When even your tireds get weary

I so thought that I would be a five year survivor.

I so thought that I would beat the odds.

I so thought that I would see oncology appointments again where the oncologist would say “Everything is shrinking really well Julia” (gosh it has been so long since I have heard those sweet words.)

I so thought he was going to be wrong about the 2 years optimistic prognosis.

I so thought that I would always been able to find a way to live well in the midst of all this promise of death.

Today has felt like the hardest day I have faced so far. I am losing HOPE so fast, with everything pointing to me being, at, well, the pointy end of my treatment, and the decline, slow and steady.

This mornings return to the chemo ward was me very much someone who was pretty over it. I’ve never felt confident this treatment is working. Blow after blow. Lung tumours with no shrinkage after 3 cycles of the new chemo. Knowing that my liver pushes just that little bit more into my ribcage. The little bit of light that I had on the horizon, even though the oncologist said that there was no great significance to it, was that in two cycles of chemo at 75% dosage due to my abnormal AST levels (the liver function most affected by chemo), my levels improved that much (a month ago they were only 36, which is one point above the higher level of normal) that at cycle 3 they were able to give me the 100% dose. That felt like such a victory, but after it, along comes a blood clot and a couple of weeks of terrible unrelenting pain. And a missed chemo cycle. And a new fucking picc line that went in yesterday the deliver a couple of cycles of chemo that is in such a fucking ridiculous position in a vein along the side of my arm that it just makes me want to rip the thing from my arm and scream “ENOUGH”. And this mornings final blow, AST levels at 60, which is the highest my AST levels have ever been in 23 months of battling cancer. This earned me another drop to 75% dose, and the loss of a little of what has kept me alive. I just can’t see it any more.

A beautiful friend from our bowel cancer group, Oriana, passed away yesterday from this dreaded disease. Despite Oriana also living in Melbourne, we had never got around to meeting. But when I say she was a friend, she WAS, despite us never having clapped eyes on each other in person. If you guys think I am doing well at maintaining a life and a degree of hope while facing this disease, well you would have loved this woman. She had it all over me in SPADES. She was diagnosed after me and her disease was always aggressive. But she NEVER gave up hope, never even seemed to waver. She researched new treatments, took care of herself holistically while still accepting all the mainstream treatments that were on offer to her. She took blow after blow, after blow, with so much courage. Always looking for the next thing, for the next bit of hope, for something that might give her longer with her beloved family. Just a couple of months ago the cancer appeared in her brain (a relatively uncommon spread from bowel cancer, but it does happen), and the tumours were removed as they were interfering with her speech etc. Just a few hours later she was posting from the ward, her head in a bandage, a smile on her face. She was SO incredible that even though we knew the options of any further treatment had pretty much run out for Oriana, it totally blindsided us all in the group when we found out that she had passed away. Because I think we almost thought she COULDN’T. It just doesn’t happen to someone.like.that. Except it does.

Today I have been crying for 6 hours. I started when I got the news about the AST levels (I didn’t ask about the other ones, didn’t want to know, but I had to know about this one, as if I have a big sign on my pump that says DOSE REDUCTION, then I know something is going on), and it basically hasn’t stopped since. It’s so rare for me to cry, they have only seen me have a small teary in the chemo unit in all this time, but today I just full on howled my way through the whole day. I didn’t have anyone with me, and I don’t think that is something I am going to do again…even though it feels awkward when people are there and have to comfort me, I think I will have to take someone with me from now on, to help me through these bits of news. Everyone else on the ward (all the chairs were full, they always are) had people with them, and all THEIR people were coming over to comfort me, as well as all the nurses who were a bit staggered and said this was not like me at ALL. Nobody knew where to look with this sobbing woman in their midst, and I felt for them all but the tears just wouldn’t stop.

I have a scan of my liver next Tuesday, results Wednesday. Maybe there will be some miraculous response in my liver and all the pain has meant nothing and it means nothing that my liver is struggling and levels in my blood are being pushed up. But pardon me if I am finding it hard to go there, and even imagine that. My mind, my heart, my body is weary of all of this.

I am just SO TIRED. I’m tired of fearing every blood count, every scan. I am tired of waiting for my oncologist to say the words “there is nothing more we can do”. I’m so scared of that day. I am EXHAUSTED at the trauma of wondering when I will leave my children and my Gaz EVERY TIME I LOOK AT THEM. Every time. I’m even fucking tired of wondering whether to bother watching A Place to Call Home, when it is very doubtful I will live to see how it all ends up. Will George and Sarah end up together, raising their baby? Will Dr Nordmann’s surgery be successful? Will Olivia fuck any more travelling artists? Will Roy even progress to a beer glass, or will he always drink everything out of a jam jar? And will he end up with the endlessly scandalised Doris Collins. Who the fuck knows? Chances are I never will.

