Being a Professional Patient
Friday, 25 August 2017
As I have mentioned once or twice since my pancreatic cancer diagnosis, I have always said I never wanted to become a professional patient. Nevertheless, here I am doing just that and there is a surprise: some aspects are quite pleasurable.
One of those is visits to the hospital.
On Tuesday, in preparation for my upcoming six months of chemotherapy, I underwent a short, minor surgical procedure to implant a port, sometimes called a port-a-cath, under the skin of my upper chest through which the chemo medications will be administered.
(It's hard to tell in this photograph, but the port raises the skin about a quarter of an inch. I have no idea what that bruised area on my neck is although it is related to the placement of the port.)
The surgeon who performed my Whipple procedure in June was there on Tuesday to lead the team and I was glad to see him; I feel safe in his hands.
In addition, even though the nurses, CNAs, two anesthesiologists and other caregivers who looked after me were not the same people who did so in June, they were equally patient, kind, caring, knowledgeable and expert at their jobs.
Each one carefully explained the parts of the procedure that were in their bailiwick, answered all my questions in layman's language I could understand and in a situation where just about any patient would be apprehensive, even frightened, their manner made it seem almost like we were just having a friendly visit. As it was the day after the eclipse, we shared our stories about that in between the medical information.
Given the ambience they created, if it hadn't been 6AM I might have expected drinks to be served.
With this diagnosis, I entered a world almost as different from my life's experience as landing on another planet would be. It is fascinating, if you pay attention, in a way that is similar to reading Studs Terkel's book, Working, from years ago for which he interviewed many dozens of people about what their jobs were like.
A hospital is a self-contained universe expressly designed to give aid and comfort to people whose bodies have betrayed them in some manner. The people who work in that domain have their own language, their own tools, rules, rituals, practices, customs, protocols and codes of conduct.
And when you – the patient – are lucid enough, you get an intriguing peak into this alien environment. Safety is, as you would imagine, paramount. About nine or ten people came to talk with me in the curtained pre-op room on Tuesday. Every one of them first asked me to repeat my full name and birth date which they checked against my computer record.
Undoubtedly that is to ensure they don't amputate the wrong leg, as it were.
I am impressed that although my legal name, listed on all my records and documents is Veronica, they had taken the time to determine that I prefer to be called Ronni – also in my records – and not one ever missed that nicety.
Each one, too, is careful never to overstate the bounds of his or her area of expertise. When I asked an RN if it would be possible to insert the port on the left side of my chest, she deferred to the surgeon – it was his call, not hers.
When a couple of physicians were explaining the release I needed to sign, a group of nurses just outside my room were having a coffee klatch and getting quite loud. The doctors stopped our discussion, went out to quiet the nurses and when they returned, started from the top to be sure I knew what I was signing.
Some hospital personnel apparently have prodigious memories. As I was wheeled toward the operating room, the woman at the desk where I had checked in an hour earlier waved and said with a big smile, “See you when you get back here, Ronni.”
How many people had she checked in that morning? And she remembered my name?
All this accommodation is to the good and is a result of the relatively new doctrine of “patient-centered care”, a concept physicians' offices, clinics and hospitals have been developing over the last decade or so. Quite successfully as far as “my hospital” is concerned.
So if I must become a professional patient, I'm having a fine ol' time investigating hospital culture.
In that regard, here's a nugget of information worth knowing: at this hospital, operating rooms are numbered 1 through 25 but there is no number 13. Even in a place where cutting edge medicine is practiced every day, superstition remains.
It's so nice to see your smiling face this morning.
I really appreciate you writing about the hospital routine and all the different medical personnel. I personally think anyone that works in any position in the medical field are heroes. I couldn't do it.
Question, does your medical team know you write this blog? TGB is so helpful to many in many different ways.
Posted by: Linda C | Friday, 25 August 2017 at 05:49 AM
My surgeon and his team know. Maybe a few others.
Posted by: Ronni Bennett | Friday, 25 August 2017 at 05:55 AM
Ronni, I know this has nothing to do with the topic, but i just love your hair. You just look great.
Posted by: Claude | Friday, 25 August 2017 at 06:03 AM
Thank you, Claude. Yet another to add to the collection in the banner maybe. I have a terrific hair stylist.
