When most people think of the south of France, they think of the wine, the cheese, the picturesque village towns that dot the region, and the blankets of lavender that sit in beautiful bunches, row after row, painting the fields a vibrant purple.
It's an escape for most people. Many read books set in fairytale villages in France while others scroll through the beautiful photos capturing snippets of French life abroad. Then there are few who decide to take the leap and try and make that escapism mindset part of their every day reality. That is the exact mindset we were buying into ourselves when we purchased our little village home in Vaison. We wanted quiet summers of roaming neighboring village streets, while soaking up the sun and local culture. We dreamed of kayaking the Sorgue on hot summer days, then having quiet picnics along its riverbanks. We wanted to wander the weekly market, meeting vendors and exploring new, seasonal foods. I essentially wanted everything I've read about in my favorite books set in Provence. What I didn't expect when we closed out our first summer abroad (which very much felt like a fairytale at times) is that our second summer would be completely consumed with medical charts and a slew of new French vocabulary words that I never in a million years thought I'd ever have to learn. Fistula is fistule for those of you curious, but more on that below.
Once Andy had healed from first surgery, he was immediately sent back in to the OR to get a chest port put in for his chemo.
"You'll be getting folefox," the doctor started. "It's the mildest of all of the chemo therapy we can give you. You'll have a few hour treatments here every other week and then go home with some of the treatment," he said as he held up what looked like a gameboy that would be attached to Andy's port, delivering the chemo. "After two days you come back and we unhook you. You'll do this twelve times and your last treatment will be in April."
It all seemed straightforward. If things went well, his treatment would end a month and a half before we'd leave to go back to France, which we were thankful for.
"There is no way this is going to hurt my kidney, right?" Andy asked, a little skeptical.
Kidneys last different lengths of time for different people and Andy's usually lasted ten years. We were around the nine year mark and wanted to prolong it as much as we could. The idea of chemo and a kidney transplant all in a matter of months might literally push us over the edge.
"I've never seen it hurt a transplanted kidney in my 20 plus years of doing this," the oncologist assured.
He is the expert and so I wholeheartedly believed him. He was recommended by Andy's kidney doctor and considered the best. Anytime we'd say we had Dr. R, everyone would go on about how their family member or their neighbor or a friend of a friend just adored him and how fabulous he was. So we put all of our trust and eggs into the Dr. R basket.
The first dose of chemo was tough and, despite being the least aggressive, Andy ended up in the ICU for three days. The diagnosis; toxicity from the chemo.
After doing a slew of tests, they decided to lessen the dosage, but, the same thing still happened with the second treatment.
"We can't lower this anymore," he said, standing at Andy's beside. "If we do, it's not even worth giving it to you anymore," the doctor said, a little exasperated.
But it was the third one that really seemed to do him in. After being placed back into the ICU for four days, the doctor visited us before we left to go home with some news.
"There has been an adverse effect. I've never seen this, but the chemo is attacking you kidney. I don't know what to do. You need the chemo, but if I continue it will kill your kidney. We have to weigh all of our options and go from there."
It was decided, since in their mind the kidney was "on its way out" anyway, to move on with chemo and yet another surgery was set up, one for a fistula (essentially a fused super vein in your arm) for when he would need to be placed on dialysis.
A week after his fistula surgery, however, his kidney failure was happening at an accelerated rate. Another thing Dr. R had said he had never seen before.
Andy was the exception, but in all of the wrong ways.
Saying we were feeling overwhelmed just three months after returning from France was a bit of an understatement. It was as if someone said, "it looks like despite the madness they're still hanging on... let's add more to the mix and see if that finally does it!"
When his kidney was diagnosed as officially shutting down, it was decided that he couldn't wait for his fistula to heal, and he had to go into immediate, emergency surgery and get a chest catheter in order to begin to receive dialysis.
"My head is spinning!" I told a friend, pacing outside of the family waiting room. He is literally in the fifth surgery in three months. I've burned through all of my sick days at school and my personal... and he's constantly in pain. As soon as his body heals from one surgery, we are told we need to schedule another. His body isn't even healed from his last surgery! And we've had to buy him all new clothes to loosely fit around his port and now this catheter and he's lost so much weight and.." I started to sob.
