talkingaboutcancer.com

Happy Mother’s Day! This weekend was all about family and, like many others, we spent it together with my mother and my brother and his wife. It was great to be in the company of people who love you on a day that celebrates life. For me, this day had a special significance given the fight that I am in. Having cancer puts a whole new perspective on life and, in particular, what’s really important. Family is important. Love is very important. Knowing that people love you and care for you is one of the great gifts of life. But while I can bask in the love of my family and enjoy the day (as I now try to enjoy every single day), I know that there is a tension in the air.

I don’t really need to talk about it all the time, because I know that they care, but I know that it is on everyone’s mind. They want to say something, but they don’t know what to say, so it goes unsaid.  And while we enjoy our time together, laughing and reminiscing, all that is unspoken hangs in the air.  My wife calls it the elephant in the room.

All we really need is for our loved ones to ask, “How are you doing?” That is enough to show their concern and interest and leaves it to us to decide what to say and how much to say.  We can dive right in if that’s what we feel we want or need, or we can keep it short and sweet.  That takes the pressure off of everyone.  It doesn’t require more than that.

We are all in this together and we need to be open and communicate.  It is always tough to know what to say, but all you really need to do is ask.

Posted by Doug

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Well, I met with my oncologist earlier this week to get the results of my three month (post-radiation) PSA and didn’t hear what I wanted. I’m not sure what I expected to hear, but I was advised that my PSA was unchanged. This suggests that my 33 days of radiation treatment didn’t work or, if it did get the cancer in the treatment area, there is more elsewhere.

Now, getting this kind of news alone can really bum you out, but they suggested I come back in another 3 months because, in a small number of cases, the PSA can take longer to drop. You might think this is good, but it really isn’t because it can create another long, depressing period of uncertainty and, even worse, give false hope.  But this isn’t going to be the case with me because I have educated myself thoroughly and I know what the odds are. And I’ve had lots of time (since my recurrence 6 months ago) to think about all the possibilities and likelihoods and come to grips with it.

It sucks, but it is what it is and I have to get on with life. And that means living each day to its fullest and learning how to be more than this disease. There is no cure beyond the unsuccessful treatments that I have already tried (surgery & radiation) but there are things I can do to slow it down. That means that I can fight it knowing that each year I get increases the chance that something new will be developed to give me even more time.

This is a good place to be and I want to enjoy it for as long as I can.

Posted by Doug

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Today I gave blood. Not for any altruistic reasons (I don’t think they would accept my blood any more) but in preparation for my 3 month, post-radiation PSA check. It’s been quite a wait and next week I get the results. If my PSA is unchanged or higher than before my treatments, then I guess they didn’t work and I went through it all for nothing. If it’s back to “undetectable” then the treatment worked and I could be cured or their still could be microscopic cancer cells elsewhere in my body that could flare up later. I won’t know until they do or don’t.

I have been coping with the wait by working hard…..keeping busy, knowing that my subconscious mind was chewing on the “what if’s”. It’s been okay, really. Most of the shock of recurrence and the fear of the possibilities assaulted my peace and self-confidence when I was re-diagnosed. I haven’t really accepted it, but I have learned to live with it (I think). I’ll know better how I have really handled it after my appointment next week. But after doing all that I could to learn my options and take action, there really isn’t anything else I can do. It becomes all about coping and adapting…. learning to live with cancer. At times I feel it has made me stronger and at times I wonder if I am strong enough.

Wish me luck.

Posted by Doug

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There’s something about the word CANCER. When we hear that someone has cancer (regardless of the type or the prognosis) we drop our shoulders, tilt our heads and go, “Ooooohhhhh.” When we hear that we have cancer, our heart stops and we become deer in the headlights, imagining all of the horrors that we will be faced with - sugery, radiation, chemotherapy, weakness……. death. A lot of this is just ignorance, because few people know much about the 200+ kinds of cancer, staging, etc., but some of it is just the fact that the word itself has become synonymous with disease and, yes, with death. I see this all the time in the way that people react to the fact of my cancer, in the way they talk about it. People say, “you’ll be fine,” but they don’t know; they just want to make you feel better - or maybe it makes them feel better. I try to explain, as simply as I can, what is going on with me so they can understand the context of my feelings. For the most part, people take it well, even if they don’t know what to say, and I feel better for the sharing. But we have a long way to go.

