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Health Update - Hapax Legomena
A word from the decaying mind of Paul Haines
Health Update
Just over two weeks ago we met with our oncologist, presenting the latest set of scans and blood results. At that point I had been jaundice free for perhaps 5-6 weeks which was definitely making life more comfortable. My oncologist, you could tell, was very pleased to see how I was a survivor, that I was beating odds that we all thought would have killed me by Christmas.

My bilirubins had dropped down to 50, possibly the lowest since mid-September. Great for getting into SIRT though we would no longer be pursuing this path as my lungs were such a mess. And ideally I needed to get the bilirubins down to under 20 to be allowed on any clinical trials. (Less than 20 being considered normal for a healthy person). As expected there were not really any options I could engage in at the moment, though a promising tablet-base trial was hoping to commence in late April/early May, and that commencement date brought a little silence into the consulting room. None of us are expecting I last that long. It's a huge carrot on a stick, and even if my bilirubins were to pass, my general state of ill-health come late April might be so bad that I'd be too weak to commence such a trial anyway. Still, a light in the dark, something to seek in that long long passage of nothing and darkness that I'm already sinking into. (Oh, the melodrama...)

But that night friends who arrived from NZ to stay for a couple of days were pleased to see how I had improved and that there was hardly any yellow in my eyes at all these days.


There should be none.

So to make that stick and carrot even more unwieldy, the jaundice is back. I'm living with it better this time around, but it leaves my dehydrated, fatigued and with altered taste buds. Not good really. Nothing like making life a little tougher than it needs to be.

Where am I at? Sleep is broken, not really because of the jaundice this time around, but because of the loss of muscle mass causing my shoulder blades to be noiser than a bowl of Rice Bubbles. And a hell of a lot more painful. I'm struggling to read more than 2 pages at a time in any given book before my eyes begin to close. Fatigue, I think a lot of it feels like what I went through with the deep jaundice, is wreaking havoc on that side of my concentration. It's the same with movies and tv shows - though I can often last an hour before I begin to nod in and out nodland. Which would be nice but invariably I wake up in pain with the shoulder screaming at me "what the fuck do you think you're doing leaning on me?"

I also have a lot of fluid retention building around my feet and abdomen. I'm elevating them for most parts of the day to keep them under some sort of control, but it's definitely not ideal. I'm taking 40mg Oxycontin twice a day for pain killer duty, and have only just managed to get that dose under control so I don't spend the hour after taking them in nodland. (Haven't quite figured out the new dose of Coloxyll/Senna I need to take to battle the constipation though - so this is also causing pain when I misjudge it all).

I awoke late afternoon or early evening (I don't recall which) feeling hot and sweaty, the remnants of a green vegetable juice awash in my guts and I'd like to say ran outside but I can't run, and fell to my hands and knees and proceeded to throw up. Except I didn't. Very strange. Jules, not quite panicking, but definitely alarmed noticed just how distended my belly was, freaked out somewhat and called the district nurses. My body calmed and cooled down somewhat over the next hour and I managed some pitiful toilet time before the district nurse was knocking on the door. My pain killers were also kicking in now too.

The nurse talked with Jules and I for about an hour (essentially nothing she could really do, unless perhaps she needed to inject some morphine, but I was quite stable by this time, and Jules was also a lot calmer.

My appetite is thing of the past. I know I have to eat because if I don't eat I will die, and yet the plate of food (doesn't matter what Jules cooks) is often too hard for me to even contemplate. I've stopped eating the evening meal with my family and instead will snack on its and pieces with a fruit and carb-loaded smoothie until I go to bed (anywhere from 10:30pm-1:00am). Breakfast is still okay and I'm back on 1-3 vegetable juices per day simply to get nutrients inside me.

I'm no longer accepting visitors or taking phone calls (Jules is vetting them for me, and that is just as exhausting for her) but email correspondance with me is still good. I can approach it at my own pace, and reply when I have sufficient energy. Of course, important calls are still taken, but social stuff I just cannot do. If you want to know how we are coping, particularly me as Jules prefers privacy and doesn't often appear in these posts, then please read the blog as the source of info.

It's getting close, people, very close.

Very soon we're going to have to have *that* conversation with Isla, and I'm so scared of bursting that big happy bubble she currently lives in.

Tags: ,
Current Music: My Jealous God "Easy" (1992)

34 comments or Leave a comment
benpeek From: benpeek Date: February 16th, 2012 05:37 am (UTC) (Link)
Aw, man. April. It's not that far.

I'll hold out for you. I'm comfortable doing it. You just chill and do what you have to and I'll hold out, over here.

