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Last March my mother was killed (along with another innocent bystander) in a bizarre & tragic roadside accident. Our family has been having a hard time dealing with this over the past 6 months obviously, in particular my father - who now lives alone. My sister & I and his friends are there for him, but it’s just not the same for him as you can imagine. And then the unthinkable happened…

My dad was diagnosed with prostate cancer.

I have stopped trying to make sense of why so many terrible things have happened to our family in the past year, because it just leads to anger & frustration. The only thing I can do now focus on the positive of the situation at hand; “at least it’s not lung cancer or a brain tumor!”. And even though most people say “well it is one of the most curable forms of cancer” it’s still hard for me not to be pessimistic the way things have been going.

His urologist says it is 90% likely that removal of the gland will result in a cure and he will live another 30 years. I hope he’s right. On the bright my dad is in otherwise great health and great physical shape which should bode well for his recovery.

His surgery date is October 25th @ 8am. I’ll be sure to write again post-surgery to share how everyone is doing.
Posted by David

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……….This is our first guest post. It’s an older post from Amanda, whose own blog (see link below) inspired the creation of this blog.

Just when i thought i was wizened and hardened and impervious to all shocks, comes a phone call that just about brought me to my knees.

12:15 am…hubby is lying peacefully in bed, oblivious to the world, and i’m doing my usual late-night web surfing. at that late hour, the ringing of his cell phone was definitely enough to snap me out of complacency. i got up off of my duff and looked at the caller i.d….”unknown.” ok, probably just a wrong number, a drunk dial, or both.

as soon as i set the phone back down it rang again. i opened the phone, fully ready to let the poor person on the other end HAVE IT. when the unthinkable words come out of the receiver…

“hello?”

“yes, this is a nurse from kaiser…is [hubby] there?”

“well, no, he’s asleep, it IS a quarter past twelve here.” (we have recently been getting calls from the billing department of kaiser hawaii, and i thought that maybe it was someone who wasn’t aware of the time difference.)

“this is his wife,” i continued, “can i help you?”

and then the nurse spoke those words that have plagued my nightmares ever since the bone marrow transplant. “no, i need to speak with mr. shaffer, it’s an emergency situation.”

all of my “how-dare-you-call-us-this-late-at-night” bravado disappeared like a popped balloon. deflated, i took the phone back to the bedroom and fought the old feelings of panic and dread.

“how bad is it?” i whined.

“ma’am, i really can’t discuss this with you unless i have his permission…you are aware of HIPPA, aren’t you?”

(at this point i became convinced that this nurse is the biggest bitch this side of the atlantic.) woke hubby up and told him “oh-my-god-it’s-a-nurse-from-kaiser-and-she-says-it’s-an-emergency-and-she-won’t-tell-me-
what’s-wrong-i-don’t-know-why-we’ve-signed-so-many-fucking-release-forms–”
hubby snatched the phone, and after a whole lot of sleepy “yeahs,” “nos,” and “i don’t knows,” he snapped the phone shut and gave me the biggest eye roll EVER.

“my red cell counts were a little low, and the nurse called before she looked at my medical history. no worries, babe.”

that’s it?!? his red cell counts a little low?!? i know that many people would expect me to be outraged at the nurse who saw fit to call about a medical condition before she got the context…

…but THANK GOD that’s all she had to call us about. THANK GOD it is not back. THANK GOD he is still OK.

Posted by Amanda (originally posted on http://cancertalk.blogspot.com)

We are sad to say that Amanda lost her husband, Eric, to leukemia last year.  Our hearts go out to her. (Doug)

- See Amanda’s new blog at http://the-cat-lady.com

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The day, the hour, the minute you are diagnosed with cancer is the beginning of a long, arduous and often painful journey for you and those who are close to you. Regardless of the physical type of cancer you have been afflicted with, you now have to deal with an emotional disease, unlike anything you’ve had to face before. You’re body is trying to kill you! How’s that for a trip? What does that do to your sense of immortality? What’s really important now? These are all huge issues that will affect you in profound ways, but we all seem to be poorly prepared to deal with them. And not just us, but also the doctors whose job it is to diagnose us and then drop the bomb. What do we do when we are blindsided like this?

