Up at 6.0am this morning for the slow wet drive into Vancouver in the dark. I don’t think the sun came up at all today and it’s still raining.
We saw Dr T. and what a change! Whenever we have seen him before he was abrupt, clinical and in a hurry to finish. Today he was totally opposite. The results. The bone scan shows more activity as expected. PSA is up to 20.2, not bad considering.
He discussed 2 options, chemo and radium 223. Radium 223 (Xofigo) is 6 injections of a radioactive isotope that finds rapidly dividing bone cells and kills them. It is not a cure but can give an average additional 3 to 4 months of quality life compared to doing nothing. The injections are 4 weeks apart, cost $5000 each and are flown in from Europe. I would be radioactive, especially Dumpy would be, but not a danger to others and I quote “providing it is not swallowed”!!
The other treatment, chemo, he said would have similar effectiveness re survival time, however, he minimised the side effects. He said the cancer is confined to bone, though if it metastasizes to soft tissue (liver or lymph nodes) radium 223 can’t be used. I asked him what would he do if it was him? He said he would have the radium 223 and then he could have chemo later if need be, but not the other way round. Sounds reasonable to me.
He also discussed giving a single shot of radiation to treat a spot on one rib that gets painful at times. Next it was off to x-ray. They took about 15 x-rays of my ribs, hips and legs. I will see Dr Y. next week and hopefully he will show us the scans and x rays.
Meanwhile I am still feeling reasonably well apart from some blood pressure issues, very high, due to Zytiga. I get tired very quickly and I don’t seem to have the energy I had in the summer. I will have to stop Zytiga before starting the radium223, so hopefully the blood pressure will improve. So, another decision to be made re treatment choices. I suspect I will go with the Radium223.
Got the news last Wednesday…psa is up to 16.7 from 10.2 a month ago. I saw my oncologist today and he said he is disappointed. Me too, I said. It seems likely that the Zytiga is no longer working. We will persist for another month and if still rising I will have some scans and possibly back to the radiation oncologist. I am still recovering from kidney stones and it has not been the best couple of weeks. I also had my 3 monthly Zoladex injection. The nurse said she hates doing Zoladex injections. It is a huge needle that injects a pellet into my abdomen. What about me, I said!
I am still trying to figure out how I feel about it all. Chemo was mentioned and dismissed. Dr Yun also mentioned a radiation treatment involving infusion of radioactive material into the blood stream (Xofigo?) I did some research and it seems BC Cancer Agency is planning a trial next year and I may qualify. Preliminary tests have shown great promise. A radioactive isotope targets cancer cells and destroys them while leaving healthy cells alone. There is still some hope. Google “Lutetium PSMA” for more information.
Next week I will have another bone scan. At least it will give us a picture of where the bone metastases are.
There are things I would still like to see and do. I need to prioritize because there is no way I can do them all. Most important at this time is to finish 3 tapestries, maybe 4 or 5 if time permits. Physical activity tires me quickly but needlework calms and distracts me.
I need to downsize as well. I plan to edit my many hours of video into something watchable. I want to post some of my life on YouTube, maybe someone will enjoy it. A video review of my life for my funeral is another project. I am fortunate that I have time to prepare. I am not afraid to die. What concerns me is that I will miss out on seeing some exciting things, such as great grandkids. Sometimes I feel as though it is up to me to make people feel ok when the subject of cancer comes up. I am still me and I will be til the end. Having cancer sorts out the real friends and I am blessed that I have Stefanie, family and friends who will stand by me. I thank God for such people.
I find that doing crosstitch is a wonderful way to relax and take my mind off myself. The works that I am doing are destined to remind people that I lived a good life and that I cared about them. The Shiralee tapestry is yet to be framed and will go to my daughter.
The second project is for Stefanie. It is her favourite Australian wildflower, the Waratah. Both are around 10″ x 13″ in size. Following the Waratah I plan to do a boat that my son built, a 36 ft Van de Stadt sloop.
