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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!!

Perspective

It all depends on your point of view. A year ago a PSA of 160 had me booking a flight to Australia, thinking it is all downhill from here. This week a PSA of 160 is a cause for celebration. Not too many prostate cancer survivors would agree with that, however it is true in my case.

You see, my last PSA was 1800 and the one before that was over 2100. I am pleased to report that Zytiga with Prednisone is working well and I am looking forward to even lower numbers in the future. Not only that, but I feel great!! Maybe it’s the Predisone, who knows. My appetite has returned, I am walking really well with no hip pain. Even though I feel stable I still use a stick or my walker. I don’t have the same endurance that I had 2 years ago, but I am happy with what I do have. The cementoplasty has worked really well. Whether I will have the same procedure for my spine remains to be seen, so far so good! At my last weigh in I was 77kg, up from the 69kg skeleton that came home from hospital. Friends are amazed at how well I look.

Ostomy blues- It is good to be alive, but this bag on my belly is really no fun. S is really pleased that now I can empty the thing by myself. I don’t even smell it any more!! It is a very interesting exercise, getting close up with your recent dinner. Tomorrow S and I have an appointment with an Ostomy Nurse and we will discuss what works and what doesn’t. The biggest problem involves wearing clothes. The stoma (bit of bowel sticking out of my belly) is right on my belt line, so I have to wear my trousers a couple of inches lower than usual. OK, but I am not a teenager. The colostomy bag hangs over my belt. I wear long shirts and sweaters but it still manages to peep out at anyone who might be looking. Very embarrassing. I can’t wear shirts tucked in, however I bought a guard that is supposed to protect the stoma so a belt can be tightened over it. It works but not very well. I will have to invent something! S came up with the idea of folding the bag over and taping it up. Works OK until the bag starts to get full which happens any time of the day or night, without warning. That means I have to take a bag of spares, rubber gloves and cleaning wipes with me if we go out for any length of time. How would you feel if you could not control your farts? I fart through my belly, not the normal raspberry, but a strange strangled gurgling noise that causes much amusement and curiosity. The literature tells me that ostomy bags (pouches) are scarcely visible beneath clothing…wrong! As soon as it gets any “output”, a nice word for shit, it pokes out as though I am smuggling wildlife. (Hope I don’t get frisked at Customs!)

However, the surgery doubtless saved my life so I am grateful for that and “Dumpy” and I will just have to come to terms with each other. Soon S and I will be heading off on an Alaska cruise with my sister and brother in law. A well earned reward for both S and myself. We are planning a road trip in June when we hope to drive down the Oregon Coast, maybe visit San Francisco. (Sailing under the Golden Gate bridge has been on my bucket list for many years) No one knows how much time they have left, so enjoy life to the full if you can. Thanks for reading my blog, and a special thanks to my good friends who encourage me with their comments. I do appreciate you even though we have never met, and you are always in my thoughts and prayers.

Going Down!

Yesterday I walked 220 steps. That doesn’t sound like much, does it? Even less when I tell you I used my walker. That is the longest walk I have taken this year! I was tired afterwards but it felt great to do that.

My new medication, Zytiga with Prednisone is working well so far. After 15 days psa dropped to 1800. After 3 weeks I have no adverse side effects, just occasional hot flushes. I am also using Fentanyl patches for pain control. It is very effective with none of the side effects of morphine.

Following the cementoplasty to my left hip, my leg feels much more stable. I can walk short distances unaided but with a limp. There is no limp using the walker.

My sister Rae and brother in law Ray have come all the way from Australia and we are enjoying their company. They have rented an apartment in Richmond. We are looking forward to a 7 day Alaska cruise with them in May. Having a disability got us a really good deal, so it’s not all bad!

Finally, a word on ostomy pouches. It is a smelly, messy process that still requires both of us to perform. Some days it fills up 3 times. Some days not at all. Twice we have needed to get home quickly to avoid a disaster! I expect I will soon be ok to empty the pouch on my own. I have to go down on my knees before the throne and this involves quite a bit of preparation. Changing base plates is a different story. Stefanie has that job as I can’t see to make an accurate fit around the bit of bowel that sticks out of my belly. Besides I have to be on the lookout for unexpected eruptions which fortunately are rare.

The journey over the last few months has not been fun. We all hold onto life by a thread, so enjoy what you have while you still have it! Thanks everyone for your support, prayers and good wishes. They make a difference!

2018.. Not the best year, however the journey continues.

