Decision time….again

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.

PSA RISING AGAIN

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.

PSA Rising⁉

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!

The Awesome Four!!

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.

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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.

PSA continues to fall.

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.

Building “Shiralee”

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.

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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.

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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.

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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.

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My children loved being on the deck! I also made the sails, masts and most of the fittings!

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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!

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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!!

North to Alaska!

In May Stefanie and I enjoyed a cruise to Alaska accompanied by my sister, Rae and her husband, Ray. Two rays of sunshine! Is it really necessary to say it was wonderful! It was great! The weather was kind to us with calm seas, not too much overcast and some sunny days.

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Heading North in  “Island Princess” there was plenty to look at as we were often close to shore. Our itinerary included Juneau, Skagway Glacier Bay and Ketchikan.

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Skagway was interesting, we should have taken the train ride with Rae and Ray, however we enjoyed visiting the town and the gold mining museum. I was particularly intrigued by the old steam snow plow on display near the town. It can be seen in action on YouTube, search “Skagway Snow plow”. Spectacular.

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The highlight of the trip was undoubtedly a visit to Glacier Bay. It was raining and cloudy as we approached the Margerie Glacier. The guide said it was good that it was overcast because the colors of the glacier would be more intense. As we drew nearer the sun came out. The guide said we are very lucky to see it in sunshine!! We drifted for a long time, just off the face of the glacier. We could hear the thunderous cracking of ice deep within the glacier and every now and then pieces would break off and splash into the sea. It was really quite awesome. We spotted a sea otter playing with a small chunk of floating ice as we departed. Too far off for a photo though.

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Of course, a great part of cruising centres around life on board. We dressed up for a formal night.

The last stop was Ketchikan where we went ashore and explored the shops. Observant readers will no doubt notice the effects of hormone treatment on my chest!! As well as my ostomy bag!

Returning to Vancouver, as we left the ship and proceeded through Customs, we were surprised to be pulled aside and taken away for questioning. We were detained for well over an hour, felt like two. I had applied for an extension of my visa. I had been waiting 3 months for approval that normally comes through in 35 days. Apparently I was not supposed to leave Canada while approval was pending. No one told me that! In the end it was all sorted out and I was handed my official visa extension giving me another 6 months from that date, so it was a good outcome, if a little scary. When we needed to use the bathroom we were escorted by an officer to make sure we didn’t do a runner, I guess. Just imagine me trying to escape with my walker!

All in all it was a great experience and created good memories for both of us. I was slowed down by my condition, however I am very happy to have done the things that I did do. It was cold and I think our next trip will be to warmer climates. Having said that, Alaska would not be the same if it was not cold!

Tapestry Blues

This past week has not been one of the greatest. First was the discovery, after 14000 stitches that I had commenced my tapestry at the wrong end. In other words, at least 4 inches below where I should have commenced it if I had bothered to check how much was rolled up on the top dowel. This meant I would run out of canvas as I reached the deck of the boat. Not Happy!!

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This is the original photo. I designed and built this boat in the early 70s. “Shiralee” was 30 ft long and displaced 7 tons. She was very easy to sail with her junk sails and long keel.

Anyway, as I near the end of my life (let’s be realistic) I decided I wanted to leave something of myself for anyone that might be interested. This was an achievement I was proud of, so the idea of making a tapestry was born.

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And this is how far I got before discovering my error. 14,000 stitches!

I tried to fix it by cutting off the top of the canvas and sewing it on the bottom but it was never going to work. Besides, there were a few things I was not totally happy about…so I decided to start again, however I made some adjustment to size and colour first. The new one will have 29000 stitches as against 34000 previously.

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A perfect tapestry, no mistakes. Definitely starting at the right end!

Checked 3 times!!

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One week later, well on track. I try to complete at least 200 stitches per day. This week I have completed over 2000 so quite pleased with myself.

Now for the worst news of the week. I finally obtained my medical records from my hospital stay in January. Scans show that my cancer has metastasised further to my ribs and sternum and also further into my femur.

My psa continues to fall. I had a blood test today, results soon but I am expecting somewhere in the 40-50 range. It seems to halve every month. Naturally my beautiful wife is upset as are my close relatives, but what can you do? Life goes on. I feel well apart from some occasional mild discomfort in one rib. I am active and enjoying life. I made it to 71 and expect to see 72, so I have very little to complain about.

Cause for Celebration!!

Why would I celebrate a psa of 91.6? Because it is lower than the last psa of 160, that’s why!! The Zytiga and prednisone continue to work so S and I are very pleased with progress. The cementoplasty in February has restored strength and stability to my left hip though I continue to use my stick and my faithful walker when I am out and about. Cancer wise I have no symptoms that I am aware of. There are no ugly swollen bits of bone and to look at me you would think I am perfectly well…and I feel well, better than I have in a long time.

The photo above is of a cross stitch that I began in March as both therapy and pastime. It will be a picture of a boat that I designed and built back in the early 70s. I hope someone will treasure it when I am gone. There is love for family in every stitch.

WARNING!! THE NEXT PARAGRAPH CONTAINS GRAPHICALLY GROSS SCENES!!

My life at this time is great. There is only one drawback apart from the inevitable, which I plan to postpone for as long as possible. Ostomy blues. The polite word for it is “output”. Mostly my output is manageable. You may be aware of the expression “sticks like shit to a blanket!” Well, I am here to tell you the “output” sticks to everything! Now I always wear protective gloves when draining my pouches, and mostly I manage to avoid trouble. Last week we were out shopping when I felt a sudden and voluminous outpouring of output. I quickly went to a disability washroom only to be beaten to the door by a staff member. After a considerable wait, S knocked on the door and the staff member came out. I think she was taking a break. Anyway, I knelt before the throne as I do to empty the pouch. The next step is to sit on the throne while I clean and reseal the pouch.  However, as I made the transition from kneeling to sitting, there was a sudden rush of liquid you know what and a mad panic to minimise the damage. You can guess the rest! I tell you these things because no one talks about it.

Should I tell you what happened this week? It was even worse. Every 5-6 days I change the adhesive flange that supports the ostomy pouch. While I am unencumbered, feeling free, just me and my stoma, I like to have a bath and then allow my skin to air and have a break from the sticky plaster that supports the flange. This usually does not cause a problem, and on the rare occasions there is output, I can catch it in a tissue and dispose of it in a plastic bag kept nearby for the purpose. This week however routine turned to disaster. Diarrhea Disaster! After about an hour of relaxing rest while watching TV, airing my belly, suddenly there was an outpouring of output like you would not believe. Totally without warning. There were screams of horror, more tissues and plastic bags required quickly. I got off the bed while S removed the sheet and headed for the bathroom where I sat for the next half hour in my birthday suit while the thing in my belly got rid of what was left.

Well, now you have some idea of what it is like to live with a colostomy bag. I apologise if you are having dinner… but at least there is still cause for celebration!!