Show up post treatment!

Here’s a video that was made by rethink breast cancer featuring Laura and I.

I wrote a bit about how to show up post treatment:

The ugly truth: Cancer = Loss

No matter how much pink you dress it up in, healing from cancer is a painful process. Side effects from treatment have both a physical and emotional impact. Post treatment, Laura appeared well, but underneath she was struggling with fatigue, pain, memory loss, lymphedema, chemically-induced menopause and the knowledge that her life is shortened by her illness. This is an ugly truth that’s generally avoided. People tend to dislike talking about grief and loss. They avoid it in their own lives and avoided it with us.

What to do?

Check your assumptions

Cancer changes people. What someone could or would do before they went through treatment might not be the same after. Everything mentioned above has an impact. Give people time to heal. Let them set an agenda for themselves. Frequently people will try to get back to how they were pre-treatment. If you see them stumbling, find ways to help lighten their load.

Read the rest here:

 

What have I become? Caregiver burnout

What have I become?
My sweetest friend
Everyone I know
Goes away in the end
You could have it all
My empire of dirt
I will let you down
I will make you hurt

Trent Reznor – Hurt

Everyone’s cancer journey is different. Every caregiver and partner reacts differently. When Laura was diagnosed, I was overwhelmed by fear and a desire to save her. I went into fight mode. Even writing this blog brings back feelings of overwhelm. This is a story of my experience of caregiver burnout.

Now with 100% more cancer!

Now with 100% more cancer!

Heroic vs reluctant caregivers

I started as a heroic caregiver. As time wore on and I neglected myself, I burnt out, closed off and became more a reluctant caregiver. This had a huge impact on how I looked for support. As a heroic caregiver, I wasn’t only looking after Laura. I was seeking support for myself. People suggested that I ‘look into’ Wellspring and Gilda’s Club.

Looked into wellspring and found stuff like this:

Drumming is an expressive technique that uses percussion and rhythm exercises to express emotions, manage stress and improve a sense of emotional and physical well-being. No prior drumming experience is necessary.

Neat. Drumming. However: First obvious complaints: Signing up is a pain in the ass. More appointments during the caregiving crisis = more pressure / little relief. Appointments during business hours at a cancer support centre = more time in cancer world, less time in world I wanted to create for myself.

I was overwhelmed by cancer. My whole life had become cancer. In the few minutes I had to look after myself THE LAST THING I WANTED WAS TO BE AROUND A BUNCH OF OLD PEOPLE WITH CANCER.

Yeah. I said old people.

These aren’t the droids we’re looking for

Initially I went with Laura to every appointment. It was extremely rare to see someone our age in the waiting room. We were met with looks of pity by the other clientele. It sucks beyond words to be in the prime of life and pitied by people receiving their old age pensions. So how did I know that the drumming group would be full of old people? Check out the image that came with the drumming workshop:

Old ladies drumming.

All women. Many look like my mom, or her friends. 55+? Not my crowd. I love my mom. And that’s not the support I was looking for.

The next suggestion? Check out Gilda’s Club. Both Laura and I have emailed them several times through the years. I’m still waiting for a reply. I was told that they are like people ‘of a certain generation’ who prefer the phone.

Contact Gilda's Club today!

Contact Gilda’s Club today!

 From hero to zero – the price of caregiver burnout

A year post diagnosis I was ‘done’ with cancer. Fed up. Tired. Cancer had eaten too much of my time. Too much of my energy. Too much of my life. Without support during my ‘heroic’ phase, I burnt out. At that time Laura learned about Couplelinks

Welcome to Couplelinks – a professionally facilitated, online workshop for couples affected by breast cancer. This project is currently only available as a research study to individuals living in Canada.

Tired of it all, I resisted. She resented. An opportunity was lost. Since then I’ve uncovered lots of helpful websites and places that recognize how important it is for a caregiver / partner to look after themselves.

What would have helped

What I found were front line cancer workers with vague ideas of the supports that existed for caregivers. They were busy. In their world, I was an afterthought. What I needed was a professional who could help me navigate the cancer world and discover the services that could really help.

In the next post, I’ll write about a whole bunch of great online resources I’ve discovered through Willow. They are showing incredible leadership in caregiver support. As well, there are lots of fantastic resources for young adults living with cancer. I’ll explore those too.

I welcome your comments below.  And remember, sharing is caring!

cancercamehome | Getting on with family life while getting better

This is a reblog of Laura’s latest blog post:

The magnolias

announced themselves too early.

Frost has browned their buds.

It’s the beginning of April.  Another spring, and one I feel blessed to see.  It was so warm in March here Luella and Ellis played in their bathing suits in the driveway and Jim prematurely put the winter coats and boots away.  A week later I was digging them out from the basement.  The ups and downs of the mercury remind me of my own post-treatment highs and lows.

A year ago I was in the midst of chemotherapy, literally fighting for my life, being killed by drugs so I could hopefully live again.  Added to the physical fight was the knowledge that only 30% of women with my diagnosis live five years and that consensus in oncology is that metastatic breast cancer is terminal.  And, miraculously, here I am a year later under close and regular scrutiny, disease free.  Better.

A lot of the women I’ve been speaking to about the early post-treatment stage of survivorship talk about similar experiences.  Many describe how well-meaning people expect them to be the same as they used to be, yet how they still experience fatigue, sometimes struggle with depression or cognitive changes like memory loss, and how they are unhappy with the changes in their bodies.  Recurrence is a fear that preoccupies many survivors’ minds, especially leading up to those follow up appointments.  As a survivor of metastatic disease, the numbers tell me that recurrence is a likelihood.  Above all the other discomforts and physical changes that remind me I had cancer, it is my fear of recurrence that makes it hard to feel better.

