Three weeks ago today DH had the operation to remove his bladder and prostate. I intended to write every day to keep track of his progress but this has been the most intense, busy three weeks of my life. I don't have the time or inclination to enumerate all the problems and difficulties we've had along the way but there have been plenty. The opening in his abdomen where he now eliminates urine is called a stoma. We had three visiting nurses come to help us with his stoma: The first did nothing, the second did a few things but they were all wrong, the third was an urostomy nurse and was very helpful and is still working with us.
We need supplies for the stoma: a "wafer" or barrier that adheres to his body with an opening for the stoma and a pouch or bag that snaps onto the wafer. We were given two when we left the hospital with the assurance that the one put on in the hospital should last for five days or so and more were on the way from the insurance company along with a sampler kit and instructional DVD. Wrong, wrong, wrong. It lasted about two days before it started leaking and our supplier said they didn't have any in stock, they were on back-order and the sampler kit was nowhere in sight. Wonderful. I changed DH's appliance and it held for a few days and then it too began leaking. We weren't given a night drain on DH's discharge from the hospital and we were waking up every two hours to change the pouch - then we overslept and it started leaking. More calls to the supplier, calls to the doctor's office, a visit to the hospital where they gave us one. When I told the house nurse about the night-drainage problem, she walked me outside and gave me a foley bag for night drainage - "shhhh, don't tell anyone I gave it to you but your husband should be able to get a good night's sleep." I visited a hospital supply for additional wafers and pouches only to be told they didn't have any and a doctor's prescription was needed anyway. Then the ostomy nurse came to the house - she brought a few extra wafers and pouches and gave us the first correct instruction on how to handle his stoma and changing the wafer and pouch. You need to remove adhesive from the skin, prepare it for the wafer, keep it dry (while the kidney constantly drains through the stoma!) and then apply the wafer and the pouch. She said all the equipment we were given was wrong and ordered the correct supplies for us. We haven't received them yet but should have them in a day or so. I can now handle this and DH trusts me to. We are on the downhill side of things - it will only get easier from this point. He's handling the psychological part very well - not too difficult as being alive trumps wearing a pouch any day.
Now re the pathology report: The cancer made a microscopic punch through the wall of the bladder. There is a 50/50 chance that cancer will reoccur somewhere and no way of telling who will be in that 50%. Options include chemotherapy, radiation or wait and watch. There are risks with all options; we don't need to make a decision now but are leaning toward waiting and observing. The surgeon's dad had the same operation 12 years ago with 8 places where the cancer had gone through the bladder muscle into surrounding tissue. His dad said he was done, opted for no follow-up treatments and has only recently developed what looks like a new cancer.
In the meantime we are working on building up DH's energy level - nutritious diet and walking for exercise. He still tires easily but that's not unusual after such a big operation. His incision has healed and unbelievably he never really had much pain from the surgery.
Oh, and today we received the sampler kit of supplies for his urostomy. Better late than never.
I've always wondered if, "The squeaky wheel gets the grease" or if it's, "The squeaky wheel gets replaced." Now I know - it gets the grease. You have to be pro-active and not depend on others to look after your needs. Make calls, get names and numbers, followup. Well meaning but our urgency was not their urgency.
2 comments:
You would have made a good nurse...and yes the squeak gets greased.....yes, chemo and radiation have their side effects and complications...but you can always stop treatment...once the cancer has traveled, then the cancer has made the decision.
You're absolutely right. Now we need to learn more about chemo and radiation. I keep remembering his surgeon saying it was a very nasty, aggressive cancer - we want to be in that 50% with no future cancers but if wishes were horses beggers would ride, right? Looks like we have work to do.
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