A Message from Amelia

As bad as things were getting, I was always fiercely optimistic that I would never have to post something on Jerome’s blog on his behalf. I am devastated to deliver the tragic news that the love of my life has just passed away.

It happened just after noon on Tuesday April 3rd. We had checked him into Clare Holland House in Canberra to tackle pain management and control what had become hourly vomiting for more than three straight weeks. These things seemed to have improved after less than one week at the hospice, but took a terrible turn when his lung disease worsened unexpectedly quickly over a couple of days. He passed away on his ninth day there due to breathing difficulties. The doctors didn’t seem to expect it to happen so fast; we were waiting for some sedatives to kick in to alleviate his anxiety and give a dose of antibiotics a chance to work. We figure now that they likely would not have helped anyway.

I was there, holding his hand and hugging him at the end. His parents, his sister Jessica and her partner Pete were in the room, talking to him and touching him. He was not alone and he knew it. Jerome wanted to pass away in peace, but he would never have been one to slip away. Even though his encounter with death was distressing, traumatic and the stuff of his nightmares, the process was representative of the way he lived his life and swifter than it might have been. Despite his struggle, he was active and aware, fighting physically and mentally until his last breaths.

That last bedroom was a beautiful one. In the small ACT hospice he had a private space with a garden walkout through a set of sliding glass doors. He could see the calm Lake Burley Griffin from his bed and the sun shone every day we there. We watched the mist and the gorgeous pink clouds in the sky in the mornings and evenings, and during the nights we talked and joked. The day he passed featured the most amazing sunset myself and his family had seen in years.

After his passing we each had a chance to sit with Jerome, speak to him and keep him company. Shaken by the events of the morning, I meditated with him alone for a little while so to bring him and myself the peace he sought.

Jerome had a wonderful life, and often reminisced about the amazing time he had during 2009 when he was undergoing extensive treatment in Melbourne. Despite the aggressive chemotherapy and radiation, it was during this period that he developed a sense of uninhibited happiness when it came to appreciating his life. The stresses of everyday troubles evaporated and left him with an immense gratitude for the wonderful people around him and the gorgeous world in which he lived.

I could go on and on, but you his readers know how he felt. As with almost everything he took on, Jerome developed a remarkable knack for this cherished hobby of his. He came into his own with a sublime ability to express his thoughts through beautiful words. I’m sure you would all agree.

I am immensely happy to be able to call him my husband. We married exactly one month earlier, to the day. Our ceremony was intimate and magnificent and I’m so glad the two of us were fortunate enough to be able to celebrate our love that way. He began to decline significantly the following day.

I want to thank you all for supporting him through your involvement in his journey as readers. He was so grateful to all of you for your time, interest, appreciation and devotion. He would send love to you all, my beloved warrior for his worthy cause.



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Amelia’s shoes (draft)

Created in a nameless country for a few cents. Bought for next to nothing. Made of inanimate ingredients but yet I see them and my world ends.
Perfect they sit on the couch. Grey and petite, I can’t look away. Tears fill my eyes. I am slipping away and yet there is such beauty in front of me I can’re stand it. These shoes will haunt and bless my dreams. I will find myself floating in space, a void of nothing, and these two shoes will float in front of me saying “this is what you have”, “wouldn’t it be nice if you weren’t dying”.
I sit here on the couch alone staring at the shoes. I have the universe at my feet and I could not ask for more. As I look at these visions I find myself falling backwards, cascading through a void. The shoes never leave my vision. My eyes are fixed, not wanting to give up what I have. The sites are mine. I have earned them, I have suffered for too long. Why can’t I have them?
As I slide through to the end I turn away. I have to let go. The shoes are perfect and beautiful and I have been blessed to share the couch with them. I wish things were different but they are not. Grasping harder will help just taint the beauty that I have known.
I will turn away when the time comes. The shoes will be ok. They will always be perfect. They will always be loved. I have been luckier than I could ever have imagined to know them. To sit here crying as I observe them.
How can so much joy and so much sadness exist together. I am so happy I will cry.
The end is just around the corner. I feel it will not be long.

Found in Jerome’s drafts

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Overall care (draft)

I have been thinking a lot about what people might think if they read this blog after I die (if I die.) I know there will be people who will say that I should have stuck with mainstream medicine. That trying alternate approaches is irresponsible and that this is why I have been unable to find good help as far as someone looking after my whole case.
These ideas are quite common in the general populace. Many people believe that conventional medicine is the only way to go. But I think we need a rethink as a community. Alternate methods have clearly worked. There are countless examples of people getting better using alternate methods. Sadly there are basic problems with our approach to health. We don’t look at those who get better, we look at the statistics. We don’t ask what people have done to get better. Because there are no double blind studies verifying many alternate or lifestyle approaches to health it is assumed that they don’t work. The phrase “there is no proof that this will help you” is one I have heard far too often despite being able to point to concrete examples of hopeless cases using these techniques and getting better.
And in the end FUCK YOUR “no evidence”, if I wait for you to get the evidence I will be dead.
I chose this path, as many others have, because there was no other option…

Found in Jerome’s drafts

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I haven’t been so sad lately. I have been too sick to think about the situation. Plus I must admit that having some of the foods that I have missed has helped a bit. But I feel well today (relatively) and it took only the slightest trigger to bring me close to tears. A man interviewed on the news looked like a climber and suddenly all I could think about was the outdoors and the freedom that I have lost. Writing this now my eyes are swimming. It’s the same proceeds I am living over and over again. It feels a bit like groundhog day, I wake to the soulful sounds of my own grief remind me again and again what I had and how little I appreciated it. I can’t describe, despite many attempts, how much I wish I could feel the freedom I used to. I have lost it forever and it makes me so sad, and I can not escape it.

