10 Unbelievable Years

Thank goodness for TimeHop.  I never thought I'd forget the anniversary day.  10 years ago, Callum was diagnosed with cancer.  That seems like so long ago, and like yesterday, all at the same time.  The photo above is Callum checking out the progress of the home we were building in Red Deer.  it was August 2005 and we had no idea what twists and turns our lives were about to take. 

            There were a lot of things to learn about cancer, treatment and how all of that would fit into our 
            lives.                     

            The first year was a real learning curve.  I will share what I wrote in an email update on the first 

           anniversary of  diagnosis.   It might seem weird, even dark, to pay attention to this kind of  

           anniversary.  Well, it is  the day my life changed forever.  

        

            From Sept. 30, 2006

I thought today would be a good day to give you an update on how Cal is doing. It was one year ago today that Callum was diagnosed with colorectal cancer. Many of you know both of us, and know that I am the sentimental, mushy one. So this email is mostly of my thoughts. Life goes on, and Callum is in Vancouver today on work related business, and I am home.

Wow, what a year! It brings to mind many clichés – “Time Flies”     “Take time to smell the roses”   “Live one day at a time”,    “Have faith”  “Treasure each day as it is your last”      “Be grateful for what you have”  and on they go. 

The saying that says the most to me right now is “Friends are angels who lift us to our feet when our wings have trouble remembering how to fly”.  

Thanks to each and every one of you for helping lift us to our feet. It was quite a year with a move to Red Deer, building a new house, meeting new friends and colleagues, along with walking 2 cancer journeys – one with our great-niece Lauren, who had a bone marrow transplant last September in order to cure leukemia, and shortly after that started our journey along the cancer path. Life is all about learning. 

I would to share some of what I have learned. 

I learned, again, that life isn’t fair.
I learned that 44 is too young to have cancer.
I already knew that 9 years old was too young to have cancer.
I learned that 9 year olds have great strength, and can teach the rest of us about perseverance and the benefits of a positive attitude.
I learned that a family can handle 2 cancer journeys at the same time.
I learned that Ronald McDonald House puts on a great Thanksgiving Dinner!
I learned that even with my husband’s great strength, he can be very vulnerable.
I learned that I, too, was vulnerable, and that as we were vulnerable together, we grew stronger.
I learned that the world is really quite small, and 1600 kilometers or so is not too far for family and friends to come and visit, cook, clean, and just be there for us.
I learned that we can sleep more than 12 people in our home.
I learned that with 17 or so people and 7 trucks, it is humanly possible to load up furniture from a storage unit and apartment, and have it unloaded in a house, have pizza and beer, all in 2 ½ hours.
I learned that even though the staff at the cancer unit saw 100’s of people each day, when they saw Callum, it was like he was the only one in the world that day.
I learned that you can feel alone in a room of 50 people.
I learned about chemo drugs, anti nausea medication and that club soda can help relieve mouth sores.
I learned that we are lucky to have health care plans so that we didn’t have the worry of paying bills.
I learned that we had challenges, but that there is always someone out there facing a bigger challenge, and we need to be thankful for what we have.
I learned that we have many friends. I learned that things never stay the same.
I learned that one day you may feel paralyzed, not able to move or breathe, but that the next day you find renewed strength.
I learned that sometimes, you just never know when you are going to cry.
I learned I would do anything to have been the one to be sick if it would spare Callum the pain.
I learned how long it takes to get from Red Deer to Tom Baker Cancer Clinic in Calgary. I learned that we are surrounded by a family full of love.
I learned that cancer doesn’t mean death. Most importantly,
I learned that your life can be touched with cancer, but cancer doesn’t ever have to become your life.

           My learning never stopped there.  Oh my, I learned so much - and a lot I wished I'd never had to 

           learn.  I have learned that my life continues, and I live my life to the fullest as much as possible.  At 

            this point, I can'g say my life is getting "better."  I still believe in my heart that my life would only be 

           "better" if Callum was here with me.  I am happy, I am doing what I love to do and I look forward to 

            each and every day.   I am grateful for the love of family and friends and the many opportunities I've 

           been given.   I have a new life now.  And it is great.  It isn't necessarily better. 

            Nearly 10 years after that shocking day that spun our lives into years of turmoil - and joy - I dropped 

           of my book at the Medicine Hat & District Health Foundation gift shop at the Medicine Hat 
          Regional  Hospital. 