"And yesterday he said he felt like he was being punished for having the best summer of his life in France. I didn't even know what to say. I just sat there and shook my head!"
Andy was thirty-six when they discovered he had cancer. It wasn't hereditary, as no one in his family had died from any type of cancer before. He hadn't smoked. It was completely random.
"I think it's the food," his colon doctor stated, looking up from his chart. "There are so many additives and plastics and chemicals in food. It's the only thing I can think of," he said, shaking his head in disbelief.
Andy's fourth chemo treatment landed him in the ICU for over a week. He laid in a comatose state for about half of it and it was during that time that it was decided to stop the chemo treatments. A slew of tests were run and, a week after Andy was sent home, it came back that there were no traces of cancer left in his body. Dr. R felt confident in stopping the treatments, but monitoring him every few months.
When all was said and done though, we were now left with an incredibly limiting medical issue; dialysis. Andy started with treatments three times a week for four hours at a time. The treatment is something that, despite some people doing it occasionally, you should never miss, as it severely jeopardizes your health. Two weeks without it and he'd be dead they said, to reinforce not missing a treatment. This makes it incredibly difficult to travel, even within the United States. At one point, we wanted to visit his family in Buffalo, NY and despite giving a few weeks notice, his clinic was unable to accommodate him or find him a place up there where he could do his treatments.
"No place has any open seats," the clinic manager said with a disinterested shrug.
"This is so infuriating! We literally just bought a home to break up the monotony and start being more impulsive with travel and now we can't even figure out how to go 3 hours away!" I said, back at home when Andy delivered the news.
It just felt like no matter what we did, we were stuck, and to no fault of our own. I'm someone who follows the mindset that if I want something enough, I can make it happen, but for some reason, this felt very out of my hands.
I also believe in doing your homework and finding out all of the information you can before you make a decision, so when the talk of traveling to France finally came up around the end of winter, feeling beaten down from the incredibly horrific six months we had just had, Andy immediately ruled it out. I asked Andy to humor me and to just do a quick internet search, thinking that traveling with dialysis outside of the U.S. may be an actual possibility. There are over two million people who need dialysis around the world. I didn't believe that all of them were tethered to their center, limited by the treatment.
After about a week of pushing the subject, Andy came back with very limited information.
"So, there is a resort in Jamaica that specifically caters to patients and offers treatments there anndddd," he said, dragging out the word, overly exasperated, "there is a dialysis cruise."
"Hmm, right," I started, taking in the information, "but what about France. That is where we're trying to go."
"Nothing. Nothing came up when I searched," he said.
I squinted my eyes at him. It seemed a bit unbelievable that NO one had written about this, had a blog covering it or even a center's website didn't pop up.
I will say, though, that when I search French things while in the U.S., I don't always get the same results I do when I am actually in France searching for them. Because of this, I enlisted the help of my closest friend in France, Agnès. (Yes, the same one who gave me my first dînatoire!) With a little digging, she discovered a company that had a few facilities near us, with the closest one being in Carpentras.
I froze, my fingers moving from the phone key pad, back to the table, then nervously tapping before repeating the process.
The idea of calling the clinic for information and accidentally not understanding some of the medical terms, rapidly spiraling into a major blunder fluttered through my mind. This was the last thing I wanted to mess up by a translation error. Thankfully Agnès came to the rescue, offering to call and get the necessary information.
An incredible weight had been lifted off of my shoulders. I felt relieved. With her receiving the information, there were zero possibilities of miscommunication.
Andy's health was too fragile, that mistakes could not be made. Especially when they could be avoided.
As an expat abroad, one thing which makes me more nervous than anything else is talking on the phone to someone in French. You don't realize how much you rely on social cues or body language to dictate your conversations until you don't have them. I have been very lucky that, when it comes to the more difficult conversations, Agnès has always stepped in and offered to help. She is an excellent friend and lifesaver!
