Wednesday, September 5, 2012

The Waiting Game, Part II

There's something very hard about all the waiting that goes on once you find out about cancer.  Two different doctors, each with different processes that are taking place.  They communicate with each other, but only if the patient mentions something or asks a question that might link the two. A link to another organization, called CancerCare Manitoba, that will then also get involved.  We still haven't talked to an oncologist.

Last week Tom met with his urologist for a second time following surgery.  The purpose was to discuss PSA levels post-surgery and ensure healing is taking place. The PSA level from August is high enough to warrant more aggressive therapy, so Tom is now required to take a drug which will remove the fuel of prostate cancer, testosterone, from his body.   Luteinizing hormone-releasing hormone is released from the hypothalamus of the brain when the hypothalamus detects dropping levels of testosterone. LHRH is received by the receptors of the pituitary gland which releases luteinizing hormone or LH which travels to the testicles and begins the production of testosterone. In prostate cancer hormone therapy, LHRH agonists and antagonists are used to prevent the pituitary gland from releasing LH.  The drug is seen as the best way to control the spread of prostate cancer.   CancerCare provides the drugs free of charge for home-based cancer therapies.  Once CancerCare is notified, the patient should be able to take the prescription to the pharmacy and receive the required pharmaceutical product.  

Somehow, somewhere, in the meetings with doctors, receptionists, and pharmacists, no one thought to let Tom know that additional paperwork is required in order to process the request with CancerCare.  Finally, four days after Tom dropped off the prescription, repeated phone calls and discussions,  someone in the pharmacy thought it might be useful to mention the fact that additional paperwork would be required.  Bureaucracy is its own devious game; I'm used to it, given that work at a University, but I've always made it my goal to present information in the most transparent way possible.  So I dug deeper, and found a contact number buried in one of the many links on CancerCare's website. Don't you think that should be given to the patient with his or her prescription?  Where are the people who help to explain the process?  That should be part of post-surgical care, which starts as soon as the patient leaves the hospital.  I guess waiting wouldn't be as hard if you got all the information you needed to start the wait...

The MRI scan took place on Friday afternoon, and those results will be discussed with the general practitioner next week.  More waiting.  The plan is that there will be an oncologist (Cancer specialist) involved as soon as these results are processed.  In the mean time, Tom is dealing with the relentless pain in his hip/pelvic area, which creates its own spiral.  And this is the week the kids went back to school.  Tom is home right now, not teaching in September for the first time in 27 years, and is feeling the loss of his professional role as well.  So we wait, a bit longer, to see what will transpire.  Keep the thoughts and prayers coming -- he's very aware that his friends and loved ones continue to think about him.


  1. I was thinking about You and Tom on my drive in today.I wish things were going smoother, its just one more thing on top of the rest isn't it. My thoughts and prayer go out to all of you. ...can he still do the pottery? I think of him with a smile ever time I make a cup of tea, I have one of his beautiful jars.

  2. Right now he's struggling with the pain in his hip, so he hasn't been making pottery. But he has been doing art -- in many different ways. Is learning more about sketching, with a good friend of his, who encourages him very regularly!