talkingaboutcancer.com

Every so often (too often lately), I am overwhelmed by the exhaustion, pain and general discomfort brought on by my treatments.  I hate to complain and, whenever I tell someone how I’m doing, I feel like I’m being whiny.  But sometimes I just …. well …. feel sorry for myself.  For the most part, I only verbalize this from the safety of my home where my dear wife is the only witness to my vulnerability.  She tells me that it’s okay to express myself because she really wants to know how I’m feeling and insists that home should be my “safe place” where I can let down my guard.  Whenever I say, “I’m feeling sorry for myself,” she says, “You’re allowed to.”  And while I hate to admit it, I’ve come to realize that she is right.  As uncomfortable as it is to feel that way and be told it’s okay, I think it is very good advice for anyone having to deal with all the crap that cancer (or any other serious disease) throws your way.

The other thing that I struggle with is the feeling of uselessness or inadequacy that comes with not being able to do things.  For someone like me who has always prided himself on being the “man of the house”, I hate it when I can’t do the more physically demanding activities that are necessary when you have your own home.  I really do feel useless at times and feel that I am letting my wife down because she has to pick up the slack.  But what does she say?  “You are not useless.  It’s okay that you can’t do everything you used to.  You’ve got cancer, damn it!”

She’s right.  She’s always right.  It’s good advice.

Posted by Doug

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I’ve written before about how special and thoughtful some people can be in response to a cancer diagnosis or a continuing illness.  Not everyone can express themselves in the same way and many people (friends and family included) just don’t know what to say or do.  On several occasions, friends have dropped by to cook a dinner for us or shovel snow.  These are quiet, thoughtful acts that speak louder than words.

This past weekend, we had the pleasure of a visit from my nephew, his wife and little boy.  We love to have them visit and we wish we could see them more.  They really define what family is all about.  When they arrived, they gave me a beautiful card with the most heart-felt wishes for my health, which meant a lot to me.  They were a little nervous about how to start a chat about my current status, but we opened up and shared everything with them.  They genuinely wanted to know and it felt good to talk about it with them (I always worry about complaining too much).  With the card, they also gave my dear wife and I a coupon that they had ordered on the Internet for a dinner at home.  Apparently, the chef discusses your tastes and likes with you, does the shopping, prepares and serves the meal, and then cleans up after!  We were so surprised and pleased at the gift but even more so at the thoughtfulness that went into it.  In my current condition, it is very difficult to go out for an evening (I can do it, but it’s very painful and tiring) and they understood this.  It’s difficult for them to do a meal for us because they are far away and have a baby to look after, so they found another way of doing it.  The amazing thing is that these are young people in their 20′s who have shown us a degree of empathy and understanding that is, in fact, rare in much older people.

My brother did well in raising my nephew and he in turn did well in choosing his soul mate.  We love them both (and little Levi) and look forward to them becoming an even greater part of our lives.

There is so much love in this world, and always hope.

Posted by Doug

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Hi.  It’s Dianne again.  As a caregiver I find I take great care of Doug but forget about myself.  Often I am just too tired to think of my needs.  I go to the doctors so often with Doug that the thought of having to go to another doctor, even if it is for myself, is almost too overwhelming.  I’m tired from lack of sleep and just don’t have the energy required to worry about me.  I cook the healthiest meals for Doug that I can (lots of antioxidants, no red meat, etc.) but don’t eat it with him.  He loves the meals I cook but I still have bad eating habits and I have decided it is now time to take care of me so I can be better for him (and me).  I have some bad days where it is hard to get going during the day and I have to force myself…my mind is constantly aware of our situation and it scares me to death.  I talk to my friends and release the bad stuff but the knowledge of our situation is always there in the back of my mind.  I try to cope with bad and scary thoughts by imagining a recycling bin and a garbage bin in my mind and I sort my thoughts into each of those two containers…one where I will deal later with the thought when I am strong enough to, the other to just throw out that thought and not look back at it.  Today started as a no-energy-I-feel-lost kinda day and I have turned it around to a “get your butt in gear Dianne and make some needed appointments for yourself” day.  I have done just that and already feel better.  How do others in my situation take care of themselves, or do they also fall down on the job?  I’ll write more later.

Posted by Dianne

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Hi there. it’s Dianne again.  It is Wed. March 4, 2009.  I met Doug on March 8, 1976 when he came in to Hydro (where I used to work) for a summer interview…he still had one year left until he graduated.  I had just returned to Canada from a wonderful sun-filled trip down south with my Mom and it was my first day back at work.   My boss was too busy to see Doug and asked that I go to the conference room and let him know that he would be delayed.  I was quite excited about this because I had just directed Doug to said conference room.  So, I went to deliver the message.  I informed Doug and we both did some flirting back and forth and I went back to perform my work for the day.  That evening when my new boyfriend came over to visit me at my parents’ house I told him that if this fellow Doug gets the job I would like to go out with him.  I’m a very honest person.  I knew very little about Doug at that time except that I felt such a strong connection to him.  I was even having my tonsils out around the time he would be starting, if he got the job, and I upped the date to ensure I was there from the first day he started.  Unfortunately, I was an extra week off due to complications.  When I saw him again at work he said it was great to see me again, I responded “have we met before”…the game was on.  He had a girlfriend, I had a boyfriend.  We flirted all summer.  My boss, who kinda had a crush on me, had a screen put up around me so that Doug who sat beside me couldn’t have as much access to me as we both would have liked.  Our first date was Aug. 19, 1976 and we’ve been together since then…more about that later.