Just hit me up if you need anything.

paulhaines From: paulhaines Date: February 17th, 2012 10:50 am (UTC) (Link)
*hugs* back, my man.
karenmiller From: karenmiller Date: February 16th, 2012 05:50 am (UTC) (Link)
Words fail, really. Words fail. Much love to you and Jules and Isla. You're in my prayers.
paulhaines From: paulhaines Date: February 17th, 2012 10:51 am (UTC) (Link)
Thanks heaps, Karen - I'll miss you, your frienship and your advice both of which have been plentiful since Clarion.
karenmiller From: karenmiller Date: February 17th, 2012 11:27 am (UTC) (Link)
And I will miss you. More than that, I'll forever regret the fact that we live so far apart that more time couldn't be spent shooting the breeze. But here's the thing. I utterly believe in the survival of the spirit. So, y'know, once you've gone ahead down the road - if that is the way things must be -- I'll flap my lips at you from time to time, trusting that you can hear and you're saying something typically Hainesian back at me.

Never doubt you changed this world.
From: (Anonymous) Date: February 16th, 2012 09:40 am (UTC) (Link)
You are and always will be a powerful inspiration for Courage and the Value of Life. In so many ways your struggle to survive will not be in vain and you can be sure that your Isla will grow into a very strong and special woman in the knowledge that her father was a remarkable man who loved her beyond measure and for that she is truly blessed. Love, Alex
paulhaines From: paulhaines Date: February 19th, 2012 11:25 am (UTC) (Link)
Thanks, Unc!
benpayne From: benpayne Date: February 16th, 2012 11:27 am (UTC) (Link)
In your corner, always, Mr Haines. Hope you give the jaundice another good kicking and see the next light shine.
wendy_waring From: wendy_waring Date: February 16th, 2012 11:51 am (UTC) (Link)
Oh Paul.
What can I say?
Don't go. I'll miss you. Selfish, but true.

I'll hope my hardest hoping for the little light to get brighter.

Courage for Jules, hugs for Isla.
chrisbarnes From: chrisbarnes Date: February 16th, 2012 12:58 pm (UTC) (Link)
As Karen and Wendy said, words seem feeble and inadequate things at this time. For me at least. Yet you, you manage to find words, and you're the guy this is all happening to.

You're a good man Paul and I wish you could stay with us a good while yet. I guess I'm hoping for a miracle. At the very least, I'm hoping you have as easy a time of it as possible.

keithstevenson From: keithstevenson Date: February 16th, 2012 07:04 pm (UTC) (Link)
Oh God. Well that's no good. All my love to you, Joolz and Isla.

K xxx
From: (Anonymous) Date: February 16th, 2012 09:26 pm (UTC) (Link)
Ack. *That* conversation.

One of my favourite things that happens in the Susan Sarandon movie "Stepmom" (yes, I watched it in a panic right before I got married and became a "Stepmom") is that she has this thing with her son where she tells him they're going to have dream dates. Like, "see you at the beach tonight, in our dreams".

I've always thought that if I was going to die, and didn't want to cough up something I don't actually believe in like "we'll be together again in heaven" (comforting as this was to me when my grandfather died and I was 11 years old)(also, the Small One is quite sharp, she'd probably ask things like "if we're all together in heaven, is Daddy's Number One Wife Who Died going to be the Mum, or are you going to be the Mum?), I'd try a variation of the "Stepmom" dream date system.

GOOD LUCK, anyway.



paulhaines From: paulhaines Date: February 16th, 2012 10:22 pm (UTC) (Link)
The dream is where I'm heading too - I'll come and visit her in her dreams. I'm going to write her a letter first (in a way of putting off the Daddy's dying conversation) but I think I still have a couple of weeks up my sleeve before I need to tell Isla about the severity of my situation.
narrelle From: narrelle Date: February 16th, 2012 10:09 pm (UTC) (Link)
Hi Paul,

I've only met you briefly and was on a panel with you at Aussiecon 4. I hear of you everywhere, of course, and finally picked up your collection, The Last Days of Kali Yuga. Weeks later and I'm still thinking about Wives. It sneaks up on me in unexpected moments.

I don't know you, really, but I know you're a remarkable person. I hope you can hang on for that tablet trial. I hope a lot of things for you, and Jules and Isla. Whatever happens, Isla is going to know how much you love her, and what kind of person you are, because everyone here who loves you will make sure she knows.

Good luck.
paulhaines From: paulhaines Date: February 16th, 2012 10:23 pm (UTC) (Link)
Thanks, Narrelle.
taliehelene From: taliehelene Date: February 27th, 2012 12:07 pm (UTC) (Link)
Oh Paul, the suspense of that carrot. It all sounds so exhausting, and you are all so brave. I hope you stagger across the line and into that trial. I wish you defiant luck, uncanny luck.