After chatting with the incredibly helpful receptionist, she relayed that the first step was to fill out the vacation dialysis form. It was a simple one page document asking what type of dialysis you receive, what dates you would need to be at the facility, what days and times you normally do your treatments and what facility you'd like to attend. There are different companies for the different regions in France. In my first post about this, a Brit had mentioned her experience up north with a different company and a completely different price tag. So while my information is current, it may not apply all over the region or country.
We filled out the paperwork, checking off the center in Carpentras as the center we'd like to attend. A week later, we received word that our request had been rejected due to lack of space, but our paperwork had been sent on to Orange.
After a few days we heard back from the receptionist of that clinic, offering Andy a spot, but also wanting a slew of documents and tests before our arrival, three months from then.
Not only did they need all of his records from his current clinic, they also wanted a drawing of his fistula.
Lucky for us, Andy was back in surgery to remove his chest port, as the test runs of his new fistula were a success! More surgeries to undo other surgeries!
As he lay in recovery from the procedure, the doctor who did the original fistula surgery and now his catheter removal, came in to check up on him.
After seeing that everything was going well and scratching some notes on his notepad, he looked up, asking if we had any other questions. I quickly remembered back to the drawing that was requested.
"Actually," I started, "we need a drawing of his fistula." The doctor squinted.
"Like a map of it," I tried clarifying, "Is that something you can email over?"
I'm not sure why I thought this was something that they just kept in a digital folder, but without missing a beat he took out a sharpie and walked over to Andy.
"Stick out your arm," he instructed a groggy Andy, grabbing the now extended forearm. Andy and I watched quizzically as he dragged the sharpie up the prominent bump in his arm.
"Who has a phone to take a photo?" He questioned, looking from Andy to me.
I handed him my phone.
"That should do it," he said handing it back to me. "Why do you need an outline?"
We explained our plans to potentially go to France and the need to provide our new clinic with a slew of different pieces of medical information.
"I'm glad you said France, their medical system is great. I have no worries about you going there. Now if you said England," he shrugged, tilting his head.
"England? Really?" I questioned, a bit surprised.
"Eh, they aren't as forthcoming with their research and studies there, I don't know enough to feel comfortable sending patients there for treatment," he said walking towards the door. "If you end up going, have fun!" And he was gone.
At this point of planning, Andy was still very much on the fence about going abroad. Maybe there wasn't any information because no one does it and for good reason.
But we were going through the motions, setting everything up so that, if he decided he was comfortable going, he'd have a place and all of the hard work of navigating the healthcare system was done.
Andy's logic was, dialysis was hard here, where he could speak the language and advocate for himself. The last thing he wanted to do was go somewhere where he had to do a hard treatment and not be able to communicate about his needs or how he was feeling. There was also the fact that his facility here had already had quite a few blunders, the biggest one was back in February when they allowed fluid overload. Instead of dialyzing him, which he desperately needed, they sent him to the ER down the street who was understaffed. He wasn't able to get a treatment until 8 hours later, leaving them no choice but to put him in a coma until he could be dialyzed. Not that long after, it was discovered that they never did the required tests to determine a base weight, and so, for the past few months, they hadn't been taking the right amount off, leaving in rolling the dice in between every treatment.
"What do the people do there who aren't able to advocate for themselves?" I asked furious at this new development. "There are patients that literally get rolled in on stretchers! Who's making sure they are being kept safe?"
I understood Andy's logic. What if something happens over there and it snowballed, like it seemed to do at our clinic? With me not speaking medical French and him not speaking at all, it was something that concerned us. Where would we go if things took a turn? Would they have an English speaking doctor? Would more blunders occur because of the language barrier?
While all of those thoughts rolled around in my head, my logic was, if you're going to have to do dialysis, why not do it in France where you know you have a great group of friends, access to incredible food, and 300+ days of sunshine. To me, it was a no brainer, but I knew he had to come to this decision himself and feel comfortable with it.
It seemed as though when we'd send away one email with documents requested, another email would appear with more items needed. Next, two tests were needed in order to solidify his spot: a Mersa test and a VRE, which aren't the easiest to get here.
When he called around to any and all medical facilities in our area, many wanted to know where the wound was for the Mersa test. When he explained there wasn't a wound, they would refused to do the test.
