Nothing to fear but fear itself.

It’s probably not a good idea to write a blog post from the place I am at the moment, but hey, I’ve always been about the truth, the rough and the smooth, so here you have it.

First of all, the pain from the blood clot has almost gone now. I am on twice daily blood thinners, and although my stomach is covered in bruises, I was pleased yesterday when my oncologist said that I can probably go down to one injection a day in four weeks time. That will give my poor stomach a break at least. Also, i am keeping my port. Tomorrow, or early next week, I will get a picc line installed into my other arm and we will give the next two lots of chemo this way. Then they will ultrasound my neck and see what is happening with the clot and hopefully they will be able to remove the picc at this point and start using the port again.

We just got back from an idyllic few days in Mitta. The first couple of days were tricky as I kept randomly falling asleep, still getting my arse kicked from this Lyrica drug. But the last two days that seemed to finally settle in, and I was wide awake and quite joyful. I was excited to realise that we would be booking in to Mitta for the two weeks following Christmas – a Christmas I was told I would never have. Here are a few snaps from Mitta…

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The first one is a bit classy, eh? My husband handing our 9 year old his beer to pose with 😛

I seem to have lost my ability to get my head around any possibility that this chemo regime is working. I am supposed to have already had my liver scan, it was to be after treatment 4, which should have taken place last week, but was delayed because of the blood clot. I am not having it next week, and a scan to follow.

My oncologist and I have been talking a bit about pain control lately. He said to me after QLD that because my liver pain is constant (has been for a while), he feels I should go on 10mg slow release morphine tablets twice a day. No need to be in pain at all, so why would I not? I fought him on it a bit at the time (he is used to me being a bit of a thorn in his side) and said that I would rather just keep controlling it with the occasional endone tablet. He said it was up to me of course.

This last couple of weeks has seen me on 30mg slow release morphine tablets twice a day, as well as Lyrica for the neck and the occasional endone. One thing I have noticed is that while my neck pain has always been able to break through this regime (up until the last couple of days, now it is nearly gone), my liver pain was completely gone and I was living a pretty normal life without the constant nagging reminder from my liver that all is not well. So, I said to my oncologist yesterday that I am now willing to take the oxycontin all the time (god it seems like a slippery slope….I don’t know why, it just does), but we agreed that I would dial it slowly back to 10mg twice a day and see how I go on that, as the high dose was only due to the neck pain being so bad. I mentioned to him that while the last visit was a relief to find out that those lung tumours had not in fact grown, I was becoming more and more mindful and freaked out that in 3 chemo cycles, neither have they shrunk. He agreed that they had not and said while we always hope for shrinkage, we can’t always achieve it and we had to try and look at stable like a win. I just can’t look at stable as a win, not so soon in the new regime of drugs. We don’t of course know what my liver is doing, but it could feasibly be taken as a sign that my liver tumours are not shrinking either. And here I have been for three weeks without any chemo due to the stupid blood clot, and I feel like things might be taking hold again.

My mood has not been improved today by frightful Melbourne weather, and the return of liver pain. It is not much at all, if I was not on all these drugs I wouldn’t even hit it with a mild painkiller. BUT, it is breaking it’s way through 2 x 30mg of morphine a day, which I am still on…going to start the weaning down process next week. Now that is TERRIFYING. I know that I have had liver pain before and still had shrinkage and that might happen again, this might just be me being a negative nancy, but I can’t shake those lung tumours being the same size (I think one or two might have been a mm smaller, but nothing significant).

I am noticing that I am having shorter and shorter times during “up” periods and spending a lot more time down and frightened and crying. God I HATE this! It’s what I have always been afraid of. What if I descend into this and can’t get out?

There is still so much to be excited about, and I want to enjoy it. Fuck I would pay good money for 24 hours without this hanging over my head. Everything feels so intense all the time. I feel so close lately to my 12 year old, I feel she is really trusting me and it is helping her through her fraught time with hormones running wild etc. I was always a little afraid of what this time would bring and how I would handle it, but i feel like I am doing such a good job. She kisses me every night, and hugs my neck a little longer than usual, and says she loves me. She is so hilarious too, and getting more so every day (some say she is like me 😛 ) She had me in stitches at Mitta doing an impersonation of the ninja moves she made when the timed lights turned off in the shower block and she tried to get them to go on again. I was literally in hysterics. It was one of those you had to be there moments, but I just thought gosh, you are so wonderful, I love you SO MUCH, followed by I would give anything to be with you for years and years and see all you become. I know one day we would be friends as well as mother and daughter. We already are.

