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!
It’s the end of yet another month. This month of August 2018 is special in a couple of ways. Firstly it marks 10 years of survival from my initial diagnosis when my psa was 12. Secondly my latest psa has finally dipped below 10, coming in at 9.2, so I am pretty pleased with that. Full credit for the improvement in my psa must go to what I call The Awesome Four. Four little (not so little) Zytiga tablets ($50 each if I had to pay for them!) that I take every morning followed by prednisone.
I feel good. I am fit and strong, walking well (with the aid of my trusty walker). The worst side effect is that my skin is becoming very thin and I bruise and bleed easily. However, that is a small price to pay for the resulting psa drop. What does lower psa actually mean though? It means that the cancer tumours will be less active and less likely to spread. Unfortunately it does not mean there will be less cancer, so I still need to be careful to avoid falls or heavy loads on my legs.
The cross stitch is progressing well. I am quite pleased with it and only a few thousand stitches to go and then the detailing and rigging to finish. I need to consider how I am going to frame the finished work and I have a few ideas. S has a love for the Waratah, an Australian native flower of striking beauty (just like her!) and that will be the subject of my next project.
Meanwhile life goes on. Mr Dumpy (colostomy bag) has been up to his usual tricks. I really need to get my diet under control. Multigrain bread and carbonated drinks cause havoc. Today, while out shopping, I suddenly realised that Mr Dumpy had filled almost to bursting point with gas. I was driving and so could not relieve the pressure, an operation that requires me to get out of the car. (It stinks!) I told S, “One more fart and it’s all over!” However, it held out until we got home.
Sadly, my Mum passed away a few weeks ago. She was 95 and had lived a full and enjoyable life. She said she was ready to go and after a short illness she left this world in her sleep. Unfortunately I was not able to travel to Australia to see her or attend her funeral. A generous relative held her phone up for the entire service, allowing us to watch live. The wonders of modern technology!!
So this month has been a mixture of good and not so good. Life goes on and so do we.
It is two months since I started over after my disastrous oversight. 16,000 stitches down and only 12,000 to go plus a bit of detail work. I am still enjoying the task and life is good!
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!!
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.
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.
A perfect tapestry, no mistakes. Definitely starting at the right end!
Checked 3 times!!
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.
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!!