Finally, because of special circumstances of traveling, we found a hospital willing to administer it. The VRE, though, was something that just wasn't given. So, we'd just have to show up without it and hope they didn't refuse us treatment.
Around the beginning of May, Andy seemed apprehensively on board. I was relieved. I was still holding strong to my if I want it enough I can make it happen attitude and I felt as though dialysis abroad would be no different. We could, if we tried very hard, make it work! I also believed that, for our mental health, getting out of Pittsburgh and leaving the past 7 months behind would be the best for us.
Andy had set it up so that we'd leave on a Wednesday night and arrive in Marseille Thursday evening with plenty of time to go and get our rental car and head to our French house. His first treatment was Friday afternoon. As we shuffled all of our bags to the front door, readying ourselves for the drive to the airport, our phones pinged with a notification.
FLIGHT CANCELED lit up our screens.
We had been set to take a flight from Pittsburgh to London, then London to Marseilles. Now, the second flight had been cancelled.
Any other time, this would be fine. We'd hop on the next flight or try a different airline. This time, however, things had a layer of concern. Whatever alternative flight we took, we had to be in Orange by 1 pm for his treatment.
"Should we not go? I can't risk not getting treatment," Andy asked while standing, nerves from the flight and the treatment abroad fluttering in.
Who would have thought we'd experience trouble traveling on dialysis from our living room?
"Perhaps we go to the airport and see at the desk? If we don't like the options or don't think they are reliable, perhaps we book another day?" Andy nodded.
The idea of getting stuck in London and him needing a treatment was a dealbreaker for me. I wanted to travel on dialysis, but I wanted to travel safely.
"Let's just go and see," Andy said, switching to the positive one for a change. We had only been doing dialysis for about 7 months at this point and I wasn't sure how comfortable I was with taking too many risk while still trying to navigate it.
At the airport, there was one flight left to the south of France and it was going to Nice. It would get us in around the same time as the other flight, but around 2 hours away from our rental car.
"Hmm, maybe we can get in and rent a car. Spend the night in Nice, wake up early, drive to Marseille, pick up the rental car and then head straight to Orange?" Andy suggested.
"I'm tired just hearing that itinerary! But I think it's the only option we have if we want to go today," I said with a shrug.
Tickets were booked and we made our way to the gate to begin our next crazy 48 hours.
By the time we finally made it to the clinic, we were a bit discombobulated from the rushed flight, time difference, jet lag, couple hours of driving and a frenzy of nerves about doing the treatment somewhere new.
We were greeted by the facility manager who, explained that since Andy would be receiving his VRE test here, he would have to be in quarantine for a few days while they waited for the results.
Leading us back to the patient area, we were surprised to find the treatment center split into two sections. One door led to a big room of hospital beds, holding around 20 patients that were deemed too fragile for the other section. In that room, the patients were a bit older and could lay down throughout their whole treatment. The other room was for patients who were considered in a more stable condition and had about ten reclining chairs in it.
"Is it ok if she stays with me since she speaks French?" Andy typed into his google translate.
The clinic manager nodded, leading us through the room to the designated "quarantine" spot for Andy. As we walked past each hospital bed, each patient waved, adding a "bonjour." They were intrigued with the new foreign transplant in their wing.
"This is wild," Andy said in a hushed voice as we waved back. "In my clinic, there are probably around 40 of us. Here there are maybe 20," he looked around with surprise.
The VRE test was administered and then Andy was made comfortable while they translated questions via google translate about needle size. The manager kept looking at his charts, all in English, then back to Andy when he had questions about the usual length of his treatments and the amount they usually take off.
Finally, a nurse who was only there a few days a week came over to introduce herself. She would be the one sticking him. Plugging her information into google translate, she smiled, holding up the phone to him. They went back and forth, translating their questions and answers until Andy felt comfortable to begin.
With the treatment started, I looked around the space. Only a thin curtain "quarantined" us from the other patients. Other patients peeked into the space from their beds, intrigued by the flurry of English and French being spoken. When our eyes met they would smile, putting me at ease. The last thing I would want is for the other patients to think we were getting special treatment, but they seemed to be genuinely happy we were there. It felt very communal at that moment, like we were in this unfortunate situation together.
