talkingaboutcancer.com

In the midst of a battle with cancer, we often find ourselves wishing for something that makes others think we are going a little batty.  It is important for all of us to understand that things are just not very simple at times.

Case in point.  In my personal cancer journey, I live with the knowledge and expectation of further metastases.  New lesions will likely occur in the bones and, based on previous experience, will hurt like hell.  So naturally, I expect to experience bone pain that will steadily grow over time.  I also look for increases in my PSA which is an indication that the cancer is actively growing somewhere.  When one or both of these occur, then I will undergo a bone scan and, if necessary, an MRI.

For quite a while now, I have been living with a growing pain in my right rear sacrum area which I thought was very suspicious.  In August, a bone scan and x-ray showed no indication of new mets and my PSA was still undetectable.  With the pain continuing, I had an MRI in October and am still waiting for the results.  Meanwhile, my PSA has started to rise.

So here it is.  I want the MRI to show something.  I want to see a metastatic lesion.  Does that sound strange?  A few people I said this to looked at me like I was nuts.  But here is my reasoning….

I have metastatic cancer that is incurable.  It will spread.  I don’t like it, but I know it.  All I can really do is to treat the pain (and do some chemo to help strengthen my bones a bit).  This means taking more and more morphine as required.  But, I can also have radiation therapy on the site if we can see it. Radiation therapy will reduce the pain and might even stop that particular spot from growing much more.  But so far, since nothing has shown, we can’t treat it and I have to live with a pain that is increasing daily (it seems) and have to take more morphine, which has all sorts of side effects that I wouldn’t wish on anyone.  If the MRI shows something, then we can pinpoint the new lesion and treat it.  If it doesn’t, well…. I’m not sure what I’m going to do.  I sure hope we find something.

Make sense?

Posted by Doug 

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As a young woman I watch Charley’s Angels religiously.  I loved all the women in it and the fact that they were shown as strong women at the time was wonderful to see.  I thought Farrah Fawcett was so beautiful…as did millions of others.  The beauty I saw then was on the outside, but when I watched the Farrah Fawcett Story her true inner beauty came out.  I’m sure its not easy in Hollywood to come out and say, hey I have cancer, and by the way, its anal cancer…my heart went out to her and her family through her long and tough journey with cancer.  Farrah showed both strength and softness throughout her entire journey.  She was so blessed to have her friend Alana Stewart and her family to share the journey with her.  Sometimes I hear people talk about someone with cancer in a hushed tone and say they feel “sorry” for them.  Farrah showed that she had a full life in spite of her cancer and I felt she wouldn’t want anyone feeling sorry for her.  I felt she experienced some of the worst times of her life and some of the best times of her life.  I applaud her for sharing her difficult journey and giving an awareness to all about anal cancer.  Her death in June of 2009 was a sad loss.

I also grew up watching Patrick Swayze develop as an actor. He was a wonderful actor and from the sounds of it also a truly wonderful husband.  He was another actor that was very handsome.  I loved him in Ghost…who didn’t.  When he passed away in September of 2009 it was also a sad loss.  My heart goes out to his wonderful wife and I thank them both for their openness about their journey and the fact that he never gave up.

Sharing your life with the masses is not easy, I’m sure.  The gift of awareness that they both gave about their kinds of cancer is priceless.  My wish to them now it that they are at peace and where they want to be.  I thank them from the bottom of my heart.

Posted by Dianne

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I am very, very happy to tell you that my new book, The Wolf at my Door, will be available for ordering shortly through this site and most on-line bookstores. 

I love to write and, throughout my cancer journey, I kept a meticulous journal of every bit of news, every treatment, every side effect and every moment of fear, sadness and occasionally joy.  I decided to write this book in the same spirit of this blog – to share the tremendous emotional ups and downs that go hand in hand with being diagnosed and living with cancer.  It is written for anyone with any type of cancer and for their loved ones who share the emotional disease that is just as devastating as the physical disease.

Stay tuned and think about what kind of Christmas gift you could get for the cancer patient who has everything!

I think you will like it.

Posted by Doug

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As anyone with cancer knows, regular scans and blood tests are a way of life.  They can be viewed as a lifeline or as a curse.  Results from blood work, X-rays, CT Scans, MRI’s, Bone Scans, etc. can tell you whether your cancer is progressing or not, or they can be frustratingly inconclusive.  They are a huge source of “scanxiety”.

I’ve written before about the nervousness I felt coming up to my annual PSA blood tests after my initial diagnosis and treatment and how, just as I was getting used to hearing “undetectable”, my cancer recurred.  Since that time, my cancer has metastasized and scans and tests are now all about how fast it is spreading and all the nasty things that go with that.

Just to keep things interesting, over the past couple of months I have developed a severe pain in my right sacrum area that feels and behaves suspiciously like a new metastasis.  My oncologist arranged for me to have a bone scan and an X-ray and I found myself worrying a lot about what they might show.  It was as if I was waiting for the other shoe to drop, so to speak.  The scared little boy side of me was preparing for bad news yet again, while the rational side of me knew that it didn’t really matter what the scans showed. When they came back clear, I was pleased, although it left me wondering what it is that is causing such sublimely excruciating pain.