For me (and I suspect for most), the initial diagnosis was a blur. I certainly wasn’t expecting it (I was told that the lump on my prostate was “probably nothing”), but I definitely wasn’t in my normal analytical mode. My appointment was first thing in the morning after a long weekend and, while I know I ruined the doctor’s day, it sure started mine off with a bang. I was in a suit on my way to a meeting with clients. I was expecting to be told that it was nothing, so this hit me like a lightening bolt. The doctor read me off a bunch of facts and laid out several options to consider and then sent me on my way. I stopped by the house to tell my wife and then left her to go to my meeting. I had a bomb dropped on me and then I dropped one on her and left! I didn’t realize the significance of that until much later. Bless her for not reaming me out, because I deserved it. She had just been diagnosed with the same emotional disease as I, and I went off worrying about myself! Does that make me a selfish boor or is that “normal”?

For the rest of the week, we both dealt with the diagnosis in different ways. I told no one else and I completely avoided focusing on it. It was there, but it was like a dark cloud hanging over me that I refused to really acknowledge. Denial? Shock? Normally, I would be all over the Internet and in the bookstore researching everything I could find, but I didn’t even hit a website until the weekend. Meanwhile, my dear wife was buying books, phoning support groups, contacting doctors, all on my behalf. She was looking for help for me, not even thinking that she may need help too.

So I ask you – how could I have handled this better? Do you think you need some denial time to allow yourself to adjust to this new reality? Should I be chastised for treating my wife badly? Do I really need to feel guilty about this?

Let’s leave the doctors out of this for now (we’ll deal with that more specifically in a future blog). Let us know your thoughts. Tell us about your immediate post-diagnosis experience. Was it the same? Was it worse? What are your thoughts on how to handle the impact on our loved ones? If you are the spouse, child, lover, parent or friend of a cancer victim, what are your thoughts? What were your experiences?

Let’s talk.

Posted by Doug

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I personally was not diagnosed with cancer, but I am a victim of this horrible disease. Too many of my relatives, including my husband, sister, and sister-in law have been hit with cancer. As a small child, both of my grandfathers died from cancer. One had lung cancer that spread to his bones, the other had leukemia. At the time, I didn’t quite understand what “cancer” was or meant. Whenever my parents or anyone else spoke of “cancer” it was with hushed tones…why? I just knew I didn’t want it.

As the years passed, and cancer didn’t impact on my family or friends, life was good. Cancer didn’t seem quite as scary for a while.

Then, in the fall of 1996 my sister was diagnosed with what we thought was lung cancer. She called me to tell me something was off about her tests and further investigation was required. The biopsy she had showed that she had cancer and required the removal of part of her lung. She was pretty scared. We were all very hopeful, but then got the news that the cancer was actually melanoma that had metastasized. Our world was about to change in a very big way. My wonderful husband arranged for our family to move back to Toronto, where my sister lived, and rented the house next door to her. This enabled me to go back and forth with ease to help her and her family. You have to understand how I felt about her…she was really like a Mom to me…I couldn’t lose her…we were going to grow old together. In Sept of 1997 she lost her battle with cancer. Everything has changed now that she is gone. The impact of losing her affected many people. She was a truly loved and remarkable woman. She was the core that held our side of the family together and now that is gone. I miss her so much and not a day goes by that she isn’t in my thoughts. Cancer changes families. It’s like a hurricane that lands with mass destruction and takes away whatever it wants. This Sept is the 10th anniversary of her passing…it doesn’t feel that long. Life does go on. Her husband remarried. Her children married and now have their own children. She would have been a great grandmother. My sister lives on in all of our hearts.