This blog strives to help people understand the emotional impact of cancer so that they can be supportive and give strength to their friends and loved ones with cancer. For cancer survivors and those with cancer, it can show that they are not alone and they can derive strength from others who have been in their shoes.

I believe that anyone faced with a life-threatening illness experiences many of the same emotional stresses but that over-reaching specter of cancer adds another dimension by enveloping everyone close to us with a shared fear. This is why knowledge and understanding are so important. The doctors can fight the physical disease but we ourselves must fight the emotional disease by being open about what we are feeling and by helping others understand.

Cancer is not always a death sentence. It can be if it isn’t treated, but more than half the people diagnosed and treated will survive, some with little or no residual effect (at least physically). Rob Buckman discusses this in his book, Cancer is a word, not a sentence, by clearly explaining the impacts and outcomes of the different cancers.  If we can better understand this and help others to understand, perhaps we can lessen the emotional stress and the pervasive feeling of gloom that prevents us from dealing with it in a more realistic way.

So read through all of the posts and comments on this site and visit the links we have posted, and follow the links on those sites.  Read the books that are recommended and lend them to your friends and family.  There are many of us out here who want to help.  Post your comments so we can all benefit from your experience and insight.

Let’s talk.

Posted by Doug

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A couple of weeks ago, a friend of my wife finally succumbed to cancer. She had lymphoma and, while everyone thought she had been doing well, she suddenly deteriorated and died. She was a few years younger than Dianne and I with a husband and children and she should have had many more years with them. But it was not to be. It was interesting how this affected us.

Dianne attended the visitation with several of the “girls” who had known this lady. She was sad at her passing, but it struck a much deeper cord because of her worry over my recurrence and what that could mean. It personalized it much more than her other friends realized and she came home under a dark cloud that held on for several days. I had thought of going with her that night, partly for support , but also as a sign of respect for the bravery of a fellow cancer patient, a short-term survivor but a survivor nonetheless. Dianne told me to stay home that night and I’m sorry to say that I am glad I did. Apparently, the family had chosen to have an open casket and the poor woman… well… she looked like she had died of cancer. It was an honorable thing for the family to do but it was harder for Dianne to see her that way because it vividly displayed the physical tole that cancer can have. And I’m sure that, in her mind’s eye, she could see me at some future date.

I’m glad I wasn’t there, and I’m sorry to say that. While I’m doing pretty well with my own situation, I think it would have brought back a lot of feelings that I have managed to get past. It might have scared me. As strong as I am, there is always fear and I don’t want to die before my time.

Rest in peace, Gail.

Posted by Doug

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So Henry is Doug. You have seen several posts under the name “Henry” (which is my middle name) talking about a recurrence of my cancer and my treatment with salvage radiation therapy. I haven’t been posting as much as I would have liked because I was focused on finishing my treatment and also on updating my soon-to-be-published book. Recurrence can add a whole new dimension to the cancer journey, to say the least.

What is most telling, though, is that I felt the need to mask my identity. I am a professional with a job, a family to support and responsibilities. Coping with cancer on top of all of this is hard enough, but I was frankly worried about how a recurrence could impact my career now and in the future. It is unfortunately true that many people, upon hearing that you have cancer, automatically think of you as sick and dying. Yes, it can impact your work while you are being treated and while you are dealing with the emotional shock of a diagnosis but, for the vast majority of us, we can very quickly get back to work. We may have to do it part-time for awhile, particularly if our jobs are physical, but we can still work.

The cancer survivors that I know are some of the strongest people I have ever met. If you can handle a major life crisis like cancer and survive, I would argue that you can handle just about anything. That’s certainly how I feel about myself and how I think about anyone with cancer. I wish everyone thought that.

In my case, both with my initial diagnosis and also with my recent recurrence, I have been pleasantly surprised at the response. Telling people at work hasn’t hurt me at all and I am infinitely thankful for the support I have received. I wish everyone was so understanding.

I am a survivor and I am strong.

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I got a new puppy yesterday! It has brought an immeasurable amount of joy into our house. We have always had one or two dogs who have truly been part of the family. This puppy makes two again, so we have our hands full.