You will do the best you can with that conversation with Isla - that's all you can do. Narrelle said very much what I might have (but with less grande opera and more good sense). I'll add - just look at the comments across your whole journal. Isla has a Dad who inspires people - not just to creative excellence, but to personal courage. I have no doubt that she is the one you will inspire most of all, her whole life, on both counts.
jain_again From: jain_again Date: February 16th, 2012 11:31 pm (UTC) (Link)
Will still hope and send positives your way, April is close..
fearofemeralds From: fearofemeralds Date: February 17th, 2012 04:07 am (UTC) (Link)
Oh Paul. No words. Just my very best thought, hopes and wishes. xxx
amandapillar From: amandapillar Date: February 17th, 2012 10:42 am (UTC) (Link)
All our thoughts and well wishes are with you, Paul (and for Jules and Isla as well).

Much love, Manda & Tom
Steve Cameron From: Steve Cameron Date: February 17th, 2012 10:11 pm (UTC) (Link)
My thoughts with you all, as always,

Steve Cameron
From: (Anonymous) Date: February 18th, 2012 03:53 am (UTC) (Link)
April -- let's hope you can confound them once again and make that trial. I'm with Chris -- I'm hoping for a miracle, and for you to have an easier time of things. You're in my thoughts.

Tracey Rolfe
rachelholkner From: rachelholkner Date: February 18th, 2012 08:57 am (UTC) (Link)
Much love and hope for you and your family, Paul.
Thank you for all your words, ever.
eneit From: eneit Date: February 19th, 2012 07:01 am (UTC) (Link)
It's all been said , much better, and by folk closer to you guys. I just have one thing to add - thank you for sharing. For allowing relative strangers to care, and offer what little support we could in the face of all this. You deserve so much better than this hand fate dealt you, but you have reached more people than you could ever know, and taught us what real honesty, courage, and dignity mean.
battblush From: battblush Date: February 19th, 2012 09:45 am (UTC) (Link)
I'm so sorry, Paul. I don't know what to say, but I have to say something. I'm thinking of you, I'm praying for your family. You will be sorely missed.

paulhaines From: paulhaines Date: February 19th, 2012 08:03 pm (UTC) (Link)
Thanks, Lynn (and Lee...)
From: (Anonymous) Date: February 19th, 2012 12:52 pm (UTC) (Link)
hey Paul, Im holding out for you too, for April. Your strength, honesty and humour amaze me, from telling stories pissed in a bar to when I pick up book and there you are, talking to me. But moreso your courage. Im thinking of you, and wishing well for you and Jules and Isla.

paulhaines From: paulhaines Date: February 19th, 2012 08:03 pm (UTC) (Link)
Thanks, Duffy - you know how close you are in my heart. I'm holding out for me too but I'm just so weak and tried these days I fear I'm losing grip faster than my resolve.
suegardner From: suegardner Date: February 20th, 2012 10:39 pm (UTC) (Link)
Oh Paul! You know how I feel about you. I don't want to say goodbye but I have to tel you it's been a privilege to have studied with you and you have had a huge influence on my writing. So glad I got to see you again in 2010. And see, you've battled and hung on for nearly two years since then when it all looked pretty bleak. It's a testament to your courage and bloody mindness you've held on to life for so long, so I hope if there are any miracles going, one can be handed out to you. Not too much to ask?

Thinking of you from the other side of the world.

Big hug (a virtual hug can't hurt you!)
paulhaines From: paulhaines Date: February 20th, 2012 10:42 pm (UTC) (Link)
Thanks, Sue. TAFE was a much better place for me with people like you in it and I was very happy to be able to catch up that wee while ago. Thank you too for you Christmas letter - I appreciated it a lot.

Michele Cashmore From: Michele Cashmore Date: February 21st, 2012 03:09 am (UTC) (Link)
Paul - I have no words. All I have is love and light ♥ You have and always will remain to be one of the biggest influences on my writing life and your courage as a human being and friend is beyond measure. Much love alwayz ♥♥♥♥ ~Michele x
From: drcow Date: February 21st, 2012 07:27 am (UTC) (Link)
Dear Paul and Jules,
I am overwhelmed by the courage and humour that you have both shown in the time that we have known you. I am sure that when you decide that the time is right for 'that' conversation with Isla that you will do it well. And I am sure that she will handle it with the courage, honesty and maturity that you have given her over the years. Our thoughts are with you all. P
haloumi From: haloumi Date: February 23rd, 2012 11:36 am (UTC) (Link)
I can only hope that you can make it to April. Other than that, just thinking of you and your family and, again, hoping for something amazing.
ellen_datlow From: ellen_datlow Date: February 24th, 2012 04:23 am (UTC) (Link)
Your journey has been amazing and moving. Thank you for sharing it. I hope it continues for awhile longer and that you DO make those April trials.
My heart goes out to you, to Jules, and to Isla.
punkrocker1991 From: punkrocker1991 Date: February 24th, 2012 04:27 am (UTC) (Link)
Take care dude, thinking of you often, can't hear a track off HINDSIGHT without thinking of you. May Pandora's Box reveal a new surprise.
34 comments or Leave a comment