Brighton Up My Day... Will Ya!

Out of the blue I decide we need a family day out in Brighton. The heat in central London the last few days has been ridiculous and we need too cool off. Seeing the sea was a welcoming sight, having a paddle was bloody fantastic! 

We also found time to go to www.choccywoccydoodah.com. The cakes there are choccylicious. I bought Sophia a very large chocolate coin and she wuffed it down.

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I'm Back and Ready to Zap!

When I arrived at the hospital I was in search of laughter. Changing into my sexy hospital stockings I walked up and down doing a modelling type pose saying to myself this is the latest creation by The big E hospital. To me to beat this bastard I needed to laugh, not dwell, but none of the other patients were in a laughing mood. Finally my oncologist turns up to talk about what she wanted to do and to reassure me all would be fine..

My first stop off point was the ultra sound room to have one wire guided excisions fitted in each breast. I had a wire excision done in 2010 for my last lumpectomy on my right breast, so I was well prepared. To me having small breasts is a blessing when it comes to having these wires being fitted. Then the radiologist had to find the little 3mm area of cancer that was hidden 2cm into my armpit. This small lesion was between my LD recon and the top of my pectoral muscle. It was explained in detail by my oncologist who wanted to see it for herself. She so wanted to surgically remove it but to do so she could destroy blood vessels and nerves supplying the reconstructed breast.

The only choice we had was to wait and see if the chemotherapy would destroy it. If not then the recon would have to be taken apart which my oncologist is so desperate to avoid. In her eye she thinks it is a lymph node and the chemo will flush it out any rebel cancer cells.

Once all had been dissected and discussed between the radiologist and oncologist whilst I lay listening on quietly. I could honestly say this ride I was on will not be easy.

It was not long before I found myself laying on yet another theatre bed whilst people tried to find veins and rig me up the heart monitors etc. I have plenty fat juicy veins that never stay still, but the anaesthetist had come up against another dilemma both left and right breast were being operated on, so he wanted to fit a cannular into my foot. I instantly said but that’s near the bone and it will hurt, so expect some cussing. The anaesthetist tried to reassure me it would be fine, but I am not daft. Rat feet and needles minus pain does not happen. They decided after one attempt with me wincing and gritting my teeth with pain. The anaesthetist would fit that particular cannular once I had been put to sleep. It took two attempts to fit a cannular in the back of my hand, but I soon was in the land of nod...

It took me quite some time to wake from the anaesthetic, but all went well considering. Once wheeled up onto the ward and do the usual eat and drink pass urine etc. I was released to go home at 6.30pm with a bag of pain killers and follow up appointment. With a goodnights sleep I am ready to go.... 

Waking up to my young daughter blast out Cheryl Cole and singing ‘We are, who we are, we are’ and knowing that she has a memory of meeting her in person makes me smile. To me that is the best bit of therapy I could of created. Every time I see a movie I can say well yep she met that person and we can talk about it, not the cancer. Yes I may lose my hair and I will feel I’m going to the pits of hell and back, but I also know it will not just be me affected by the visual side of having cancer.

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Hiking & Hospitals: "Like a Box of Chocolates..."

A chance encounter on the Trail
in Pennsylvania

Nick & Jess at Springer Mountain
outside Atlanta, starting their 2,149-mile hike.

"...you never know what you're gonna get." 
        --Forrest Gump
                                                
In March 2012, our oldest kids, Nick and Jess, embarked

The stuff that went into Nick's pack

on a 2,149-mile through-hike of the Appalachian Trail.  Nick had spent months researching how to have the best Trail experience. With painstaking attention, he identified and assembled just the right tools to handle rain, blisters, navigation, food, first aid, cold, heat, and the occasional bear or rattlesnake. Thankfully, hiking the AT is a pretty safe undertaking. A death on the Trail is rare enough to be big news. No doubt one reason is that most hikers follow the Boy Scout motto: “be prepared.”

