My surgeon says that he was able to remove all of the tumour that he could see, which is very good news (much better than leaving some cancerous bone to avoid damaging nerves)! So this is something to celebrate. I have my pre-op, base case PSA reading (high for me around 6) for a reference point, yet it takes a month or two for it to clear out of my system post treatment. But I’m hopeful that we will see it drop. If it gets down to “undetectable” than I will be ecstatic.

On top of that, if the surgery leads to an elimination or reduction in the pain I’ve been experiencing from the tumour for the last few years, that could mean I can reduce/eliminate the pain meds! So, all in all, much to look forward to.

This past week has also been very hard on Dianne who remains my numero uno caregiver. Not only has she had to wait on my every need, but she has had to carry out all the household duties that I either did or helped with prior to the surgery. She continues to amaze me, reinforcing how lucky I am to have had her for the last 33 years.

While I don’t feel lucky much of the time (with cancer hanging over my head and with all of the unusual things that have happened to me along the way) I feel a degree of optimism that has eluded me for some time. It’s a nice feeling.

But I’m starting to go stir crazy camped out in my living room!

Many thanks to friends and family for all your support through this.

Posted by Doug

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

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 

Posted by Dianne

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

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

Well, I know how hard it is on her too as she watches me wrestle with all of the direct effects of my cancer and the side effects of the meds and treatments.  I don’t think I could do it without her and I try to tell her that as often as I can.  We are in this together and, while I carry the physical side of this disease, she carries the emotional side that is is just as hard and painful.  I am the third cancer patient lucky enough to have Dianne as a caregiver (her sister died of melanoma and her sister-in-law survived a terrible battle with breast cancer).  She was always there for them (more than their immediate families realized) as she is always there for me.

People like Dianne are the true heroes of these battles, no matter how courageous people think we, who have cancer, are (I sure don’t feel courageous!).  I would be lost without her and I feel terrible for those who have to go through this alone.  So don’t forget the heroes in your own lives and feel blessed that you have them.  Hang on tight!

Dianne.  I will always love you and you will always be my hero.

Posted by Doug

Notionally, the book is written for the family, friends and acquaintances of people with cancer but, as I read it, I could see my own experiences as a cancer patient and survivor mirrored in the stories of so many others. In so doing, it gave me strength from knowing that I am not alone.

Lori is one of the good people who has chosen to turn her own experience with his horrible disease into a positive force for helping all of us to cope and to live. I highly recommend this book to everyone touched by cancer. Check out Lori’s site at www.lorihope.com.

Posted by Doug