Posted by: Ronni Bennett | Friday, 25 August 2017 at 06:12 AM
Okay, first, may I say I LOVE your hair?!! You've written about wigs before, so I don't know if this is your hair or a wig, but, whatever, it looks absolutely great! Second, anyone who can have a smile on her face and use the word "pleasurable" in any way connected with a trip to the hospital to get a central line put in....Well, you got this, girl! And, yet, I know what you mean. There is a deep pleasure in witnessing experts at work and efficiency in action, combined with professionalism and courtesy. It is grand that you have this wonderful team of health professionals on this journey.
Posted by: Patty-in-New-York | Friday, 25 August 2017 at 06:12 AM
I was just writing "Wow, your hair!" when I saw Claude's comment come in. So that's two of us but I'm sure there'll be many more. May I just add "That smile rivals Monna Lisa's!"
So very glad you are in such good and kind hands ... and "lucid enough" to observe ... and generous enough to share with us.
Thank you, Ronni
Posted by: laura | Friday, 25 August 2017 at 06:16 AM
Such wonderful examples of the goodness of humanity right there! Treating patients as the people they are with warmth and compassion makes my heart happy. I am so glad you are getting the care you deserve.
Thank you so much for posting this. It makes me much less fearful should I ever need hospital care.
All the best for your journey to wellness!
Posted by: Diane | Friday, 25 August 2017 at 06:22 AM
No wig - that's my hair although it's sparser at the crown you can't see. They told me during a tour of the chemo clinic that I probably won't lose my hair although it may get a little thinner.
Posted by: Ronni Bennett | Friday, 25 August 2017 at 06:31 AM
You are taking away a lot of fear of the unknown for a lot of us. So, that's what you look like-adorable.
Posted by: Susan rogers | Friday, 25 August 2017 at 06:57 AM
Still thinking of you, admiring you, and sending TLC through the ether to your side, Ronni.
Posted by: Cile | Friday, 25 August 2017 at 07:31 AM
Thank you for posting a photo of yourself. It's good to see you looking so well, even though a bit bruised from your battles. Keep fighting the good fight.
Posted by: dkzody | Friday, 25 August 2017 at 07:38 AM
Your blog is such an important one for me. No I'm not having health problems, but I'm elderly, don't you just love that word, and I know that there will be things in the future to deal with and seeing how you've handled this is both amazing and inspiring. Please keep taking us on your journey.
Posted by: Janet | Friday, 25 August 2017 at 07:43 AM
Ditto to all the above comments. You do look great and ready for the next challenge. It's heartening for us all.
Posted by: Norma | Friday, 25 August 2017 at 07:43 AM
You look great! Love the hair! You've stated a good reminder for all, that whatever we're going through, it's good to be engaged and interested in it. And I'm so glad that a good bit of what you're going through is pleasant, encouraging, and reassuring. Of course a lot of that is because of who you are, how you engage with the world around you.
Posted by: Salinda Dahl | Friday, 25 August 2017 at 07:47 AM
First, I love your hair! Looks fantastic on you... Second, I don't know which hospital you are in (if you mentioned it, it's lost in my head somewhere) but if it has 25 (wow!) operating rooms (or 24, as the case may be) it must be a BIG PLACE! To receive your level of personal service seems even more special to me. Good luck with the upcoming weeks of chemo. I hope it goes easy for you.
Posted by: Kay | Friday, 25 August 2017 at 07:50 AM
What a lovely woman you are! Your photograph (thank you VERY much) says it all. As beautiful outside as inside. And with lots of guts! I admire you greatly!
Posted by: Another Dee | Friday, 25 August 2017 at 08:19 AM
You are gorgeous! Terkel's Working I read slowly when it was first published decades ago ... to make it last. Among the books that shaped my worldview, that every worker (person) matters.
Posted by: Tamar | Friday, 25 August 2017 at 08:21 AM
Great post, as always. Glad you have such a great team! But you didn't mention the wonderful DRUGS they give you for this procedure! I talked a blue streak to the nice surgical team, didn't feel any pain and I think I told them my entire life story!
Posted by: Kathleen Noble | Friday, 25 August 2017 at 08:32 AM
As in the comments of all - it's nice to see your smiling face, and appreciate you keeping us informed.
I'm pleased to know that some members of your hospital team are aware of your blog and I hope they check in on it. To read your perspective and those who comment can be a wonderful learning experience for them. As an RN, now retired, I know I would have appreciated the importance of knowing the patients point of view.
We're all by your side as you take this journey.
Posted by: Lola | Friday, 25 August 2017 at 08:38 AM
The port eliminates the poking probing for a vein to administer the chemo etc. It does make that treatment a bit smoother. Power on...you look wonderful !
