talkingaboutcancer.com

Anyone reading this blog regularly knows that I love to write.  I’ve always been that way and I find the creative process, regardless of what I’m writing, to be very therapeutic for me.  So while there are often some gaps in my writing on this site, I will always be back.  I have a lot to say and to share.

I reached a significant milestone just last night when I submitted the manuscript of my new book to the publisher, hoping to have it available by Christmas.  This book has been 7 years in writing because it is built upon the journal that I kept from shortly after my diagnosis in 2002 through my treatment, recovery and recurrence.  It has been through many revisions and additions as I experienced more and more along my cancer journey.

The working title and subtitle of the book is, “The Wolf at my Door – Cancer in my body, Cancer in my mind”.  I wrote it, much like this blog, to use my personal cancer experience as a way to show cancer patients and their loved ones what they can expect when faced with this horrible disease.  My premise is that the emotional impact of cancer can be as real and as dangerous as the physical disease and affects the patient and everyone who loves them.  “The Wolf at my Door” is a metaphor for the fear that cancer creates and the uncertainty that is always hanging over our heads. 

I wrote this book for several reasons.  First of all, I wrote if for myself, and I encourage everyone to at least keep a journal or diary of their cancer journey.  It’s good for the soul.  I also wrote it for my family and friends, to share with them the intense emotional roller coaster that I have been on.  You can share your own journal with your family and friends to help them understand what you are going through.  You just can’t know unless you’ve been through it personally and they need to know in order to support you.  Thirdly, I wrote it for anyone who has been diagnosed with cancer or who has been told by a member of their family or a friend that they have cancer.  I hope it gets wide distribution for that reason and I hope that you will all get a copy and recommend it to your friends.  In the meantime, if you have an urge to write, we are always looking for comments or for your own personal posts (click on Contact Us above).  As I always say, “Let’s Talk!”

I’ll let you know when my book comes out and how to get a copy.

Posted by: Doug

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Hi everyone.  I’m back after some well-needed vacation and am anxious to reconnect with you all.  I hope you are enjoying what little summer mother nature has given us.  Since I last posted, we have lost Farrah (overshadowed somewhat by Michael Jackson’s death).  This was not unexpected but it is great loss to all of us in the cancer community.

Today, I would like to talk about acceptance.  This is a major issue for anyone with a serious personal crisis but particularly for those who live with cancer.  Acceptance does not mean giving up or giving in but simply recognizing and deciding to live with the cards you are dealt.  It has been about a year since I was diagnosed with advanced metastatic cancer and, over this period, I have been on a roller-coaster of treatments, pain and side effects.  It has been enough to beat anyone down.  I’ve tried not to let it, but there have been times that I have dispaired of ever feeling “good” again.  It has been physically and emotionally trying to say the least.  But a month or so ago, I started thinking about trying to put all of this aside and to start doing things again. I was afraid, however, that I was slipping into denial, one of the most dangerous things any of us can do.  So I visited my psychologist to get his opinion.  He knows me very well, having been on this journey with me for almost seven years.  It was he who told me earlier that I was going through the “existential experience of living and dying at the same time,” which gave much-needed context to what I was going through.

He explained to me that this was a normal and healthy stage in the whole process of living with cancer.  I was finally coming to “accept” the fact that I couldn’t do any more than I was doing about my disease and that I could give myself a break and really try to enjoy life, even though I may not be able to do all the things that I used to.  Denial is moving on without recognizing and adapting to the fact that things are not the way they used to be.  Acceptance is moving on in spite of that fact.

As an example, I had, up to that point, been holding off on committing to my annual kayaking and camping trip with my buddies but now I was ready to take it on.  I told my buddies that I was going even if they had to carry me up the rocks!  They were very supportive and pleased that I was willing to try.  I knew it would be hard on me but I was willing to accept that.  So I went and had a wonderful time (just this past week).  As expected, it was very hard on me and I spent a good deal of time resting in my tent.  Paddling on the river and through heavy-duty waves hurt like hell but I was thrilled nonetheless.  Unfortunately, I blew out my knee and came home (as my dear wife pointed out) “broken”, which had nothing to do with cancer except that it may have been attributed to my general lack of muscle tone from hormone treatments and my inability to exercise as I once had.  In a bizarre way, though, it’s almost nice to have something other than cancer to worry about.  Nuts, eh?

I don’t think that I will be able to do this trip next year and will have to satisfy myself with shorter trips on calmer waters.  But I did it and I’m glad I did.  Some people had difficulty undertanding why or how I would do this to myself but, as I told them, there are just some things that you need to do.  Acceptance allowed me the freedom to do it and to experience the soul-enriching experience of being in the wilds and on the water.  It was truly liberating!

