talkingaboutcancer.com

A few weeks ago, there was a special on TV about Farrah Fawcett’s fight with anal cancer.  I was riveted to the screen and wanted to share some of the thoughts I had while watching it and turning it over in my head these past weeks.

First of all, I remember Farrah as one of the early Charlie’s Angels and she was unquestionably the “it” girl of my generation.  What guy my age didn’t have that famous poster of hers back then?  She was an icon for many years.  I was saddened when I first heard of her battle with cancer a few years back…. one more to add to a growing list of celebrities to join the club.  From the beginning, she committed herself to fighting the cancer and was very open to talking about it in the media.  For that, I tip my hat and say thank you.

This latest show began as a video diary of her doctor visits because, as many of you know, it’s often difficult to remember everything that was said to you, particularly if the news is bad.  I take notes and pay attention myself, yet I still need to have my dear wife with me to ensure I don’t miss anything, something I would recommend to everyone (not my wife, but someone close to you!).  Anyway, her diary turned into a full-scale documentary of her search for answers and her long treatment regime which was full of ups and downs as it is for many of us.  There are several lessons in this for all of us.

First of all, never give up!  Farrah has never given up and has had successes where others told her not to bother.  And while most of what she has done has just prolonged her life, rather than cure her cancer, the extra time (for her) was worth it.

It is very important to consider the trade-offs when you undergo an aggressive approach to fighting cancer.  You can see from the documentary that she suffered considerably throughout her treatments but, to her, it was worth it.  It is as if she has defined quality of life as life itself.  But that may not be for everyone.

For myself, I have stopped the hormonal treatments that slow down my cancer.  At this point, there is nothing to cure it, but slowing it down will prolong my life.  Unfortunately, the side effects of my treatment (which I will write more about to make another point) destroyed my quality of life to the extent that there were days that I couldn’t get out of bed due to the pain I was experiencing.  For me, I couldn’t go on in that way.  For me, quality of life assumes life with some quality to it.

Farrah says that cancer makes its own rules, which is a very insightful comment because every cancer is different and everybody’s cancer experience is different.  If you decide to blindly follow the advice of doctors who steadfastly stick to the established standard of care which is based on the “most likely”, you may miss an important opportunity to find something that better explains your particular situation and which may open the door to alternate treatments or different decisions.  This is your choice, ultimately, but I believe in having as much information and as many alternatives as possible before I make a decision.   And you may, as I have, decide to not pursue a particular treatment for your own reasons.  It’s all okay.  It’s my life, it’s your life.  Just be informed.

The other important lesson in Farrah’s Story is her blunt portrayal of what it is like to live with cancer and to experience the side effects of treatment which, for much of the cancer journey, are worse than the cancer itself.  Farrah lives constantly in pain and in varying degrees of illness and never seems to let it stop her.  I know some of what she is experiencing as I live through my own personal situation (I was going to say Hell, but that would be too melodramatic).  When you hurt everyday, when you are sick more and more often, and when you have nothing left in you at the end of the day, it is tough to keep up a front and harder and harder to fight for your life.  Farrah’s Story clearly illustrated this and both my wife and I could relate to what she went through.  We all need to know this going in and our loved ones need to understand it and support us.  Some people are relatively lucky and one treatment (or set of treatments) does the trick and they can get on with their lives.  For others, it becomes their life.  It can consume you if you are not careful and if you don’t have someone around to hold your hand and to encourage you to fight for the enjoyment of life and for life itself.

There are more lessons in this and I encourage you all to find a rerun of the show and watch it.  Farrah didn’t seem very good near the end and it is clearly getting harder and harder on her to continue the fight.  But she has given us an important gift and we should all be thankful to her for that.

I appreciate all the support I get and I think my friends and family really “get it” now.  This is too important and I don’t want to be putting on a false persona for them.  When I feel bad, I tell them so.  They are my friends, my family, and they can handle it.  And I love them for it.

Thank you, Farrah.

