The Club You Don’t Want To Join...Reflections on living with metastatic cancer

 

 Twice a month on Wednesday mornings, I make my way to a small but cozy room on the 5^th floor of the BC Cancer Agency to connect with a community of women like myself who form The Women’s Metastatic Cancer Support Group – a group we affectionately refer to ‘the club you don’t want to join’.

 

I’ve been a member of this ‘club’ for 4 ½ years now, along with others who have been members longer and others who were members for shorter periods of time.  We are young, we are middle-aged and we are older, we are married and single, some of us have young children, teenagers, adult children or grandchildren and some no children at all.  Sometimes we are well, sometimes sick, sometimes in treatment and sometimes not.  But all of us live in a world where cancer is a chronic disease, which is another way of saying we live in the shadow of dying.

 

My first encounter with cancer was May 1992.  A diagnosis of breast cancer led to a course of treatment including a lumpectomy, node dissection, chemo, radiation and tamoxifen.  I patiently waited for the requisite 5-year mark to pass and then emotionally promoted myself from ‘cancer victim’ to ‘cancer survivor’.  How wrong I was.  Thirteen (13) years later, almost to the day, I was diagnosed with metastatic breast cancer to my liver and diaphragm with no option for surgical intervention.  I was totally confused – nothing hurt, I’d been ‘rubber-stamped’ – I was a survivor, I didn’t look sick, I’d been cancer free for 13 years - what the hell were they talking about.

 

When I was re-diagnosed in 2005 my life turned upside down.  AGAIN I had to tell my family… but this time I also had to tell them it was terminal… or incurable which is a softer term many prefer to use – it doesn’t really matter – they mean the same thing.

 

On re-diagnosis I pressed my oncologist for a time frame – everything seemed so imminent – how fast did I have to do the living I wanted to do.  He told me 2-5 years while cautioning me about statistical averages.  Since then I’ve learned statistics are just that and, in my opinion are of no real value  – I’m doing much, much better than anybody expected and think if I’d paid too much attention to my ‘best before’ date my quality of life would not be near what it is.  Doctors simply don’t know how each individual will respond to treatment and without a doubt giving an ‘expiry date’ is not in any anyone’s best interest.  Since my re-diagnosis I’ve met many individuals who have outlived their statistical time frame – some by as much as 10 years.  More and more people will continue to live longer with all the new treatments, drugs and trials being developed – a group of people who don’t fall into the conventional categories of either active illness or survivorship.

 

Living with cancer is a unique world - an ongoing dance between emotional challenges and physical limitations.  Never a day goes by that I’m oblivious to the fact I have cancer – right from the moment I open my eyes in the morning, although I have to say some days it doesn’t occur to me for an hour or so and that I consider that a good day.  It goes way beyond tests and treatments, medications and medical appointments, support groups and statistics.  It’s in my head as much as in my body – perhaps even more so.    It’s a life occupied alternately with fear, confusion, anger, anxiety, sadness, side effects and fatigue but it’s also filled with joy and laughter and fun, happiness, family and friends and love.

 

The first eighteen months after re-diagnosis I struggled – not so much physically – getting used to meds and side effects was way easier than getting used to the fact I was going to die from cancer.  I put on my best game face for everyone in my world, I tried to protect them, I let them ignore the reality of my life, I didn’t show my grief, I didn’t worry them with details.  I didn’t talk to them on my bad days because we no longer spoke the same language.  I felt a huge responsibility to make things easier for everyone – to lessen the grief and the heartache.

 

But, as life always does, things settled down.  The fear of treatment and the prospect of death didn’t seem quite so imminent and so my life returned to this new “normal”.  This time of trying to live in the present and not in the future, to not worry about the next set of tests or to think about how my life will be in one year or two years or five years.  To keep putting one foot in front of the other and to be grateful for the time I have and use it wisely.

 

Mind you, the brain doesn’t always cooperate – fears crop up, questions surface, anger appears and confidence wanes.  Are the meds still working?  Why is my stomach so upset – has it moved to my abdomen?  Tests again – please let everything be stable.  I hate having cancer.  Is this the start of the end?  Do I really want to know?  Can I handle the pain that will come my way?  Questions that have no answers right now.

 

And while all this is going thru my head, I’m busy doing the day-to-day things of life – I clean, I cook, I hang out with family & friends, I go to support groups, I go for walks, I shop, I laugh, I talk about insignificant and trivial matters and watch TV.  On the surface my life appears in hand - if I look fine and do what I do then I must be healthy and the cancer must be in control.  But controlling my cancer isn’t the only issue – how do I get control of my life?  I live in two separate worlds – the cancer world and the non-cancer world.