Soon work will start on my dream kitchen. I always had a vision of what I wanted my kitchen to be like, and the role it would have in raising my children. I always pictured a big open plan Hamptons style kitchen, every thing white, light, bright, with splashes of warmth from wicker hanging lights over a big island and polished wood floors. At the moment we have a lounge room with an opening into the kitchen / meals area. The kitchen and meals area are dark all the time even in the middle of summer, while the lounge, which has big windows is frequently too bright and because of the way the sun rises, you often have to keep the curtains shut in the morning so as not to be blinded. Knocking this space all into one big area is no mean feat and requires the demolishing of load bearing walls in a double storey house….but I had plans for this drawn up a few weeks before I was diagnosed with cancer, and it was one more dream that had to go on ice. Although Gaz thinks my kitchen is functional and doesn’t really get why I would want to put the family through this major work and expense, he is coming around to it. It is being project managed and designed by Jen Clark, who did my book cover, and my beautiful study, so Gaz knows it is going to be good, and I suppose I have banged on about it for so long he realises it is a major thing to me. You see, I always imagined standing at the big island cooking and being able to see all the parts of my heart. Georgie crawling around the floor, Gazbo watching the telly, my three other girls all sitting at the island, maybe doing homework, maybe helping me cook. It involves removing a substantial amount from the home loan to do it, but I need to still have my dreams, something to look forward to. And I am looking forward to this, although today, it is through the lens of “what happens if this makes you sadder, if you realise what life could be like just before you have to face your decline”. I’m afraid I look through a lot of things through that lens now.

Next week I am talking to an agent that books authors for public speaking engagements. I have no idea whether she will be interested in taking me onto her books, but even the fact that I am talking to someone about such things is very exciting. I would love to do public speaking around my book, I feel there are a few different areas I could speak around the subjects contained within. For the most part, I am certainly still in the health to do this, but I guess it might be a worry to anyone taking a booking for me that this might change at short notice. Still, it is something I am excited about maybe doing, and I am looking forward to discussing it more. It feels positive, like future planning, ya know?

Now that I have depressed you all, I wish you much love, and if you find any hope, can you send it my way? I need it.

21 Comments on “Nothing to fear but fear itself.

  1. Your amazing Julie. I love reading about your relationship miss 12 year old with making that switch from mother and daughter to mother and friend. None of us know if we are going to be here for a long time to see our kids grow into adults, we can only hope that what we given them now and in the moment is enough. You are definitely giving your girls every bit of you and I can tell you, they will always have that, no matter where you are. Thinking of you every day and reading your book for a second time. Take care xxxx

    • Uno u are an inspiration honey to so many people. I send every bit of hope and prayer your way. I wish u could wake up tomorrow and this all be one huge dream. I will never forget u and I sitting chatting at the toilet block having a beer and watching Gaz and the kids on the scate board.lol
      Cannot wait to sit and chat at Christmas oh yea and have a few bevies X X

  2. Hugs Jules x
    We all have ups and downs and yours are just more up and more down right now. It is intense for you, I so see that. I just cannot imagine it at all. What I know is that each time you have faced your fears in the past you do release them to an extent and bounce back in all your glory, and we all love you for that, we love the openness and raw emotions and reality you share. Let these feelings out, get support, have heaps of rest, take the good drugs for now and I am sure this will be another “bump in the road” you overcame in just a couple more weeks.
    Keep dreaming, make plans, get that kitchen all done – in doing so all of us learn those lessons a little bit more every time too – you impact far more lives than you can possibly imagine in far more positive ways than you will ever know.
    Make a cuppa, sit in that gorgeous study chair and know you are surrounded by one giant hug from everyone that loves you xx

  3. Julia this blog post is so beautiful! Not depressing just beautiful and raw. Thank you for sharing xx

  4. A new dream kitchen sounds something to look forward too.
    The ‘downs’, I don’t know what to say but I’m thinking of you.

