For as long as I live…

When I was first diagnosed with stage 4 cancer in December 2013, my oncologist said the words that sent a shiver down my spine.

“Once you start chemotherapy, you will be on it for the rest of your life.”

All my life I had been terrified to getting cancer, as I was terrified that I would have to have chemotherapy.  In my eyes, people on chemotherapy were really sick.  They were hairless, and gaunt and grey around the eyes, and that was when they were able to leave their bed, or drag their head out of the toilet long enough to actually BE seen.  I don’t know how I formed those views, but they were terrifying, and I was pretty sure that was the end of life as I knew it.

As it turned out, it didn’t treat me as badly as I expected.  Sure I was tired, my mouth ulcerated, my joints cramped, my mouth twisted, my speech periodically like that of a stroke victim.  I couldn’t touch, eat or drink anything cold for a week or so post infusion, due to the platinum based chemo affecting the peripheral nerves.  The steroids used to make the first few days post infusion bearable meant that sleep was generally elusive, and the dreams when I did go to sleep could match any horror story from the pages of Stephen King.  Still, the anti-emetic drugs kept it bearable, and I didn’t lose my hair, and once I could finally crawl out of my cave a few days in, I was functional at first, then felt “normal” for a week, before I had to line up and start it all over again.

By cycle two, I was offered a possible lifeline, in the form of a liver resection, and all of a sudden chemo for life was possibly going to have an end date that didn’t co-inside closely with mine.  Then I knew for sure I could do it.  I even became grateful for it.  Every time I felt that rush of poison through my veins, and smelled the metallic smell that seeped from my pores, I was one step closer to being cured.

For a while it looked so very positive for me.  Three cycles and 50% reduction in tumours.  The liver resection booked.  A curve ball thrown in the form of a bowel obstruction, and a change in the order of surgery, but still, we were on track.  I managed several months of break from chemo infusions, and just took chemo tablets, and had a huge response from 25 cycles of radiation.  Then a massive surgery, and my bowel was clear!  The mets on my liver started growing again after such a big break, but going back on chemo to control them was again a finite business, only to get control again so that I could have that one final surgery that might give me my life back.  I’ll never forget the joy I felt when I was unhooked from the “last” infusion, in order to give my body a five week break before that operation.  I was so sure, SO sure that I would not return there again.

Tomorrow, I face my darkest fear.  A couple of weeks ago, after everything went so horrifically pear shaped, I heard my oncologist utter those terrible words again.  “This chemo is for as long as it works, as long as you can tolerate it, and as long as you want it”.  When the time comes that it doesn’t work, it can’t be tolerated, or I have been so diminished by it that I don’t want it anymore, well I will stop “chemo for life” and await the end of it.  This time there will be no reprieve, there is no lifeline on the horizon, and there is, of course, no hope of ever living another day devoid of fear.  And I grieve that, every bit as much as I have ever grieved a person, the absence of hope, the loss of joy, the innocence lost.

I’ve been off chemo for five months now, and we know that my mets are growing on my liver.  Besides the feeling of the slow march of the tumours into my ribcage, I feel really good.  And yet tomorrow, as they hook me up to the poison pump, I know I will never feel this good again.  We hope of course that the tumours will shrink and give me the luxury of some “time”, but in truth, I have been rendered more sickly by treatment than I have ever been by cancer.  This is my last, best day, but there is nothing to celebrate.

On Monday I went to have a portacath placed in my chest to make administering chemotherapy easier.  I knew beforehand that this might well be my emotional undoing, but in truth the unravelling was more spectacular than I could have ever imagined.  I had had a port placed a year ago, but it never really healed, and eventually became so infected that it required an emergency operation, with me in septic shock, to be removed.  When we discussed inserting another one, the oncologist said that if the time ever came that I needed chemo for life we would have another go at the port, but seeing as chemo was “finite”, we would go with a shorter term picc line.  I will never forget how I beamed, the rush of joy that I felt when he said “finite”.  So much hope. SO.MUCH.HOPE.

Before going to day radiology to have the port placed, I had to have bloods done in the chemo unit.  I used to stop and have a stress vomit at the same toilet every three weeks, on the way to the chair, and straight away the urge to do so was there again.  Everyone in their chairs that day looked sick as I didn’t feel and haunted as I did.  It had, for all the world, the air of the “half life” I have always feared.  A foot firmly in both camps, not fully alive any more.

The tears started, and I cried ALL DAY.  I walked from the chemo unit to the radiology department for my procedure with tears streaming down my face.  The receptionist at radiology couldn’t understand me when I tried to speak to her, and all the assorted people waiting for x-rays and tests stared at me with compassion.  Perhaps they thought someone had died, and in truth, I felt a little bit like I had.

I’ve always tried to be honest with you, to share my truths, the highs and the lows.  And so, I give you, in pictures, the way that Monday looked.

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Yep, it was a complete fucking write off.  I was battered, an emotional wreck, and felt like a horse had kicked me in the chest, where the conduit for “chemo for life” now resides.

But do you know what?  I do still have hope.  I do still have life.  I  do still feel joy in one form of another, and I am confident that I can do that for a while.  I woke up sadder, but I did wake up.  And that day, yesterday, well it looked like this:

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See what a difference 24 hours can make?  Out of the misery comes the clarity.  I can sink to the lowest I think I can feel, to the highs of fun with a dear friend, dinner at a fancy restaurant, a meeting with my favourite band, front row tickets to their concert.  There is still so much fun to be had, and I have to believe that even while being slowly and systematically poisoned, I can still have it.  After the port went in, I went and read some of my favourite Charles Bukowski poetry, as often, he seems to nail it for me.  The pain, and the torment that are all part of the rich tapestry of life.  Sometimes you have to go to the darkest place to appreciate the light.

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So, tomorrow I’m back in the chair.  And as my friend Emma, who is on the same shitty journey as me says, “remember, it’s chemo for life.  For LIFE”.  Strap yourselves in, it’s going to be a long ride :)

I want to finish with a smile, so here you go:

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5 Comments on “For as long as I live…

  1. I’m a complete stranger to you but I am on this journey with you and should your amazing writing talent stop for any reason, I will miss you in my every day life. I’m a complete stranger. So I can only begin to imagine how your words and your essence will live on endlessly in the days of those who have been close friends, part of your family, fellow cancer battlers and so on. No more words, but endless feelings from here.

  2. You experience is a few very large strides beyond any experience I yet know. You have been through so much brutal chemo and radio already. There is so much fear and longing for life in your writing.

    However, I decided a while back that if my 3b-in-remission ever turned into a 4, I would do every damned alternative thang possible as well as chemo.

    So do it all. Try. Give Gawler and juices, cannabis oil and bicarb, turmeric and custard apples and any other healthy thing a go.

    Good luck. Don’t give into the despair. And listen to good music.

    Your writing is amazing. You shine with life. You look stylish. I know how rugged that is. Keep it up, Jules.

    Some people do beat this.

  3. So glad you’re back writing – I’ve been checking a couple of times a day since your last post.
    Cate

  4. I love your writing. And as I struggle with my own demons, you are

  5. I just want to say You are bloody gorgeous !!!Your smile is contagious.
    I hope the chemo is nice to you again this time .
    Good luck Jules x

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