During November and December last year I was having more pain, loss of appetite and increasing fatigue. My psa was doubling every 5 to 6 weeks, so naturally I assumed that all of my symptoms were due to spreading cancer. I would have one reasonably good day followed by 3 or 4 days bedridden. By the end of December I could not eat anything and the pain in my hip, back and abdomen was becoming unbearable . January 2, I was taken to hospital by ambulance. I could hardly stand up, I was so weak. Next day I had x rays blood tests and CT scans. I had my notes with me including my last psma scan on disk. The doctor said he would need to open me up to be sure about a diagnosis. Next morning I woke to find I had a colostomy bag attached to my belly. What a shock! It turns out my large bowel had perforations that had abscessed and healed over time. The infection had spread to my small bowel and abdomen. Peritonitis had set in. They removed a section of each bowel, joined the bits together and brought the end out of my belly. There were also 2 drain tubes and a large dressing. I was in hospital for 3 weeks. Toughest 3 weeks of my life. I felt like it would have been better to let me die. Stefanie was there for me every day, she bathed me, helped me pee, made my bed comfortable and comforted me. She took me home in a wheelchair as I still could not walk. Stefanie has been amazing. She has endured so much yet cared for me every inch of the way, always patient and understanding even though I was deeply depressed at times.

While I was in hospital I got connected with the cancer team, so I now have 2 oncologists, a pain management specialist and a palliative care specialist, as well as a community nursing team who came to our home to help us with ostomy management. My latest psa was 2160. A scary number! 2 weeks ago I had a cementoplasty of my left acetabulum, or hip socket. They inject bone cement into the weak bone and it restores strength and function. I could hardly walk afterwards but now feeling much stronger and much less pain.

Some good news is that there was no evidence of cancer in any soft tissue and no impingement on my spinal cord. Radiation is still an option for my spine. My current medication is Zytiga, prednisone, Zoladex, Fentanyl and oxycodone for pain. I am slowly gaining weight. I was down to 69kg from around 80. Now up to 72kg and getting stronger each day. Next psa a few weeks from now and hoping for a much lower number. As always, I thank everyone who is supporting me with prayers and good wishes.

I Never Thought….I Always Thought

I never thought I would pass Maths……. but I did.

I never thought I would get married and have children….but I did

I never thought I would find S again…….but I did

I never thought I would build a 55 ft yacht…….but I did

I never thought I would go to University………but I did

I never thought I would get divorced……..but I did

I always thought I would be wealthy………but I’m not

I always thought I would sail around the world…..but I didn’t

I never thought I would have Prostate Cancer………………………

The Lake House, A review.

Years ago I saw a movie “The Lake House”. I think it was Sandra Bullock, about a couple who communicated across time. It was far fetched but enjoyable. When I discovered a book of the same name hiding in one of S’s cupboards, I thought it was the same story. But I was wrong……..

“The Lake House” by Australian Author Kate Morton turned out to be much more believable. The Mystery story set in Cornwall was so well described that both S and I felt as though we were there as we read it to each other. The mystery so compelling that we could not put it down until our eyes would no longer stay open or our tummies rumbled so much we had to stop and eat. Neither of us guessed the truth.

This is a realistic detective story, so many twists and turns and unexpected outcomes that it will keep you guessing until the end. And even then there are more surprises in store that leave you feeling satisfied that all turns out as it should in the end. The plot centres on a well to do family in 1933. 70 years later a detective on forced leave finds an old abandoned house and is compelled to investigate. She learns that a baby boy disappeared from the house without trace. There are many suspects but few answers. The story will take you through two World Wars, PTSD, murder, romance and tragic circumstances before you discover the surprising truth. It is a story well told without descending to sex scenes, foul language or even violence, yet all of these and more are implied.

I thoroughly recommend this one. One of the best novels of its genre that I have ever read.

What a Shocker!!

My PSA about 6 weeks ago was 180. A month before that it was 140, a steady rise, not totally unexpected given that my only treatment was Zoladex to reduce testosterone and Xgeva to strengthen bones. I knew that the Zoladex had long ceased to be effective in reducing psa, but the oncologist thought it was worthwhile continuing. He said I was “too healthy” to have chemotherapy at this stage. Not that I wanted to have it anyway. He said unless I have chemo at some point he was not allowed to prescribe other medications or treatments. First, the chemo must fail, then we can try something else. What a system!! Bet Big Pharma dreamed that one up!!