  5. Jules, I’m sorry you’re having a rough time.
    I always feel a bit low after going away, it’s good to reassess your life with the objectivity that camping and wine brings. .. but it’s also a bit like jumping on solid ground after being on a trampoline. A bit, flat, and heavy.
    Lots of love my gorgeous friend
    Xxx sarah, jai and Liam

  6. Oh darling Julia, your beautiful writing is so raw, and straight from your heart. Even on your down times, you still send out so much positivity, and strength..for that I love you and I send to you my prayers. Feel my arms around you beautiful girl giving you some extra strength..Judi xx💖💗

  7. You are doing well Julia! I actually didn’t find this blog depressing, rather quite positive! Do the kitchen!! I just did ours and continue renovating despite my terminal diagnosis. Loving it. Keeps me busy and it’s rewarding! Life goes on…

  8. Julia you are an inspiration. Yes there are times we get down. BUT up we get. Found ur blog encouraging. The kitchen sounds fab, it will keep u busy.XXX

  9. Get that kitchen done so you can enjoy it. I can remember when we renovated our Bendigo house, the kitchen was the last space we did and I was so sad that we did it that way. It was awesome and so useable and it had new appliances. Now is as good as time as any and then you can enjoy it exactly as you see it. Just be prepared for the chaos that the ripping everything out and rebuilding causes.
    And don’t ever think that you’re supposed to be chirpy when you are crying on the inside. You have a forum of fans here willing you on. Keep on going.

  10. You are truly an inspiration to us all Julia, dealing with the daily ups and downs I have as a Mother of a terminally ill child -I am left in awe of your resilience and strength.

  11. Thank you, I bought your book 2 weeks ago on a whim as I was out shopping for my kids and typical mother never really buy anything for myself. I could not put it down. Very inspirational. I am now re-reading it and writing down quotes from it I love. Thank you so much.

  12. I just wish I could help but it’s prayers and deep admiration special lady xx

  13. That you are planning your beautiful new kitchen says that you still have hope. That you cannot feel that hope right now says that you have pain, and more convolutions in an already convoluted experience. The crappy voices are just a bit too loud right now for you to hear hope whispering. Much love to you x

  14. Hi Julia
    So I was lying in bed not able to sleep and I thought I would down load and listen to meshels nitty gritty committee podcast. I just need to say., thank you.
    As a nurse we are told we need to show empathy and not sympathy.. But you can’t teach empathy.. I feel that empathy comes from life experience.
    I work in an acute care setting, but my ward is loosely connected to a oncology service. so some time I have the privlage of caring for people who are dying. Some whom are actively dying and I share their last moments of life and perform their last ever nursing care by laying them out for their family. Although most people think this would be a difficult time for a nurse. But for me it’s not difficult, I’m not saying it is easy, I always shed a quiet tear and then get back to my other patients.
    What I find difficult and I find my self providing sympathy and not empathy is with the patients who have a terminal diagnosis, but are not actively dying. Even after nursing for 7 year I still feel awkward and second guess myself for the subjects of our conversation. For example recently a patient of mine gave me some tips on how to make salad dressing. That night I went home and made it and it was delicious. I came back to work and I was excitedly telling my patient how great it was. Then on my break I thought to myself, the woman is dying I’m sure she has better things to talk about than my dinner.
    But one thing I will take away from listening to you is that you don’t stop living just because you are told that you’re dying. So sometimes it’s nice not to have conversations about cancer and talk about salad dressings instead

  15. Dear Julia, l usually have a tear in my eyes when l read your blog but today all l have is even more admiration for you. Please don’t stop dreaming Julia, l think if we stop dreaming we lose hope, you are an inspiration to us all, hang in there Julia, big hugs XOXOXO 💕 XOXOXO 💕 XOXOXO 💕 XOXOXO
    Kindest regards Veronica 🐹🐢🐇🐤🐦🐥

  16. Julia, you are AMAZING. Sending you hugs and positive vibes. You are an inspiration to all around you even when your feeling low. Your blog wasn’t depressing it was life. Love and light xxxxx

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