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………………………

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……….

IMG_20170913_202239489IMG_20170913_150209050~2

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.

Good News!!

Tuesday 15 August. The day finally arrived for the long awaited visit to the Medical Oncologist. After our previous bad experience with a registrar, we were disappointed when a young female doctor called my name. Not another registrar! How wrong we were. First she asked about my medical history and how I came to live in Canada. She discussed treatment options with insight, sensitivity and compassion.

Once she had sufficient information, including the story of how we were re-united after 51 years, she asked us to wait while she spoke to the Medical Oncologist. It turned out he is the Director of the Oncology Department and he came to see us. He explained my current status in detail and showed us the old and new psma scans side by side as he did so. He discussed treatment options and advised that as I am experiencing few symptoms at this time he feels it is too early to start chemotherapy. Apparently the Zoladex is still having a beneficial effect and he believes the sudden rise in psa was due to me not using it when it was due.

He also said that a psa of 140 was not a bad thing as it has been stable at that level for the past 2 months (apart from a brief spike of 160). He was very understanding about our desire to return to Canada and has supplied me with scripts for enough medication to last 6 months. Ideally he would like to see me in 3 months, but is happy for me to keep in touch via email, monitoring my psa and advising any change in symptoms. I am to see him again in February 2018.

So, all things considered a pretty good outcome. I need to have some dental work done prior to commencing Denosumab (Xgeva) injections every 4 weeks, to strengthen bones and hopefully slow down the bone metastases. I am also to continue Zoladex injections every 3 months. There is an increasing risk of hip and femur fracture so no more skate boarding for me! (Just kidding, I have never ridden one!) I am also taking Gumby Gumby daily, it is supposed to boost immunity and healing. The doctor said it can’t hurt, so worth a try.

So, S and I are looking forward to returning to Canada in a few short weeks. She has been very patient and I am blessed to have her in my life. My sinuses are much improved and I am feeling much stronger. Ready for the next stage in the cancer merry-go-round.

I am very grateful for the support and prayers of so many people, people I regard as friends, all around the world. Thank you, and God bless you all.

Recovery and Stability

Another psa test has been assessed and this time the news was not too bad. Holding steady at 140. The same as it was 5 weeks ago. The question is, why?

July 19 was sinus surgery day. It went well apparently, I woke from the anaesthetic feeling like my face had been kicked by a horse, but once the pain killers took effect I felt pretty good. S was there to comfort me and it was so good to see her smiling face. I did not sleep that night, blood pouring from my nose, over my pillow and sheets. Around 3 am I was feeling great. I finished a book I was reading and had a good breakfast. I could not believe how good I felt. I could breathe through my nose again.

It did not last however, whatever they gave me wore off the next night at home. The pain and discomfort set in and the gunk from my sinuses began to flow. Next day I was bleeding so we called the ambulance just in case. It did stop eventually though. Sneezing was extremely interesting, resulting in technicolor artwork that would do Pro Hart (google him) proud, “study in red and black”.

I suspect the level psa could be connected somehow to the large doses of prednisone I was taking before and after surgery. There has been almost no hip or back pain since then either and I am walking well, without a limp. I have had a few dizzy turns however when out doing the shopping, but that is improving.

More than two weeks of nasal rinses later, I am still getting gunk out of my sinuses. My breath smells terribly, but at least my sense of smell has returned and food tastes like it should. I am getting stronger every day in preparation for the possibility of chemo in just a few short weeks.

S and I are missing our home in Richmond BC and hoping to return soon well before the dreaded Canadian winter sets in.

Pain in the Nose!

I guess it has been a while! Life goes on down under in Australia. S and I have been filling in time waiting for my appointment with the Medical Oncologist and the next step, possibly chemotherapy. Meanwhile my sinusitis issues have continued, slowly getting worse until my GP arranged a CT Scan. It turns out I have an allergic fungal sinus infection and the only real cure, apparently is endoscopic surgical removal of all the “gunk”, removal of some pretty large polyps and reduction of my turbinates.

I could have waited several months and had the procedure under our very good public health system, however as I look like being on chemo soon, I prefered to get it done and regain my strength. The sinus infection has left me close to exhaustion at times, and feeling very ill at others. I even threw up in a coffee shop a few weeks ago. Private hospital treatment does not come cheap though, but what can you do? Be grateful for what you have! Anyway, last week I had the procedure. It is supposed to be minimally invasive and only required a day and a night in hospital. Around $10,000! Ouch!! Health comes first. After the procedure my face feels like I have been kicked by a horse! I am on a strict regime of nasal rinses otherwise it can come back. I had sinus surgery in 1998, it was no fun, they used a hammer and chisel to punch holes into the sinuses. Apparently things have improved since then.

It is now just over a week since my surgery. It went well and I am just now beginning to recover my sense of smell. The nasal rinses continue producing gunk. I sneeze in technicolour, however I am breathing and sleeping much more easily. My voice has changed somewhat, however I am slowly getting stronger and more able to do things. I will see the oncologist in a little under 3 weeks.

Why am I telling you all this, my friends? Maybe I am just sharing that even though one has cancer, we may also be afflicted with other things that for a time take precedence. I need to be well to begin chemo. I am not sure I even want chemo. We will see. One of the problems is that if I refuse one kind of treatment I may not be offered an alternative. Recently I read of a new treatment, “Lutetium” that seems to hold promise in trials so far.

I truly value your thoughts, prayers and comments. I value too the fact that I have readers in so many different countries. I don’t hear from you, but I see that you visit. Thank you!