There are women with metastatic breast cancer who live ten, fifteen or even twenty years. “These long-term survivors are usually young, have excellent performance status, and have limited metastatic disease,” (Hortobagyi, 2002) but they represent only between 1% and 3% of cases.  My family and I have high hopes that I am among them.  As Jim and I joke, the odds are better than winning the lottery!  I have yet to speak with someone who has had a similar experience with limited distant metastasis and a complete response to chemotherapy, so at times I feel at a loss for what to think.

I was trying to articulate my perception of this phase of surviving at my Support Saturdays group (a Rethink Breast Cancer program).  I said something along the lines of, “I know I’m better, but I don’t feel better.”  One of the group’s leaders said to me, “What do you mean by better?”  And that’s just it.  To most people, you can’t get more “better” than NED – no evidence of disease.  And as someone diagnosed with metastasis, I feel almost ungrateful complaining about anything; I am so very lucky.  But I’m still recovering from the radical treatments that eradicated the cancer, and like my post-treatment peers, I complain about side-effects and changes brought on by the treatments and adjuvant therapies I still receive.  And then there’s the uncertainty.  I was explaining to my therapist the other day how it feels, “I’m like a kid in the playground who has had a hit to first base.  I’m safe right now, but there’s a long way to go before I’m home free, and there are a whole lot of obstacles in my way.”  I’m better, but I’m not the same. Because I’ve changed so much in such a short time, and I still feel plagued by uncertainty, I don’t feel like I’ve recovered.

This is not to say that a lot of things in my life haven’t actually improved.  I work way less, and play way more.  I don’t feel guilt the same was I used to. I care way less about what others think of me.  And nine times out of ten I choose my kids over work, instead of the reverse.  These things are better, most certainly.

So what I end up feeling is this odd blend of contradictory emotions that swing rapidly in and out of my heart.  When I am able to be in the moment, present with the people around me, I am better than I’ve been in years.  When I notice my ankle, swollen since chemo, feel the sting from the cracks in my fingertips that haven’t healed from the effects of the taxotere, when I can’t reach the cup on the second shelf of the cupboard because my right arm has lost mobility, or see my power port peeking above the neckline of my shirt, I am sometimes sad about what has happened.  And when I think too hard about the uncertainties of my future I am afraid.

Above all, surviving metastatic breast cancer to me means cultivating a way of living that allows me to have faith in my own wellness.  When I hear that word, better, it means a lot to me.  To feel better, I have to practice two lessons that one of my best teachers, David Hunt, taught me to do in 2002: let go and open up.  When I am able to let go of loss and fear and open up to replenishing hope, I feel better.  It is easy to say, and hard to do.  Right now, getting better is my job and my journey as much as it was during treatment.  I look forward to the day when I can look someone in the eye who asks me how I feel and say firmly and honestly, “I feel better.”

cancercamehome | Getting on with family life while getting better.

Caregiver support – putting caregivers first

Becoming a caregiver was not something I ever planned for. The kind of crisis caused by a cancer diagnosis in a family? Not something at the front of my mind as Laura and I made our wedding vows. With two small children I was counting on a couple of broken bones. Or perhaps a scary fever. I never imagined that with two kids under five, our family would be thrown into turmoil by breast cancer.

Inflight safety

It’s like that with flying too. Go to the airport. Get on an airplane. Land. Forget the sunscreen. Burn. Return home. Hooray! Nobody expects to need their seatbelt – let alone the life vest stowed under their seat. That’s why inflight safety videos are so laughable. Here’s a particularly  funny one from Southwest Airlines:

I’ve heard them so many times I don’t listen anymore. Recently, however, something struck me. There’s a profound wisdom in these videos. Check it out – this one is cued to a part that’s really important for caregivers to hear:

“Be sure to secure and adjust your own mask before helping others…”

Pretty simple right?  It makes sense. Once you look after yourself, then you are able to truly help others. When it comes to catastrophic events, selflessness can lead to martyrdom. This may seem heroic, but frequently just results in more people getting hurt.

Getting pounded? Get grounded

Out surfing one day, a friend and I got caught in a current. We were cycling from being pushed into some nasty rocks and heavily breaking waves. This was in a spot with a history of drownings no less. Exhausted, I managed to break the cycle. My buddy started shouting for help. He had a cramp and was panicking. Instead of plunging back into the washing machine he was trapped in, I took a couple of moments. I caught my breath and got my wits back.  I shouted instructions of how to beat the current. He got out okay. I intuitively realized that I had to take care of myself before I could help my buddy.

Caregiving through crisis

A cancer diagnosis isn’t a plane crash. But it sure felt like one for us. When Laura was sick, I put everything on hold. Her health became my central focus. Everything in my life – my career, my health, my feelings became secondary. I wanted to save Laura. I didn’t realize that I couldn’t cure her. My role was support. In order to do that well I had to ground myself first. I didn’t. Metaphorically speaking I didn’t “secure and adjust” my own mask. It worked at first. In the end it wasn’t sustainable. I imploded. The impacts of that implosion were terrible.

Caregivers’ needs are important too

I looked for support for myself. Caregiver support offered by most breast cancer organizations focuses on how caregivers can support people on their breast cancer journey. It makes sense. People with critical illness are their focus. Typically caregiver information would contain a small note: “Try to find time to take care of yourself.” These seemed tacked on with no indication of how caregivers might actually engage in self-care during a crisis. End result? I felt like an afterthought.

A new model of caregiver support is needed

Over the next several months I’ll use this blog to discuss caregiving. I’ll share personal reflections on my caregiving journey. And, more importantly, I’ll explore how caregivers can take care of themselves during and after a medical crisis.  This will all be peppered with some fun videos. Check back often and share this with those who might need it!

Cheers!

Jim