talkingaboutcancer.com

Today is Fri. Feb. 27/09.   I am Doug’s wife.  He is and always will be the love of my life.  If you have been reading his blogs you will know him pretty well.  I finally got up enough courage to write a blog on his site today.  Today he is going down to the hospital to have his PSA checked again.   He hasn’t been writing much on his blog lately because he’s been feeling really sick from what we think is a reaction to the hormone injections he has been getting…for 7 months now.  For those of you who don’t know, he has advanced metastatic prostate cancer and has gone through surgery,  33 + 5 bouts of radiation, HIFU (hight intensity focused ultrasound), and is on morphine and several other drugs…his top drawer if full of them…each one needs another one to counteract its affect. 

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

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Seasons Greetings to all our loyal readers. When I was first diagnosed with cancer, a few months before the holiday season, I didn’t think that I wanted to celebrate Christmas.  I just didn’t feel like it as there didn’t seem to be anything to celebrate.  As we got closer to the time, my wife and I decided we needed to try to get some joy into our lives and we decorated and partied and celebrated and had a wonderful time.  We were so glad we did.

Since our news has taken a turn for the worse, we realize even more how important it is to celebrate any special occasion and to find as many excuses as possible to be with friends and family.  Having just completed our latest Christmas Eve and Christmas Day get togethers, we truly feel the gift of having our loved ones around us.  And while the knowledge of my cancer is always on our minds, we were able to concentrate on having fun and found the time and energy to laugh, something we don’t do enough of.

So I wish you all the best for the holiday season and wish you good health and happiness in the new year…. including lots of laughter!

Posted by Doug

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When someone you love has cancer 

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Cancer is such a complicated thing and so difficult to talk about, even with close friends and family.  I am continually amazed at the range of responses, types of questions, and reactions when the subject comes up.  Here are a few recent examples to give you an idea.

Sometimes there is a message in the silence.  Recently, my daughter moved from a basement apartment to a nice new condo.  It was one of those situations where the timing all went wrong and she didn’t get all the help that she would normally have.  So she and her roommate rented a truck and did it themselves, with Mom helping with the settling in after.  Not once did she ask me for help.  I would have in a heartbeat, but she didn’t ask and I know it is because she knew it would be hard on me (as I continue to struggle with pain and medication side effects).  Normally, she doesn’t talk much about my situation anyway, but in this case, her silence said it all.  It told me that she understands, and that she cares like the wonderful, grown-up young lady that she has become.  How great is that?

Here’s another one.  I had a long overdue call from one of my relatives the other day, a man not normally short on words.  Having had the experience of his own wife dying from cancer, he clearly understood the issues that I was facing.  When I told him that my main hope was that they would find a cure for my cancer while my treatments were slowing down its advance, he said, “Well we know there’s a fat chance of that.”  He said what he believed and that is just the way he is.  Thankfully I’m not sensitive enough to have taking it badly, but I venture to guess that my friend Lori Hope would not have included that one in her wonderful book, “Help Me Live: 20 Things People with Cancer Want You to Know, which we profiled earlier.  I think I just chuckled after I hung up the phone.

In a different vein, we had some good friends over for dinner the other night and one of my buddies started congratulating me on my “great news”.  At first, I didn’t know what he was talking about but then I realized he was referring to the fact that my PSA had gone undetectable as a result of my hormone therapy.  You see, I know that this is a temporary thing because this effect may only last for a few years (although it could last longer) but it became clear that he thought it might be something that would last permanently.  I found myself not knowing exactly what to say and, in explaining the reality to him, I was uncomfortable and felt that I was taking something away from his gregarious hopefulness and well intentioned best wishes.  I love him for his concern and thank him for his kind thoughts, but my point here is - if I was uncomfortable talking to him, how much more uncomfortable must it be for others to talk to me about it?

Complicated, isn’t it?

Posted by Doug

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I had another great chat with my friend and counselor, Andrew, yesterday and he gave me some good advice that I wanted to share with you all.

