Part Two: I’m going to Basel – Now WHAT? | PRRT & Me

PRRT-&-Me---logo

I got my acceptance on April 6th for a treatment date of May 19th, so I had about five weeks to pull it together. I was due for my Sando shot on the 8th of April, but, my oncologist deferred it to make sure that my receptors would be good and thirsty for treatment. I did use subcutaneous octreotide up to three days before treatment. Because I need so much octreotide to keep my symptoms under control, I was doing a bazillion shots a day – okay, maybe four, but, sometimes up to six. I probably should have done six every day, but, I was starting to feel like a pincushion.

Now I needed to figure out all kinds of other things…like getting to Basel, where to stay, and how I was going to scrape together the money to do this. Mom was coming with me and we wanted to get there a couple of days early to adjust, and a few days afterwards to see how I responded to treatment. Seven days (eight nights), with 2.5 days in the middle breaking up the week.

Airfare

I searched online for airfares using Kayak, Delta (a Minneapolis hub), United (who I have credit with) and then just Google. The very cheapest airfare I found was on Cheapoair, which seemed a little sketchy. They didn’t publish the airfare schedule, but, rather “approximate” times that the flights were taking off, plus, I had to call them to book, I couldn’t book online. Just because I had spent some time looking around, I was able to assess that the flights were with Delta and partners. The interesting thing is the flight over was Minneapolis to Paris, Paris to Basel on AirFrance. On the way home, Basel to Amsterdam, Amsterdam to Minneapolis on KLM. But, it save me about $250 per ticket, one for me and one for my Mom. I called Cheapoair and was impressed by how smoothly everything went. Our airfare was approximately $1049 a piece, not including trip insurance. Not bad since I only had five weeks notice – although it seems lately that purchasing your airfare a very long distance out is not really beneficial. I find the same prices for airfare two weeks before my trip than I have two to eight months before.

This is the route that was good for me, given our local airport and that we are a Delta hub. It might be different for you. Some patients have flown into Zurich and took a train over to Basel because that was an easier and less expensive connection. You might even look at flying into Frankfurt, Germany and taking a train over to Basel. Again, be creative. Google Flights is awesome in helping you find cheaper flights by flying out different days or using different airports.

Hotel

We wanted to fly in a couple of days early just so that we could get a lay of the land and try to adjust to the time difference. It turns out, that the day before my treatment it happened to be the UEFA (Union of European Football Association) Final in Basel. This is a pretty rare event, and obviously, horrendous for finding lodging. Using online booking – booking.com, tripadvisor, and the hotel websites, I tried all of the locations the hospital recommended and each of them were solidly booked or selling rooms for over $700 a night the first two nights because of this. I really wanted to stay at Hotel Rochat because of their close proximity to the hospital, but they were booked. So, the first two nights I booked in a nearby city of Liestal and then booked Rochat for the rest of the trip. The thing is, with online booking, sometimes they only post a certain amount of rooms there and then they have a few on reserve. I wrote to the hotel directly and they did have two rooms still available at a slightly higher price for those first two days, especially when I mentioned I was coming for medical treatment. The cost of the room was slightly higher those first two days, by about 40CHF (Swiss Francs). They had me cancel the booking.com reservations and then they rebooked me for the duration of the trip. One less stressor of having to change hotels the day I had to check in for treatment! Our room cost 130CHF most nights, 170CHF the first two nights because of the football final. Oh, and just as a side note, we paid for the option that included breakfast every morning. At first I was concerned about the extra cost, but, it turned out to be a good value. Food is very expensive in Switzerland, so this was very reasonable. It was an excellent buffet style with warm and cold choices, coffee, tea and a delicious cold Swiss “oatmeal” they served each day. One more thing to mention is that the public transportation system there is very comprehensive. When you register at Rochat, they will give you a a confirmation letter that states the bearer may ride on public transportation to the hotel if you are holding this letter, plus, they will give you and your companions a “mobility” card to use while staying with them which allows you to use the buses and trams throughout Basel. Transportation is another thing in Switzerland, which I will talk about in my next post.

Packing

Knowing that we would be using a lot of public transportation, I chose to pack as lightly as possible. Basically what I had for checked luggage was a small suitcase that many people use for their carry-on. I had a separate carry-on bag that held my tablet, camera, mobile phone, my money and a small amount of toiletries like toothpaste and a hairbrush – because I nine hour airplane flight will make you want to brush your teeth and tidy up at some point. Yuck. Did I mention I hate that long of flights? Mom and I both used a product called No-Jet-Lag on our way over. We think it actually helped with our transition there. We both forgot about it on the way back, but will definitely try again.

For clothing, I packed all knits – things I could roll, two skirts, plus one that I wore on the flight over (I’m a skirt girl), one long sleeve shirt that I could layer under or over and a couple of short sleeve tops. Plus, a cashmere poncho that I could throw over to keep warm and make everything seem a little more pulled together. I packed two pairs of PJs, only because I knew after hospital time I would not want to be wearing the same ones the rest of the trip. For undergarments, I just packed four panties and a bra, I figured I could handwash if I needed to at the hotel. I packed a pair of slippers for the hospital and just had one pair of cute Mary Jane wedges that would be both comfortable and could bridge casual and dressy. I did bring a light raincoat with since it was May and I anticipated it could rain and/or be chilly. I really only needed it the last day we were there.

