First of all, let me thank my Carcinoid friends, especially Lois, Lucy and Jude. If it weren’t for these wonderful and caring ladies I would still be at home on the pot with my 10 a day floaties and continuing to lose weight. When I saw Dr. Woltering, (one of the NOLA docs) this summer he said I need to go to Switzerland for PRRT. I had been very non-compliant since my operation in June 2006 when I was diagnosed. Of course I had diagnosed myself (via internet, thank you) in 2002 when the flushing began. No doc would listen to me. I hadn’t been to a Doctor in 26 years and only knew my Hospice Doctors where I worked. They did a urine test and said I didn’t have Carcinoid. I told them I had read that it should be a 24 hr urine test but they said this was good enough. Hey, they are the docs so ……. At any rate, 3 years later I went to an Endocrinologist (where Lois had worked) because I was really getting tired of all of the flushing when I ate. He did a Serotonin level and a 24 hr urine and said it probably was Carcinoid. He ordered an Octreoscan in 2006 and like that, I had become a Noid! None of the Hospice docs had ever had a patient with Carcinoid (my luck) so I got on the internet and found a support group. I found Carol Miller in Dallas who pointed me into the direction of the dream team NOLA docs. They wanted to operate right then! I was in the process of having dental implants put in and I said it would have to wait till I had these permanent teeth as my husband had never seen me without teeth and I didn’t want to take that chance of waking up in an ICU toothless! Hey! We can still be vain at 58. As soon as my teeth “came in”, I was operated on (actually 2 days after teeth were there) and I was cut from my pubes to my boobs (no not the standing up boobs, the laying down boobs). I might add I only have a tiny scar…Dr. Beaudreaux is not only an expert surgeon, he is very neat with his work! Glue was used rather than stitches or staples. I had told him I didn’t want much of a scar because I want to wear a bikini! He took me at my word and delivered the nice flat stomach with only a tiny bitty scar. Thank you Dr. Beaudreaux!
I had so much wanted to return to work ASAP but I couldn’t eat ANYTHING once I got home. I went 7 weeks with only ice tea. I know this sounds impossible but it is true. Nothing! I had thrush so bad that even the ice tea was a challenge to get down. I am still on Diflucan and if I try to get off, white patches form in my mouth and it feels like someone has taken an emery board while I slept and scraped the skin off of my big red swollen tongue. I still think I have Pellegra and take 2000 mg of Niacin a day. Sometimes the patient knows more than the doc. At least they give me what I ask for.
Fast forward 4 years…. Switzerland is beautiful this time of year. November brings snow but it is not that cold (with the exception of my feet). I hadn’t bought winter boots but did the first chance I got as my tennis shoes did not keep my feet warm. I even bought wool socks to wear over my regular socks and my toes were still too cold. We arrived Saturday night, 2 days after Thanksgiving 2010 and did the money exchange at the airport. Swiss Francs are almost the same as American dollars. We took a taxi to the Hotel Rochat which was 48 franks (about $48) and after checking into the Hotel we found a lovely restaurant down the street that had an extensive menu that we were unable to read. We looked around at other peoples plates and made our choice that way. It was $90 for the two of us. We both had what appeared to be pieces of pork in a sauce with mushrooms and what tasted like hashbrown potatoes. (it was $38 franks each) Of course, as soon as we put our fork into our dish, the waitress delivered plates to the table next to us. Spagetti with all kinds of clams, prawns, seafood………….oh well…next time? My mouth was watering as I watched them eat the seafood ………
The hotel gives you a card which can be used for free on public transportation. The hotel also has a breakfast buffet from 6am to 10am. I had prepaid $16 each for every day we were there. It had everything you can imagine; eggs scrambled, fried, poached, a large assortment of cheeses and cold cuts, potatoes, cereal, fruits, yogart, bacon, meat balls, coffee, tea, juices and and numerous different pastries and breads. It was very good. I got my moneys worth out of every breakfast!
The market is open on Sunday (and walking distance from the Hotel) and there were many small shops where they sold souvenirs and wool hats, chocolates, socks, mittens, chocolates, scarves, christmas ornaments, chocolates, etc. Did I mention they sold chocolates? There also were quite a few places to get a nice lunch or just coffee. It was kind of weird seeing sidewalk cafe’s serving hot tea or coffee and pizza’s while the snow was coming down. We walked around for over 8 hours! All of the department stores are closed on Sundays as are many of the restaurants that are “in town” (everything is walking distance from hotel). I was hoping I wouldn’t be too tired after this treatment that I could go shopping for shoes! That was the only thing that was cold….the toes! Sunday evening we found a restaurant that was about a block and a half away that served Italian food. We both had Spagetti al carbon which is spagetti with Alfredo sauce and what seemed to be Pancheta (very salty bacon type meat.) It was enough for 2 people and very good. The bill was $70 for both of us. One note: tipping is different than in the states. 10% makes for a very happy server!
