Dr Tildesley was on leave last week so we saw a Dr Duncan instead. This month my blood markers were all within the normal range indicating no problems with liver and kidney function or bone marrow. However there is some concern about my PSA, now up to 107 from 96 4 weeks ago. The concern is that the Radium is no longer effective, however I believe it is slowing down the rate of psa increase. Some specialists think that increasing psa is an indicator to cease radium treatment. After the 3rd infusion psa increased by around 50%. After the 4th infusion the increase was around 12%. So that must mean something. I was given the option to discontinue radium therapy if I wished. I asked him about Lutetium trials but he said i would not qualify. He suggested that we speak to Dr Yun about possible clinical trials and any other available treatments.
After we came home I phoned Dr Yun. He advised that as the radium was “holding back” the cancer to some extent it would be wise to continue the full course. It appears that the only other options available to me after that would be some form of chemotherapy. Before that can happen I need to be rid of all traces of radium.
I have mixed feelings about chemotherapy. Would I be sacrificing quality of life for a few extra months? How well would I tolerate side effects? I have heard good and bad stories about chemotherapy. It sounds like a bit of a lucky dip, but then such is life. Maybe I will give it a go. I can always pull out if I want to. At least I will have given it a try.
I have to say, I really don’t know what psa numbers really mean. It seems they bear no relationship to how I feel or what I can or can’t do. The fact that the rate of increase in psa is reducing makes me think that the Radium treatment is just now having a positive effect. I have read where patients have given up after 4 treatments. Maybe they gave up too soon. Anyway this is something we will discuss with the nuclear medical oncologist.
On the subject of how I feel, I have good days and bad days. That is too simplistic. “Good” days are days when I don’t feel nauseous or light headed, I can walk to the car and enjoy an outing of 3 to 4 hours, and I feel like eating. They are fairly rare and very unpredictable. “Fair” days are probably most common. On fair days I wake up feeling ok but not fancying breakfast so I have a protein drink. If I walk to the car (about 100 metres) I usually feel dizzy by the time I get there. I feel slightly nauseous with little appetite. I can enjoy doing cross stitch as I can do it while resting in bed.
“Crap” days are fairly common too. On crap days I can do a bit of cross stitch or watch tv. I feel nauseous and dizzy when I get up. I often need an afternoon nap even though i might have slept 12 hours, and my appetite is very poor. “Really crap” days are fortunately rare. On these days I feel impending doom, I can only pick at food and I begin to wish it could all be over. I lose interest in everything. It is really hard to describe and I don’t wish to sound morbid but it is what it is. Fortunately these days are rare, but when they coincide with medical appointments it is all I can do to get there and back. Without S to help me I wouldn’t be able to go. She drives, she helps me with my walker. She holds my hand and encourages me to keep going. She makes sure I am nourished.
It is impossible to predict what tomorrow will be like. All we can do is enjoy the good days, make the most of the fair days and endure the crap days. Don’t worry, life is still worth living and there is always hope that tomorrow will be a good day!
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!
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………………………
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.
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!!
S and I enjoyed this book very much. We read parts of it to each other. The author is one of the world’s great procrastinators and the basic plot is a review of his life as he decides if he should propose marriage after 4 years in a relationship.
The author, Justin Halpern, describes various stages in his development into adulthood. Along the way he receives advice from his big brother, his friends and especially his father, who is an extremely well educated man, a doctor of medicine and a university professor.
The book is written in a present tense style and it is easy to believe that you are there with him. The images he creates in the mind are vivid and realistic..
The language…..it is hard to believe that Justin’s father would speak the way he does. He is as subtle as a bulldozer, sarcastic and foul mouthed. He is a kind man and means well. Poor Justin spends his life trying to come to terms with his sexuality without much success until finally he meets Amanda, the love of his life.
Justin worries about everything, he is uptight, naive and innocent about the ways of the world and how he fits in. There are many humorous moments and few flat spots. There are heart-rending moments where I wanted to reach in and give him some advice myself.
While the book is written about the son, we found ourselves becoming just as intrigued by the father. Perhaps this is because we are also parents and grandparents. There is a lot written between the lines in this little book. We both had great fun reading it and laughed out loud many times. It achieves it’s goal, to entertain the reader.