In hospitals, nearly three hundred people die every day from infections they didn’t come in with (including my father, in 2006). Thousands more die from medical error. So here's the question: before entering the hospital environment, what kind of preparation would you do? What tools would you bring?

"Come on," you say, "I'm the patient. That's not my job." True. But we wear seat belts in planes, and life vests on boats. Because things happen. It's the same in hospitals. Only worse.

The people who provide us with health care have an arsenal of "tools" proven to prevent these deaths, like being faithful about using good hand hygiene, checklists and contact precautions (to guard against the spread on infection). But they don't always use them. Why? Sometimes our caregivers are busy. Or they forget. The real problem? Pretending that human beings can practice medicine without mistake. They can't...no more than a pilot can be expected to remember every pre-flight detail without a checklist, or an Olympic gymnast can stick the landing every single time. Perpetuating the myth of perfection in medical care--defined as not doing the stuff we know works--is what one reporter described to me as "willful ignorance". 

Last week I was at a meeting involving the federal Partnership for Patients in Washington, DC. The room was filled with folks from best-intentioned hospital groups and other stakeholders who'd signed on to spearhead innovation in "patient-centered care". One at a time, they took the podium to report their successes (impressive) and challenges (substantial). They spoke of "tool kits" nurses and doctors use that ensure optimum care, and "bundles" (practices combined with tools, like those for proper IV insertion). These tools and bundles standardize routine tasks, and reduce variables that can make patient care unsafe. At the end, I couldn't help but ask "where's the "bundle" and "toolkit" for patients to use when they're stuck in that bed? Where is the tip list of how their own behaviors can impact their care? Where's the education that tells them not to touch their mouth with unclean hands, because that's one way they can get a C.diff infection? Where's the hand cleaner at the bedside? The notepad and pen for when the doctor explains test results?"

Susan Frampton of the The Planetree Hospital system stepped right up. (If you've never heard of Plantree hospitals, think beautiful, healing environments where the patient and family are also the core of a team.) Susan pointed out that there are lots of tips and lists available to patients and providers free on their website. Then a woman from The Leapfrog Group (a big health care quality consultancy) came up to me and told me Leapfrog has a bunch of packets with hand sanitizer, notepads and pens just waiting for distribution. They're not quite sure how to get them to patients. (I'll be following up and will let you know how to get them).

The bed table holds your personal "world" in the hospital.
What tools should you have with you?

Meantime what's a patient to do TODAY? 

Here's a radical thought: it's time for us patients to step up. In addition to researching your own medical condition or diagnosis (do I even have to mention that?), read up on hospital-acquired infections and medical harm. Ask if the tools mentioned above (hand cleaner at your bedside, notepad and pen, handouts about infection risk, etc.) are provided in your hospital or nursing home. They are? Yay! If they're not, well, as in any business, if customers request an item often enough, it may just start appearing. Until that happens, bring the stuff yourself.  Make sure the patient you care about has access to these items (that they don't end up in her water basin, moved across the room). Make sure you have your cell phone and charger with you AND an extension cord. Don't share magazines and books with other patients--and don't touch theirs--unless they've been thoroughly wiped down (dangerous germs linger on these surfaces).  Be vigilant about making sure the bed table doesn't get rolled away from you, because everything precious to you could get moved out of reach in an instant. Don't leave any personal item on the dinner tray. Many patients find that's how their stuff ends up thrown away in the kitchen trash. 

August 3, 2012
2,100+ miles later, Nick reaches Mt. Katahdin in Maine
(Jess is a few weeks behind, hiking with friends).

Will this solve every problem in the hospital? Not by a long shot. But it gives you as a patient a role to play in your care, and a degree of control in a place where too often you have so little. It will bring your eyes, ears and voice into the equation. It might just make things safer for all patients in the long run. 

Even in state-of-the-art hospitals, with the best caregivers, "you never know what you're gonna get". Why leave things to chance? As my kids learned trudging through snow, swamps, lightning and downpours, bad drinking water and tangled lines, the right tool at the right time can make a big difference.

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Who am I?