Last week I received my latest PSA. 392!!! WTF!!! More than doubled in 6 weeks. I was in shock. Psychologically I felt a distinct increase in pain in my hip that night. I had been prescribed morphine rather than the pain patches I had been wearing for the last month. “20mg tablets, take 1-2 4 times daily when needed” I could only get 10mg tablets. 240 of them. Someone said if I took enough I could end all pain…forever!! Just go to sleep…well, I’m not ready for that one yet.

Being wary, I took 5mg, half a tablet- 1/4 of the prescribed dose….No ill effects. Good. Four hours later I took 10mg. Felt a little groggy but less pain….OK….Four hours after that I took a second 10mg tablet and tried to sleep. Thoughts of death and dying were racing through my head. The number 392 kept nagging me awake. What does it really mean? I feel OK, I have not lost weight…the pain is in my head, surely. After an hour or so I took an Ativan to help me sleep. I am kind of addicted to Ativan.. just 1 mg to help get to sleep.

At 3.00am I woke having to pee. I felt a bit dizzy, a bit sweaty. I made it to the bathroom. On my way back to bed it hit me, I collapsed onto the bed feeling extremely dizzy and nauseous, I began to sweat profusely and I could feel a sharp pain in my chest. “I am going to die” occurred to me. S woke up, took one look at me and said “you are having a reaction to your medications”. Lucky she is a retired RN and after observing me, she said “this will pass, no need to call 911”. I did recover within a short time. Later Dr Google informed me that you must never take Ativan with Morphine. It can be deadly!!

So, here I am in Canada, away from my doctors in Australia. I have applied for Permanent Residency and also for medical expenses assistance. My travel insurance won’t touch anything to do with cancer, so it is now a waiting game. I don’t think there is much that can be done anyway, so I will just keep going as long as I can. I have not needed any pain meds for the last two days. I wonder if the Buprenorphine patches could have caused an increase in psa?

I feel good within myself, I have no lumps or indications that the metastases in my bones have grown larger, though I am sure that they have. The only thing that has changed is that number. I am still having Zoladex (photo above) and Xgeva and taking each day as it comes.

I know that there are many people who read my blog and follow my progress. I am grateful for your good wishes and prayers and I love to read your comments. Please, if you pray, pray that I will continue to face this thing courageously and with a positive attitude. I hope that my story is of help to someone else who might be in similar circumstances, and that if you are, you will draw strength from knowing you are not alone.

 

Carry On Regardless!

Finally, I feel ready to update my story. We have been home nearly 3 weeks now. The day we arrived was overcast and smoke filled the air. It must have been an instrument landing because I didn’t see a thing apart from cloud shortly after we departed LAX until we landed at YVR. We had a late night before departure due to trying to fix a Qantas stuff-up. I had a hard time with walking and standing in queues recently so we arranged for wheelchair transport at LAX and Vancouver. The check in person at Sydney said I wouldn’t need a wheelchair as it was only a short walk. She was wrong! However we did end up with three seats to ourselves on the Airbus A380 and I survived the trip without too much discomfort.

S’s son picked us up and drove us home. When we got there he had lost the key so it was a 2 hour wait before a locksmith got us in! It was good to sleep in our own bed though. Then it hit me……it had been sneaking up on me since we boarded the flight in Sydney. Depression…. The late night trying to communicate with Qantas…no cooperation re wheelchair……a long 14 hour flight..5 hours at LAX, then another 2-3 to Vancouver….it all adds up.

I learned a lesson at LAX….for the first time I was treated like a person in a wheelchair, which I was. I felt totally helpless and useless…I watched S struggling with baggage and I was unable to help her… I was almost crying with frustration until someone kindly offered to help. Immigration was a breeze and we didn’t get lost, thanks to my wheelchair assistant, so mixed feelings about that. Arriving at Vancouver, no hassles with immigration or customs despite the huge bag of drugs I was carrying. Enough pain killers to kill a horse, 2 Zoladex syringes and 5 vials of Xgeva which had to be carried in a small ice box, kept below 5 degrees C at all times. Again, at the baggage carousel, the frustration of feeling helpless. I begged a man to help S with the bags. He pushed me all the way to the car. S’s son met us in the arrival lobby and took over the baggage. But still, I want to be the one to do these things.

When people talk about prostate cancer metastasising to bones, it seems it is all about pain control. There is a lot more to it and not just the risk of fracture. Suddenly within a few short weeks it seems like I have become an invalid, barely able to climb steps or walk any distance. Suddenly I can’t carry the groceries any more. The weather didn’t help. Gloomy weather, gloomy me. I was missing Australia, I was missing my family. I was afraid of what could happen if I fractured any bones, insurance would not cover me. I guess it is no wonder I felt depressed. I could not get interested in anything…..

