On the edge of the abyss

Ever since I found out that I can’t be cured, I have always been scared that when I have one of my episodes where i fall into  a really dark place, I won’t be able to crawl out of it.  That mindfulness will fail me, that the fear of the future will flood in so strongly that I won’t be able to find my way back to the present, which is the only safe place for me to live.

I’m falling….losing my hope.   Bad news never really felled me before, but I am struggling to get over yesterday. The chemo ward refused to give me my cancer markers, saying I had to get them from my oncologist, but I looked at them sneakily, and immediately freaked out, seeing that they both numbered in the 200’s, as they had when we did the baseline markers before I started chemo.  They got on the duty doctor to come and see me, and he said that there was no great cause for concern yet, that one marker was slight up, but the other was slightly down.   I know all the rational things.   That I have only had two cycles, that the bloods might take a while to take a hit, that I am having only a half dose of the most heavy hitting drug in the regime because it is getting too toxic for me at full strength.  But I’ve slugged those markers before, kicked them out of the park after each chemo session.  I am discouraged by this, and I know my oncologist will be also.  He has spoken before of the clinical picture starting to turn against me, that  the cancer appears more aggressive.  I have a scan next week, and that may be more telling, one way or another of how we go forward, but I feel my hope of being on maintenance chemo at any stage, on this regime of drugs, slipping away. I know markers can be unreliable, but mine have always been very true to what is going on with my cancer.

There has been an image that has haunted me since I was diagnosed, but after a few weeks I learned not to let it in.  It’s me, in hospice, as I want my family to always remember me alive in our home.  The girls go home for the day, and I know, I WILL know, that it’s the last time that I will ever see them.  I’ll say goodbye and kiss their sweet faces, and watch my children walk out the door forever.  I hope coma, or death comes very quickly after that…..mercy, please.

This horror movie has been rolling around in my head all night.  There has been the occasional intermission, where my mind plays previews of the staggering magnitude of what I, and they, will lose.  I might see one primary school graduation, and I might walk one into high school if I am very lucky, but the other three will look at the proud, and tearful faces of other peoples mums, and there will be an empty space where their mum should have been standing.  And there will ALWAYS be an empty space where their mum should have been standing.  At every sports match, when they kick a goal, or shoot a hoop, they will look for the proud face of their parents, and only find one of them.  When someone breaks their heart for the first time, I won’t be able to hold them and say it’s ok, I’ve been there too, I know you think you’ll never get over this, but you will, I did, and I ended up with my true love.  There will be no “mother of the bride”, there will be no grandmother.

And I think that makes me the saddest of all.  I always hoped that our relationship would be good enough that they would ask me to be in the room with them when they gave birth to their first child.  I wanted to hold my grandchildren in my arms, for sure, but what I wanted most of all was to watch their faces at the very moment that their life was transformed, that they realised that a heart could open wider, and feel more love than they ever thought was possible.  And I wanted the moment that they looked in my eyes, and they knew, they knew that they had done that for me.  Each and every one of them, they showed me true grace, they opened a heart that was closed from years of pain.  The transformative moments in me, with the birth of each child, are moments that I will never forget.  I felt every one of them happen, so profoundly.   The knowing that as I felt each one slip from my body, there was another massive piece of my heart that I would never be able to protect again….they made me RAW.  Naked.  Vulnerable.  Better.  You did that my darlings.

I think of Gaz.  There was a moment at the netball presentation last year when our daughter won the best and fairest.  She had won the year before, and we didn’t perhaps expect her to win again, as she told us that she didn’t think she had.  I was sitting in front watching and Gaz was over to the side having a beer with a mate.  When her name was called two things happened, first she searched in delight for our faces, and then we searched for each others.  That connection that Gaz and I have, we do that ALL THE TIME when it comes to the children, or to anything we delight in really.  We search for each others eyes, so we can share it.  We MADE them.  No other two people could have done it.  I think Gaz will find love again, and as much as the jealousy rips through me like giant shards of glass, I want someone else to love my children.  But there will come a time that Gaz won’t be able to find my face, and even when he is able to find someone elses, that connection won’t be there, as they didn’t make those children together, we did.  We’ll always have that, my beautiful man.  Love someone else, but don’t forget you were mine.  Don’t let them forget that they were mine.