Posted by: Kate R | Friday, 25 August 2017 at 08:43 AM
You look tremendous! I second Another Dee's comments.
Posted by: Priscilla | Friday, 25 August 2017 at 08:57 AM
I agree with the others regarding the stylish, terrific hair 'do' of yours. You look lovely. Overall, you look great in the way you're reflecting a solid, warm, "I'm right here and nowhere else" attitude.
Good to read of your hospital experiences and that they don't treat you in a patronizing "There, there, dear.." kind of way, but rather with professionalism mixed with a personal touch and efforts to make hospital visits less worrisome. That must be especially welcome when you're dealing with many personnel each time.
They're likely looking to ease the blood pressures that rise with each step to their place of work and are mindful of keeping the patients in a positive atmosphere.
And your sharing this does ease anxiousness about the medical intensity of a hospital - that for each of us, we won't be faceless or nameless either during important procedures.
Keep on keepin on....
Posted by: Simone | Friday, 25 August 2017 at 09:00 AM
Beautiful you!! Thank you for this glimpse into the medical world from inside your heart, or at least your port. <3
Posted by: jeneane | Friday, 25 August 2017 at 09:19 AM
You'll love having that port, especially if your veins are easily irritated and/or you don't like needle sticks. That spot on your neck is where they made a tiny cut to feed the port's catheter into an artery. (A thin catheter runs under the skin from the port to the artery in your neck.)
My team at Univ. of Colo. was just like you describe. It's not like going to the hospital; it's like going to see a bunch of friends who know you and what you're going through, who care about you, and can answer your every question. My 8-yr-old granddaughter, on several occasions, baked cookies or cupcakes for them.
And my goodness, you look great. All bright-eyed and bushy-tailed. You go girl!
Posted by: Susan R | Friday, 25 August 2017 at 09:31 AM
What a great picture! I love your smile and your hair style.
Posted by: Frank Paynter | Friday, 25 August 2017 at 09:35 AM
Happy to see that your face look so well.
Good that you are taking this next stage with good spirits.
Posted by: Beatriz Redko | Friday, 25 August 2017 at 09:53 AM
Thank you Ronni for this post - you are very fortunate to have such good care. In today's world, with all the conflicting priorities in the health care industry, this in itself is a blessing.
As others have said, you look great! Keep up the good work - being a good patient and great elder blogger and activist!
Posted by: Jane | Friday, 25 August 2017 at 09:53 AM
Ditto how great you look! I had the same experience with cataract surgery--great care in making sure of my proper identity, the proper eye, etc. Friendly staff, my doctor explaining every move as I watched the light show. My eye drops arrived by mail long before the surgery. All my appointments were arranged in advance, and I got reminder calls before each. Altogether a good experience.
You, meanwhile, are amazing.
Posted by: Anne | Friday, 25 August 2017 at 10:04 AM
Dear Ronni, since being introduced to your blog in June, I've read it daily--through your e-mails--but I leave a comment only once a week. Today, I found the hospital routine so interesting. Like you, I've recently discovered just how wonderful and thoughtful and caring the hospital personnel is. I'm glad it's being the same for you. Peace.
Posted by: Dee Ready | Friday, 25 August 2017 at 10:35 AM
Echoing what others have said about the hair -- it's a lovely and sort of perky, yet elegant, look for you.
The details you're providing through all your cancer saga are very interesting and I feel like they've improved my general feelings about medical facilities. I am aware that hospitals have worked very hard over the past couple of decades, to improve themselves in almost every way, and there is a lot of growing competition (in my city of just under 150,000 there are currently no less than six medical facility projects underway, and a couple of them are quite large, with one being the largest financial investment ever made in this community) so there are many incentives to provide the best patient experience possible. However, I also like to believe that people in all areas of human services are growing in knowledge, understanding and compassion. I'm sure that there are some out there that are simply in the wrong field and can't or won't do anything about it, but it does seem as though the human spirit may be evolving towards greater kindness and empathy. Wouldn't that be something!
Posted by: Cathy Johnson | Friday, 25 August 2017 at 10:47 AM
Your new hairdo definitely needs to join those on the banner, if possible. You look mah-velous! I would neither act nor look nearly as great as you do under similar circumstances.
