win-win situation from the point of view of all involved.


About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
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  1. Charlotte Flavin says:

    Dear Rachel,
    This posting is another “winner”! Your ability to remember details are admirable; of course, making valuable notes helps. Your appreciation of staff also elicits response in kind, most of the time.
    And analyzing the results, so you can teach others, is amazing. “If you want good results, this is what you need to do: a, b, c, etc.”. Thank you for the teaching; all patients and caregivers could use this information. Sometimes the first time is uncomfortable, but with practice, it becomes easier! Aloha, Charlotte

    • surfingon says:

      Thank you for mentioning a key point, Charlotte: expressing appreciation to medical team members is vital. I’ll never forget the response of one of the ICU nurses when I brought them a box of candy and a heartfelt note about their compassion. She cried as she said, “You have no idea how much this means to us. Everyone is quick to tell us about all the things that went wrong, but hardly anyone ever thanks us.” Yes, gratitude is a very important part of the equation…

  2. Eve-lynn says:

    Hi Rachel,
    What a lovely way you have of “telling your story”, with insight,
    details and compassion and as always teaching!
    I have so many visions of you and John, as you tell your story!
    How wonderful that you are letting everyone know just how important it is to give positive reinforcement for all the “loving” things that the medical field does and not just the mistakes that are made, being humans.
    Sending you much love and encouragement for sharing your life and grief with all!
    Mahalo & Aloha,

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