A friend said to me that as soon as I let fear open it’s ugly jaws, it’s going to gobble all my fight.  And I know it to be true, it’s what I have feared all along.  And so I have to find a way out of this again.  I have to remember that I am a long way from out of options, even if this chemo is not working.  I don’t feel sick, I don’t have a lot of pain, I’m tired, but not out of enthusiasm for life.  This is the hardest hit I’ve taken, but I still think I’ve got the strength to rip fears sharp jaws apart, and crawl out again.  I have to.


24 thoughts on “On the edge of the abyss

  1. I want to be able to put ín ín to words just how much your words move me , how you speak right from the heart , I would like to say great things to bring you comfort, but nothing I can think of would be good enough. I’m sure you don’t realize how many people you are touching when you write . I walk to raise money for Peter Mac and reading your updates makes me even more positive about walking and raising money to find a cure. You put butterflies in my tummy and love in my heart with your writing . I cannot describe my feelings for your updates .. but your daughter’s will always remember what a fantastic mum you are and your still creating memories with them that no one can ever take from them . Lots of love to you xxxx


    • As always Jules I will carry your words with me today as I go about the “mundane” tasks of everyday life.
      You can never know how deeply your fight is resonating with me.
      You are in my thoughts and prayers. I know the hope and fight will return to you soon. Be kind to yourself xxxxx


  2. Oh, Jules. Where to from here? I think of you so often, your laughter and your pain. I’ve got nothing. Keep going, be with your girls and Gaz, and keep writing. Love ya, X!


  3. I mis-read a word there – I read that if fear opens its jaws it will gobble all of your fright, and I wonder if there’s something in that. You’ve faced up to so much, and the news now is cruel and horrible, but perhaps acknowledging the fear will allow it to be gobbled up.
    Beautiful writing about your beautiful family x


  4. Hi Jules, my name’s Julie, and I first encountered you through your blog on that horrible woman who lied about having cancer. Totally agreed with everything you said, by the way.

    My story is different to yours – my Breast cancer was discovered early, and I responded well to chemo. Last October at the 2 yr clear mark, I had my other Breast removed with bilateral reconstruction. I thought I was all finished, done & dusted, but I’ve been in hospital for the last 4 days due to an infection that developed under my new left breast, I’ve been running high temps consistently for 7 days prior to that (up to 39.8).. For the 1st time the other night, since I was diagnosed 2.5 yrs ago I totally lost it, absolute meltdown. A resident was trying to put a cannula in my arm (he was being an a**hole), at the fourth or fifth attempt I was screaming anytime he came near my arm with that cannula. As I saiid – total meltdown, he couldn’t wait to get out of my room, but hadn’t stay till got a cannula in

    The thing is, I think it’s ok to be afraid, and to grieve for all those things you listed, that you will miss. One thing that Cancer has taught me (and why does autocorrect always put in a capital”c”?) is that there will be good days, bad days and horrible days, but you find your centre and keep going – there is no choice. People say to me “you’re so brave” and I don’t think I am. I think I’m lucky, I was diagnosed early, and kept taking the next step.

    So, I wish you strength in the tough times ahead. And on your good days, make those memories with your family.



  5. Hi Jules, I too started reading your blog on that horrible woman who lied about having cancer.
    My son died 11 years ago from bowel cancer, he was 32 and only had 7 weeks from time of diagonise to death, he was married with 3 small children.

    I thank you for your blog, your insight and your strength.