As I look ahead to what the future may bring for me, I worry enormously about the impact it will have on my wife and kids, particularly my dear wife who is my soul mate and who truly is the most important person in my life.  I know this is normal for two people who love each other as much as we do, but a critical or terminal illness significantly complicates any relationship.  I worry more about her and her future than I do about me.  I mean that.  I have this disease and it sucks, but I have to deal with it and I will deal with it.  But for Dianne, she is like an innocent victim and I can’t help but feel responsible in a big way for the impact it has on her.  So I am constantly worried about sharing with her how I feel and, in particular, of showing my emotions when she is feeling raw herself.  I just don’t want to upset her any more than she already is.  I don’t want to compound things.  But Andrew put it in perspective for me.

He said that I needed to talk when I have to and show my emotions when I’m feeling them, no matter how Dianne is feeling at the time.  Dianne has to experience her own fear and grief, and sharing that with me is an important part of coping.  But that goes both ways.  She needs to see and feel what I’m feeling so that we can both develop the strength to deal with whatever will come.  He suggested that it might, at times, spiral out of control a bit, but that was okay.  We would handle it and we would be stronger for it.

There have been many bumps and heartaches on this long journey and there are many more to come.  I am blessed that I don’t have to travel it alone.   And if I can do it openly and honestly, it will be better for both of us.

Thanks Andrew.  You have lifted a burden off both of us.  For anyone else out there in the same boat, don’t fear to share.

Posted by Doug

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I’ve written a number of posts about how important friends and family are when you are going through cancer treatments.  It’s the little things, sometimes, that mean the most.  Supporting someone with cancer is not all about talking and offering direct support, but sometimes just being a caring friend in other ways is enough.

The day I received my last CT Scan results is a case in point.  It was a no-bad-news report so we treated it as good news – great news, in fact – and after sharing that with our great friends next door, they spontaneously invited us out for dinner.  Their treat!  We were thrilled at their gesture and found it a great way to cap off the day.  We didn’t speak much about the tests or about my disease, but instead just enjoyed the company.  When they insisted on paying the bill, I didn’t object, because it was their way of doing something for us and turning it into a polite, socially correct argument would have taken something away from them.

On two other occasions, my best friend Steve, dropped by and made us dinner.  He loves to cook and, as much as he has trouble talking about my situation, he wants to be here for support and this is a great way of doing it.  Each time, he didn’t stay too long as he knew we were tired and stressed and he knew that a couple of hours and a good meal were enough.  I treasure this great friendship and know that he will always be there for me.

So, if someone you know our love has cancer, and if you can’t figure out how to provide support, think about this kind of gesture.  It doesn’ have to be a meal in or out, but just dropping by for a visit can mean the world to them.  And if they don’t think they are up to it, let them know that it’s okay to say no.  There will be lots of opportunities to show your love and support.  But don’t hesitate.  Just do it, as they say!

Posted by Doug 

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My dear wife and I were talking about this recently, in the context of my previous post.  I have a tendency, when people ask how I am, to say, “I’m fine,” even when I’m not.  It’s a natural response and one that becomes almost automatic.  Think about it….. when you meet someone on the street and say, “Hi.  How are you?”, you’d be taken aback if they said, “Actually, I’ve been pretty crappy,” and then proceeded to describe their illness or misfortune or whatever.  So we generally just go with the automatic, unconscious response.  That’s what I do, and I find myself doing that even with good friends and family.

The fact is, I haven’t been fine.  Bad test results and aggressive treatments have taken their toll on me, both physically and emotionally.  I want my friends and family to ask after me because it shows that they care and that I have their support.  So why to I say I’m fine when they ask.  It’s that automatic thing.  Or maybe I don’t want to burden them.  Or bore them.  Or bring them down.  Or maybe all of that.  But, as my wife pointed out, I can’t expect my loved ones to understand what I’m going through or to show their concern and compassion, if I tell them I’m fine.  Maybe they will think that I’m not that badly off.  Maybe they’ll wonder if I’ve been over exaggerating in the past.  Maybe they’ll think that I am fine now and that they don’t have to worry any more.  And, if they do that, I will likely wonder later why they don’t seem concerned anymore.  How can I expect them to support me when I’m not truthful?

The message here is that it is very important to be honest and open with your friends and family.  While you can tell your casual acquaintances that you’re fine, don’t minimize to those who love you.  When they ask you how you are doing, they really want to know.  And even if they are uncomfortable hearing the truth, they need to know.  You need them to know.