Thank you to all of my blog friends for your support and encouragement. You do not know how much you mean to me.
There is no easy way to say it…after 8 months on Zytiga my psa has stopped falling at 9.2 and has now risen to 10.2 in 5 weeks. Does this mean Zytiga has failed? I don’t know to be honest and I must admit it scares me to think what might come next. I have been feeling pain in my ribs and discomfort in my sternum lately despite the Fentanyl. I take Tylenol occasionally when needed, otherwise I still feel well. I am still gaining weight, now 87 kgs. A little more than ideal. I walked nearly a kilometre today with my trusty rollator. I saw Dr Ho this morning and he said that it is possible the psa will continue to fluctuate around the current level and it does not necessarily mean that the treatment has failed. I hope he is right. If the next psa rises significantly I will probably have another bone scan. Chemotherapy doesn’t appeal to me, however I have read that some people have had good results without too many bad side effects, so never say never. Each month when I go for a checkup I see the people receiving chemotherapy sitting in their armchairs and I wonder what it must be like for them. I am reminded that I am not the only victim of cancer and that really I have had it pretty good compared to some people. I have survived 10 years from diagnosis and I have lived more than 70 years. I don’t have to worry about losing my marbles in later life. My next psa is in 3 weeks. Can’t wait to see the score!
It’s the end of yet another month. This month of August 2018 is special in a couple of ways. Firstly it marks 10 years of survival from my initial diagnosis when my psa was 12. Secondly my latest psa has finally dipped below 10, coming in at 9.2, so I am pretty pleased with that. Full credit for the improvement in my psa must go to what I call The Awesome Four. Four little (not so little) Zytiga tablets ($50 each if I had to pay for them!) that I take every morning followed by prednisone.
I feel good. I am fit and strong, walking well (with the aid of my trusty walker). The worst side effect is that my skin is becoming very thin and I bruise and bleed easily. However, that is a small price to pay for the resulting psa drop. What does lower psa actually mean though? It means that the cancer tumours will be less active and less likely to spread. Unfortunately it does not mean there will be less cancer, so I still need to be careful to avoid falls or heavy loads on my legs.
The cross stitch is progressing well. I am quite pleased with it and only a few thousand stitches to go and then the detailing and rigging to finish. I need to consider how I am going to frame the finished work and I have a few ideas. S has a love for the Waratah, an Australian native flower of striking beauty (just like her!) and that will be the subject of my next project.
Meanwhile life goes on. Mr Dumpy (colostomy bag) has been up to his usual tricks. I really need to get my diet under control. Multigrain bread and carbonated drinks cause havoc. Today, while out shopping, I suddenly realised that Mr Dumpy had filled almost to bursting point with gas. I was driving and so could not relieve the pressure, an operation that requires me to get out of the car. (It stinks!) I told S, “One more fart and it’s all over!” However, it held out until we got home.
Sadly, my Mum passed away a few weeks ago. She was 95 and had lived a full and enjoyable life. She said she was ready to go and after a short illness she left this world in her sleep. Unfortunately I was not able to travel to Australia to see her or attend her funeral. A generous relative held her phone up for the entire service, allowing us to watch live. The wonders of modern technology!!
So this month has been a mixture of good and not so good. Life goes on and so do we.
Thursday 2 August latest psa reading is 14.7. 4 weeks ago it was 19.7 and up until now it has consistently halved each month, so this reading, around 75% is a little disappointing. The good news though is that it is less than last time so I will take that gratefully.
Meanwhile I am continuing with the Zytiga and Prednisone with no apparent side effects apart from growing pert little breasts. My testosterone is virtually undetectable at less than 0.1. The good thing about that is that it starves the tumours and slows down any growth. The bad is that it takes away all sexual urges, then again maybe that is not so bad as nothing works down there anyway! My rib still aches at times and I take Tylenol in addition to the Fentanyl patches every 3 days. I notice the rib pain more on the third day.
