Category Archives: Travel

Good Vacation and Missed Opportunity

November 9, 2018Carcinoid Cancer, Travelcastles, Injection, neuroendocrine tumor, PRRT, Scotlandcy

Vacation in Scotland

We spent about 10 days in Scotland ending last week. Our son, his wife and son live in Cellardyke near St. Andrews. We take every chance we can to visit them. We love to see them especially the five and a half year old grandson.

While there, we took the wonderful train system to Stirling. Stirling is an ancient town with a castle that dates to the the 14th century. It was perhaps the most used of the royal residences during the reign of the Scottish Kings. The Scots have done a very good job of restoring the interiors of several of the castle rooms to look like they did during the King’s residence. The battles of Stirling Bridge and of Bannockburn pictured in the movie “Braveheart” was fought very nearby.

All in all, it was a very good trip. I regret that I have not pictures of family or castles but my phone with it’s camera died on the first day of the trip.

Health and Missed Opportunity

I have written in Another NETspot GA68 Scan – Next PRRT that I am “on the list” for a treatment called PRRT. While we were in Scotland, an opening in the list occurred for today Nov. 9. The oncology office called and left messages but I was in Scotland and my phone was broken. I finally got the message when it was too late to begin the treatments this week. This was a bit disappointing but could not be helped. I am still on the list for early next year.

Last Friday, just two days after our return, I got my monthly Sandostatin injection for NET Cancer. Since then, I have been experiencing some of the Carcinoid Syndrome symptoms that don’t usually bother me. I mentioned this to my oncologist and he told me that sometimes the injection is done badly or the batch of medication is bad.

Namaste,

How did this happen?

May 7, 2017Carcinoid Cancer, Health, Travelbirthday, carcinoid, spine, travelcy

Today, I turned 70 years old! How on earth did that happen? Below is a picture of my wife Laurie whom I blame for my continued existence more than anyone else. But I also depend on my kids, grandkids and all the rest of my large family (11 siblings) and my friends for their love and support. Of course the medical establishment has done much to keep me going, although I had to learn to battle them when I felt they were wrong.

I just spent 11 days in the Netherlands with Laurie, Derek, Kat and Ansel. It was a great trip during which we could celebrate Ansel’s 4th birthday, Derek’s birthday and my own birthday. We saw the Van Gogh museum in Amsterdam and saw some of the King Day (big holiday) celebrations in Amsterdam. We spent several days in Haarlem as well and had a wonderful tour of the tulip gardens with the tulips at their peak.

Kat had arranged for Airbnb accomodations in both cities and they were very nice. The very nice flat in Amsterdam was beautiful but was a 4 flight walkup. The old house in Haarlem had some stairs that were difficult but we managed.

The trip was marred only slightly by some problems with my sciatica. Fortunately, my

spine doctor had supplied me with a prescription for methyl prednisolone. I filled that and took it with me to the Netherlands which enabled me to get around most of the time. The injection’s good effects are not lasting as long as I would have hoped.

Yesterday was the 6th anniversary of my diagnosis but I had no problems with the Neuroendocrine Cancer on this trip.

Laurie, Margot, Charlie - Easter 2017 — Laurie, Margot, Charlie – Easter 2017

Eating Ethiopian Food with Ansel in Amsterdam 2017

Cy and Margot - Easter 2017 — Cy and Margot – Easter 2017

As usual with my list of diseases, the day after I got back, Friday, I went to the oncologist’s for my monthly butt dart (Sandostatin injection). Tuesday I meet with my oncologist to discuss the neuroendocrine cancer and perhaps the Netspot (GA-68) scan. Next Monday I restart weekly physical therapy for my spine. The beat goes on.

May we all have the best possible outcomes,
CyCopyright secured by Digiprove © 2017 Cyril Ball

May 2016 Scotland and Iceland

June 6, 2016Travelcy

Thursday we returned from a trip to see our son, daughter-in-law and grandson in Scotland and to do a quick tour of Iceland.

Scotland

Ansel and Gran Big — Teaching Ansel to use a ruler.

The weather wasn’t the greatest and I was constantly bothered by sciatica meaning that I could not walk or stand much. However, it was a great pleasure to spend a week with the family, especially the three year old grandson.

He’s great fun! The photo is by his mother, Kat.

Derek and his family live in a house on the sea wall of an old fishing village called Cellardyke, overlooking the North Sea. Very picturesque.

Iceland

After a week with them, we flew to Iceland. It’s easy to stop over there on the way back to Denver. My wife, Laurie, had found a nice hotel in the Reykjavik town center. Even with my sciatica I could walk to see the sights and eat without much problem.

We took a tour bus one day and saw a geyser at the Geysir Park and Gullfoss (golden falls) waterfall which is beautiful and powerful.