I did, however, learn a very valuable lesson from this latest little drama.  I had assumed that the scans and tests would become “routine” for me after a while, given that I knew the cancer was there and that it would eventually spread.  But I’ve come to realize that there is always going to be something to worry about. Regular scans are going to be a part of my life from here on in whether I like it or not.  But I do have a choice.  I can choose to worry over every new little (or big) pain that comes my way, or I can choose to accept that there will be a lot of other shoes dropping and stop freaking out over it.  The uncertainty around how fast it will spread may translate into how many good years I have but, ultimately, I can’t do much about it.  My psychologist has pointed out several times that it would be very sad if I spent the rest of my years worrying about how many years I had left.  This past experience had helped me to really see the truth of that in a way that empowers me to make that choice.

I am a worrier at heart, but I don’t want that to be my guiding life principle.  I have the power to choose to live in peace with my illness and I will do that.

I choose simply to live.

Posted by Doug

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Yes I’m a caregiver. I used to think my caregiver days were a long way off because I always thought it would be for my Mom or Dad and although they are in their 70s they are both healthy.  But this past year I became a caregiver to my husband Bob.  He was diagnosed with a very rare form of Cancer (Thymoma) in Aug 2008. He was the most healthy person I knew so it came as a total shock.   It has been a long often frustrating journey and I could not have done it without the support of friends, family, colleagues and people I came to know during the process. Bob was in hospital from September 08 until end of January 09 and then started radiation after that. He was in hospital so long because he reacted to everything that was given to him.  We now know he has many allergies.

But how do you keep everyone up to date while you’re spending your days at the hospital or at doctors appointments or you’re just so exhausted you can’t think.  My total focus was on my husband and the only way we were going to get through this was taking “one day at a time”.  Literally that’s all I focused on.  What were we doing today and only today.   I couldn’t think even two days out because we didn’t know how he would be at the end of today so no need worrying about tomorrow.  I had enough to worry about.  I could not bring myself to think “what if”.

It was important for me to keep a record of what was happening to my husband.   You see he’s not the detail person in our household.  I am and I’m an information junkie too.  I need to have all the relevant information so I’m less stressed.   I asked lots of questions each and every day and I kept a record of all of Bob’s test results and reactions both physical and mental (physical is one thing, the emotional side can be really scary)  I had read about people keeping journals but for me I had to use technology in some way. I’m not a paper person so I used the Memo section in my blackberry.  (yes I’m one of those “crackberry” addicts) I couldn’t find a suitable technical solution that was easy to input data into when I was away from my computer so this worked for me.  If I wasn’t able to get answers to questions from the nurses or doctors right away,  I was able to take all the details and get help from a friend who is a nurse.  She is a very patient person and she was able to tell me what I needed to ask the next day of the doctors or whether this was quite normal for these types of reactions.  If you have someone who has this type of medical background this is one way they can help you during this challenging time, so don’t be afraid to ask.  They feel they are helping out and it sure helped keep me sane for all those months.

Some people have a hard time speaking to others about Cancer but I’m a people person so it was important for me to communicate.  Keeping the details also helped when it came time to keep people up to date.  I was getting phone calls and e-mails and I was floundering trying to keep up.  Doug uses this blog, but I couldn’t figure that out quickly and at the time I wanted this to be a “push” to people so they didn’t have to go somewhere to get the information.   Many of the people in my network are not that technical so e-mail worked really well for keeping them up to date.  What started out as a simple distribution list turned out to have over 150 people on it. (if you use Microsoft Outlook this is really easy to do)  So I would take the details from my blackberry every day or so and tell everyone what was going on.  I tried to put a bit of humour in each day if I could because my husband has a wickedly dry sense of humour so everyone was keen to see that peek through.  Many of you will say yikes, how did you do that every day?  No it wasn’t easy some days, but it was my release to sit and write about our experiences for that day.  It helped me to be logical about what had happened, what needed to happen tomorrow and with doing just the one e-mail it saved me from answering many others.  And some days it was my means to rant about what needed to be improved in our healthcare system.  Oh don’t get me wrong I had lots of e-mails but what I said each day was a thank you to all who called or sent notes but I just couldn’t respond to each and every one.  I read them all however because they gave me hope and allowed me to cry if I needed to.  It’s truly amazing what a release a good cry gives.  I had a hard time holding it together if I was speaking on the phone or in person so the technology allowed me to communicate a little easier.   

The other tool I used was Facebook.  Yes I’m on Facebook. It does have a good side to it despite all the hoopla about privacy.  You can share information easily on this social medium so I took a copy of the e-mail details and copied them into a NOTE on Facebook. I’d date the Note “Update on Bob Cockram as of <date>” and this would be published to my friends Facebook Home Pages.  Like “you have new mail”.   Many of my friends and family had trouble with e-mail at their businesses so Facebook worked really well for them once they got home.

We now have a record of what he went through. When I look back I can see Bob’s progress and his difficult times too.  This record was also very useful when we went for his first visit to our family doctor.  Once you leave the hospital your family doctor is on the hook for looking after you. You no longer have all of the hospital resources available to you.  So to bring him up to speed I made an appointment with him the first week Bob was home.  I took all the details and made a summary of what Bob went through, his ups and downs and allergies and ongoing challenges.  I made a copy of this for our family doctor and he now has this in Bob’s file.  If this office had been totally automated it could have been a word file that would attach to the chart electronically but they are not there yet so it’s in the paper file for now.  Our doctor was so pleased to get a summary and it has made our lives easier because he had a starting point and we keep him up to date every 6 weeks with what is new.

Summary of tips

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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

2 Comments »

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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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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