           

 

            Wow, what an unbelievable 10 years. 

             May you find peace, hope, and joy in every day. 

             PS.

             You can find me at www.walkingthejourneytogetheralone.com 

              The book, Walking the Journey Together ... Alone, is on Amazon.ca and Amazon.com (and in 

             Amazon European and Australian distribution)

World Cancer Day

I wasn't sure what I would say about World Cancer Day.  To be honest, I think I wanted to deny that we even need to have a special day for cancer. How can anyone not know about cancer?  It will affect 1 in 2 people in their lifetime.  If they don't know about yet, it won't be long. This is a devastating disease that forever changes lives. There is debate on how healthy it is to have chemo, radiation and other cancer fighting drugs versus natural and clean eating versus "we create illness in our bodies and we can cure it."   Which is right? I don't know.  Can only one be right?  Which do I agree with?  All of them. Which do I disagree with?  All of them.

Cancer takes away so much. It takes away health, hopes and dreams. It takes away financial security. It takes away our social networks. It takes away red blood cells and white blood cells. In a "lucky" world, all of that comes to an end and other than follow up visits, cancer takes a back seat to life and may even become nothing but a distant memory.

For others, it takes away so much more. It takes away freedom. it takes away careers. It ends relationships. It steals your identity.  And rarely does this happen only to the person fighting for their life. All of these can be taken away from children, parents, wives, husbands, brothers, sisters, grandparents, aunts, uncles, nieces, nephews, friends and colleagues of the person fighting for their life. .

Cancer took away my husband, It took away my children's father. It took away my grandsons' grandfather. It took away my parents-in-law's son. Cancer took away a brother, brother-in-law, nephew and uncle. As I write this, many people are facing losing a person to cancer. No discrimination. The young and the old, the rich and the poor, female and male, infants and seniors.  It doesn't matter. The loss is inevitable.  From weeks to years, these families have been affected by a family member's cancer fight, with those effects nibbling at their bodies, taking pieces of their hearts, souls, and leaving them feeling bare and vulnerable, while they hide behind a wall of protection so no one can see what really is happening.

Cancer broke my heart. My heart will heal.  I don't believe it will ever be whole again. A piece of it died when Callum ran out of time in his fight with cancer.

I am grateful for the love and support of many family and friends who have helped me put my heart and life back together. I am not stuck in the depths of despair. I have a wonderful life, filled with laughter, joy, challenges, hope, dreams and more accomplishments than I thought possible. I will continue to celebrate those things and appreciate the many blessings I have in my life.

I am grateful for the many advances, medical, natural and alternative, in the prevention, diagnosis, treatment, survivorship and palliative areas of cancer and cancer treatment. We are better off today because of these advances.

 It is World Cancer Day.   I look forward to the "We Have Ended Cancer Day"

4 Top Tips to Get You Through the Doctor Visits

Caregiving comes in many shapes and forms.  There are family caregivers of aging parents, spouses and children with chronic illness or disease, and many care for someone with a disability.  The one thing we have in common is the shock that happened the day we found out we were suddenly thrust into the role of caregiver. 

In my book,   Walking the Journey Together ... Alone I talk about feeling like I had a suit of armour suddenly cover me to protect my brain, and my heart. The devastating news of my husband’s cancer diagnosis took hours to process.  I heard the words. I said them over and over in my mind. Yet, it was only when the armour loosened its grip that the seriousness of the situation would sink in.

I’ve heard professionals say that often the patient only hears about 30 % of what is said when first told they have cancer and at the next few appointments when discussing treatment options.  Your role as a caregiver is vitally important in helping your loved one, and you, get the most out of the doctor visits.  During the six years I cared for Callum I found a few things that really helped me become more effective and efficient at making the best use of our time with the doctor and nurse.

   1)  Research:  Spend some time finding out as much as possible about the illness/disease/disability of your loved one.  Be sure to use only credible websites. Sometimes you will learn about new drugs and treatments and can be ready to ask the doctor where they fit into the treatment plan of your loved one.  Be careful -  this can be a double edged sword.  Beware of spending too much time browsing the internet for things that don’t matter or aren’t true.  I found most doctors willing to discuss the research as long as they weren’t being second-guessed.

