2. Embrace the Suck

Symptoms: mild soreness on right side under ribs, slight cough, ocular migraines

Treatment: none, in between drugs

Pain level = 0

Featured emotion: Gratitude

My ‘grief rage’ dump in the first 2 posts was cathartic.  Apparently, grief rage is a real thing, the bastard child of overwhelming sadness and unexpressed anger.  It’s ugly and it’s painful – for me to write, and for others to read. I’ve been gob-smacked by the positive response to the posts, from strangers and those closest to me.  So many people have agreed to stay with me as the story unfolds.  I know how easy it is to turn away, and I totally understand the impulse, but many of you did not turn away. It’s inspiring and humbling.

So many of you say that I’m brave, but it’s not the case.  The only time that I’m not cack-pants scared is when I’m singing, leading my community choir, or asleep.  At all other times, I feel the shadow on me.  It takes an enormous effort of will, and a huge dollop of determination, not to let this disease ruin whatever time I have left.   I try to hold it together for the people around me.  It’s better for me, and for them.

Even the act of writing this blog is a way of dealing with the fear.  Sending my words out into the world and hearing not an empty echo, but encouragement and support, makes the business of dying a little less lonely.

I wish I could say that it’s making me a better person, that I’m tapping into a new source of serenity and finding a higher plane of existence. But no. I’m still vain, I’m still selfish.  I’m still capable of breathtaking pettiness, like the other day in our local coffee shop.  I gave the poor barrista a terrible time, just because he sold the last almond croissant, my almond croissant, TO THE PERSON BEHIND ME.  I wanted to shout, ‘That might have been my last almond croissant ever!’ As one friend said, ‘I hope you’re not going to lounge on a velvet chaise dispensing wisdom.’  No chance.

I’ve chosen gratitude as the featured emotion this time because I’m the luckiest unlucky person that I know.  A friend says that, when you’re facing a really, really sucky situation, with no way out, the best thing to do is embrace the suck.  That’s what I’m trying to do here, because to continue railing won’t change the outcome, and it makes me feel worse.  Yes, I have a hideous disease, which is going to kill me in short order, after years of excruciating treatment.  On the other side of my cosmic balance sheet (a big thing for us Jews), I am constantly buoyed by a vast network of friends, family, fellow writers, and choir members, who celebrate and commiserate with me as required.  They hold my head above the waves of despair.  They lift me on their shoulders when I get a good test result.  They sit with me when things are bad, and send me brownies, and fresh figs from their gardens. They commit to looking after my welfare when I no longer can. They post pictures of animals doing silly things.  They sing with me.  In thousands of tiny ways, and a few seriously big ones, they give me a reason to keep going.

Chief among them is my husband.  Out of respect for his privacy, I’m not going to use his real name, just call him Superman or SM.  We’ve been together 18 years but only married 3 years ago, in the middle of chemo, on a cruise ship in the Caribbean.  I wore a very nice wig. He makes me laugh my ass off every day.  Every. Single. Day.  He has immense reserves of strength, which somehow manages to be powerful but not cold.  He has a Zen calmness and way of accepting things he cannot change, which I covet most among his many talents.  He has sat with me through every chemo session, let me squeeze his hand while they stuck me with needles, again and again, and froze my head.  He has changed dressings, emptied wound drains, gone out at all hours to find the only thing I fancied eating, held me when the news was bad, binged on cheesecake with me when it was good.  He works out his grief by trying harder to make my life better.  He takes on all my terror and sadness and adds it to his own. His face was there each time I woke up from surgery.  With his love, his compassion, his stoicism, his strong stomach, and his unending desire to be with me, despite all my scars and increasingly gruesome medical routine, he keeps me alive.  Every. Single. Day. When I ask him how he can bear all of this, he says says simply, ‘It’s the loving.’ The thought of leaving him is total, utter agony.

And then there’s the medical team, made up of every flavour of specialist, who listen to me and treat me as a person, not a disease; nurses who don’t allow death to become mundane, although they see it every day.  I have had the gold standard treatment. Even if it hasn’t worked, it means that I have no regrets.  The outcome for me is terrible, but everyone has done their absolute best to make it otherwise.

See what I mean about being lucky?

This is a strange moment in time, a surreal hiatus.  While waiting for the failed drug to wash out of my system, I’m going on a wonderful holiday with 15 members of my family.  I feel ridiculously well, with no more drug side effects, and tumours still too small to disrupt the function of vital organs.  It would be easy to believe that it’s all a terrible mistake.  But I saw the MRI images.  I saw my the look on my oncologist’s face.  This is real.  This is happening.

On the day after my return, I will start back on a chemo regime which I have had before.  It’s likely that I will never feel this well again, between now and when the disease  finally takes me.  That is a topic for my next post.

I’ve never been able to live in the moment, always planning ahead or looking back. This week is an amazing gift. For 7 days, it’s all about enjoying this time, without drugs or needles or scans or pain. It’s about feeling like a normal person. It’s about embracing the suck, and trying to absorb some of SM’s Zen acceptance.

And it’s about the loving.  Always the loving.


Read Part 3: Here We Go