The ostomy is still troublesome at times. It is always there except for a few hours every 4-6 days when I remove it to replace it. I like to just relax and give the skin some air for a while. I know it is not polite conversation to talk about one’s bowel habits, but when it is right in front of you it is hard to ignore. Most times when the bag is removed I can collect any “output” in a tissue and then put it in a plastic bag. Last time, this was working quite well until suddenly there was a lot of gas, causing S to leave the room and then an increase in “output” causing me to hastily fit a new skin barrier and pouch. Luckily I got it on in time and didn’t make a mess, however the new bag quickly filled up. Should have waited, but that is ostomy care. Full of surprises!
However, life is good and I am glad to be alive. I have been following the Golden Globe Race and have found a program that will allow me to virtually enter the race. Haven’t tried it yet so that is a subject for another blog at a later date.
It is two months since I started over after my disastrous oversight. 16,000 stitches down and only 12,000 to go plus a bit of detail work. I am still enjoying the task and life is good!
No doubt you have looked at my avatar and wondered what it was about? Well maybe not. However, the following is the story of “Maran-Atha!”, the next boat in the series of vessels I have owned/built. Some of the photos have been rescued from a watery grave at some point and have sadly deteriorated, on the other hand, they help tell the story.
At the same time as I was building “Shiralee” a group of RAAF boys was building a 50 ft ferro-cement boat not too far from where I lived. It was a Sampson Sea Breeze, a Canadian design. The hull was launched as a bare shell with no fittings of any kind and towed to Newcastle Harbour where it sat for the next 7 years. Neglected and alone it was left moored to a long jetty. At one point floods tore it from its moorings and it was washed onto one of the harbour breakwaters where it suffered a large hole in one side, luckily above the waterline. The hulk was salvaged and towed back to its mooring. The next significant incident occurred when someone untied the mooring lines and the hull became wedged under the jetty. As the tide rose, the hull was trapped and then capsized and sank in 5 metres of water. No one took responsibility, the builders were long gone. The jetty owner was told to refloat it or face a fine. Divers went down and covered as many holes as they could. Next compressed air was pumped in to expel the water and the hull slowly came to the surface…where she was tied up and left once more.
A friend told me he had seen an ad offering a big boat for tender. “Shiralee” was becoming rather cramped as the kids were no longer babies. I took one look and recognised the boat at once. The jetty owner told me no one was interested and if I paid the cost of salvage it was mine…and that is exactly what I did. Where others could only see a dirty, damaged wreck, partly full of mud and water, I could see a beautiful ship, a new home for my family that could take us anywhere.
“It” became “She”
They say a boat is called “she” because they are often seen tied to buoys. Another reason is that it takes a lot of paint and attention to keep them looking good, although in S’s case I would dispute that! Anyway, I had the hull towed to Lake Macquarie, 15 miles up the coast, and began to rebuild and restore. The family and I had shoveled and scrubbed a couple of tons of mud out and given her a good clean up.
This photo shows the hull after clean-up. You may spot the temporary repair to the hull, a grey patch near the mooring pile. The first job was to chip out the repaired bit, wire in new reinforcing rods and mesh and then re-plaster. When finished you would never know it was there.
When she was hauled out of the water there was a layer of barnacles 4 inches thick.
Cleaned up…the bottom was perfect. That’s me standing under the bow.
Passing “Shiralee”, now painted yellow. I tried blue for the hull but did not like it.
She was so big! After “Shiralee” this was a monster. I sat inside the empty shell wondering how I was ever going to fill up so much space. Well, it is surprising how a boat can shrink once you start putting in the furniture. Many friends said I was crazy. Others wished me luck. A few pitched in and offered help. Thank you!!