Since then, my sister-in-law and my husband have been diagnosed with cancer. Thankfully, they are still with me and I never take for granted the time we have together. My fear in life is that if I should ever get cancer, will there be someone there to take care of me?

Posted by Dianne (guest post)

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When you are first diagnosed, it is extremely important to bring someone with you when attending appointments and clinic visits. You will receive a lot of information in these sessions and at times it may be overwhelming. Having someone with you can be very helpful… two heads are better than one! Have your partner/friend/loved one take notes for you so that you can be free to take in as much information as possible without worrying about documenting it at the same time. You will find having someone with you to be very emotionally supportive, in addition to the benefit of having someone to talk with during those never-ending wait times for appointments and tests. Moreover, in the process of information gathering, teamwork is very helpful. First, you and your partner can usually gather more information than either one alone. Second, you may want to divide your information-gathering activities in accordance with abilities and interests. Third, you are going to find that some of the information you receive will be very anxiety-provoking. Facing it together, in a mutually supportive way, will help you enormously to sustain a degree of calm and clarity.Who did you bring with you? Did it help? Or did you have to go it alone? I hope not. Tell us your story.

Let’s talk.

Posted by Andrew

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Pushing the edge reminds me of how I felt at the end of my long ordeal on chemotherapy. I had no hair, few white blood cells, very low iron stores and one less boob. I was at the edge of life. I don’t think that my body would have tolerated another bout of chemo. There had already been numerous treatment complications such as fevers with low blood counts and various infections that could have done me in.But a year later I had hair, lots of white blood cells and plenty of iron. My color returned to normal and I had my energy back full force. I was absolutely amazed at my body’s ability to recuperate from such harsh treatment.

Since my cancer diagnosis, I have taken up running. I’ve given up my couch potato lifestyle and joined those crazy runners/joggers that you see pounding the pavement in all kinds of weather. I’m in my runners 3-4 times each and every week.

I have rarely had the enthusiasm for anything “sport-like” so I am frankly surprised that I have been so persistent in this activity. I was a fat kid and pretty clumsy. But I have been pushing the edge of my abilities since I began 3 years ago.

It occurred to me today that I push myself to run longer and faster just so I can see what else this old body can amaze me with. Another part of me runs because it feels so good to do it. And if I’m really honest with myself, I bet I’m really trying to run away from the demon that lives inside me that is called recurrence.

How do you try to push the edge? What are you running away from?

Let’s talk.

Posted by Ruth

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I strongly encourage you to start a treatment diary as soon as you are diagnosed. It’s a good idea to start the diary with your personal medical history such as previous surgeries, medications you are currently taking, any previous or current illness, and so on. Follow this by detailing the times and dates of the many tests and procedures that inevitably accompany a cancer diagnosis. It’s also very important to document any disease symptoms and treatment related side-effects so you can discuss them with your physician and other caregivers and don’t forget to include important contact numbers and so on. If you keep this up-to-date (which may be hard with everything that is going on), it will become an extremely valuable companion for you. Bring it to all of your clinic appointments and don’t be afraid to ask for a copy of your test results so that you can append them to your diary. The website of the the Abramson Cancer Center has a great resource guide called OncoPilot that has list of questions as well as some handy forms to keep track of contacts, visits, etc. Check it out.

Did you keep a diary? Do you still keep it up to date? Did it help? Did you share it with anyone? Do you look back on it often?

Let’s talk.

Posted by Andrew

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The length of time people wait between diagnosis and the start of treatment can vary. Regardless of how long it is, you experience a horrific period of time where you know that something inside is killing you and the sooner you get it taken care of the better (assuming that you have that option). I had to wait about 2 months for the surgery that would cut this monster out of me and save my life. They were the darkest days of my life, made worse by the fact that I didn’t have a guaranteed surgery date and there was talk of further surgery cutbacks.