Life is a gift and it is here for us to experience, regardless of our physical limitations.  We all need to embrace it and try to wrestle as much adventure out of it as we can.  If you are living with cancer, at some point you need to find a way to accept it and to move on, not in denial, but in the spirit of truly “living”.  If your loved ones have cancer, you need to encourage them and support them as much as you can.  Don’t tell them to “get over it”.  Be patient and understanding and help them along.  And when they finally reach acceptance, join them in the adventure.

So what if it hurts?  Accept it!

Posted by Doug

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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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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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A cancer diagnosis can be one of the worst things that can happen to someone.  Hearing the words, “You have cancer,” can be devastating and almost always life-changing.  But this is just the start of many bad times to come.  At every step of the journey, you have something new to deal with and, in many cases, an escalation in the seriousness of your situation.  You never get used to the constant stream of tests, doctor visits, phone calls, appointment changes, treatments, side effects, etc. but you do learn to “go with the flow” as you recognize that your world has changed and that this is what it is going to be like for awhile.  With each new test there are new surprises, but they don’t seem to be as bad as that first surprise because you now steel yourself for whatever may come – good news or bad.  And when it finally comes, the truth is, you feel a kind of relief because now you “know”.  With each new stage in your journey, you move down a path of healing, or a path of further tests/treatments, or maybe they even find something new to worry about.

Many of us become students of our disease (through reading books, the Internet, talking to others, etc.) so we know the range of possible results and “then whats” each time we have a test.  Once we have the results, then we move past the uncertainty of of the last test and move on to the uncertainty of whatever comes next.  Many cancer patients find that the uncertainty is, in many ways, worse than hearing bad results.  This is because you can’t do anything with “not knowing” except worry about it.  At least when you know, you can concentrate on doing whatever comes next or on making the next set of choices.  There are lots of periods of uncertainty and they can be very hard on you.  Those newly diagnosed with cancer need to be prepared for this and those around them need to know that just waiting can be as hard as hearing bad news.

I think of these periods as chapters in a book where the tension builds up until the climax and then you turn the page and concentrate on what’s happening next.  When I started Hormone Therapy last summer for my cancer (Advanced Prostate Cancer), I felt like I had started one of those new chapters and knew that there was a clock ticking down to the time when it would stop working.  That uncertainty was always nibbling away at my mind and, while I hoped that it would last a long time, I new that it could stop working at anytime.  I’ve just discovered that my PSA is rising again which usually indicates that the hormones have stopped working.  Now I face the uncertainty of what limited choices I have left to me and what that means in terms of life expectancy and quality of life.

Uncertainty seems to be the worst side effect of having cancer.  It’s wearing on me and on my family.  I still have hope, but that is perhaps the most uncertain thing of all.

Happy New Year!

Posted by Doug 

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When someone you love has cancer 

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I recently had the rare pleasure of addressing a large group of leaders from the Canadian and Ontario cancer community, including funding bodies, cancer centers, coordinating agencies and government agencies.  The overall topic was Cancer 2.0, focusing on how information technology is changing cancer care.  I participated on a panel called “The ePatient is coming: Prepare to be disrupted.”  In fact, I was the only patient at the conference.

It was a great opportunity to share my personal story, how I used the Internet for support and education, and how I used this information to work with my doctors to make treatment decisions and understand all of the implications and side effects of my treatments.

In the course of my presentation, I went through the steps in my personal cancer story to illustrate that it is a long, involved journey with many, many stages, all of which have requirements for new information and resources.  It is this complexity and longevity that creates a real challenge for organizations who are trying to apply information technology solutions to provide good access to ePatients.  I wanted to share the list of steps/stages with you all because I don’t think people generally appreciate the scope of the journey.  It’s not just five or six steps, but many more.  So here goes:

Diagnosis > Options > Choice of doctor/hospital > Telling family and friends > Scans, tests, staging > Initial treatment > Side effects > Recovery > Support groups > Self image > Surviving/thriving > Health & fitness/nuitrition > Work issues > Sexual dysfunction/intimacy > Disease progression > Fear of recurrence > Mortality/spirituality > Recurrence > Options > More scans and tests > Treatment > Side Effects > Depression/grief > Emotional coping > Fear of no cure > More scans and tests > Metastasis > Symptoms > New treatments > Options > Palliative care > Medications > Side effects > Drug Interactions > MedicAlert > Life expectancy > clinical trials > Career > Finances > My “secret identity” > Quality of life > Things to do (bucket list) > End of life > Those left behind > Hope > Legacy

This is what my life has been about for the past six years and what it will be for the next while.  Everyone with cancer could write their own list and, for many, it may be even longer or more complicated.  For those of you with cancer, think about your journey and perhaps share it with us here.  For others, I hope that this gives you a better understanding that will help you to help those you love.

None of us choose this journey so we must make the best of it.  Understanding it fully is so very important.

Journey on.

Posted by Doug

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