I suspect I will be quiet for a short while. The hole is deeper this time, the climb out is going to rip off my fingernails. But I will be back to tell you about the results, when they come.

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A friend of mine put this on my Facebook wall yesterday. If waking up and fighting the same demons day after day, night after night means you are brave, then I guess I am. But I don’t feel it.

32 Comments on “When even your tireds get weary

  1. I think that you define brave. I work as a radiation therapist and see people like yourself, who day in and out, show up to out themselves through these gruelling treatments to spend just a little more time with their families. And keeping a family lived and secure in the knowledge you are doing everything you can do have an extra minute of time with them all, is something I don’t know that if have the strength to do. Bravo to you- I think you (and people eveywhere in your situation) are the very definition of brave.

  2. You keep watching A Place To Call Home, I’ll be watching it with you to the end xxx

  3. Hi Julia,
    Why can’t you have a liver transplant? Sorry to sound silly. Hope your day gets better. All the best. Forever in my thoughts and prayers Tash xoxo

    • Hi Tash I also have liver mets so might be able to answer your question. Essentially a transplant requires significant long termimmunosuppressant drugs to stop the body rejecting the new organ. As someone with cancer suppressing the immune system is dangerous and can result in more cancer.

  4. It’s so hard to know what to say…words just aren’t not enough. All I can say is sometimes life sucks big time, and what cancer is doing to you and your loved ones is heartbreaking. But you have such a unique view of the world, and an inner strength that I admire so much. Its perfectly ok to scream and cry while fighting this horrible disease…just keep hugging your loved ones close. Big hugs xx

  5. I can offer you no words of comfort, except feel the hugs I’m sending you down the line 👐🏻 (gawd, there aren’t even any decent hug emojis!!) and know you’re only alone in person, never in spirit. Your cheer squad here in cyber space is always with you xxx

  6. You are so brave and such an inspiration. I am so sorry for you – and anyone else – who has to go through this. Hang in there – you write beautifully even when you are clearly feeling so low – I hope the writing helps you through x

  7. Wow. I read your book after I saw you on TV a couple of months ago. Just wow. Everything about you. I don’t know why you have to be the one to suffer with this, or worry about your girls and your husband. I have no idea. But I do know that you CANNOT be strong and positive all the time. And neither is that the secret to beating this either, look are you friend, Oriana. No, I believe you have to succumb to your emotions at times, and it is not fair of anyone to tell you to keep smiling and always stay positive. I do admire you, for ALL you are x

  8. Jules, my dear ….. what to write, in the face of this? Everyone of your many friends and supporters will be harrowed by this post and the news is hard to bear.
    So much harder for you. Beyond unbearable for Gaz.

    I wish I could help. But we are all powerless, and that is the hardest for you. Powerlessness is shit. Your own energy and power has pushed you so very far.
    Your zest and energy has made the drift towards this point so much more of a good ride than any of us expect, but there comes a point where the hope fades, and you seem to be there now.
    I have no idea how to counsel you or help you, I am pretty sure that platitudes will only make it worse ..

    so for myself I will say: I have loved knowing you.

    You have given me insight and inspiration in this on-going trauma that is life with cancer. I have found your life and your story moving beyond words. Your wonderful way with words, your tatoos, your hair, your family, your holidays, your warmth and compassion and for sure, your amazing, inspirational bravery …. thank-you for sharing all of that.

    I honestly would trade my survival with yours if there was any way we could do that, to give your lovely family their precious mum for a few more years. I know you saw my remission as a hopeful sign, and what a total f^%% that you cannot have the good luck that fell to me .. so sad …. so very sad my dear friend.

    I will say goodbye now, hopefully not “the last goodbye” but joining you in your honest recognition that this is closer than you hoped. Goodbye, my dear, goodbye xxxxxx

  9. you are amazing Julia, I cried reading this post, so much so I had to read it again, you are amazing and brave and this shouldn’t be happening to you and your family.

    I hope it means something to know that a stranger on the other side of the country is thinking of you and praying for you.

    On a lighter note and I hope this doesn’t offend, I need you to tell me what’s happening in A Place to Call Home as I don’t have Foxtel.