We can’t wait to read his other book, Sh’t My Father Says.
As can be seen from my latest psa chart, my psa has begun to rise, with a vengeance! 48.6 up from 12.9 in 3 months. I still hope for a black salve miracle, but it is a faint hope. My psa is doubling every 5 weeks, so by the end of April I fear it will be over 100! Re Black Salve- My back is still producing small eruptions near my spine. Something is happening, I don’t know what. I have had no ill effects, so maybe another course won’t hurt!!
S and I have booked a 3 day holiday on Vancouver Island next week for my 70th. We plan to enjoy it. Barring a miracle lottery win I will have to make the hard decision…Do I return to Australia for treatment? Do I stay and await what comes?
I feel fine within myself, even my sinuses are a bit better. I don’t want to leave S and return to Australia, not knowing how long before I can come back to her. I don’t know how such a move will affect my chances at gaining permanent residency in Canada. Not well, I suspect.
A part of me wants to stay and enjoy what I have for as long as I have, but S wants me to get the best treatment I can. I don’t know what treatment that would be. Radiation or Chemo? How long will it take? How much benefit would there be? What is my prognosis if I do nothing? Can I put S through the pain of watching me deteriorate? Life seems so unfair. My original life estimate was 15 years- that was back in 2008. It hasn’t even been 10 years. It was only 12 months ago that I had radiation to a pelvis metastasis. So many questions. I have contacted my oncologist in Australia for advice and am waiting for his reply.
Medical costs in this country are out of reach as I have no insurance or eligibility for government assistance. Maybe a return to Australia is inevitable. Decisions…
In a recent post I asked a friend to list 7 things she would do if she had less than a year to live. She challenged me to do the same, so here goes:
- I would make sure my loved ones know that they are loved by me.
- I would visit long lost relatives. I would get as many hugs from them as I can.
- I would try to leave no financial burdens for anyone.
- I would enjoy each day as it comes.
- I would remember every day that life is worth living.
- I would maintain hope for a miracle.
- I would trust my doctors and also try every alternative within reason.
Of course this is subject to change at any time!!
God bless my fellow sufferers and all of you who support me. I appreciate you, every one!!
2006. I was driving to work, listening to the radio. There was an ad urging men over 50 to get their prostates checked, specifically, have a psa test. “It is just a little prick” is how they described the procedure, a simple blood test. How true that clever little play on words turned out to be!
I heard the ad just about every day. I was 59. My reaction to it was that this is just another way to get money from us by inducing fear. No way I was falling for that!
Fast forward to 2008, my GP referred me for a routine blood test, “just checking” she said. The next time I saw her she told me my psa was 10. It should be 4 or less, so she referred me to a urologist. The waiting room was full of quiet men, some alone, some with partners. The plan was to wait and see. 3 months later my psa was 11, and 3 months after that it was 12.
Be prepared, as they say in the Boy Scouts. When you see a urologist or any male doctor you will get a DRE.(Digital Rectal Examination) Goes something like this… “Lie on the table on your side, facing the wall. Lift your knee up to your face.” You then hear the rubber glove going on, ‘Snap!!’. Next thing, the KY Jelly and two fingers slide into your fundamental orifice. A bit of a feel around and then a sucking noise as he withdraws his fingers. A quick glimpse of a dirty rubber glove going in the bin. He smiles and says nothing.
“You will have to have a needle biopsy”. This sadist of a urologist shoved a ‘gun’up my rectum and shot me 17 times. Each time was excruciatingly painful. I had told my brother about my psa. his was rising also. He had the biopsy under general anaesthetic. Afterwards, I could hardly walk.
The needle removes tiny pieces of prostate tissue for analysis. Well, not so tiny, they were 15 to 25 mm in length. I read somewhere that the the holes were too small for cancer cells to escape. BULLSHIT!! Next time I had an orgasm I came blood. And the time after that for two weeks.If blood can get into the prostate, surely cancer cells can get out?
The diagnosis was “malignant; bilateral prostatic adenocarcinoma”. Gleason Score 3+4=7.
The verdict……”you have about 15 years” delivered without emotion. I guess bad news is not easy to deliver, however I still wonder if this man has a heart!