Yellow

Words can’t really describe how I have felt the last few weeks. From the relief of finishing radiation, which meant that I might spend more time awake, to straight into some shocking liver symptoms that I recognised straight away were probably from a bile duct or two being squashed by tumours. I knew I had not been on chemo for a couple of months and we knew that rising cancer markers almost certainly meant the tumours were growing (and we were right), but I wanted to give the radiation a stab, and have a chemo break to heal my body before trying to next round of gruelling treatment.

So, I pretty much thought it was curtains for me. I went downhill every day. Pain (though she was not the biggest part of the problem, I can push through a fair bit of pain), un-relenting nausea like being sea sick 24 hours a day, and itching. It’s just itching, right? Well, there is a mosquito bite, and there is wanting to actually rip all your skin off, and bugger the consequences.

So, that was it, overnight, all my quality of life gone. Those who know me know that quality and being able to mother and friend and socialise and have the prospect of good times, even if they aren’t all the time are paramount. Nup, this was it, this downward spiral I knew one day would come, and I didn’t even have the time or energy for one more party..

It’s been pretty harrowing to be honest. We went away in the bus for a weekend, I wanted to catch up with some friends, and I did it with the help of some steroids, but you had to catch me in the afternoon….morning too sick…night too sick, and too tired, but I managed a couple of small windows and saw people and enjoyed their company. Every time Gazbo dared open his mouth and say something even slightly contentious and I was up him about being nice to me as I was going to be dead in a few weeks. Not really what you want to hear, and me giving up is going to be frightening for everyone, but for once I barely even cared. I couldn’t help anyone after I was gone, I didn’t even have time to set him up properly to look after the kids, tell him things he needed to know…nup, I was just going to lie there and die. I knew, even without a recent blood test, that my liver function was not going to be good enough to start on the new drug – it would have killed me. So yep, curtains, curtains, the final curtain, it’s been nice dudes, see ya on the other side.

I had spoken to my oncologist before he left for an overseas conference to tell him that I was getting worse, but at that stage it was all just starting and I was naive as to how worse worse could actually be. He said control things with meds and we will look into everything when he got back in two weeks.

Yesterday the news was in. I DO indeed have a squashed bile duct. My liver function tests are at some spectacular levels, and there was no prospect of starting the new treatment today as booked. But, my lovely oncologist was as calming and pragmatic as ever. “It’s blocked, we have to get it unblocked, then I anticipate in a couple of weeks you can start the treatment”. He rang the surgeon immediately, shared my special bilirubin levels with him and hey presto, I am in tomorrow for a stent. Best news of all, as soon as the stent is in, this bile will drain, goodbye nausea, goodbye ripped apart skin, bit of a sleep overnight in the hospital and home I come to my life.

TO MY LIFE. I still have one. I think I have been going a little mad these last few weeks. Because, guess what? When toxins build up in your body, they also build up in your brain and you go a little cray cray. That is actually medical speak folks, I’m not making it up. Unfortunately my pain is increasing, so I do have to hope that this new treatment when I have it gives me a bit of shrinkage of the mets, as they have grown quite a bit. All things are possible, I just have to keep telling myself that.

In the last couple of weeks the army has descended on me again. Meals have been dropped in, my friend Bekkii looks after me with singular devotion that means she will bustle around without me feeling the need to entertain her. We actually got out to a movie last week, just in a desperate attempt to have some fun together, instead of me just feeling like a burdon (I know she doesn’t think I am). We saw Me Before You, and I had quite a reaction to it, in it’s comparison to my own situation, so I came home and wrote an article about it, which was published – my first article in months at motivation has been failing me for quite some time. It gave me a real life, and once again I am starting to feel that keeping on writing, and just keeping on in general, without thinking into the FUTURE is going to be the key to keeping me sane.

I have a beautiful family, the most magnificent friends that I could never have imagined in my lonely early years that I would have, and I still have my life. I won’t let go, not while I don’t have to.

There’s time for one more party – maybe two. :)

Oh, as of a few days ago I had something like 11 out of 12 signs of liver failure. The only thing I hadn’t done was turn yellow. Well, today I GLOW. It’s not my colour, I tell ya. Doesn’t go with ANY of my party clothes :)

Chat soon xxx

12 Comments on “Yellow

  1. Can you send me a link to your article about me before you please. I watch it at the movies and would like to know what you thought. I care for a quadriplegic

  2. I admire you so very much, just last week I lost my good friend to Pancreatic Cancer which advanced to the liver, she fought for three years, which gave her time with her children and husband and family and friends. They went on trips, made memories, her memorial was hard. I am not telling you this to make you sad, I just want to say that I admire you and my friend for the strength and determination that you both show, I know you are not perfect and I am sure Cancer is a word you wish would just go away, from your body and from the dictionary. Seeing how both of you have fought makes me feel terrible for when I get upset over stupid things that don’t even matter. Keep the fight :)

  3. Your strength and determination are an inspiration to many. I hope you have many more parties!

  4. I’ve been lurking around on Facey but not in a stalkery way and I’m so pleased you wrote this post, I’m taking your writing as a good sign. I’m sorry things have sucked balls so much the last couple of weeks but the unblocking of ducts has never looked so good! I am confident you have more than a few parties in you – hang in there xx

  5. Bring on the stint and more parties , sans yellow.
    I know it in no way compares but I had obstetric cholestasis and I wanted to rip my skin off too. I can’t imagine it or the downward spiral and toxins sending you off the radar.

  6. Hi Julia, hopefully that magic wand will come tomorrow when you get the bile ducts unblocked, I truly hope your next lot of treatment is far kinder on your body, mind and soul I look forward to hearing how grand your parties were. Take care Julia love and hugs to a truly amazing lady XOXOXO

  7. Love and hugs Julia. I don’t know how you manage to appear so cheerful with what you are going through. But I guess we all have that inner strength that tells us not to give up. Keep up the fight and love to you and your family.

  8. My prayers and deep admiration continues,I look forward to your inspiring words again xxxxxxx

  9. Hi Julia, best of luck with your procedure tomorrow, I will be thinking of you… Also, we are also on an adventure tomorrow, with my husband starting on the Cyber Knife radiation machine, this is a fang dangled machine that is meant to target lesions in a more pin point way than tradition radiation, so I hope we both have a good day tomorrow😀

  10. I’m not on FB but just wanted to say I am thinking of you as you enter this new stage of treatment. I hope you get some real quality time on this drug, and that a trial pops out at you: we all hope that for you.

  11. Just checking in I hope you are ok. You and your family have been in my thoughts.

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