Posted by Doug

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This is Dianne once again.  Tonight’s topic is Doug and the things he needs to do that are so very important to him but that he never gets time to do.  For Christmas, our wonderful and wise, not to mention beautiful, daughter gave us a one-night stay at a local hotel which expires tomorrow (May 31).  So I suggeted to Doug that it would be the perfect time for him to become a reclusive writer who takes his memoirs to an unknown destination and completes them…no one to bother him…order in room service…no doggies to have to feed or walk…just concentrate on the wonderful and I think inspirational book that he has been writing since he was first diagnosed.  I absolutely miss him when he is away but I want him to follow his dream and finish his book.  Caralia’s idea of the one-night stay was to allow us some much needed alone time, but I know how important it is for Doug to complete the book.  He  should have been a writer…his writing is both heart-felt and magical. 

Sometimes we do things for our loved ones that are not easy for us and by doing that we show them how much we love them…in a quiet way…at least that’s what I think.  So I go to bed alone and think of calling him (because I really miss him) but don’t because I know he really needs to do this.  This book will help men, women and families touched by cancer to follow the journey of a very courageous man and his family.  Men don’t often talk about illness … especially when it has to do with such an important part of their bodies…yikes…but Doug has shared the good and bad and I’m proud of him for doing that.  Its a very personal book and just the kind of thing people dealing with cancer need, and hopefully it will help them on their own journey.

Thanks for listening.

Posted by Dianne 

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Hi.  I don’t usually use this site as a platform for promoting upcoming events, but this is something I am personally involved in and I think it is very important.

I am participating in a very special event with Cancer Care Ontario, which will provide direction on the use of information technology to help with the transformation of the care delivery model to a more participatory and collaborative approach.  It’s a big topic and every little push helps.  Even though it’s related to the Ontario health care system, changes in this area are shared internationally.

As part of the overall event, we are hosting a Live Chat on the Caring Voices website on Wednesday, June 3 from 8:00 to 9:00 Eastern time.  I would really appreciate it if you could join in, even to just “lurk” (but preferably to chat), and send this to anyone you know who might be interested in participating, including any other patients, survivors and caregivers you may know.

Here is the text of the invitation with instructions on how to join:

Have your say with Cancer Care Ontario (CCO) and be part of turning ideas into action – Live Chat with Dr. Carol Sawka, VP of Clinical Programs and Quality Initiatives at CCO. 

Maybe you’ve already shared with friends, family, and others the frustrations and challenges of your cancer journey.  Now let CCO know how you think things can be improved.  Let your voice be heard!

CCO is developing a plan to improve the patient experience along the cancer journey.  Part of that includes hosting an event in partnership with the Cancer Quality Council of Ontario (CQCO) to look at how technology can be used to improve your care (or the care of your loved ones).  How?  By creating a more participatory model of care between patients, caregivers and providers through technology.  And by empowering patients, caregivers, and providers through tools that help navigate the system and connect people with each other.

Your chance to weigh in on these important issues is coming up on June 3rd at 8pm Eastern on www.CaringVoices.ca.  We welcome participation from patients, caregivers and providers.  Your thoughts, ideas, and concerns will help inform the discussion at the event and the CCO plan for improving the patient experience. 

To join this chat log on to www.CaringVoices.ca; create a user name and password and on the evening of the chat click on the link to “Join” from the events calendar.  Once you have registered on www.CaringVoices.ca be sure to check out the other great events, resources and forums.

If you have any questions please contact CaringVoices.ca through the “Contact Us” link or at survivorship@uhn.on.ca.

Thanks everybody.

Posted by Doug

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Hi there, it is Dianne sharing again.  The first thing I must tell you is that Doug is not only a great husband and writer but also a fantastic “fix-it guy”…Mr. Perfection.  My girl-friends were always jealous at how well he did a project for us (i.e. designing and making a southwestern adobe fireplace in our living room) and how quickly and effortlessly he completed it.  If I purchased a new mirror or picture…it was up on the wall that night or the next.  Since Doug’s recurrence and the overall affects of surgery, hormones, HIFU…etc. he has not had the energy or strength at the end of the day nor the desire to do these things.

In the grand scheme of things I know that having a picture hung quickly is no big deal but, when you have been the kind of guy who this is important to and you can no longer do things that way, it can be very frustrating.  We now have to hire people to do the work that Doug used to do so easily.  Sometimes the workmanship is lacking and he thinks,  ”I could have done that better and quicker,” (and he is right).  This, to him, I know is a loss and it breaks my heart to know he feels this loss.  Sometimes I imagine cancer just taking away pieces of who you were (or perceived yourself to be) piece by piece.  It not only takes away your health but a little piece of you every day in small slices.