I’m trying to let you know the real us to see how this cancer journey has such an ability to try to fragment you.  There  are times when as a caregiver you feel so alone … that person who you love so much is so immersed in their battle there is little room for you.  I think we are able to work together well on our journey  because we have a good solid base.  Marriage is never 50-50…as you all know.  Sometimes it is 60-40, etc.

Doug just had the worst weekend ever, pain-wise.  He rarely complains, and if he does, he apologizes…I give him heck for that because I know he wouldn’t want me to apologize for how I feel.  I don’t even see it as complaining, it is simply making a statement about how he feels and he is entitled. 

We went to one of his many doctors on Monday and Doug has decided to go off of the hormone medicine for now to see if he feels better if it is out of his system.  The worry of course is that the cancer will have a chance to grow.  Right now the meds are giving him no quality of life…he has so much pain everywhere from them and is so fatigued.  I feel it is his decision to make and will always stand behind him.  Of course, another part of me is terrified and can see all these little cancer troops manning up and getting ready to strike but I know he has to make the decision for himself…I love him so much and hate to see him in such pain but I’ve always believed that he is one of the most intelligent men I have ever met and he makes good decisions…after all he married me didn’t he? lol.

He still continues to do an amazing job at work and only a handful of people there know what he is struggling through.  He really wants his bucket list to be one that is full of things that he has done for the cancer community at large and I’m so proud of him for that.

I really try to live each day with Doug with as much joy as we can share.  Thanks for listening to me once more.  I will write again.

Posted by Dianne

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Today is Fri. Feb. 27/09.   I am Doug’s wife.  He is and always will be the love of my life.  If you have been reading his blogs you will know him pretty well.  I finally got up enough courage to write a blog on his site today.  Today he is going down to the hospital to have his PSA checked again.   He hasn’t been writing much on his blog lately because he’s been feeling really sick from what we think is a reaction to the hormone injections he has been getting…for 7 months now.  For those of you who don’t know, he has advanced metastatic prostate cancer and has gone through surgery,  33 + 5 bouts of radiation, HIFU (hight intensity focused ultrasound), and is on morphine and several other drugs…his top drawer if full of them…each one needs another one to counteract its affect. 

I am writing as a wife and caregiver.  I was my sister Judy’s caregiver until she passed from metastatic melanoma.  Then I was a caregiver to my sister-in-law Ruth while she successfully battled breast cancer.  As my husband’s caregiver I find it affects me in a totally different way…it is all consuming, never ending, and heartbreaking. 

I met Doug 33 years ago and after our first date we were engaged within 2 weeks, married within the year and have been very happily married for almost 32 years this July.  I consider him my soul mate.  He is one of the smartest, most sincere, kindest and compassionate people I have ever met.  He has such a love of family,home and nature.   He has a passion for kayaking and loving the environment.  For years now he and a few buddies have gone on a kayaking trip every summer…even though he is now planning for the trip, I worry if he will be well enough to go this year.  Here is why.

He requires hormone therapy to kill off the cancer that is flowing throughout his body and has been on this regime for 7 months now.  The trouble is he is having a severe reaction to the hormones…severe bone pain and numbness throughout his body, fatigue, headaches… By the end of the work day (yes, he is still working full time and doing an absolutely amazing job), he is so tired and in pain he just wants to come home and either go to bed or sit in his special chair … normal chairs are painful for him to sit in so we purchased a very comfortable one a few months ago.  Now I ask you, how can he kayak for hours, empty the kayak, portage, set up camp, etc, etc.? 

Cancer strips you of so many things…it brings such pain to the cancer patient and their families.  Doug always dreamed of kayaking in exotic places…now he dreams of a pain free day.  It is so hard as a wife and caregiver to watch this happening to our loved ones and be unable to do much to help.  As a Mom (to two grown children), I could always find a way to make the hurts go away or to make them feel better and get better…as a caregiver to someone with cancer I find this  inability to help in the ways that I am used to (and to make a difference) very difficult. 

We now take each day as it comes and make the most of all the days we have…even if its just holding hands and watching a movie or a look, a kiss or a smile. 

Doug is thinking of going off of the hormones for a while, with PSA tests in between, to see if he can start to feel a little better and have some quality of life.  Of course, going off the hormones means that the cancer can start to grow again and move somewhere else… We have a long journey ahead of us…that is the one thing I have learned about cancer…it is a journey, not one that you would choose, and the rules change all the time, sometimes without warning and you must be able to somehow find it in you to make those changes.  There is no longer anything you can call “normal” in your life.  “Normal” changes from day to day. 

I have been blessed to have this wonderful man in my life for so many years and I intend to do everything to make our journey through this world of cancer as smooth and loving as I can.

I will write more again…I found this very uplifting.  My best wishes to all who read this and are or have experienced what we are going through.

Posted by Dianne

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