Thursday 2 August latest psa reading is 14.7. 4 weeks ago it was 19.7 and up until now it has consistently halved each month, so this reading, around 75% is a little disappointing. The good news though is that it is less than last time so I will take that gratefully.
Meanwhile I am continuing with the Zytiga and Prednisone with no apparent side effects apart from growing pert little breasts. My testosterone is virtually undetectable at less than 0.1. The good thing about that is that it starves the tumours and slows down any growth. The bad is that it takes away all sexual urges, then again maybe that is not so bad as nothing works down there anyway! My rib still aches at times and I take Tylenol in addition to the Fentanyl patches every 3 days. I notice the rib pain more on the third day.
The ostomy is still troublesome at times. It is always there except for a few hours every 4-6 days when I remove it to replace it. I like to just relax and give the skin some air for a while. I know it is not polite conversation to talk about one’s bowel habits, but when it is right in front of you it is hard to ignore. Most times when the bag is removed I can collect any “output” in a tissue and then put it in a plastic bag. Last time, this was working quite well until suddenly there was a lot of gas, causing S to leave the room and then an increase in “output” causing me to hastily fit a new skin barrier and pouch. Luckily I got it on in time and didn’t make a mess, however the new bag quickly filled up. Should have waited, but that is ostomy care. Full of surprises!
However, life is good and I am glad to be alive. I have been following the Golden Globe Race and have found a program that will allow me to virtually enter the race. Haven’t tried it yet so that is a subject for another blog at a later date.
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!!