A few beds away, twinkle, twinkle little star played softly. I looked around giving a questioning look and the nurse caught my confusion.
"It's someone's machine," she explained in her translator app. "He is finished with his treatment" she said as she tilted her head towards the man who was beginning to sit up.
"Back in the U.S." Andy began to explain, "the machines are loud. Bhaaag, bhaag, bhaag!" he extended his fingers then quickly closed them a few times, as if simulating an alarm going off.
The nurse looked like she was in pain. "That doesn't seem very relaxing!" she said. "It's not," Andy confirmed.
Just then, two women peeked around the curtain, wheeling in a little cart.
"Bonjour! Un café? Une gaufre?" Hello! A coffee? A waffle?
Andy looked at the nurse.
"Am I allowed to eat?" He typed.
"Of course," she confirmed, "we will adjust you based off of what you choose."
After handing Andy a coffee with a madeleine, they turned to me.
"Et pour vous? Un thé?" They offered. And for you? A tea?
"C'est très gentil," I said, surprised that I was offered anything. That's so nice!
With our beverages and sweets all finished, the lights started to dim in the clinic.
"What is going on?" Andy asked the nurse.
"It's time to rest," she confirmed, fluffing his pillow and leaving the space.
Andy turned to me.
"This is wild! Back home, people are screaming the whole time, the patients, the nurses, everyone just yells at each other. It's the most stressful environment I've ever been in. And you aren't allowed to eat or drink while on the machines. And it is way too loud and bright to take a nap," he said, looking around. "And the machines are so new here and quiet! Everything is so quiet!"
Just then, three heads popped into the curtain.
"Allo, Andrew!" One said with a big smile.
The younger guy stepped forward in front of the two women.
"Il est américain," the manager said, coming through the curtain and pointing to the man.
"I'm James," he said with a wave, "when your test results come back, you'll be moved next door with us," he pointed back to the women.
"You're American?" I said, catching the manager's previous comment.
What are the absolute chances of Andy's biggest fear, not being understood, quelled within the first few hours!
"Yes, I am an ER nurse who is doing a rotation here for the next few weeks," he explained.
Everyone else started speaking in French and Andy and I looked at James intently, waiting for him to fill us in.
"Ah, they are worried about your iron. It's low. They will add something to your treatment," he confirmed.
Hmm, having James around was already paying off!
"Andrew," the one woman started in her best English. "Next... comment dit-on semaine?" she asked. How do you say week.
James aided her, "week."
"Yes, next week you go there," she pointed to the door leading into the other room then pointed to herself, James and the other woman. We nodded in understanding.
"Will you stick me?" Andy ask James nervously.
"In France, the patients stick themselves," he confirmed.
"Where? Here?" He pointed to the hospital beds outside of his curtain.
"No, both rooms. Unless the patient is too frail. The patients in our room come in, weight themselves, write their information in the chart, set up their machines and stick themselves. The nurses are just there to assist or help if there is a problem."
"How many patients and nurses are there?" Andy asked.
"Usually there are four patients and two or three nurses," James confirmed.
Andy turned to me with wide eyes, then back to James.
"At my clinic, there are around 40 patients and 3 or 4 nurses and the staff sticks everyone."
"Ahh, d'accord," James said, rubbing his chin. Ahh, ok.
"But someone will stick me over there?"
"Yes," he confirmed, "you are our exception."
A few more things were said amongst everyone, as the women wanted updates on their conversation and then their attention turned back to Andy.
"Goodbye, Andrew! See you next... week!"
And everyone disappeared just as quickly as they arrived.
We didn't realize it at that moment, but those three people would become an intricate part of our French existence for the next few months, sharing food, music and small triumphs inside and outside of the clinic.
It is so interesting hearing about different medical experiences abroad. I appreciate everyone who has shared their experiences and questions so far. If you have experiences the health care system abroad or questions about it, please share below to help others navigate it.
Happy Sunday! - R
Bonjour, Ciao, Salut! My name is Rachel and I am a part-time resident of Provence that splits my time between Pittsburgh, Pa and Vaison la Romaine. Come take a deep dive with me into Provençal culture, food, history, villages, markets and all of the quirks that come along with them!