Thursday, 9 October 2014

Another big trip to the city!

Ottawa Hospital Cancer Centre
Yes, to meet with our urologist. He's not just into urology, but he did hubby's robotic surgery, as well, he's been monitoring hubby's disease.

It's been a journey, and our destination is 83 km away. Unfortunately, it is 17 km short of being able to claim tax deductions for parking (~$13/visit), mileage (83 km x 2/visit), meals on our journey, and the like.

Infographic from
Prostate Cancer Canada
 For those who have asked, we appreciate your concern. Some days it's like a ticking time bomb. It helps to talk about it, read about it, understand where we are, and avoid horribilising it, living in the land of reality.

Ask Questions of the professionals - don't use Google!

Some avoid information, or don't ask questions when they don't understand, or find misinformation. This can result in making bad treatment decisions. Radiation had a huge impact on my ill father, giving him an infection and delirium, which went undiagnosed in the ER. Chemo seemed to make my late mom worse, and had no chance of curing her. It really changed her quality of life.

Joe's PSA cancer cells have escaped prior to surgery and migrated somewhere and the trick is to monitor and watch for them. There are keys for getting through this.

The body is an interesting thing. I found, through a Webinar held by Prostate Cancer Canada, that
Discuss options with your doctor 
many men with prostate cancer die from something other than cancer. It is the most treatable, and Canadian doctors are in the forefront of research and techniques. We donate $ billions for research, but we don't really know where the money goes.

Prostate Cancer is a slow-growing type of cancerous cell, and very common in older men. Almost as if the prostate just wears out before its time, and their cells begin to grow wrong. That's all cancer is, really. All the violence and the battle imagery is totally wrong and needless. You must question, why is your body creating cancer cells? For some men and women: diet, exercise, lack of sleep, stress, and toxins can be factors. You can change certain aspects of your life, if you have the self-control, but some cancer simply cannot be explained. Hubby has lost 30 lbs., exercises daily, has gone to a Naturopath to help his stomach issues, and has seen much improvement. He is in top shape to manage his treatments, when they arise.

For those who perceive cancerous cells as some foreign thing, using personification to declare war on 'the cancer', they must understand that it is one's own body creating these cells that grow rapidly, grow wrongly, and overtake 'normal' cells. I found it helpful to draw them, from an image in a book that helped me understand cancer: Pinzone, J.J.: Fireballs in my Eucharist: Fight Cancer Smarter. 

Men aged 60 - 70 have a 64% prevalence rate of cancerous cells in their prostate, men over age 65 = 65%, but it doesn't necessarily kill them. Only 3.5% of USA men die of prostate cancer.

We are in the 'watchful waiting' stage of treatment, having had surgery to remove the cancerous cells.

A further option: Hormone Therapy.

Huggins won Nobel prize for this.
Did you know?

Gleason 1 - 5
At a score of Gleason 7+ Dr. Joshua said
you don't know how it will behave. 
Understand staging, and what your individual cancer diagnosis means at this point in time.

 How can you cope?

Firstly, were are on appointment #XXIX. Seriously. Between a slightly elevated PSA count, not THAT unusual, and trips to the local urologist. Then a biopsy, then another consult. It goes on as they check all this out.
 I have found coping strategies.

Smile, dear. Selfie.
  • Using the iPad to take notes. This is a serious method, since I can type as quickly as our speedy physician talks. The medical student and our doctor, were amazed at my speed! 
  • Do not go to appointments alone. (You can find a driver through local community Cancer Society or Hospice volunteers, as well as someone, like myself, who will take notes for you during an appointment. Go to 211Ontario for more info, or ask your CCAC Case Manager.)
  • Using the iPad to take silly photos of ourselves.
  • People watching. (There is always someone worse off than ourselves.)
  • Laughing with people in the waiting rooms.
  • Keep things in perspective. 
  • Spoil yourself. You deserve it!
  • Laugh a lot, and often. 
  • Use Complementary and Alternative Therapies
    Complementary and Alternative Therapies
  • We all must deal with the end of our lives. There are people out there who can help.  Canadian Virtual Discussion Forums are great.
  • Talk to people about your journey. What I found difficult, were the secrets kept from loved ones. Disease trajectory is an important part of managing the journey. Ask your nurse, CCAC case manager, or local society ( e.g., Prostate Cancer Canada, ALS Society)

Good story: people watching

 There were 4 people together in the waiting room. It looked like a married adult son/daughter and spouse, who were there to support the parents. The father looked 80 or so, and while being tall, he was frail. The daughter was handing the father money for the parking, methinks. She had been holding his ring and wallet while he went in for a treatment. She accidentally dropped a $100 bill. She picked it up. Then she dropped the bill again. Her mother suggested she wasn't doing her job very well and might be fired! Those of us around her giggled. 
    I reached out and said, "As long as you're throwing it around...!"
There is a certain sense of camaraderie.

