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More Decisions

Yesterday S and I visited my radiation oncologist, Dr W. We were a little early but soon I was called by a young woman who introduced herself as Dr W’s registrar. (Basically a doctor in training). It was soon apparent that she knew nothing about my condition. She read the clinical notes and said “you have to have chemotherapy, there are no other options for you.” She had almost as much empathy as a lizard. I say almost, because I had a pet lizard as a child and I am fairly certain that it was more caring than this doctor.

I asked her how soon could I see the medical oncologist? At least 3 months was the reply. I asked if I could see someone privately? She got her secretary to check. “You can see Dr L next week”. It then transpired that Dr L would not see me as I had no private health insurance. I told her I was prepared to pay for the consult. The answer was still no. She suggested I get private cover. Pre-existing condition? I think not. That was it. We were both very disheartened.

As we left the registrar’s office, Dr W was in the corridor. He saw the looks on our faces and told us to wait a bit and he would call us in. What a difference! Dr W examined the recent scan results and explained the extent of the cancer’s progression. He discussed why chemotherapy is the only treatment available to me at this time. The Australian government will not pay for any of the other treatment protocols until chemotherapy has been tried and proven ineffective. The only chemotherapy available is Docetaxel, or Taxotere. The only follow up treatment available is Zytiga, or Abiraterone Acetate.

I asked him about other treatments, Xtandi-(not available in Australia) and Provenge, known as Keytruda in Australia and is only available as part of a clinical trial after all else has failed.

My psa on 14 June was 160. I have been taking an Australian plant based substance called Gumbi Gumbi, a well known Aboriginal herbal medicine, 4 times daily. My psa 6 days later was 140. Is this a slowing of the rate of growth of the cancer? Or is it that the Gumbi destroys psa in the bloodstream? No way to tell apart from nuclear scans. However, I will continue taking it along with Curcumin and black pepper.

As if the cancer is not enough to worry about, I have a complete blockage of my sinuses with a severe fungal sinus infection, that can only be treated by surgical intervention. I was being treated with antibiotics and I am now told that they only made the condition worse. At least now I have an accurate diagnosis and a referral to an ENT specialist and treatment is in the pipeline.

Current status, I have been referred to a medical oncologist for chemotherapy. I am awaiting a date for my first appointment, and there are many pros and cons to weigh up. I have requested a referral to an independent medical oncologist for a second opinion. Now it is just a waiting game, so S and I plan to have a few days away at a seaside resort, while we await developments. After that, I will learn all I can about chemotherapy benefits and risks. All we want to do is get it over and get back to Canada to enjoy what remains of the summer!!

Ain’t Love Grand!

9 days ago, I rose early and drove to Sydney Airport. My beloved S arrived at 6:00am after a long flight from Vancouver via Dallas Tx. I was well prepared for her arrival, wearing my best outfit with shirt, tie and jacket. I was holding a beautiful red rose in my hand, and wore my black akubra hat so she could find me easily. I sure stood out from the crowd!! As if that was not enough, my huge Cheshire Cat like grin shone like a beacon….

After watching hundreds of strangers in all kinds of attire and with all kinds of expressions on their faces, at last I spotted her beautiful smile beaming at me from the crowd! What a reunion after a long 6 weeks apart. Together again!! Did I hear someone say “please, get a room”? Well, maybe not. It was just so good to see her!

The last week has been so good, but so busy. It is only now after 9 days that we are beginning to settle into a routine of sorts. We are staying in my sister’s house while she and her husband are overseas. (An Australian term, because everywhere that is not Australia is “overseas”).

On the other hand, today I had more blood tests in preparation for my Oncology visit later this week. My psa last week was 160, a record high for me but still up only 50 from mid April. I don’t usually have psa tests so close together. I had some extra tests as well, so we threw in another psa. On the plus side, I have been feeling reasonably well apart from a very persistent blocked nose. CT scan of the sinuses is planned for tomorrow. I don’t care what they do as long as they fix it. The ability to breathe through our noses is highly under-appreciated by most of us. I am also using a walking stick to aid in stability and reduce the load on my hip. I will be having physiotherapy following painful muscle spasms in my leg. My GP has started me on Norspan patches to help control pain. They are very effective.