  6. I came across your blog with its gorgeous name and horrible reason for being via the Facebook page of a mutual friend of ours, Alex. And having read many of your entries, I am now once again sitting here weeping at your terrifying situation and the blessed, beautiful clarity with which you can express it. You are a wonderful writer Jules. Truly magnificent. Your words are the key to you being there for your girls, and Gaz, even after you’ve gone. Write to them. Write them letters for the situations you have envisaged. Copy & paste your brilliant, heartfelt text which you wrote here- about the glorious helplessness in the face of childbirth and loving another human being so much you could burst.; about your love for and pride in Gaz and your achievements together. Your blessing for his future and your wish that he remembers you in your special ways. To the girls when each of them leave primary school, start High School, are having blue days, heartbreaks, exams, school dances, wedding days, babies. Write your love and your words in private letters for them alone to open on special days, so you will always be there at every milestone, to show them you could think ahead and put yourself in their shoes in their future lives. Your words are so incredible and cut through so much pain, they each deserve to have their own special cache of mummy/Jules letters to travel with them in days to come.
    What you have written is I think the deepest darkest fears that mothers (parents?) hold in their hearts- not being around to see your children grow up. And you are actually facing that. Every single day. With good grace, poignancy and courage that you probably didn’t know you had. Courage is not the absence of fear. It is having terrible fear and facing it anyway. Which is all you can do. Blessings and love to you, fellow Fairy-mother, and to your beautiful family. Jessica xo

    Liked by 1 person

  7. I’m incurable with stage 4 bowel cancer; I’m on chemo for life too; I have a six year old daughter. Your nightmare of saying goodbye to your children knowing you will never see them alive again – that’s the same nightmare I have; the one thing that floors me to gut wrenching tears. So I try my best not to even go there in my mind. So tough though. 90% of the time I’m emotionally fine – spend as much attention and focus on living and on my daughter and wonderful husband. But that 10% of my time when I look at my beautiful daughter and realise I will not see her grow into a teen, a young woman, that one day soon she will say “Bye mum, see you tomorrow!” and I will know that she won’t see me again, that her long black hair and her beautiful body retreating out the door will be my last look at her. I understand dear Jules.


  8. Jules, we are all with you, have been from the start, let our energy and love for you and your stunning family pick up up, if it helps at all, your girls have so many Aunty’s from your DS family , I know that it’s not the same as your love cause no one could replace that, but we will not forget them or Gaz, they have us forever. Imagine all of us giving you a massive hug right now. As always your words and how you explain your feeling is so loving and true


  9. I’m just starting my cancer journey .
    You are so beautifully eloquent , your words touch my heart .
    So much love to you x


  10. Absolutely gut wrenching
    reading your blog today as per usual just made me shed tears for you for your husband and your beautiful girls.


  11. Did you know that amongst the many reasons for a raised CEA level is gastritis? I thought one of your blogs mentioned this condition? Perhaps that’s why the doc wasn’t too concerned?


    • Thanks Gracie. I have never had gastritis to the best of my knowledge, however a UK bowel cancer forum that I use has confirmed what the doctor did say…that a temporary spike when starting back on chemo is pretty common before you start to see any drop. So, the scan will be telling…having it next Monday. Thanks so much.


  12. Hi Jules, you put my feelings into words so perfectly. Stage 4 breast here. Two delightful kids, the reason I am still here. A husband I would have left last year but now I don’t have so many options. Haven’t once seen him upset about this. Friends tell me I’m “brave” and “inspiring”. I’m not, I’m just so scared. Just finished 8 rounds of chemo. Never thought I was vain but I’m too embarrassed to leave the house. I have no eyebrows, not much hair. I’ve lost so much weight I don’t even have much in the way of breasts anymore, or bum. So much edema in my arms and legs, they are huge and it is hard to make my clothes fit this weird shape I am now. I’m frail and I think I broke my foot on the weekend. I’m feeling so sorry for myself. Trying to absorb some of your attitude. I have scans next Monday too. Let all our news be good.
    Cate xx


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