The land of do as you please

I once wrote about the land of Topsy Turvy, a land you could visit at the top of the Faraway Tree, or in the Wishing Chair…beloved books from my childhood. I likened living with cancer to having to learn to walk around on your hands. You get used to it in time, but there are always times it is going to be a terrible inconvenience.

So, I am up in the land of Do As You Please, and I’m getting a look at it, but not quite getting to play there yet. I had another incident of the acute, what I thought was liver pain on Sunday night, two weeks after festivities of a similar manner, but this time it was so bad I had to go to hospital, as I also had to accept that it is not an isolated thing, and we have to find out what it is. They got my pain under control, and I spoke to my oncologist who thinks it isn’t my liver at all, but pancreatitis, or gastritis (stomach ulcers), probably caused by some rogue SIRT beads ending up where they shouldn’t have. It’s not a huge deal, I have to have some more invasive tests though, and I am sick of the medicalisation of my life. The port removal will be one procedure, putting the other one in and taking the picc out another procedure, this gastroscopy yet another one, still chemo every two weeks. I know what would fucking please me, and that would be leaving this nightmare behind, but it’s not going to happen, and because I have the perspective that comes with the good SIRT results, I haven’t dropped my bundle mentally this time, I just think of it as another thing I have to get through to get to the lung therapy I so badly want. And on that note, right just then I got a call from the specialists rooms, I have an appointment next Wednesday! Now just to get him to treat me and I will be one happy, happy camper :)

I HAVE been doing a lot of pleasing things. I have been managing the school runs mostly by myself, cooking SOME of the time, not quite as often as I intended yet, but the other night two of the kids cooked dinner pretty much all by themselves, they just had to get their dad to get the meat into and out of the hot pan. That was pleasing stuff, to see not only do I love the new kitchen, but so do they, and it’s changing the way we live. I have entertained friends around the table 2 times, which would pretty much be two times more than I have done it before in my old and uninspiring area. I had told the kids we are getting into meditation every night and I can tell you that that hasn’t started yet, we are too interesting in getting homework done, which has really stepped up this year, and watching MKR. And the dining table, well, sometimes it’s a place where you all eat, and other times it’s a place where you dump several baskets of clean washing, and sometimes, maybe a lot of the time, the children get dressed straight from it. You can’t have it all, right? Right?

Chemo yesterday and I feel foul, but it’s all good, I got to go and wave Dakota off on her first high school camp and drop the other girls off before I came back home to bed. Today I’ve done good, that’s enough. I’m going to lie here now and binge watch Orange is the new Black as I feel like I am missing out on something. I did watch about 15 minutes of it a few months back and then Netflix crashed and I moved on to something else. I do remember there were lots and lots of boobs….gotta love boobs.

Just on a final note, people often tell me I am brave, and I don’t really think I am, just doing what I have to do. But there are some things that I have worried a lot about that I have overcome and I am a bit proud of that. Joining palliative care was hard, but I have been in that program 18 months now and I am still not dead, and they are still the best people ever. They only need to come to me for a chat really though, and occasional call outs for morph when the liver bleeds or something. I have never had to GO THERE. Not that hospice, which I might have to go to…well…you know. Same place that I visited Gaz’s ex wife in many times in the lead up to her death from lung cancer 10 years ago. Imagine Gaz having to see two wives in and out of that place? I’m going to pull some miracle out of my arse, I swear, it just can’t happen. Anyways….what I am getting to here in a long winded way is that for two years I have managed to not drive past that hospice, even if it mans taking a long way to somewhere. But I knew that the day would come that I couldn’t avoid it any longer….it’s right opposite Dakota’s high school. So, I just drive on past every day, lalalalalala fingers in ears, it’s not MY PLACE, and I have no intentions of it being for a while. So yeah, I’m proud of that.

My friend Lou and I, lunching around my not laundry covered table the other day :)


7 Comments on “The land of do as you please

  1. Julia, glad the kitchen is so inspiring for all of you, and yes well kitchen tables get covered with all kinds of shit. I livelong and still my smallish kitchen table is now full of papers, my laptop, fruit bowls, glasses cases, a measuring tape, pens, lipsticks etc. I tidy it up every now and then, bit it’s a bit like my mind, messy and cluttered but colourful and somehow reassuring.

    I am very impressed but your increasing acceptance and lack of hysteria around these nasty pain incidents, you are certainly growing lovely. Love that you can spew it all out too. Do what you must, I am here for you even if we are not geographically close.
    And i would love to fall asleep with you at chemo one day . I’ll need plenty of notice as I live in Reservoir though. But yep I’m up for it. Got more travel coming up so dates need to gel. PM me honey.

  2. Hi Julia
    You are brave. Just how easy would it be to give up? You are fighting for your life : you are ensuring that no stone is unturned. My uncle decided not to fight. From diagnosis to the time he died was 6 weeks. He was diabetic and stopped monitoring his diabetes and ignored his symptoms. He basically curled up in a ball and gave up.
    You on the other hand are remarkable. Everything you are going through is friggin awful, but without hope and a bit of effort, the alternative is a bit bleak.
    I think your kitchen is awesome. Ours is a place to ignore. We use the dining room bit, but it is still uninspiring. :) Yours on the other hand, is a place of love. Keep loving.

  3. You are real and you are human, and it makes us all who are having journeys of our own that we are finding difficult, feel ok about ourselves and our messy tables and our binge TV watching. That makes you very special to a whole lot of people out here in internet land. Thank you

  4. Hi Julia,
    Just finished your book. Just wanted to say thank you for sharing your story and you truly are an inspirational woman! Keep fighting – we all have your back, and please know that we are listening and learning from all the life lessons and wisdom you are gaining from this terrible disease and we thank you for sharing them with us. You are one cool lady and your friends and family are truly blessed by having you in their lives. Your my type of authentic, no bullshit, positive person. Go well.

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