I detest hospitals and most things medical, so it's good to know that care facilities like yours exist. When I have to go to the doctor, I more or less expect to be viewed as just another old person--or Number 581***--although that doesn't happen as often now, thank goodness. They have to attach a name to the number for safety's sake if for no other reason. The Medical Industrial Complex, I call it, but I realize that there are exceptions and that good care IS out there.
Best wishes for a "smooth ride" through the next phase of treatment. I'll look forward to your blog--however often it shows up.
Posted by: Elizabeth Rogers | Friday, 25 August 2017 at 11:16 AM
Must add my own appreciation of your great looking smile, hair do, and showing us your port! Good going! And your experience having been so positive with the hospital personnel is an extra special bonus. Continue to heal!
Posted by: Barb Rogers | Friday, 25 August 2017 at 11:28 AM
After reading your post, where you remark about no 13th Operating Room, I looked down to see that there were 13 comments -- so I'm number 14 in the queue... funny coincidence!
You elected to take the portal -- Far Out! My husband chose not to get a portal because he thought it might be dislodged while he was sleeping. As a result, two of the veins in his arms became occluded and very painful. He had no idea how painful it would become and I'm sure he has re-thought his choice, but what's done is done.
I, too, admire your hair. And I recall your tale about your stylist, so if you'll just send him to my house, he can work his magic on my "do"! My hair is falling out in clumps every time I wield a brush at it -- and I haven't had chemo or radiology. I have always had thick hair, but not anymore. As soon as menopause hit, I started losing it... And here I was, all complacent that I wouldn't have that worry -- well, not anymore...
Glad to hear how well you're doing and how well the hospital personnel are treating you. My husband had the same sort of treatment and the other patients were all pleasantly surprised at how warm and friendly everyone is. And how willingly they answer all your questions... It's a far cry from how hospitals used to be and a change for the better.
Posted by: Teresa Giddens | Friday, 25 August 2017 at 11:31 AM
Add me to the list of people who like your hair!
Your docs seem like a dream team! That is lucky. My former cardiologist moved to your area, I wonder if he is at your hospital? I can't remember his name at the moment.
Posted by: kenju | Friday, 25 August 2017 at 12:17 PM
OHSU is the best. They treated my sister exactly as you have described through her treatment, and respected my commitment to stay with her both day and night. The Knight cancer unit even has a built in bed in the patient's room and sleeping rooms on the unit if more than one person is staying. It's all the kind, little things that make the big hard thing doable.
Posted by: Bonnie Ringen | Friday, 25 August 2017 at 12:34 PM
I'm afraid it falls upon me to be a contrarian to Ronnie's post as well as all the comments so far. Not about her hair, though, nor about her attitude, courage, strength, and ability to write so beautifully and with such clarity about difficult matters, but about the subject of that writing: Hospitals. My hospital experience, fwiw, was different, to put it mildly. Also, the hospital experiences that IRL people have shared with me have been - not always but often - similar to mine. I've even heard a few horror stories much worse than my own.
Question: Since Ronnie wrote in the comments that hospital personnel were aware that she is writing this blog, is it possible that she is getting VIP treatment similar to restaurant reviewers who get better food and service if they haven't successfully hidden their identities when inspecting a restaurant? That's not a rhetorical question; I'm really asking.
My unhappy experience in a hospital was twenty years ago, so it's possible that things have changed as Ronnie wrote that they have, but I'm a little dubious.
Dubious, because of two key differences between Ronnie's situation and mine. When I broke my leg, I did not have insurance and was sent to the closest hospital which was a for-profit one, not like Ronnie's which I have read is a not-for-profit, highly regarded institution. Most people are not as fortunate as Ronnie to be able to be a patient in such a fine hospital. Many people, as we are all too well aware these days, do not have decent - or any- insurance or receive pauper's medical care, i.e. Medicaid.
As for my hospital experience, suffice it to say, I was rudely treated by the X-ray technician and then billed $500 for one simple old-fashioned X-ray (20 years ago) because the X-ray included an exorbitantly priced, unneeded, duplicative interpretation by a radiologist, unneeded, because, as the orthopaedist admitted, he was quite capable of interpreting an X-ray of a simple fracture by himself.
Posted by: Allan Geng | Friday, 25 August 2017 at 12:45 PM
Your hair looks fabulous as do you! I admire your ability to continue to write and help others. Your attitude is sure to have a positive impact on your full recovery!
I didn't think your blog could get any better but I was so wrong, you will reach so many people with your take on fighting cancer! We are all out here pulling for you!