 

To be able to sit in a room with other women who ‘get it’ is a lifeline during the really tough times as well as the okay times.  The Women’s Metastatic Cancer Support Group I attend is a resilient group of women, a diverse group who love to laugh, shop, eat, drink wine, travel, play with our children, walk our dogs, write poetry, go to the theatre – a sisterhood of individuals whose paths, under ordinary circumstances, would likely never have crossed.

 

But together we are a force to be reckoned with!!  We share a wealth of information in the art of living with cancer as an extreme sport.  We share our frustrations and anger along with our good news and our bad.  We compare notes on medications, doctors, managing side effects, upcoming trials and how best to manage our way through an often de-sensitized medical system.  We encourage each other when we’re feeling anxious or dismissed, sad or confused, sick or scared or when we’re just down in the dumps.   We speak the same language.

 

Our conversations cover a myriad of subjects, one being the frustration we feel with individuals – including those in the medical field - who just don’t get it.  We know people don’t intend to be thoughtless or insensitive however there are just some questions and/or comments that bewilder us:

 

BUT YOU LOOK SO GOOD!

Ø       There’s a common perception that people who have cancer look like they have cancer.   Please be aware that looking good has nothing to do with it – you should see me on a bad day.

 

THE ‘HOW ARE YOU DOING?’ LOOK.

Ø       It’s the frown in the middle of the forehead, the squinty eyes and the head tilted just ever so slightly look.  Rarely do we find someone who really wants to know.  Most people don’t want to talk about ‘IT’ – about cancer and death and dying – but it’s part of every metastatic patients world so be very, very careful if you’re going to ask with that kind of look on your face.  And by the way, sometimes we’re just fine.

 

WELL – WE COULD ALL GET HIT BY A BUS TOMORROW             

Ø       Please don’t patronize me – I’ve already been hit by my bus and I pray you won’t ever get hit by this one. Don’t minimize my situation.

 

OH COME ON, YOU CAN DO IT!

Ø       If I felt that I could I would.  Sometimes the emotional toll of cancer incapacitates me as well as the physical – please understand it has nothing to do with you.

 

DON'T TALK LIKE THAT. YOU’LL BE FINE.

Ø       There’s every likelihood that I won’t be fine – I’m in a very real situation.  If I want or need to talk about what life will be like when my cancer progresses or after I die, DO NOT under any circumstances give me that fake, terrified, cheerful smile.   Just tell me you’re not comfortable with the conversation – I understand.

 

WHEN YOU ASK ME HOW I’M DOING include my whole world.

Ø       Please remember that I am much more than my disease. Remember that we really did have things we used to talk about BEFORE cancer. Those things are still important to me.

 

PLEASE DON'T EDIT ME.

Ø       Yes I have a lot on my plate. But it’s not your job to withhold bad news from me. I’m an adult and I don't want to be left out of the loop. Don’t avoid subjects that you think might be too sensitive for me – let me make that decision – I need to know what’s going on – good, bad or indifferent my mind remains intact.  I don’t need to be protected from life.

 

We talk about our losses - metastatic cancer diminishes women in many, many ways that others can’t comprehend.  Certainly some of the losses are visible – our hair, our breasts, our beautiful skin, our basic body functions or our energy.  But the losses go much deeper than that – unseen losses at the very core of who we are.

 

Ø       We lose confidence in our bodies

Ø       We lose our independence

Ø       We lose our jobs

Ø       We often lose our individual identities – from motherhood to business executive

Ø       We lose feelings of sexuality and femininity

Ø       Young women lose their fertility

Ø       We lose our self-esteem

Ø       We often lose our financial independence or security

Ø       For some it is a loss of faith or a questioning of religious values

Ø       We lose relationships or the hope of having one again or the energy to pursue one

Ø       We can temporarily or permanently lose our memory

Ø       We lose parts of our bodies that can’t be seen

 

We wonder who the woman in the mirror is.  We know who we used to be but now we have to re-invent ourselves to live a life we never expected.  We lose the ability to live life without fear.  We know we will never be able to move past cancer so we have to work out how to live with it knowing that our lives can change in one short doctor’s appointment.

 

Our hearts break every day – for ourselves, our families, our friends and for each other.  We listen to each other’s fears, hopes and dreams and sometimes we have to grieve the loss of our friends – and we do this together as well.

 

My group is not just about cancer – it’s about our lives.  We’re not a therapy group – we’re a support group.  We talk about the possible and the unthinkable.  We come together to talk about our worlds without having to censor our thoughts or our tears, without having to sugar coat what we are thinking or feeling and we know that in our space we are understood and safe.  We find great comfort in being together with no pressure to be anything other than just how and who you are.

 

I pay tribute to and hold tender everyone one that has ever walked through our door and has had to join this ‘club’ you should never have to join.  I am forever grateful for all your thoughts, your courage, your generosity and compassion and your wisdom  – without all of you I’d have much less insight and resolve as I travel my path.