Brigit Avis was my contact at the hospital in Basel and sent me the “invitation” via email to come to the hospital. I was told that I must stop my Sandostatin shots for 6 weeks before coming. (Subq’s could be given up until the 3rd day prior to treatment) Paperwork was all handled via email and a week before I left she emailed me saying they needed the money to be sent for the treatment. It was a little over $9,000.00. My bank charged me $35 to wire it and I needed a confirmation letter from the bank that it was wired as it usually takes from 2 to 7 days to be deposited in their bank. They had already made an appointment for me to return February 7th, 2011. They said that I would only need a total of 2 treatments. I understand that the 2nd time isn’t as hard on you as the first time (what ever that means???).
I arrived at the hospital at 8:30am on Monday and met Martin, one of the most wonderful nurses who worked on the nuclear floor. I was taken to a private room overlooking what looked like a winter wonderland. The Doctor came in and explained the Amino Acids that they will give IV to protect the kidneys. He inserted a heplock and drew some blood. He also gave me Zofran under the tongue which is suppose to ward off nausea. No gloves, just fingers were used to give me this tablet. Another nurse, Kristen came in and went over the menu with me for the duration of my stay. She explained that shortly I will be taken downstairs for the nuclear medicine. I was also told that I most likely will be very tired for a while and that this is immediate. The hospital discharges you on Wednesday by 11am. We are planning on staying in Switzerland until Saturday before we fly home.
The only other medicine I got besides the Zofran under the tongue to prevent nausea was 8 mg Prednisone the first day and Tuesday 4 mg and Wednesday 2 mg. I guess this is to give me energy. Of course I brought all of my regular meds which I gave myself while I was there. I am usually swinging off of the walls so I guess I’ll really be swinging with more Prednisone. I’ve been trying for months to wean myself off of this nasty steroid that gives you a horrible moon face and skin that tears if you just look at it. I had been on 10mg up until August and am now down to 5 mg and so proud of it!! Of course Prednisone also gives you an appetite which I desperately need but even at 62, I am still a little vain and don’t like the fat faced Grandma I see reflected in the mirror.
They tell me that I will be radioactive and gave me a letter to give to customs explaining such. There are rules to follow because of this radiation like the remote control for the TV stays in plastic. It is a “quarantined” room. Even the toilet water is saved for 3 months. After 200 cc’s of the Amino Acids were infused (to prevent kidney damage), I was led down the elevator to a room where I received the Y90 Isotope. This was put into the heplock by the Doctor that inserted the IV. It came in a lead lined strong box. It took less than a minute for it to be pushed into my vein. I asked the nurse if it was dangerous for him to be so close to me and he said yes but that he does not smoke or drink and every job has some danger. Hmmm I was given a bag to barf in if I got nauseated. They said that some people do get nauseated and some flush. It’s my luck to do both so I brought the barf bag with me to my room and everywhere else I went in Switzerland….just in case.
This hospital has free wi-fi (as does the Hotel), you just need to ask for the code. I would have had an awful time if I could not play on my computer. My phone, ipod and mac were all there with me. I’m a multi-tasking Grandma! The room also has 4 channels of English TV (MTV and news) and a radio.
As Basel is located on the Rhine River and touches France and Germany, it is only blocks from these other countries. Our plane flew into Germany (Frankfort Airport). We later walked to France!
Lunch was really good. Pasta with Pork and sauce, salad, tasty roll (very home made tasting), soup and snow peas. Dessert was pineapple with some kind of sesame sauce. Very Good! This definitely did not taste like hospital food!
A few hours after lunch I was taken downstairs for what they called a Gamma Camera (looked like a CT scan) This was to check just my kidneys since I received a liter of the Amino Acids. I was brought back to the room when my IV accidently dislodged from my arm and sprayed blood all over the floor. (hey Doc, you sure that wasn’t an artery you put that hep lock in??) Ugh! What a mess. They were really sweet and took the tape off (ouch) and mummie-wrapped my arm. I wouldn’t be needing the IV anymore so this was okay. Their clean up procedure was the same one we used 30 years ago. No paranoia there!