    Sending you all the cyber hugs and kisses I can.
    Xx

    • Well, let me see. Sarah is pregnant, to George. She went to the city to get a termination but Aunty Peg guessed and lost her shit. She got to the table at a butchering abortionist but got up at the last moment. The butcher all but killed the teenage girl that came after her. She bought the girl to Jack, who performed a hysterectomy, but the teenager died. Sarah got cramps and collapsed at the side of the road and George the great rode by and picked her up. He took her to hospital and in a blinding flash of clarity he realised that it was about a baby and it was his. He asked Sarah and she admitted it was, but she planned to raise it with Rene. George came as close as I have seen him to finding his balls (I love George, but balls man, balls) and told Sarah that although he raised Anna as his own, he could never let another man raise his child. Sarah went home and Rene had a siezure or something due to his war injuries, and he thought he saw George in the doorway at Roys, and choked him, but it was actually Sarah and he was choking her. He has decided to have a dangerous brain surgery that might cure him, but will most likely kill him. That’s next weeks episode. Elizabeth went to live in Sydney and is in the process of falling in love with a man who runs a homeless shelter…she helps him out in the shelter and plays the piano. She has just returned to Ash Park to see baby Georgie be christened, but we are all on the edge of our seat, as the Blighs commissioned an artist to do a family portrait and Olivia was in he sack with him in five minutes flat. James found out and bailed, as she was showing him that he wasn’t enough for her due to being gay. He went to the city to stay with a gay surgeon who will be the same surgeon who operates on Rene next week from what I can work out. I think that is pretty much it. There is more, but I think I have covered the major themes for you xxx

      • After reading your post and then scrolling down to read peoples comments thru my tears and prayers, here was your reply to someone regarding A Place To Call Home. You made me smile all over again…you would have to be the.most.inspiring person I have ever come across. Grace, passion, love, tenacity, humour and courage and friendship to many – even those who you don’t know…I wish I knew you ‘in real life’ – I’m sure you could teach me a thing or two about life & how to live it well. You are truly inspirational and I hope your next results bring you better news. xx

  10. No one should ever have to go thru what you are enduring cancer is a heartless disease.
    I pray that you will find peace to enjoy your hubby and your beautiful girls.
    So that cancer doesn’t take anymore from you than it already has.
    All my love and strength to you and you family 💜

  11. Yep… Must be one of those weeks. My heart sank when I read your post. There are no words to describe the feeling of grief. Until you face the situation yourself. I know exactly where you are coming from. My tumour markers are going up too despite the same treatment. And my best chemo ward mat age 53 hasn’t been successful either and they told him Yesterday he has only a coup,e of months. So I too, as strong as I am, cried in the chemo ward for the first time. I have no shame for that. It is reality.

    But my friend, let’s lift our chins and step forward with grace and strength. One moment at a time. As others have said, much love and support your way. As for me, I will pray for strength for you as I know for me the only peace I find in this harrowing journey is through my faith in Jesus and a life hereafter. May not be your thing, but true for me xxx

    • So sorry your markers are rising :( I gather mine are too, they were taken yesterday, but I did not ask the result today, as the rising AST was enough to me…with rising markers (and I of course suspect very much that they have risen) I think I would have had a nervous breakdown. My oncologist asked me to wait for Wednesday and get them from him in conjunction with scan results, and I promised him that I would and have been true to my word. What a fucked up week eh? I am sorry about your chemo buddy too. God this shit SUCKS.

  12. Jules,
    I as many of your fri ends have been with you through every step of this journey, and your strength through all of this has been incredible but it’s ok to feel this , so take as much time as you need and we will be here to support you always….

  13. This resonated with me a lot today. Sending you love and visions of man buns xx

  14. Dear Jules, I too don’t know what to say but I couldn’t just walk on by without letting you know you’re heard. Loud and clear and desperately sad. Your friends will be weary and won’t know what to say. And yes I know that platitudes can sometimes make you angrier than ever. But saying I hear you, I’m holding your hand and walking beside you, willing you to claw your way out of the depths doesn’t seem much help either.
    One second, one minute and one hour at a time my friend.
    As beyond painful as it is to watch friends you have grown to love die of the same shitty disease and I know this too, their( insert another word for journey Pls) doesn’t have to be yours . You will find your own way when you need to again. In the meantime breath and force yourself not to look too far ahead. Much love and strength to all your beautiful brave family too. X

  15. i know (or not really) you are driven to the depths by the knowledge of what is to come and it wasn’t part of the plan.
    I wish you everything and as much time as you can have with your gorgeous girls.
    I wish you had more choices and more hope.