When I started my blog it was not to gain attention, but a tool to look back on. To me it highlights even when people say you are wrong, you are really right. No-one goes in search of cancer because cancer is our cellular make-up waiting to erupt. There is no magic button that can be turned on and off to this disease or at least not yet. But by me saying over a period of time you know I hope they have not missed something has left me open to more than one critic.

I am a women who knows her own mind and body. And I am not ashamed to admit the fact I knew my clash with cancer was not quite finished. After my recurrence diagnosis some people have said, but Sarah they cocked up. These people in some cases have been the very people spouting their mouths off about me wanting the full treatment which is harsh to say, but it was their reality of what my journey had become. Now all I receive is messages of I hope your treatment is not too bad. And I know your strong and you will get through this, but what if I don’t? What if I am not strong? People neglect the fact I am human with feelings, and right now I am lost because my fear has become my reality.

The path I am on now relies on one little plant called the Periwinkle. That plant innocent like myself that just wants to thrive in some forest is being propagated and cut up. It is seen as the saviour, but with deadly consequences a bit like me when I express my opinion on my blog. It’s origins are from the place where ring tail lemmas’ salute you with their tails.. a bit like the middle finger... The Madagascar Periwinkle produces vinca alkaloids that when injected into your artery targets those fast growing cells we fear, but also targets our vanity. It leaves a wake of destruction within our body by destroying anything that remotely resembles a cancer cell that includes hair. This is chemotherapy...

Did I go in search of that innocent plant.... to my critics’ No! Because who would want to destroy something so delicate.... yet so deadly.

On a lighter note I took myself for one whole day away from the prison I call home. Sophia’s needs still have to be met and my worries I have to encase behind a defiant smile, so into central London we go. First stop is Notting hill with a brisk walk down to Queensway. We stop off at the Spar and get a bite to eat and continue our journey into Kensington Gardens. We pass our grumbling tree and say hello followed by a couple of pictures to record our day.

Then to the round pond to give the remainder of our snack to the swans who were very grateful.

From there we follow the path down to the Serpentine to get a good gander at an Olympic marathon swimming race that was taking place.. Go Team GB!

Do take note of the no bathing sign in the image Pmsl!!!!

And grassed on two pick pockets that were eyeing up some women’s bag and mine to a lovely policeman. Once I had finished my civil duties I and Sophia walked along the Serpentine until we saw the Diana memorial Fountain. Sophia could not resist going for a paddle in its freezing waters, again another picture.

After 30 mins I encouraged Sophia out of the water to continue our walk down towards Knightbridge. As we walked I came across the Olympic Shop, so in we went for a nosey. We could not resist having a picture done with both of us holding an Olympic torch. Get in there!

Meantime I had arranged to meet up with a friend to chill out, so off we went walking through Hyde Park to Marble Arch. A stop off at Maccy D’s for some refreshments and toilet. There I meet my friend and after a little rest we head for the science museum, so we cut back threw Hyde Park heading to the Royal Albert Hall on foot. What should of taken 20 mins took 40 mins because a lot of the paths were closed to the public due to Olympics. Once we had reached the Science Museum we had to go in search of more refreshments, so we find another  place to sit and eat. Finally we arrive at the Science Museum and Sophia takes off into its galleries touching buttons and gadgets. I even get to play on a few bits myself. We go upstairs into the Who am I gallery... This is where I find my innocent little plant called the Periwinkle... Now that was a long damn walk to find out what will be coursing thru my veins don’t you think.... J

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If IKEA Designed Health Care: 9 Ways It Would Partner With Patients

Truth time. I've learned way more about being a hospital patient (and advocating for one) than I can jam into my website for the Patient Pod. I'm also fascinated by how enterprises get to the top of their game, delivering on quality, satisfying customers consistently and affordably --- couldn't health care be more like them? (Loved Atul Gawande's piece on what health care can learn from the Cheesecake Factory's approach to delivering quality and consistency.) 

I smooshed these two passions together and wrote a book.