Open communication is so important when you are facing a crisis such as a cancer diagnosis.  It is a horrible disease that most of us are not familiar with and, unless you have experienced it yourself, you don’t know what to expect.  If a close friend of mine is not well, I want to know about it.  Only then can I be in a position to offer my concern and my help.  So if I’m not well, I should let my loved ones know.  They want to know, I want to know and, in fact, I need to know.

Thank you for caring.

Posted by Doug 

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There is lots to be said about how friends and family take the news of a cancer diagnosis or recurrence.  Lori Hope’s book (covered in a previous post) covers this topic nicely in terms of what cancer patients/survivors need to hear and what they don’t want to hear.  But what worries me most, is how the people close to you respond to the bad news.  While many rush to your side to support you, many shy away because they don’t know what to say or they are uncomfortable with the notion that you are sick or dying.  Even family members find it hard to speak to you, even though they should be there faster than anyone.  I understand this.  It’s not something we have a lot of experience with and I know it’s uncomfortable.  But, come on, this may be the most critical thing that has ever happened to someone, so it shouldn’t be simply avoided.

I’ve heard it said that, when you get cancer, you quickly learn who your real friends are and who really loves you.  I think there is a lot of truth in that, however, I am sure that there are friends/family who do love you but just can’t deal with it.  That’s about them, not the person with the cancer.

I say (and I mean this), if you really love someone, get over it!  Pick up the phone or knock on their door and say simply, “Hi.  I love you and I know this sucks, but I am here for you”.  You would want nothing less.  We are nothing without love and friendship.

Posted by Doug 

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My son left home around the time I was first diagnosed with cancer over five years ago.  He was more than ready to move out at that time and has since done quite well on his own, traveling across the country and generally enjoying life.  Like all prodigal children, we never hear from him enough, although he does keep in touch to let us know how he is doing and to check on the rest of the family.

Even with family members, it is hard to know how they cope with the knowledge of a cancer diagnosis for a loved one.  People don’t know what to say and, while they fear for you, they carry hope which is is often difficult to express.  Sometimes, the inability to talk about “it” compounds the situation because they don’t get to really understand what is happening.

My son is like that.  My cancer has been as much a burden on him as it has for the rest of my family.  But distance and discomfort have kept us from really talking about it.  I understand this and I accept it as part of the baggage that comes with cancer.  I know he cares and that is what is important.

Imagine my surprise when he showed up unannounced at my door!  He flew in from out west on a ticket that his friends had purchased for him, knowing how much he wanted to be with me to show his support.  It was the perfect week to visit, as I had several tests scheduled (a bone scan and MRI) and he was keen to accompany me even though it meant getting up way too early and sitting around by himself for several hours.

All of this meant the world to me.  I have never doubted his love or his caring.  My daughter (who lives nearby) has accompanied me many times and even joined us at the hospital this week, but my son has been unable to because he lives thousands of miles away.  Both of them have now had a taste of what it is like for me as I go from test to test and hospital to hospital.  A small taste, but at least something that provides an indication of what I am going through.

The lesson in this is to never discount your family or your close friends just because they don’t express their feelings to you.  Coping with cancer is difficult, but so is coping with a loved one’s diagnosis.  Know in your heart that they care and that they think of you often. Know that they are just as angry about it as you are.  And know that they will always be there for you.

What a wonderful gift this is!

Posted by Doug

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So many friends, relatives, work mates and loved ones are afflicted with cancer that it is hard to imagine that anyone over the age of twenty would not have had someone they know who survived or has died.  For those who have lost someone, there is a hole in our hearts and the memories we cherish.  There may also be sad memories of how the cancer ravaged their bodies and their minds in the late stages of their disease.

We hope that the departed are in some place better.  We are left with our memories and our wondering of what might have been.  And we are left more sensitive and more fearful to what cancer means and we can get much more personally familiar with it.  Not necessarily what we want.

People support us, lift our spirits and help to define our own lives to some extent.  The death of someone who you know can force you to question your own immortality, which can be good or bad depending on the individual.

But friends and loved ones who die can also inspire us and their memories can comfort us.  The memories of my father do that for me.

Who do you remember and do you handle it?

Let’s talk……..

Posted by Doug

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