For toiletries, I packed the smallest amounts I can. Seriously, 2 oz bottles are massive for product for one week. I also brought a small amount of detergent so that I could handwash whatever I needed to. Hotel Rochat has heated towel racks in their bathrooms that can help speed up drying.

For your electronics, make sure you bring the correct kind of converter. Switzerland uses a Type J plug, which are round prongs. Most of the outlets I encountered were 3-prongs, but, some patients reported 2-prongs. I bought a 3-pack of grounded universal adapters (Type J), as they are much less expensive here than in Switzerland. Trust me on this. I also bought a nifty travel adapter that had USB ports on it, so that I could charge our tablets and mobile devices.

Conversations, conversations & research

Even though I had been researching PRRT for years and knew a lot about it, I reached out to a number of patients who gave me great ideas on what to pack, what to expect to spent (Switzerland is very expensive), and how they felt after treatment. I also purchased an excellent book compiled by Switzerland locals (Switzerland: 100 Locals Tell You What to Do, Where to Hike, & How to Fit In,) and an audio book for German language (Learn German with Paul Noble, Part 1), which is predominant in Basel, along with French. Most people speak English, or can find someone who can speak English, but, I just wanted to acclimate myself since I really didn’t know any German. It actually helped tremendously even though the only phrase I nailed before roughly translated to “I would like to camp here because it is romantic, but it is not practical.” (I had no intentions of camping. Until I read about the Alpine Huts you can rent – but, that is a post for my July trip, possibly.)

Knowing that both the hospital and hotel had WiFi available, I set up accounts on Skype and Snapchat to use on my phone and tablets so that I could keep in touch with people while I would be in radiation quarantine the first 24 hours after treatment. It was a great way for me to video chat and send text messages to people back home. It was also an excellent way for me to keep in touch with Mom while I was in quarantine, since she could only be at the hospital for a half an hour during that time.

Paying for all of this

Paying for this is going to be a piece of cake, right?

As I stated in my first blog, cost has been a little bit of the barrier for this treatment for me. Insurance likely won’t cover any of it, but, I will submit supporting documents and see what they will cover. The stark realization that I wouldn’t need a 401k if I were dead became very real for me. But, let me make this very real for you to understand my situation: I have been single for a decade since my husband passed away, so I don’t have an alternate income to help me through these medical treatments. I am not making six figures, so I basically live paycheck to paycheck. I am fortunate that my husband had some money set aside for me when I passed away, but, let’s be honest, it’s been ten years that I have been living on part of that money, nine of them with cancer. Even though I have employer-sponsored health insurance, I have paid out thousands of dollars out of pocket above and beyond my premiums every year. Fortunately, while my job offers short term disability, it only pays half of your salary, plus, I still had to pay my health insurance out of pocket during my multiple downtimes. So, what I am just trying to spell out here is that I am not sitting on a huge pile of cash or a constant monetary support system. I have credit cards that I can put the initial charges on and I can shift money from my 401k when the dust settles. I also turned to crowdfunding, which has been absolutely  lifesaving. I estimate my overall treatment for the first three rounds will be right about $45,000 with airfare, hotel, loss of income from being off work, and treatment, which is the predominant cost. GoFundMe, YouCaring and FundMobilize are all sites you should check out if you are thinking about doing this treatment, I’m sure there are many others. A caveat – they all take a fee for using their platform even if they claim they are free – read the find print. GoFundMe takes almost 8% for online donations when it is all said and done. The only reason I am setting this all out there is because I want YOU to know that you CAN afford this. Do not wait for treatment because you are hoping to get it “free” through a trial you may never get into. You might have to shift some money, change priorities and turn to friends and family, but, it is possible. Sometimes you gotta get creative.

If you are using a credit card, be sure to call your credit card company to let them know that you will be making a large purchase and that you will be out of the country. Honestly, this was the biggest stress for me. I was terrified my card would get declined even though I spoke to the credit card company. Don’t forget, the credit card company will also charge an international fee, so the treatment cost will be higher. Little did I know prior to going that I could have wired the money in advance. There is a service called TransferWise that can send the money in advance that is, most likely, cheaper than your bank. This would have given me a lot of peace of mind. Another patient sent me wiring instructions for the hospital the week I was in Basel. It was just short of me being able to get it done before treatment, but, I will use this for my July trip. Less stress is always the route I prefer to take. I have attached that document below. I am not sure why Basel doesn’t include this immediately with the other documents they sent me in my initial packet and I am sure they would have sent if I had asked – you don’t know what to ask for though, if you have never done anything like this.

>>> Part Three

Dawn Marie on Twitter
Dawn Marie
Dawn Marie
Patient and advocate for better diagnosis, treatment and quality of life for people living with neuroendocrine cancers.