Next came the cabin soles, known to landlubbers as the floor. There were four levels. We required 3 cabins (bedrooms), a head (toilet), a bathroom, a galley (kitchen), a chart table, engine room and a workshop. I had to find and fit an engine and propeller along with all the bits that make it work. She also needed a rudder. Of course, every ship must have a name. I was 27 and what was known as a “born again Christian”. I must admit I have mellowed a lot since those days. I chose the name “Maran-Atha!”. It is from the Bible and basically means “The Lord is coming!” (I still believe that, by the way, although I also believe that each of us works out our own relationship with God, or not, as we freely choose.)
I was fortunate enough to have a job where I had a company utility vehicle, access to woodworking machinery and off-cuts of good quality timber. I also had the skills I had acquired as a Marine Engineer. I made as many of the fittings as I could, fitted glazing to the portholes and built hatches and ladders for access. I found a second hand diesel engine for a very reasonable price. It weighed a ton and the crane collapsed while lifting it on board. The engine landed on the deck and amazingly no damage was done. I had a good contact at a glass company and scored some bullet proof glass for the wheelhouse. Oregon pine (Douglas Fir) was ordered from the US for the masts and they were built in the warehouse where I worked. I carried them home on top of my work vehicle…late at night! I even made the sails!
The first galley. Later I removed the steps and rebuilt the whole thing. See next blog entry.
Two years later we were ready to go to sea! In my next blog I will describe living and traveling on board along with some alterations made as the children grew older.
Way back in the early 70s I built a boat in the front yard of my house. I have been mad about boats for as long as I can remember, way back to when I was a toddler playing in the gutter near my home. As I grew older I was inspired by the sailing qualities of Chinese Junks and I had read of Western style vessels fitted with junk rig. There were no plans available so I decided to design and build my own. As a Marine Engineer, I had studied Naval Architecture and I had picked up quite a bit of knowledge of boat building. My first real boat was a 12 foot plywood dinghy with junk rig. It sailed well and was a lot of fun. ” Shiralee”, an old Australian word referring to a swagman’s bed roll, and meaning both a home and a burden, was to be 30 feet long and built from Ferrocement. A lot of “Ferro” boats were being built around the 70s and is to my mind an excellent way to build a strong, long lasting boat. “Shiralee” is still active in Queensland’s Moreton Bay area. However, building this way is time consuming, with well over 10,000 wire ties all done by hand. There is also over half a mile of 1/4 inch steel rod to mould into the shape of a boat.
First, I built a scale model to check that the balance was correct and that the boat would be stable and also sail well. The model was a great success. It demonstrated that the boat would sail straight without constant attention to steering, in fact it would sail itself, adjusting to wind changes automatically. It was also stable and would right itself after a capsize. It was time to start building for real.
The boat was designed so that the hull up to deck level could be built in my garage. This was where much of the tedious bending and welding of steel rods could be completed out of the weather.
The next step was to move the frame to the front yard so I could finish applying 5 layers of wire mesh. Surprisingly, when this was completed the deck was strong enough to walk on. The cement only needs to keep out water, however it adds much to strength. The mortar used was carefully measured and mixed, it becomes a strong flexible structure after curing for around a month, being kept constantly wet. I hired a team of professional plasterers for an expert job. After 6 hours they were done. Using the knowledge I picked up from the plasterers, I completed the deck and cabin myself.
My children loved being on the deck! I also made the sails, masts and most of the fittings!
Came launching day. 7 tons was almost too much for the crane! We hired a low loader semi trailer for the trip to the water. The local TV station even put us on the news that night!
And, as predicted, “Shiralee” sailed very well. She was easily handled by one person and easily kept up with more conventional boats on most courses. She handled strong winds well and was a joy to sail. I was not able to predict the economic downturn that was about to hit. I was self-employed and soon had to sell my house. We lived on “Shiralee” for a few years until the children became too big and needed more room. That will be the subject of a future blog. How long did it take? Three years! Would I do it again? In a heartbeat!!