I went to work, I cut the grass, and I took out the garbage - all the things that show life goes on, but I lost all interest in current events. I hugged my wife a lot, but I didn’t smile much and rarely laughed. I think I cried once. All I could think about was the cancer and all I could hold on to was the hope that I would get a surgery date soon.

I finally got professional help from a wonderful psychologist and a kind doctor who carved out an hour for me every Friday just to talk. And I spent hours with my dear wife. Sometimes we talked, but sometimes just being together was enough. I only had a few friends to talk with because most people just don’t understand and many don’t really want to talk about it. It was a tenuous time and I don’t know what would have happened to me if my surgery had been delayed.

Tell us about your experience and how you coped. What was the impact on your loved ones? What did they think?

Let’s talk.

Posted by Doug

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August 16th is a milestone for me. It marks my birthday, which is an important date for everyone, but I don’t really consider it a milestone for that reason. It was 7 years ago on that date that I had the last of a series of 33 radiation treatments to my right chest wall. As my oncologist carefully explained to me towards the end of those treatments, for my kind of cancer, I will never hear the words, “You’re cured”. The risk of my cancer returning remains for the rest of my life. Granted, the longer I am cancer-free, the lower my risk, but the risk will always be there.

So every year as I approach my birthday, I get increasingly anxious. I get grumpy, don’t sleep well and become withdrawn. Recently, I had a car accident (not serious, thankfully) because I was so self-absorbed. But doesn’t every birthday mark the great life that I have and the amazing fact that I’m still alive? Shouldn’t I be grateful and ecstatic every year?

I have other milestones, such as my cancer diagnosis date and the time for my next annual check-up, that dredge up similar feelings. What are your milestones, how do you feel around that time and what are your coping strategies?

Let’s talk.

Posted by Ruth

1 Comment »

The diagnosis of cancer is emotionally overwhelming. For many people, when they hear the doctor say the words “…you have cancer”, they can’t believe “it” is happening to them. Many of my patients stated that the shock of diagnosis initially caused them to emotionally shut down and that they began to function on a sort of “autopilot”. They explained that, at first, they felt nothing, as if they could hear the words but not “feel” them. After a relatively short period of time, a few days or so of ‘processing’ their diagnosis, they described feeling a myriad of emotions including sadness, helplessness, anxiety, anger, stress, and (of course) fear. These patients explained that as they processed their diagnosis, it made them feel more and more like things were ‘out of their control’. One patient in particular described the experience as follows: “It is the ‘unknown’ that surrounds cancer that causes the fear and distress… what does the diagnosis mean, and how will it affect me, my family, our future?”I have found that, at this point, it is important for patients to regain a sense of control by challenging the unknown. The best way to do this is through accumulation of knowledge. It is vital, however, to understand two important things about information gathering. The first is that, regardless of the anxiety it may provoke, it is imperative to be well informed about all of the details of your cancer in order to avoid basic “unknowns”, the misinterpretations of which can lead to even greater feelings of fear and anxiety. Increasing your knowledge will lead to a greater sense of understanding, control, and confidence in your ability to adapt to and manage the diagnosis and treatment of the cancer. Secondly, it is important to develop an overall picture of what you need to know and to fill out that picture systematically so that you’re not provoking any more anxiety than is necessary. This can help you to assimilate an incredible amount of information, step by step, without experiencing the feeling of being lost in the ‘forest’.

Everyone has different needs regarding the amount of information they require. Remember, you are the expert of you. Work with your health care providers to help you determine what you need to know. Let them know what is important to you, so that they can guide you in collecting information.

Ask a lot of questions. There is no such thing as a dumb question. And always feel free to get second or third opinions.

Did you get all of the information you needed, when you needed it? Did you have some kind of process for collecting and maintaining it? Did you have any difficulty getting the answers you needed? Where did you get your information? Did you get too much information?

Let’s talk.

Posted by Andrew

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