I received a card with my appointments on it while in the hospital. The scan I just had was at 1400 and tomorrow at 6:45 I will have more scans. The longest I was out of my room for scans was 45 minutes. Then Wednesday at 8:00 am the last one. This place is highly organized and waiting is not part of their vocabulary. Boy, they’d have a hard time in Texas with all of the waiting we have to do! There was no fasting before scans, no mag citrate to drink and if you wore no medal there was no changing of clothes. And, their scan shows everything. My Octreoscans did not show all of my tumors or my primaries.
I am suppose to start getting tired. They also said I could still get nauseated. I’m just waiting. Dinner was really good. Boiled new potatoes with this really wonderful sour cream sauce served on the side. The salad had italian dressing and was good too. Of course I left the beets and the soup (yuck) but the ice cream was like they had imported it from Italy. Very creamy and vanilla. Yummy! Tasted like frozen whipped cream!
Guess according to my schedule I go to get scanned at 8 am Tuesday morning. Then the last scan will be at 8am on Wednesday before I leave. I should find out tomorrow from the Doctor if my kidneys are fried or not (results of getting the amino acids and scan from today). Oh yes, they tell me now that I will most definitely get UTI’s (urinary track infections) for up to 2 years. Ugh! Load up on the Cipro, Doc! I am also told that I need to be farther than 3 meters from any babies or pregnant people for two weeks because of the radiation.
It is nice and quiet here. I have magazines, crochet and crosswords to do. The bed is comfy and has a nice down comforter and the room is warm. Nothing to complain about except they don’t have ice!. I had to look long and hard to find some sort of complaint! Being an RN and having worked in Hospitals, I think us nurses would have thought we died and went to heaven in this organized environment. When they say 8, they mean 8! What a change from our waiting and waiting and waiting for everything back home. Back home there is so much charting and so little patient care. Thank you people who have sued in the past and caused HIPPA and all of the back up paper-work so nurses have mere minutes with their patients for care. Don’t be mad at the nurse if it appears she is just sitting on her butt doing nothing. You would not believe the paperwork involved with charting. So so sad. And now they are going to computer which, of course for the non geeks, takes even longer to fill out papers. Sad…most Nurses don’t want a raise, they want help! Hospital care in Switzerland is like in the good ol’ days before HIPPA.
Slept good. Asked for coffee at 5AM and they quickly got me some. Breakfast came around 6:30. They are suppose to take me to a scan at 6:45AM. I got 4 mg extra Prednisone this morning. Maybe that is why I am hungry and not tired. My legs are sore from the 8 plus hours of walking Sunday.
The food here is wonderful and even with me being the worlds worst picky eater, I loved everything they had on my tray (of course I got to pick it but didn’t see it till it was here…and words can be very wrong when describing food. But I was shocked that it was even better than described. I am SURE that I have gained a ton of weight (I started out in the 90’s which is a little bit small for my 5’7” frame! I know I am now at least 105, perhaps more. One thing I will do when I return home is go to Denny’s every morning for breakfast. Even though I love to cook and do a lot of gourmet stuff, I never want to eat it. Too tired after the preparation? Watching the hubby inhale it? Knowing there are more dishes to wash? Who knows, maybe I am anorexic and it is a control thing…….I control what I put in my body? At any rate, I am a very picky and poor eater and always have been. Remember us noids are not suppose to eat leftovers. That is on the Tiramine diet for Carcinoid from Leigh Ann, the Carcinoid Nutritionist at the New Orleans clinic. Never did like leftovers anyway!
Another strange thing is that I have had NO diarrhea since being here. My poop is even sinking. Does that make sense?? A sinking, non-smelling poop in 3 big pieces. (sorry for the graphics but I’m sure you understand!) I haven’t seen that in a long time (2006). I am starting to wonder if the Sandostatin shots were helping me or not. Seems funny that since I’ve held them for 2 months I am not as symptomatic as before. Hmmmm
Today is my discharge day. If I ever have to be hospitalized again I want it to be in a foreign country. With the US listing #37 on the WHO (world health orgainization) I am not very impressed with the care at home. I’m sorry but give me socialized medicine any day! The Doctor said I am tumor free! Dr. Woltering had told me that it might take 5 years for them to grow back and then another 5 years to worry about it meaning that in 10 years I most likely will need to do this again.
One Week Later
I’ve had several days that I couldn’t get out of bed….was too tired but I had my blood work done yesterday to check on the red blood cells that the treatment borrows from you for a while. I’ve been out shopping so I’m not too tired. Just too tired to cook or do dishes or clean. I wonder how long I can play that card? I’ve already made my reservations for February when I return for treatment 2, the last. This time I went through a travel agency but will still stay at the Hotel Rochat as it is so close to the hospital.