I am so grateful that S is with me. I know it is not an easy time for her, and she suffers as much as I do. We are hoping the oncologist will have a strategy that will work and we will be able to return to Canada soon. Meanwhile I am taking Gumby Gumby, a traditional Australian Aboriginal medication, daily. I believe it has resulted in a slowing of the rate of psa increase.

That’s about all for now. It is still a waiting game, enjoying life and planning some good times ahead still a priority! After all, life is precious and Love is Grand!!

 

 

Life goes On

Today my son and I visited the South Australian Aviation Museum in Port Adelaide. It is a wonderful display with good access to many of the exhibits. We stayed for around 2 hours and still were unable to see everything…..

My left hip has been troubling me lately and no wonder why! I bought a walking stick a few days ago after struggling through the airports at Sydney and Adelaide, and then one of the local shopping centres. I was really struggling with steps. Now with my stick, I can ease the pressure on my hip to a great degree. I feel more stable, my pain levels are much less, I recover more quickly and also the stick lets other people know that I have trouble walking.

In only 10 days or so S will be with me! The time we have been apart has been almost unbearable for both of us. We vow never to do that again! We have decided to add to our little family by getting a puppy, possibly a French Bulldog, but have not yet decided for sure. We discounted the idea earlier but now it just makes good sense. We have people who can take care of him/her when we are away. It is amazing the difference an extra little life in the house can make!

A big thankyou to  my readers and supporters. I consider myself fortunate that you read my blog and I truly appreciate your “likes” and your comments.

The Enemy Exposed

Every picture tells a story, and what a story this one tells. Compare it to the one I published some time back! The metastasis has multiplied and grown despite my optimism. Many people have expressed their concern for me and I do appreciate your words of support. Some say they are sad. I don’t want you to be sad for me. I only publish this rather personal picture of me to show you how technology can find exactly where the enemy is. If we can see it maybe we can do something about it. I am assured that while there is no cure as yet, there are treatments that can slow it down and improve my quality of life……

Speaking of quality of life, I do experience pain in my lower back and hip, but it is manageable. I am concerned about falling and /or fracturing my hip. However I have to say my quality of life has never been better! I am happier than I have ever been to be honest! Now that S is back in my life! She will join me in Australia in 2 weeks and we will never be separated again! We have both realised that we are each other’s first and last true love! That is a wonderful thing to discover at the age of 70! I consider myself to be so lucky, believe it or not!

Having cancer has liberated me to do things I might otherwise have put off until it is too late, so please don’t feel sad for me, be happy that I have found my soul mate and that we are living!!

My oncologist will discuss treatment options later this month. Meanwhile S and I will do some sightseeing and visiting friends and family. Doing things we may never have gotten around to doing!

Life is for living, and that is what we are doing!

Cancer is not my enemy…..I am cancer’s enemy!!

Misnamed Blog??

Today I am preparing for my nuclear pet scan, psma scan also known as a Gallium scan. It involves being injected with a short acting radioactive substance that will show up any tumours very clearly. Last Friday I visited my GP for the earlier bone scan and CT scan results. The news was not good….

He told me I have significant lesions consistent with metastatic prostate cancer, now showing in my left pelvis, left humerus neck, L4 vertebra and my pubic bone. The psma scan will provide a clearer picture.

I have occasional mild pain in my left hip and lower back, but otherwise I feel great. S will be joining me in Australia in a few weeks, I really miss her even though I am seeing many long lost relatives. S and I will have a great time travelling and visiting friends and family, making the most of life!

My psa was 110 at last count. I will have another test in 3 weeks, hoping for a further decrease from an estimated max of 140. Will it ever reach zero? It doesn’t really matter, it is just a concept, and I will retain the name.

Well, my friends and supporters, the time has come to head off to the hospital. We have such a wonderful health care system in Australia, and I am so grateful for that.