My big problem seemed to be mobility. I had used a scooter before when I had radiation. The problem with a scooter is, how to carry it in the car? Even the lightest ones were too heavy and too bulky for our car. I had been using a walking stick to ease the load on my left hip, but it is awkward and does not feel balanced, so I started looking at walking frames. They have come a long way from the old zimmer frames. I had seen people using them of course but did not think much of the idea of using one myself…but still…maybe?

After a bit of research I thought maybe that’s the way to go after all. A few days later I was reluctantly sitting in a supermarket coffee nook waiting while S did some shopping. An elderly lady with a walker came and sat near me and we got to chatting about her device. She said she wouldn’t be without it, it keeps her mobile. She told me where she bought it, so next day……….

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It is called a “Rollator”. It is lightweight, it folds flat, fits in the boot (trunk), I can lift it easily, it has brakes and it supports my weight evenly. I can walk around the malls, streets, parks or anywhere I need to go. Best of all it has a comfortable seat and a carry bag. If I need a rest, I can sit down. It is modern and stylish and easily seen when crossing streets. People using walkers smile and say hello!! And I smile and say hello back! I did a little test using the bathroom scales. The walking stick supported around 7kg, however was not consistent. The rollator decreases the weight on my hips and spine by 15 kg in a smooth evenly balanced way. I know it is not a scientific test, but convincing enough for me.

Another factor is that my pain levels have been increasing. I have recommenced using Norspan patches, 5mcg/hour. So far it is working, S gave me my second Xgeva shot 2 days ago. No side effects to speak of so far apart from the earlier depression. I take Ativan to help me sleep. Curcumin for its anti-inflammatory and healing properties and Gumby Gumby, an Australian Aboriginal herbal medicine, used for all types of conditions.

Every now and then the battle against cancer gets us down. After all we know who is going to win in the end. But the end is not yet. The fight goes on, I will continue to do what I can do and adapt to what I can’t do, if I can. BTW, I have started a new project, a Christmas stocking for my Darling. It is a needlepoint tapestry. It is very good therapy….My mood has improved, I think I will do more in the future…..

Up, Up and Away!!

It has not been the best of times, and possibly not the worst of times, however it could be better……

S and I are preparing to return to our home in Canada. In fact we are due to fly out next week, and we are really looking forward to reconnecting with our friends and S’s family. It all sounds good, however it is not so good. Today my GP advises my latest psa is 180, up from 140 just 27 days ago. S gave me my first Xgeva injection a few days prior to the blood test. The plan was to have the blood test first but circumstances got in the way. The psa rise could be due to the Xgeva injection??? Who knows? There doesn’t seem to be much information around about this, just dire warnings about necrosis of the jaw. With that in mind I visited a local dentist to have some work done. I was quoted around $500, but after an hour and a half in the chair the bill was closer to $1000. However they did a good job and I feel confident that my teeth and gums are in good condition, which will reduce the risk of necrosis. I cannot have any dental surgery while I am on Xgeva. I am to have injections every 4 weeks until I see my Oncologist in February 2018.

My doctors have been very helpful, providing me with 6 months of necessary medications. Plans for leaving were going well until yesterday when I woke up with severe pain in my hip, radiating to my back and knees. I could barely walk and I was worried that perhaps I had a fracture. So it was off to the ED at the Mater Hospital. After x-rays the diagnosis was no fracture, which was a relief. I was given stronger pain medication and sent home. The doctor advised me that the pain was probably due to cancer in the femoral head and acetabulum (the hip socket) rubbing together. For the record I had been driving a manual shift car and had driven 2 long trips a few days prior to the onset of pain. I feel sure that this aggravated my hip and caused pain.

Last night, dosed up on pain medication as prescribed, I slept well and woke feeling much less pain. The writing is on the wall. I need to be much more careful and take steps to prevent subsequent damage. I am trying out a 3 wheel walking frame with brakes. It will help keep me stable and hopefully warn others that I have a problem.

As I write, I am still in shock at hearing that my psa is up to 180. Hopefully it is just a blip. I will inform my medical oncologist of all recent developments via email, and we will see what happens next. We still intend to fly out next week as planned. Life is for living, not hanging around waiting for medical verdicts. We have done enough of that in the past 4 months. A cruise to Alaska is a distinct possibility at this time if we can get a last minute booking. Holland America Cruises, here we come!!

My sincere appreciation to all my blog mates with gratitude for your support.