Posted by: Judith Eton | Friday, 25 August 2017 at 01:02 PM
Ronni, LOVE that hair.
People might think that's a shallow thing to be concerned with when battling a serious illness, but for me, there's no better time to have terrific hair. It gives an added boost of confidence when the wearer is feeling most vulnerable. And confidence always help when you've got to deal with a succession of strangers at a time when you're scared and feeling bad.
I have had similar experiences (which I did not expect) with medical and dental personnel. They ARE mostly a lot nicer than I remember from 20 or 30 years ago. You still have to chase them (now through a phone tree, alas) to get simple questions answered, and the costs are terrifying, but hands on, a lot of these folks are great.
Posted by: Paula | Friday, 25 August 2017 at 01:03 PM
I have a friend who is also struggling with cancer and the after effects of chemo. She doesn't blog as you do, she posts on facebook.
Bravo to you, this is the most relaxed I've ever seen you.
Posted by: Mage Bailey | Friday, 25 August 2017 at 01:14 PM
Oh, what they all said about how terrific you look!!
And, big hugs!
Posted by: Kate Gilpin | Friday, 25 August 2017 at 01:30 PM
You're a looker! You're a writer! You're a patient! You're a winner!
Posted by: Regina | Friday, 25 August 2017 at 02:01 PM
Thank you so much for your "as Is" photo. My immediate thought was "Still Standing!"
It has been an honor to share this journey with you......even before this challenge.
(And I, too, love your hair!)
Posted by: Ann | Friday, 25 August 2017 at 02:59 PM
I fifth or sixth or whatever it is on the hair. You look great!
Posted by: Carol | Friday, 25 August 2017 at 04:35 PM
Before I tell you how great you look, I wish to refer the following comment to Miss Linda, way above.
Linda, you mentioned "elderly". I hate to tell you this, but I've read recently that there Is a new terminology for the "elderly" these days. If one is 90 yrs. old or older, she/he is called the "oldest old". So much for ageism.
And you really do look great. Your smile tells such a positive story. Keep it up, gal!
Very best wishes, Estelle R.
Posted by: Estelle R. | Friday, 25 August 2017 at 05:43 PM
Like the twinkle in your eyes! Glad to hear all is going so well with your hospital experience -- that staff carefully making checks you are who you are, plus that you know it. There will be plenty of time in the future to explore any possible differences in health care others might experience, but for now.....you simply concentrate on your experience!
I expect your attitude, ability to be honest, direct and forthcoming helps make it easier for staff to interact in kind with you. If you have moments when you are otherwise they will have compassion and understanding that we all get out of sorts sometimes. Am confident their caring is genuine, having worked in several hospitals with a wide variety of professionals. Am continuing to send well wishes your way.
Posted by: Joared | Friday, 25 August 2017 at 07:07 PM
Grand to see this latest manifestation of the Ronni we've come to know and appreciate.
Posted by: sflichen | Friday, 25 August 2017 at 08:07 PM
What a beautiful talented woman you are! Your sharing of your journey is wonderful Cancer
is a scary place. And yea, I too found all those that I had to deal with must be the most loving giving people in the world. God bless you on the journey your on.
Posted by: Ruth | Saturday, 26 August 2017 at 05:52 AM
I know this is beside the point, Ronni, but you look GREAT!
When Dad had his stroke, I felt thrown into this strange universe. Strange language, environment, people and procedures. Altho it was a world dealing with people at crisis, I rarely exhibited warmth. I felt that the institution's needs took priority. I actually wrote a letter of complaint to the VA but I could've written letters of complaint about other hospitals.
I am happy you are having such a positive, caring and empathetic experience. This is the way it should be.
Posted by: NatashaM. | Saturday, 26 August 2017 at 08:31 PM
Great essay. Anyone who has gone through this knows. Anyone who had not, needs to know. You painted a true, caring picture of what the medical profession does to keep us comfortable. Your attitude is the best and will save you in the long run. God Bless.
Posted by: Granny Annie | Sunday, 27 August 2017 at 08:04 AM
You look great Ronni. OHSU took excellent and loving care of two of my sisters when they were treated for breast cancer. They both have done well. I am so glad you are being treated at that good place. I think of you often.
Posted by: Celia Andrews | Sunday, 27 August 2017 at 11:07 AM
P.S. I misspoke, above. The catheter goes into a vein in your neck, not an artery. But you probably already knew that.
Posted by: Susan R | Sunday, 27 August 2017 at 03:58 PM