I am hoping they will give me the disk as they did last time, I can have a good look and compare to my last results. My oncologist will see us on the 27th to discuss treatment options. There is still hope!! I cling to that!!

More to report later….

What Now.

On Friday I visited my oncologist, Dr W.  He was very supportive and pleased to see me back in Australia.  I am having a bone scan and a CT scan next week. Dr W  has commenced the process for me to have a psma scan. I feel positive about this scan as it will detect tiny tumours if any, and I can compare it with the one I had in 2016. If it is clear, great! If not, at least we will know where it is and have some idea of how best to treat it.

Dr W  will see me again at the end of June. Next psa around 20 June. It appears he sees no great urgency at this stage. There are 3 treatment  options, radiation, hormone therapy or chemotherapy.  There have been improvements in hormone therapy and that sounds like a good option to me. Dr W said he can arrange for me to take sufficient medication with me to Canada. Chemo would require me to stay in Australia and to me is not a good option anyway.

Meanwhile I am catching up with friends and family.  I feel well and life is good. I miss S and she misses me. All of this is so new to her and it is hard to take sometimes. We try to stay positive, but of course there are moments when tears flow.

I thank everyone who reads this for their support, spoken or unspoken.

Going Down!

Finally some good news, my psa is going down!! Around a month ago my psa was 107 and doubling in under 5 weeks. By a rough estimate, when S gave me my Zoladex injection on April 21, it would have been around 140. A blood test May 5 gave a psa of 110! A drop of 30 in 2 weeks! So it appears the hormone injection is working despite a testosterone level of zero. I never would have expected to call a psa of 110 good news. Yet it is! I thank Dr JM for his advice, encouraging me to use the Zoladex…..

Meanwhile I am adapting to life down under in sub-tropical New South Wales. Having survived one of the coldest winters in recent history in Canada, I am now feeling the cold in Australia. I believe the hormone treatment affects the body’s ability to regulate its temperature. It is a small price to pay.

S is still in Canada and we are missing each other terribly, although we communicate daily by email, and the occasional phone call. Tomorrow I will see my oncologist and will discuss the next step in the journey. I feel well apart from some occasional arthritic complaints. I really don’t have any evidence or symptoms of cancer apart from that number! What if I have experienced a spontaneous remission? How will I explain that? Black Salve? Curcumin? Faith? or modern medicine?

Unrealistic!! Don’t get your hopes up. What else is there? We stop hoping for a cure or at least a long term slowing of disease progression we are dead already!! And so I fight on, believing that S and I will have a long and happy future!

Cancer is not my enemy – I am cancer’s Enemy!!

Footnote: The ship in the photo is the French barque “Adolphe” that was wrecked entering Newcastle Harbour in 1904. Her bones rest against Stockton breakwater to this day. The photo is part of the Newcastle City Library collection. Other ships had been wrecked in the same place, known as The Oyster Bank.

Flight to Australia

After receiving my latest psa, we made the decision that I should return to Oz as soon as possible. We went to Vancouver Airport to arrange a flight. The young lady at the Delta check in, said she could get me on a flight May 1. There would be a $300.00 penalty payment. We asked if it could be waived. She said she had already waived a good part of it. Then my hero, S, stepped in and said, “this is a medical emergency, my partner has cancer and needs urgent treatment.” The young lady said she would see what she could do. When she came back she said her supervisor had waived the whole fee, and also they would arrange for me to have a window seat (which I wanted) and also a vacant seat beside me on both flights! Wow! What great service Delta. And all on just a few days notice….

On the flight day, I went through US customs at Vancouver airport. There were no problems, it was a very smooth process. I have a 90 day visa for the US. At LAX there would be no Customs to worry about and no bags to transfer, easy!

We took off over the water, and I got some glimpses of Vancouver Island. After that there was lots of cloud until about halfway to LA. We passed over Lake Tahoe and I got some video. I got some great shots. I could see a huge ski resort at Mount Rose just North of Lake Tahoe. The mountains were amazing, then it was miles and miles of farms around Fresno. The sun was out coming up to LA. We swung out over the sea and then circled back over LA before landing. It was a good flight with my empty seat beside me. The guy in the other seat slept all the way.