  16. Hello, long time reader, first time commenter. I am sorry that your latest results weren’t more positive. I can’t tell you how much I enjoy your writing, and admire you for so many different things (incredible writing, ability to produce lovely and gorgeous human beings, sensational hair to name but a few). Can I challenge you to get onto youtube, put some headphones on, and play Tubtumping by Chumbawamba, at full volume. Then, when you are Rocky running up the stairs kind of ready, have a dance in the lounge room with your family and pump it up. With a whisky drink. With a vodka drink. With a lager drink. With a bottle of bubbles. Your good humour, grace under fire, and elegance will mean that you will find a way. Take care – you are in my thoughts. xxxx

  17. Jules. YOU ARE THE EPITEMY of strength. Feeling like this doesn’t mean you aren’t strong. Feeling like this means you are HUMAN! Have you read Louise Hay’s book You Can Heal Your Life? I hope you have all the love and support you need to get through this dark part of your journey. All is not lost. There is always hope even though you might not always feel hopeful. Love and light your way. xxxx

  18. My heart hurts tonight, reading your honest reflections leaves me in despair.
    I wish I knew what to say to but my words feel so inadequate …
    Just know this …. I think you are unbelievable ….
    Cancer truly is a demon, a frightful demon….
    BUT … you have the Doctors, the Nursing staff your Wonderful Family , Friends and many many Supporters like me. We are here to support you and surround you with our skills, love, positive thoughts when you sometimes feel tired and defeated. Most of us you will never meet, but Trust that we are here when you need us.

  19. Why is it that what you post is always the same as how I feel. Must be a week of bad news. My markers have also risen slightly and I too had a good cry with the hubby. I’m about to reach 1 year from diagnosis and wonder how long I have left? Every time I hear of someone passing from bowel cancer it tears me up as I know one day that will be me. Yes I am afraid. I don’t want to leave my family. At 45 there is still too much to do on this earth. I feel your pain and anguish.

  20. Anything I type seems to sound twee and not do justice to your fight. You are, hands down the bravest and most honest person I have (never) met. You are your family are in my prayers. X

  21. Hi Beautiful Girl
    Know that feeling – your words resonate with me and loosing the beautiful and brave Oriana rocked my world also. This week I lost my hair in 24 hours – Jessie didn’t take this well because now mummy looks sick to the world – everything you have said above feels like I am saying it out loud – I worry constantly but please, please stay positive as we both know a strong resolve is as good as any of these drugs – you are an incredible role model to all of us and to your gorgeous family and you are loved to bits girl xxx

  22. Your courage in the face of all of this has been amazing. You have every right to be thoroughly pissed off, exhausted and sad. I hate that you probably can’t get better, but I have so much been pulling for you to have more milestones and beat your odds.
    The loss of your friend this week must really make the burden of the treatment all the harder to take.
    If all of our good wishes could do something, you would have had a miracle so long ago.
    Take the time to rant, rage, sleep and snuggle. You’ve earned it.
    Love, peace and tears for you.
    Much love and tears for Gaz and the girls.
    XXXXXXXXXX

  23. Cancer is a fucking c*** of a thing. Sorry, I am not very articulate and I am not a big fan of roller coasters. Thank you for taking us along on your roller coaster ride and here’s hoping for more ups than downs and that a lovely school break awaits for you and your family.

    Look at what you do to people Julia! I am one of the few people in the world not on Face Book or any other type of social media and here I am commenting on a Blog!

    Best wishes. 😘

  24. Jules, I have songs in my head that I would sing to myself, at different times whilst dealing with the diagnoses of stage 4 cancer at 40. I know that it sounds a bit weird but it helped me cope. The one I would be singing would be “Some days are diamonds”. I never really liked country music but at times like this it was fitting, and think Lisa put one foot infront of the other. Not straight away but the DJ in my head would then change it to Katy Perry Fireworks, then I was up and not having to think about having to put one foot infront of the other. I pray that you too will find your DJ that will give you the strength to move pass this, but most of all I pray you find peace of mind with whatever unfolds. Sending you light and love
    Lisa

  25. Every day I search ‘cancer cure’ waiting for the breakthrough. Articles like this one this week give hope.
    http://www.express.co.uk/news/science/618731/Cancer-breakthrough-GM-super-cure-zaps-cancerous-cells-but-leaves-healthy-ones-unharmed

    When I think of all the clever minds working on this, around the world, who knows how long it will be before they find THE ANSWER & a simple drug/procedure kills off the cancerous cells before our eyes. Hoping & hoping your levels stabilize at your next check so you can enjoy life more, waiting for that clinical miracle trial. Love your strength. You make us all enjoy & treasure every minute. xxxx

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