 I hate this disease with a passion and am mad at it for doing this to us.  But the great gift that this awful disease has given Doug is both the ability and desire to help others suffering like he is through his writing and gifted ideas he shares on this blog and at conferences and just talking to those he cares about.  He has always been a man that worked not only for his family but his community and now through this amazing site that he cares so passionately about.

Rock on Doug.

Posted by Dianne

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I have attended several conferences and meetings recently discussing the role of information technology in patient care.  This is a real interest of mine and one that I have personal experience in.  Shortly after my initial diagnosis (I couldn’t do anything for about a week) I began what turned out to be an insatiable search for information about my disease, treatment alternatives, odds, personal stories, etc.  I used this information, primarily from the Internet, to manage my disease throughout my long, eventful journey.  Admittedly, I am a control freak about my health.  I need to know exactly (or as close as possible) what is happening to me and what I should be doing about it.  But I wouldn’t do it any differently.

I have been surprised recently to learn that many patients do not feel a need to know all about their disease, that they either don’t want to know or they are more than satisfied to follow their doctor’s orders.  Is this denial or blind acceptance of medical authority?  Perhaps.  But who am I to criticize how people choose to cope?  I just hope they are making a conscious choice.

Learning as much as you can about your disease has many, many benefits.  First and foremost, it gives you some control over a disease that is very hard to control and that makes its own rules.  This is important for me but may not be for others.  Secondly, it helps me make decisions in collaboration with my medical team.  This is very important.  The Internet cannot make you a doctor but it can help you discuss and understand diagnoses, test results and alternatives in an intelligent manner.  And not just with doctors.  I’ve found it very useful to explain my situation to family and friends in an understandable way.  This is my support network and they need to know to be able to help.

But most importantly, it can give you confidence that you are getting the best treatment possible.  If you know what the doctors know and, to some extent, what they don’t know, then you are better able to assess whether you are being given all of the information available.  That the decisions you make are based on the best information you and your doctors have.

When you are dealing with a disease that takes so much control away from you and that is fraught with gray areas, confidence is hard to come by.  Grab what you can.

Posted by Doug

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Cancer does terrible things to your body and to your mind.  Sometimes, it can initially be discovered without any real visible signs and, however hard the treatment may be, you may never actually “see” the cancer.  It’s kind of like having a car mechanic tell you that you need an expensive part replaced when you didn’t even know there was something wrong and you never actually see it.  While I generally trust doctors more than mechanics, there is always a little voice in the back of my head that wonders if it’s all really happening.  Maybe it’s all just a big mistake!  That has certainly been the case for me, even though there is plenty of evidence to prove that it is really happening.  Perhaps it’s just a form of denial or maybe even a form of hope.

In my case, the development of a bone metastasis was the confirmation that my cancer was back.  This was extremely important for two reasons: (1) it meant my initial and secondary (upon recurrence) treatments didn’t work and that the cancer was no longer curable, and (2) it hurt like hell!  While I have been able to keep it from spreading further for over eight months, it is still there and I would not be able to walk without a constant dose of morphine.

While the pain was very real, it wasn’t until I saw the bright spot on a bone scan that I had visible evidence that I could look at, relate to, and show to others to explain what was happening.  I have had several treatments on this spot (radiation and experimental high-intensity-focused-ultrasound) that didn’t eliminate the pain and it has been scanned so many times, there is no doubt that it is there.  But I still had that pleading little voice (smaller now) telling me it could be a mistake, so I asked one of my doctors if I could see it on the MRI scan.  He showed it to me from several angles and I could see quite clearly that it was there and, while relatively small (1×2 cm), it was very near the sacroiliac joint which probably accounted for the tremendous pain it caused.

So it’s there.  No doubt about it. But somehow I feel a bit better having seen it and I no longer hear that little voice.  Is this a good thing?  Perhaps.  I think it is for me, but maybe for others, it might be better to have that little bit of uncertainty to hold on to.  My advice - if you really need to know, just ask your doctors.  If you’d rather not, don’t ask to see it but don’t stop treating it and hang on to that little voice and the fragile hope it offers.  There’s nothing wrong with that.  We all need hope.  I hope for a cure which, as elusive as that may be, can happen and it’s better than hoping it’s all a mistake.

At least for me.

Posted by Doug

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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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