2 2)  Sometimes I would have questions that Callum didn’t think of, and some of them he wouldn’t initially approve.  What I found worked really well is when I made a list of my questions, and discussed them with Callum a day or two before the appointment. He didn’t like being caught by surprise in a doctor’s appointment when I’d ask questions he didn’t know I’d ask. What usually happened is that he ended up asking many of the questions on his own.

33) When we would have a list of questions that I think the nurse or doctor might need to review before we met, I would type them up, print them and give a copy to the nurse when we met with her before the doctor came into the exam room.  It would give them some time to check into things like test results, rescheduling chemotherapy so we could take a holiday, etc.

44)   Write down as much as you can about what the doctor says to your loved one. If they are talking to you because you are caring for a child, have someone else with you to take notes.  This is not a time to try multi-tasking.  More then once my nearly verbatim notes settled arguments between Callum and I.

There is a lot to process when you find out a loved one is seriously ill or disabled.  Your brain will protect you and it’s important to know that you might not fully hear or comprehend all that is said in a doctor appointment.  The best thing you can do is be prepared.  It will help your concentration and build a better relationship with the person for whom you are caring.  In the long run, it decreases your stress and might even save you some time.

Lorna M. Scott is the author of the best selling book, Walking the Journey Together…Alone.  Find more tips in the book Click here to order the book

The 3 R’s: Getting Back on Track

When you are faced with a rollercoaster ride of emotions it can be challenging to stay focused and balanced, in any area of your life. The demands of caregiving are not always predictable. You can think you’re headed one way, and in reality, you are only a blood clot or low immune system away from a sudden change of course.

When you spend your time preparing for what you do know is coming up, and planning your life around doctor appointments, medical tests and pharmacies, there is little time or energy left for the curve balls of caregiving.

I clearly remember standing in my kitchen, sipping a hot, fresh cup of coffee, looking forward to a restful and relaxing weekend.  The peace and calm of the moment was suddenly interrupted by the words “We need to go to the hospital.”  I turned and looked at Callum’s swollen, purple arm.  There was to be no rest or relaxation that weekend.  We spent over 6 hours in the emergency room and spent the rest of the weekend watching for signs of a pulmonary embolism or stroke.  No fun at all!

Your situation may not be as dire as this one I just described. It is nearly certain that you will have at least one episode that comes out of nowhere and can leave you not knowing what to do, where to go, or what help you need.  Your mind becomes a soupy fog and you know that if only you could think more clearly, you could get back on top of things.  You need the 3 R’s.

The 3 R’s can be done at any time you need them. You may first need to make sure your loved one has the care he/she needs. Take care of anything urgent before taking time out for the 3 R’s.  Most likely some adrenaline will kick in to help you get through the urgent or emergency situation.  It is after that you will really want to use the 3 R’s.  If the situation is not urgent, and you aren’t sure about the next steps, you can use the 3 R’s as a way to more clearly assess the situation and what to do next.

Relax:

 Take at least 3 deep breaths.  Breathe in through your nose to a count of 5, and out through your mouth to a count of 5. This is usually enough to slow down heart rate and rapid breathing. It’s fine if you need another 2 or 3 deep breaths.  By this time you should feel a bit calmer.

Re-energize:

Sit quietly.  If there is time, do something soothing, anything

that gives your body a chance to recover from the adrenaline rush:

-       a bubble bath

-       some light reading

-       sit, close your eyes on concentrate on your breathing

-       light a candle and stare at the flame

-       listen to music

-       take a 10 – 20 min nap

-       walk around the block or walk up and down the stairs in your house/hospital

-       enjoy a cup of tea, coffee or hot chocolate (no alcoholic beverages)

Refocus:

After you’ve had time to relax and re-energize, you are ready to refocus.  Take a good overview of the situation and see what you need to do next. If immediate action wasn’t necessary, review the situation as it is now, and see whether you need to call a doctor, or maybe home care.  If you have taken a trip to the emergency room, you will be better able to understand what the doctors and nurses tell you. 

Have a “tool kit” of things ready for the 3 R’s.  You might want to keep with you, or nearby, a book, mp3 player to listen to music, notepad and pen, healthy snacks and some single portions of your favourite tea/coffee/hot chocolate. You can be prepared for the unexpected event that turns your life around faster than you can blink an eye. 

Lorna M. Scott is the author of the best selling book Walking the Journey Together … Alone, Finding Peace, Hope, and Joy in the Middle of the Sh**.  Click here to order your copy.