We got our older dog about three and a half years ago. At the time, about a year after my diagnosis and treatment, I felt that I needed a “therapy dog”. The idea was that a dog would give me something to focus on that was totally stress free.  And it worked!  Since my cancer, I have been working hard to live life to the fullest and, while it is a journey, I am making progress. But it does takes work and the stresses of day-to-day living, my career, and the always-there fear of recurrence can take their toll. Often, down-time is hard to find, especially for Type A personalities who always have to be doing something (like blogging). It’s a well-known phenomenon that pets have a calming effect on their owners so that alone is a good thing for stressed-out cancer survivors, but the other thing is that pets (if you love them) require a lot of attention and that takes your attention away from everything else.  Taking them for walks, feeding them, grooming them or just playing with them allows you to focus on nothing but them.  No matter what I’m doing, if it’s with a dog, I’m not thinking about work or cancer, or anything else.  I just feel good.  And if I’m feeling down, cuddling with my dog makes everything seem wonderful.

When I die, I want to come back as a dog in a loving home.

Posted by Doug (dedicated to Maggie)

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I’m just about finished my “salvage” radiation treatment for a recurrence of prostate cancer, 5 years after my initial diagnosis and treatment for surgery. I’ve had 32 treatments and I’m getting really, really tired of the whole thing. I lay on the table watching the machine go around me and hear if firing off 60 times from different angles and I wonder, “What the hell am I doing here?” And I have to confess that I keep asking, “Why me?” I’ve asked myself that many times over these past 5 years but it seems less fair this time around. It was bad enough to get cancer, but to have it come back and possibly stay is worse.

I think asking, “Why me?” is normal and I know there is really no answer to that question, but it’s there. What makes it worse is that I have to deal with all the emotional stuff while I’m experiencing significant fatigue and all sorts of bowel and bladder problems from the treatments. Sometimes I feel like crying because it all seems too much, especially when I’m trying to concentrate on doing something else.

Maybe I’m just feeling sorry for myself.

But who ever said that life is fair?

Posted by Doug

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This is an other wonderful book that we highly recommend. Described as “A Practical Guide to Help you Through the First Few Weeks”, it is a book that should be given to everyone the day they are diagnosed. It is written in an easy-to-read, highly informative manner to help you cope with the reeling sensation that almost everybody experiences after a diagnosis of cancer.

Written by a medical oncologist, it explains why those feelings of dread and terror are so common, despite the fact that over fifty per cent of all people with a newly diagnosed cancer will be cured. This book will help you understand the basic facts about the two hundred (or more) diseases that make up ‘the cancers’ and will give you a road-map so that you can ask the right questions of your medical team and understand the answers. It will give you a clear and accessible guide to the unfamiliar and daunting territories of diagnosis, staging, treatment and prognosis (among other things).

If explains what the future holds in a straightforward six-step guide. It then goes on to discuss the methods of treatment (surgery, radiotherapy, chemotherapy and biological therapy) and then other major issues such as the effect of the mind and attitude, the popularity of complementary remedies and other subjects.

Dr Robert Buckman is a medical oncologist at the Princess Margaret Hospital, a Consultant in Education and Communication and a professor in the University of Toronto. He appears on television and radio discussing aspects of health, particularly cancer treatments.

One of the really nice things about Dr. Buckman and this book is that a portion of the proceeds from the book goes directly to cancer research!

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This past holiday season was, as always, a great time to get together with friends. Being diagnosed with cancer, and experiencing how different people react, causes you to really think about who your real friends are, what you need to get from a friendship, and how you want to be as a friend. Some of the recent comments on this site have dealt with friends who have deserted and the terrible feelings of loss this brings at a time when we are most vulnerable.

Having cancer convinced me to turn my back on “toxic personalities”, people who sucked my energy without giving anything back. But I was also surprised by how some people, who I thought were really close, seemed to distance themselves from me. Equally surprising was how some, more casual friends really stepped up and showed me an incredible amount of compassion. I decided then to focus on a smaller number of friends and to concentrate on being a good friend to them. So while I love being with people, I will always choose a small gathering at a friend’s house over a party. And you know what….. it works. I miss some of my old friendships but I am getting so much out of my current ones (including some long-standing ones) that I know I’ve made the right decision. Having said this, I still have lots of more casual friends and will always, always have room in my life for new friends.

To all my friends, past and present, I say thank you for being a part of my life. To all of the new people I am meeting, including some very special friends that I have met through this blog, I say thank you for coming into my life.

Posted by Doug

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