We also toured a greenhouse which grows vegetables getting heat and power from geothermal heat. We visited a site where the North American Tectonic Plate rubs against the European/Asian Tectonic Plate. There were very visible rifts and cliffs in the lava there.

GullFoss Iceland — GullFoss – Golden Falls

It also contained the spot of the Icelandic Parliament which was the earliest European parliament.

It was sunny the day we got there. Overcast Reykjavik the next two days. Because Iceland is so far North, it was never totally dark at night time. You can see from the pictures that it was rainy and foggy on our tour.

I’m glad we did the stop at Iceland and, of course, to visit Scotland and family there. Hope that my health continues to allow me to travel.

May we all have the best possible outcomes,

Scotland, Carcinoid, etc. January 2016

January 22, 2016Carcinoid Cancer, Health, Travel, Uncategorizedcy

We returned yesterday from Scotland. We took grandparent Christmas to the Derek, Kat and Ansel there. It was fun.

The weather was not as bad as it could have been. Temperatures between 31 F and 40 F. Some days of drizzle. The Scottish word ‘dreich’ describes wet, cold, overcast; we had some of that, but, no wind and storm from the North Sea. We were fine, if a little cold, walking around the town.

This was the second trip to Anstruther that we stayed at a bed & breakfast called the ‘Lahloo Bed & Breakfast’. It is named after an old clipper ship. We enjoy the proprietors, the rooms, and the breakfasts. Its location is perfect, just a few blocks from our son’s house and a short block to the picturesque harbor. If you would like to know more about it go to www.lahloobandb.co.uk.

As usual, I experienced the carcinoid syndrome for about half the trip, but it was controlled pretty well by drugs. It did not prevent me from being able to confidently take long walks and bus rides.

Now that we are back in Denver, I will schedule the bladder procedure to remove bladder cancer. My new urinary cancer specialist says we should probably also plan on the biologic treatments.

Also, within the next couple of months I will be scheduled for scans to assess the progression of the carcinoid cancer. A CT scan and the new (to the U.S.) GA-68 scan are in my future. The GA-68 scan produces much better pictures of the location of the neuroendocrine cancer tumors than the octreoscans that I have had annually in the past. When matched with the CT scan, the doctor may be able to more exactly locate the tumors in my body. I probably will also schedule a minor, day surgery to remove two lumps from my breast to determine if they are NETs or breast cancer or just benign lumps.

You can be sure that I will write about that stuff as it happens and results are known.

May we all have the best possible outcomes,
CyCopyright secured by Digiprove © 2016 Cyril Ball

Thanksgiving, Christmas, Cancer

December 15, 2015Carcinoid Cancer, Health, Travelcy

This Thanksgiving was spent in San Jose, CA. My brother Tony had lung cancer surgery. One lobe and a dozen lymph nodes and a piece of rib removed. We got good news. He is classed stage 2A. The cancer has not spread as far as they can tell. He now has to decide whether to have chemo.

I went there to aid and support him. He recovered so quickly after leaving the hospital that he was driving and cooking within 3 or 4 days. His son Cy and Cy’s fiancee Jordan provided us with a turkey dinner. Then his daughter Elise and her partner Carol provided another turkey dinner. We ate well. It was good to get to know them all.

A good thing for me was that I continued my daily walks and during my walks I found a Vietnamese Buddhist temple. I went there 4 times for meditation. It was a beautiful, serene place.

On returning here, I have had my last Sandostatin injection for neuroendocrine cancer at my HMO. Next month I will start going to Dr. Liu’s offices for that. Hoping that this will be a positive change in my life.

Today, I got an unwelcome Christmas present. The bladder cancer has recurred. Because I I am changing insurance, I will wait until next month to see a new doctor and get their opinion and action plan. I am told that the cancer is very low grade and that I should be able to wait a couple of months.

Despite the bad news, our house is decorated for Christmas and we will have a good crowd here this weekend for a holiday dinner. I am looking forward to it.

Merry Christmas, Happy New Year, Happy Holidays, Namaste,

Remarkable trip to Scotland

October 17, 2015Carcinoid Cancer, Health, Travelcy

Thursday evening we returned home from a ten day trip to Scotland where we visited our son Derek, his wife Kat and our sweet 2.5 yr old grandson Ansel.

We also spent two full days in Edinburgh seeing and re-seeing the sights and museums.

Why was it remarkable? There were two reasons:

The weather was dry and partly cloudy with highs in the mid 50s Fahrenheit. For this time of year that’s unusual.
Very little trouble with carcinoid syndrome especially the diarrhea.