What else helps?

  • Being out in nature. 
  • Focusing on the present.
  • Ignoring that 'what if' train. Don't let it enter your mind.
  • Make a decision and know you made the best one with the information you have at the time.
  • If you are feeling down, avoid the news, or only listen to one broadcast per day. What a downer it can be!
  • Get help as caregiver, if you need it. I have ended up with high blood pressure, chest pains sent me to the ER in March, and these are back. Don't ignore personal issues, as stress can be a horrible thing. I'm having a stress test today!
  • Give yourself permission to feel the emotions you feel and deal with them. They aren't wrong. They just are.
  • Enjoy EVERY DAY, including rain, snow, sleet and hail!
  • Finding hobbies; like photography, pets, blogging, walking, volunteering, watching sports (MLB) , or collecting data.
Much rain to refill the pond!
Geraldine, AKA Gerry
20mm one day!
Despite draining it last week, the water barrel
and rainfall have filled it back up.
Gerry and Jerry are pleased!

Here are some photos for Isabelle, who likes trucks and backhoes!
Ottawa Hospital Construction

Backhoe for Izzy!

I find it spooky.
It's terribly difficult driving by these ghost bikes, 
and roadside memorialson our way to 
cancer treatments in the city.
This one is for Meg Dussault

We stopped, so I could take a photo of the geese!


Hilary said...

Some sound and wise advice here, Jill. May you both continue to cope well.

Hilary said...

Jenn.. Jenn.. Jenn I knew that. It was your surname that came into play.
Sorry. :)

Jennifer A. Jilks said...

I can't tell you how many people write Jill, Hilary! S'okay!

Nancy J said...

Jennifer, I think the waiting is the worst, Hugh's next sciatic nerve root injection has been are so right, take an iPad ( on my wish list), talk to others, walk round the corridors, take notes, ask questions?? I do, lots, and always take someone with you.Is the travel allowance for that distance one way? if you double it for the return trip, is that allowable? All these costs do add up. Hugh now has a parking disability sticker for the windscreen, $25 for 5 years, and he has been classed as permanent, that was the scariest bit of it all. But at the garden centre, supermarket, shopping areas, a real bonus. Hugs as you continue the journey. Jean.XX

Anonymous said...

Hoping things progress well for your hubby. We just got the all clear yesterday after hubby's day surgery almost 2 weeks ago. Your coping strategies are good, I usually read, do puzzles, knit, go for brief walks, chat with others and use the iPad.

Christine said...

All the best Jenn, you are very strong.

Buttons said...

Oh I want to thank you for the great information and I am sending all my thoughts and prayers to you and your husband as you go through this journey that no one ever wants to go on. You have great advice here and everyone needs that when they are going through any cancer. Thank you Thank you. Take care and good luck.Hug B

William Kendall said...

I can't imagine what that's like for you right now.

Looking at the ghost bike, you're passing a few blocks away from my place on the other side of the river.

DeniseinVA said...

Wishing you both the very best Jenn. You certainly have the right attitude and this post is a great gift to others who might be going through the same thing. Bless you both :)

Red said...

This is a very well researched and prepared post. It's nice that you pulled everything together in one place.

The Furry Gnome said...

Lots of good advice, whatever stresses you're dealing with. Thinking of you and hubby.

Anonymous said...

So sorry to hear this. Wishing you and your husband many healthy years.

Powell River Books said...

Good lists of suggestions. I learned while caring for Mom that the professionals would always take the time to explain and train me in what needed to be done at home. I also learned, that sometimes I knew her better than they did and learned to feel comfortable telling them when I thought what they were doing or suggesting wasn't in her best interest. I sure learned a lot in those two and a half years. - Margy

Yamini MacLean said...

Hari Om
Great work Jenn. As a Homoeopathic physician I had to advise all sorts of similar stuff and what you have here would make an amazing 'hand-out' sheet... and one of the hurdles as a healer was getting folk to NOT keep googling. It is far too easy when in stress to misread and follow completely misleading items.

Keeping you both in prayers, YAM xx

Jennifer A. Jilks said...

Yes, Jean, it's only the distance TO the healthcare facility. The waiting is the worst. Really.
We were fortunate and bought my S-I-L's old iPad. He needs to be up-to-date for work. Our gain!