 If IKEA Designed Health Care: 9 Ways It Would Partner With Patients will be brought into the world by Morgan James Publishing.  Below is a bit about why I wrote it, and how I think it can help. You can pre-order the book (and really get me excited) by going to my Kickstarter project  here. I'm really hoping we can get a whole new conversation going.

Thank you, my friends.

**********

Know anyone who had a bad encounter with the US health care system? My father sure did. Losing him to an infection in the hospital changed my life. We lose nearly 600 people to medical harm every day, even as the cost of care in this country is zooming toward 20% of our GDP.

In years of research (I was a news reporter most of my life) I figured out how badly consumers' eyes, ears and voices are needed if we're going to fix health care. But no one is more helpless to participate than the hospital patient, stripped of everything he owns. I created a Patient Pod that equips a patient at the bedside with tools to clean their hands, communicate with their world and keep their stuff at hand.

The Patient Pod gives you a face and a voice in medical care

In designing the Patient Pod to be intuitive, understandable & affordable, the name IKEA kept coming up. IKEA is the biggest furniture company in the world. They base their global success model on a shared value proposition with customers from Riyadh to Reykjavik, to Round Rock, Texas: YOU share in the work, THEY provide stuff that satisfies your needs, at prices you can afford, and pass along the savings to you. What a concept in health care! That's how the idea for If IKEA Designed Health Care: Nine Ways It Would Partner With Patients started to take shape. I also found the IKEA story fascinating on its own --- A teenage boy selling pens in a poor town in Sweden, going on to build one of the biggest empires in the world. (FYI I have no affiliation with IKEA).

Below are chapter titles. The book has been professionally edited. I need to pre-sell the book to launch it ---and would love your help! Every day that passes is one more day the information could have helped someone in medical care.

If IKEA Designed Health Care…

1.      We would always feel welcome

2.      Instructions would be understandable to a 5th grader

3.      A cool, one-stop website would help us learn, connect, and plan

4.      We’d get tools for success when we walked in the door

5.      We customers would have to roll up our sleeves and help

6.      Prices would be clearly marked…and we’d pay our own bills                

7.      The team that serves us would act more team-like

8.      Hackers (the good kind) would thrive

9.    It would live to Innovate

In the book, Michael Graves (world-renowned architect and Target Stores product designer, now in a wheelchair) talks about his crusade to bring good design to health care. Cynthia Leibrock, the "guru" of universal design, gives you her best advice on how to fix your house so you can stay out of "THE HOME". We hear from top docs like Peter Pronovost, Atul Gawade, Don Berwick and Bob Wachter. Plus heartbreaking stories from my friends and patient advocate colleagues who lost children, or suffered unimaginably, because they didn't know in real time how easily harm can happen. You'll learn your own set of "best practices" from them.

I hope this book will bring us into a common mental model --- partnering to create better health care.

Read on for the first few pages of the Preface. 

       If IKEA Designed Health Care: 9 Ways It Would Partner With Patients                      

(© 2012 by Pat Mastors, All Rights Reserved)

I’ve always been the type that wants to save every little injured or endangered creature I find. I’ve snatched mice from the jaws of my cats and stopped traffic to shepherd turtles and ducklings across the road. When my daughter brought me a baby hummingbird with a broken wing, I laid it gently in a bed of grass clippings and drove it to the wildlife animal clinic. (Sadly, they could not save it.) 

Suddenly, animals started turning up dead in my yard day after day. We’d put in a swimming pool for the kids. Every morning I’d lift the skimmer cover, braced to discover what hapless new creature had come here for a drink, only to get sucked into something much bigger than it bargained for. I had rescued countless frogs, toads, salamanders—even a snake. (We lived in the woods after all.) But mice and chipmunks never had a chance, as their swimming skills were not the best. Imagining their final, desperate struggles, I knew I had to do something. 

