How long have I got, Doc?

The question we all wonder/worry about and yet it seems to me that the experts never get it right, so, what is the point of asking?

I feel that when the time comes I will know. It is a question so far I have refused to ask, even though it is often on my mind. When i was first diagnosed in 2008, the oncologist bluntly stated 15 years. I didn’t ask. It is now 2019. 11 years down, 4 to go if we can believe that doctor. Frankly, another 4 years would suit me fine,provided I am not in pain, remain reasonably active, retain most of my mental faculties, retain my sense of humour and the ability to be reasonably useful and not too great a burden on my loved ones. Not too much to ask? I am now 72. If I make it to 76 I certainly can’t complain. Many a good person has not made it this far. Besides, I believe in a life in the hereafter, so that is something to look forward to.

I still have things to achieve, a bucket list of sorts. It is not cast in bronze. I want to do some more sailing and I have discovered an organisation that provides sailing for people with disabilities at a very reasonable cost. The days of owning my own boat are gone. I have more cross stitching in the pipeline as long as my eyes and fingers hold out. My latest psa was 247, up from 197 4 weeks ago. Not as big an increase as I expected. Maybe the Zytiga is helping. I have been taking it since my final radium infusion a few weeks ago.

Travel in the USA or anywhere other than Australia or Canada is out as no one will insure me. I don’t know what the record for psa is, maybe I can beat it!! Now that’s something to look forward to!

Latest results & good and bad days

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!