The carcinoid syndrome always happens when I travel but this time I used a prescription recommended by the carcinoid specialist that I saw three weeks ago. It was diphenoxylate/atropine (Lomotil). It worked quicker and more reliably than the over-the-counter remedy which I had been using Loperamide Hcl (Immodium). The Immodium worked but I had to take more than recommended and it took hours sometimes.

We walked for quite a bit in Edinburgh, Anstruther and St. Andrews. I was disappointed that I am a bit weaker than I used to be (not a big surprise).

We had a lovely time visiting Derek, Kat and Ansel. Spent a lot time spoiling the little guy. That’s what grandparents are for!

Another Fishing Trip 2015

September 26, 2015Carcinoid Cancer, fishing, Travelcy

This time, my friends and I went to Salida, CO and fished the Arkansas River.
For me, the fishing was tough. I did not catch many. A couple of my friends did much better. However, in true Colorado style, the day time temperatures were in the mid 70s Fahrenheit. They dropped to the mid 40s during the night. The weather was great. Always remember this: “Trout don’t live in ugly places.”

We did not camp this trip, we rented a house in Salida. It was new construction and quite comfortable. Two of the three nights, we cooked our suppers. One night we ate at a restaurant that we had not tried before. It was pretty good. We cooked breakfast every morning and prepared a lunch of sandwiches and apples for lunch.

My friend Ed was driving us back to his Frisco condo on the last day. However, he had volunteered to do a river watch. The river watch consisted of 4 or 5 volunteers and a couple of National Forest people going to a stream named Chalk Creek in the area of a ghost town named St. Elmo on Mount Princeton.

We checked five places on the creek for width, structure, water temperature and oxygen content, took samples for water quality chemistry and collected underwater insect life to be analyzed by a specialist. This is the website: River Watch Colorado

By the time we met and drove up the mountain and onto rather rough jeep roads and checked the five places, we worked about 6 hours. It was rewarding and fun.

There was very little problem with my carcinoid cancer. One of my friends brought a large amount of chocolate goodies and I’m afraid that I cannot resist it when it’s easy to get. My carcinoid syndrome did occur after the second day of eating too much chocolate and stayed with me until I got home. A short explanation of this can be found in my blog post: Carcinoid doesn’t like chocolate.

I hope my readers can have such fun and rewarding times with good friends!

Amazing things do happen!

September 21, 2015Carcinoid Cancer, Health, Travelcy

Today was a great day! Medicare reversed a denial and is requiring my Medicare Advantage insurer to cover my consultation with Dr. Eric Liu who is a renowned specialist in Neuroendocrine Cancer and who is now in Denver.

The background is this: At my request, my oncologist wrote a referral to Dr. Liu. She warned me the the Medicare Advantage HMO would probably not approve it. She was right. They denied the referral saying that the HMO had the knowlege and facilities to treat Carcinoid Cancer within their network.

They have an appeal process. I wrote an appeal and included the NANETS 2013 Guidelines for the Diagnosis and Management of Neuroendocrine Tumors and the NANETS 2013 Guidelines. These guidelines were unknown to the oncology dept. where I am treated until I showed them to the doctors.

The HMO denied the appeal, but, because this insurance is a Medicare Advantage plan, Medicare requires that they get to review the appeal and denial. After review, Medicare reversed the denial! The health insurance is required to pay for my consultation with Dr. Liu. Socialized medicine worked for me!

I will certainly blog about my visit with Dr. Liu after it happens next week.

In other news, I am going fishing again tomorrow for three nights. We are not camping this time. We are renting a house in Salida, CO on the Arkansas River. The weather in Colorado has been amazing and I am looking forward to good weather and good fishing.

Namaste,

Another Camping Trip!

September 12, 2015Carcinoid Cancer, fishing, Health, Travelcy

Yesterday I got back late from 4 days, 3 nights sleeping in a tent and fly-fishing in Wyoming about 20 miles down a dirt road from Encampment. What a great trip! There were three of us, all over sixty ( two if us are 68). We each had a poor day of fishing. We all had very good days of fishing.

I was very happy that I had two days of almost exclusively dry fly fishing over rising trout (and catching them). Each of us had a best combination of flies. I fished a big fluffy stimulator and a quite small (size 18) parachute blue winged olive behind it. Even when I could not see the small fly, I could see the big fly jerk when the small fly was taken. Of course, a couple of exceptionally hungry fish took the big fly for some extra fun.

I had a kind of scary episode. The first morning one of my friends and I walked about a mile in our fishing gear over a rough jeep track to a point where we could wade across the North Platte River. It was knee high at worst and about 20 to 30 yards wide. It’s the kind of river that the bottom is covered with both round and irregular, slippery rocks (think greased bowling balls). Almost half way across, I was gasping for air. I could not seem to get it into my lungs. After standing in the current for a few minutes I was able to wade back and sit on a rock for about 15 minutes. I decided to fish closer to camp and walked back. The fishing was worse near camp and I only caught one fish the whole day. That’s my bad day. Why did I have the attack? We don’t know. It could be an effect of carcinoid cancer. I have had it a few times before. It could be heart. It could be asthma (I tried my friend’s albuterol inhaler and it did no good).