I squatted down to surface level (or eye level, for a furry little thing paddling desperately for a way out) and took a good look at the world from a mouse-eye view. No nook or cranny offered a foothold. Even the steps were under five inches of water. But it gave me an idea. I scrounged in my garage and found the lid from a Styrofoam cooler. I poked a hole in the corner, threaded a piece of string through the hole, and tied it to the pool ladder. Anchored to the edge of the pool, floating on the surface, maybe it would provide those struggling animals with a way out. 

 The next morning, when I lifted the skimmer cover and peered inside, nothing peered back. It was the same for the rest of the summer, and it’s worked every summer since. With a small change to the physical landscape, the pool had stopped being a death trap. Bottom line: give it a simple tool, and even a rodent with a brain the size of a jellybean will work like hell to save itself. 

 As hospital patients, how easily we become that hapless mouse. We find ourselves in an environment that, to outward appearances, is life sustaining, but which can quickly grip us in a confusing and frustrating battle for survival. We’re isolated from all that’s familiar and known, uncertain which direction is the right one. And the more we struggle, the longer we’re “in,” the weaker we get, and the greater the risk we’ll never get out. 

The chance of being killed in a hospital per patient day is greater than the chance of being killed during the height of battle in Iraq per soldier per day. According to the Centers for Disease Control (CDC), more Americans are killed in hospitals every year (99,000 from hospital-acquired infections alone) than during all the years of the Vietnam War (58,000). A government study in November 2011 concluded that 1 in 7 Medicare patients suffers some kind of harm in the hospital, and that 1.5 percent of these adverse events contribute to the patient’s death. That’s 500 Medicare beneficiaries killed every day of the year. 

"Did you know that a checked bag on an airline flight is still exponentially safer than a patient in an American hospital? It is not very comforting to consider that a toothbrush has a better chance of reaching its destination than a patient has of leaving a hospital unscathed. This begs the question…why? ... The primary reason it’s so tough to change the system is that no less than the culture of medical practice has been challenged and is, in effect, resisting change. This is cultural inertia, the ‘This is the way we’ve always done it’ syndrome, yet the root cause of poor patient safety performance lies squarely in the mythology that human perfection in medicine is achievable—the presumption that humans can practice without mistakes."

 —John Nance, aviation and healthcare consultant, Why Patients Should Fly: The Ultimate Flight Plan to Patient Safety and Quality Care 

 “Health professionals are dedicated, smart, highly trained, motivated people. But working together in hospitals, they’re the fourth-biggest public health hazard,” says Brent James, Chief Quality Officer at Intermountain Healthcare. In fact, medical harm deaths in the US surpass only those from heart disease, diabetes, and cancer, according to the CDC. 

 Several years ago, my father became one of these statistics. Late at night, he got out of bed to use the bathroom and tripped, falling down the stairs. An operation to fix a resulting neck injury ended with his death in the hospital six months later, from complications of an infection called Clostridium difficile, or C. diff, caused by a germ that’s very common in hospitals. I didn’t know much about this infection at the time. I’ve since studied it quite a bit, and it’s pretty scary (more on that later). 

Dad with our son, Nick

Dad had always been a fiercely independent man. I felt helpless watching his health and his spirit erode during what turned out to be the last months of his life. Gone were his autonomy, choices, and dignity. Not because of anyone’s deliberate behavior (every one of his caregivers was professional, and many were very kind), but because that’s how it is, too often, when you’re a hospital patient. 

And apparently, it doesn't matter what circles you move in or how well-connected you are. Don Berwick, MD, founder of the Institute for Healthcare Improvement, found this out firsthand after his wife Ann developed symptoms of a rare spinal-cord problem at a leading hospital. As reported in Time magazine: 

"…His concern was not just how she was treated; it was that so little of what happened to her was unusual. Despite his best efforts, tests were repeated unnecessarily, data were misread, information was misplaced. Things weren't just slipping through the cracks: the cracks were so big, there was no solid ground…[For example] an attending neurologist said one drug should be started immediately, that “time is of the essence.” That was on a Thursday morning at 10 a.m. The first dose was given sixty hours later, on Saturday night at 10 p.m. ‘Nothing I could do, nothing I did, nothing I could think of made any difference,’ Berwick said in a speech to colleagues. ‘It nearly drove me mad…No day passed—not one—without a medication error.’ If that could happen to a doctor's wife in a top hospital, he says, ‘I wonder more than ever what the average must be like. The errors were not rare. They were the norm.’ 