As I left the plane, I saw a man with a wheelchair, holding a sign with my name on it. So I got a wheelchair ride to the departure lounge. It was not far like last time, but I was grateful not to have to walk. My hip hasn’t been too bad lately but I don’t want to aggravate it. No customs, no baggage to worry about. I had a nice dinner and the 5 hours went quickly thanks to scintillating conversation with my Darling S on Facebook Messenger.

When I boarded the big 777 for the long crossing of the Pacific, I discovered I had 3 seats all to myself and mine was the only bag in my overhead locker. After take off a woman asked if she could sit in my aisle seat. They had put her in the middle with two fatties. She was going to Perth, so of course I was fine with that. The rest of the plane was full. How good was that. The lady who arranged my flight deserves a medal! All credit to S too, she was most persuasive and I am sure she arranged the wheelchair.

I watched 3 movies en route. Lion was good, but not exactly bedtime stuff. At the end they showed the real people and you saw his adopting parents meeting his mother. Bit of a tear jerker that one. That started me missing S again, so I had a bit of a teary moment!

After a while I watched Manchester by the Sea. I didn’t really like it. It was about dysfunctional people and I kept waiting for the good bit, but I must have missed it!

Later I watched The Meddler. Susan Sarandon. I loved it. Had me laughing out loud at times. A great movie, I can recommend it.

Later in the flight we had some turbulence and I opened my blind and had a look. There was the Southern Cross, just above the wing. I looked down and there were all the lights of Fiji. What a beautiful sight. You could see the different islands like jewels of light in the black.

The sun rose an hour before Sydney. There was very thick cloud. It was a bit better when we arrived, we did a big circle over Sydney before landing and I was able to shoot some good video despite the partial overcast. The captain gave a really good talk about Sydney as we circled. It was a good flight. The hardest thing was trying to get comfortable. My new neck pillow was a big help. When I left the plane there was no wheelchair for me. Apparently the guy was late getting there I learned later. There was a huge crowd of passengers all trying to figure out the passport check machines. I was getting pretty tired by this so went straight to Customs. I had declared that I had “restricted drugs or medications”. I expected to be searched, but the Officer just took one look at me and said “medications?”. I said yes, he said go to aisle 6. I could see people lined up in rows to go through the x ray machines, then I discovered aisle 6 went straight to the exit. My cousin was waiting to take me to her place, where I had breakfast and crashed for the day. I had been awake for 60 hours!

Bursitis

Today I am feeling so much better. I had a bout of Bursitis in my hip yesterday and could hardly walk. Naturally my mind tells me it is a tumour growing and causing pain. Today the pain is gone. It was not the cancer. The somewhat revealing photo shows the tumour that was treated last year. I still feel pain in that area, mainly at night when the Tigers come with their voices soft as thunder….

S and I had a good day today, we had lunch out and did some shopping. I received a lovely thank you card from the place where I volunteer, along with a pewter pin commemorating Canada’s 150 Anniversary.

Only a short time left for me in Canada. S will join me in a few weeks. I have arranged to see my Oncologist in Newcastle NSW so things are on track. We are sad at being parted for a short time. However we are looking forward to some adventures in Australia together. We both feel positive that this is the right way to go. Thanks to everyone for your support. God bless us all!

Travelling

Things change quickly. My mind is in turmoil, yet I feel at peace. A good friend convinced me to act sooner rather than later. Today I visited Vancouver Airport and told the Delta people about my problem. The young lady booked me on a flight leaving on Monday May 1 and arriving in Sydney Wednesday May 3. She persuaded her boss to waive the $300+ re booking fee and even arranged for me to have a window seat and hopefully a vacant seat beside me. Stefanie (S) hopes to join me in a few weeks. One of my cousins has offered to pick me up from Sydney Airport and give me a bed for the night. After that I will stay with my sister for a while. I am looking forward to seeing my family and friends. The universe is on my side. I feel so blessed!!