The second day we took a four wheel drive SUV on the jeep track and I still lost my wind a bit just before I finished crossing the river but I made it. The fishing was great on the other side after we walked another half mile on rough game and cattle trails. I never had another problem breathing.

The daytime temperature got to perhaps 72 degrees F. Bright sun all day. Nights got pretty cold. You could see your breath in the morning when you got up. It was probably below 40 degrees. The campfires were good. The milky way was magnificent. Only two other campsites were occupied. In other words, it could not have been better.

That must be one of those best possible outcomes that I mention from time to time,

Travel, Fishing, Bladder Cancer, Misc. August-13-2015

August 13, 2015Carcinoid Cancer, fishing, Health, Travelcy

Travel, Fishing

Sunday through Wednesday I had the pleasure of staying with a friend in Frisco, CO. Frisco is a small town in the mountains of Colorado at about 9,075 ft. (2766m.) altitude. It is near several well known ski resorts. The first day there we had the pleasure of walking around an outdoor art festival in the Frisco Main Street. Then, we drove to the Copper Mountain Ski Resort to their Guitar Town festival which featured an outdoor stage. On the stage all day, well-known electric guitar players and their bands entertained us. It was free and very much fun.

On Monday, we drove to the Arkansas River and fly fished there for a couple of hours with no luck. Then we drove toward Independence Pass and fished the Lake Creek which feeds Twin Lakes. We were likely over 10,000 ft. (3048m.) altitude. The fishing there was great! We each caught rainbow trout in abundance and my friend Ed also caught a brown trout and a brook trout. We had the creek to ourselves and a beautiful Colorado day.

Tuesday, guess what? Another beautiful Colorado day! We decided upon an adventure and drove over Ute Pass to fish the Williams Fork River. We took a road that we were unfamiliar with. Right where it dead-ended on the west side of a huge molybdenum mine, we found a tiny creek called Darling Creek. We fished a small hole near the road and caught numerous brook trout in a short time. Then we drove back along that road a few miles and fished an area of the Williams Fork River that we had never fished before. Again, we caught many brook trout and Ed caught a larger rainbow trout. It was an exceptionally beautiful place even for Colorado. “Trout don’t live in ugly places.” Again we were well over over 10,000 ft. (3048m.) altitude. This second day of fishing tired me a bit and I certainly got winded climbing steep river banks and wading the rivers. I believe most people would find activity at that altitude a challenge, so I feel good about it.

Wednesday morning I drove back to Denver (a mere mile high or 1609m. altitude.) and went to a followup meeting with my urological surgeon.

Bladder Cancer

Great news! The cancer is very low grade, not aggressive, below T1 grade in the T0 to T4 grading system. However, it often recurs. We decided that I would not need the followup BCG treatment unless the cancer does recur. The doctor had put some kind of chemo in my bladder during the procedure two weeks ago and it was removed the next day. This is supposed to help prevent recurrence.

We also decided to avoid surgery for my overlarge prostate gland, if possible. I am now taking a second medication to try to control the symptoms that I have from BPH (benign prostatic hyperplasia).

Misc.

Today is Thursday. I started on my normal morning walk. Immediately I noticed that the pains in my intestinal area were a little worse than normal. People with mid-gut carcinoid cancer often have pain in our gut. In my case, I don’t usually have it every day, just some days and it is usually very low intensity, not enough to hamper activity. It can be on one side or the other or both. Sometimes it is in the liver area but more often lower than that. Today it was a little worse, on both sides but not the liver, but I decided to power through it and keep walking. The pain never changed neither got worse nor better. I think maybe it is the disease’s (or just my old body’s) reaction to the changes in altitude.

Also, my spine with a degenerating disk and arthritis was bothering me. This was probably worse because of the wading and walking in the mountains. Wading has been compared to walking on greased bowling balls. The streams this week were a smaller gravel so not as bad as large stones but still the factors of walking, balancing, slipping and stumbling in a river do stress my back. I am 68 years old and many people have quit fly fishing by that age. I am lucky to be able to continue with it.

I was able to walk about 3.6 miles. Not as much as I had set out to do, but acceptable in the circumstances. In meditation studies, I have learned that pain is a teacher. I know many spiritual paths believe that. With meditation, we attempt to learn to just sit with our pain, whether physical or emotional, and embrace it (cuddle it like a baby is one teaching). Once we have recognized, acknowledged our pain, we are taught that we can live with it more readily. Thus far, these studies are helping me.