—“Q: What Scares Doctors? A: Being a Patient,” Time, April 26, 2006 

If someone like Don Berwick can have such problems, where does that leave the rest of us? In a pretty vulnerable place.

The patient’s active participation and partnership have never been more critical. Says Atul Gawande, MD, a surgeon who writes about quality in health care, “I think the most important part the patient plays is not being passive about their part on the team. We [physicians] are not great at drawing out the patient; we've wanted the patient to be passive and not so involved, just do what we say…I think what we're learning is, the patients play a key role.” [1]

If that’s true, then like the mice in my pool, patients like my father need strategies that empower them to take on a more proactive role. Maybe they’d be more successful if the instructions they received were written at a level they could understand. Maybe less harm would occur if the culture of the medical world was less about hierarchy and more about teamwork. Maybe putting a few simple tools at their disposal would help them help themselves. Maybe patients would make better, more practical choices if the cost of care was transparent. And maybe there’d be better results if patients themselves were expected to work toward the creation of good outcomes, rather than continuing in their historic role as passive recipients of care.

As I would later come to see, these are precisely the guiding principles that led the IKEA company to achieve global success as the largest furniture retailer in the world.

[1] Doctor’s Orders: Don’t Stay Alone in the Hospital, Bigthink.com, January 19, 2010

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If You Have Doubt Bloody Shout!!!

When you hear the word recurrence you do think the worst because it is the same high grade cancer, but once the fuzzy cloud has shifted out of the way and logic kicks in my fear turns into, ok what next. Thankfully the team that are dealing with me are on the ball. It was explained the 5mm on my rib and 3mm in my arm pit were outside of the margins of a mammogram machine and even a ultrasound could of missed them because they were so small. The fact I had found the 5mm area and could guide the radiologist to it which then revealed the second 3mm on investigation was a miracle. The oncologist has decided to remove the 5mm area surgically with a wire and treat the 3mm with chemotherapy and radiotherapy. This prevents damage surgically to the nerves, muscle and blood vessels. There are still risks with the radiotherapy, but fingers crossed they will be minimal. The surgery takes place on the 13^th August less than two weeks away. With a one day at a time approach to chemo and the rest. It was kind of ironic that on my father’s death 16^th July again I should find cancer. It was only thanks to me opening my mouth and saying guys just check this tiny American easy cook rice sized lump believing it was just scar tissue from the drainage tubing from the LD MX that led to this recent diagnosis, but they have also discovered an area on my right breast which means a second lumpectomy. After a couple of MDT meetings which had mixed response my oncologist has come up with a plan that means my recon and lymph nodes on the left can be left alone which was my main concern.

Now I know  certain individuals will be saying take it all away have done with it which is what a few of the MDT were suggesting, but thankfully I have an oncologist who believes this choice isn’t right for me. It does not mean that opinion won’t change once treatment starts, but for now I have to remain positive. I again thanks to my out spoken attitude found the cancer and hopefully fingers crossed I’ll be punching my fist in the air once all is done.

This is why I am now shouting from the rafters please, please, please if you think you have found something then tell your oncologist. Do not doubt yourself as my oncologist said you know your own body better than they do. Intuition is a powerful tool when discovering cancer. We know that it is there, but leave it way to long when getting diagnosed. This could be because of fear or simply we are turning to the wrong people to get advice. Personally I have a big mouth and don’t care who thinks what about me because it is me that is keeping me from earning my wings. Personally if my paranoia actually creates concern amongst my bloody team good it means they are doing their job.

The only issue with me having the operation and yes I did have a choice, but my health is more important. I don't get to take Sophia to the Expendables 2 premiere to meet Arnie.. umhhhhhhh!  

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