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Exciting future

One of the things that makes it so hard is how exciting and interesting the future is going to be.  I have always been a bit of a science fiction nerd and have enjoyed new technological wizardry.  I have recently become very interested in the idea of integrated computational systems, computer systems that are integrated seamlessly into our everyday actions and thoughts.  Its an area that I find fascinating and a bit worrying.  Now that it looks like such systems are only 10 years away it is just another reason that I start to get angry that it looks like I will not live long enough to see or, preferably, get involved in such developments.

It is just one of the many many reasons I find I am so angry.  Not as bad as knowing all the cliffs that are out there that I am not climbing but still pretty annoying 😛


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For the record I am still alive, just generally un enthused about blogging. I have been thinking a lot about perception, or lack of, after death. Like dividing by zero, your dead so how does one perceive the rest of eternity.  We have before we were born to compare to, and if it is like that then there is just nothing. However now we have a consciousness that has been developed, will this make a difference?. Obviously I have no idea, but that has been on my mind a lot.
The chemo is still working ok. I feel pretty bad a lot of the time. The anti nausea meds make me really tired and don’t even work that well.
Nothing else to report, hope everybody else is well.

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Very Quick Update

I have not written much in the last little while because I have been feeling pretty bad.  I never felt this bad during chemo the first time around.  Not sure why this time is worse but it has been much much worse.  I have been struggling to get many times during the day when I feel normal in any way shape or form.  It is possibly because the disease is so much more advanced than the first time I went through chemo.  This time so much disease is being killed and releasing all the nasties it harbours into my system that my body is struggling to cope.  Hopefully that it is at least doing some good.  We can only hope.

If I don’t post again for a while it is because I am still feeling under the weather.  Hopefully feel up to a proper update soon.  I also have a few longer works that I am half way through.  At the moment there is no way I am going to find the energy to finish them.  Hopefully things pick up.

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Again and again climbing bites deep to the bone and hurts more than I can easily bare.  It is a new feeling, this loss without solution.  Throughout life I have come across loss, and I have never dealt with it well but I always fixed things somehow.

Now though I am better at dealing with grief and loss but there is genuinely no solution, and the problem, although it may seem small to many, really gets to me.

I see a picture, I remember climbing, the fact that I can no longer do it sits in my mind and grows.

I try and think of a solution, a way of reducing the pain.  But there is no solution.  I can not climb any more.

I sit here, impotent and hurting with nothing to do.  My mind, in desperation, turns to what must be an evolutionary trick, desperate violence.  I will take on impossible odds to get this thing that I have lost back.  So, angry and sad and hurting my logical mind restrains my instincts; I do nothing.

I am so angry at this loss that I want to break everything within sight, I want to smash everything and anything.  The destruction I would wreak on anything that stood in my way back to health and climbing would be biblical.

I want a solution.

But there is none.

Often I am ok with this.  Sometimes I don’t think I could be more angry.  And it is always climbing that brings it home.

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3 years

So, I won’t write much as I am fairly busy today, but it is a fairly important day that I feel the need to note quickly.  It is three years today since I was told I had a tumour in my abdomen.  It also notes the first time I have been sick for longer than not while dating Amelia.

I am not sure how exactly I feel about these things.  Clearly they are tempered by recent developments with the disease any my outlook.  I think it is impossible for me to view things in the same way that I could have 2 months ago.  I am proud to have survived three years.  I do think that my actions and attitude have had a great influence on my survival.  I am also incredibly proud and grateful that my relationship with Amelia has only become stronger through the struggle.  However I see what this disease has done to the people around me, especially those closest to me and it makes me very sad that it has now been happening for so long.  Obviously the alternative (that I die) is not one that I intend on taking up any time soon, however I can’t help but feel sad at how much damage something so small has managed to do.

Anyway, you know how it is, places to go people to see.  Hope everybody has a great weekend.

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Random nighttime thought

This is really random but I can just not understand the actions of people with HIV/AIDS that consciously infect others. Even if there is no malicious intent, just general disinterest in the person you are infecting. In my case I get a certain amount of satisfaction in knowing that in killing me this disease is ultimately destroying itself. Allowing it to pass on to someone else is like the ultimate defeat. Even as an IV drug user I would be so careful just up make sure that it stopped with me. br
Pretty random thought but what is a blog for if not to propagate whatever I am thinking, quickly, to people who I can only assume hang on every word. br
On that theme I am writing a short story. Two pages so far so its not about to hit the press however I find that if I mention stuff like this early I have an incentive to get off my arse and get stuff done. I suspect it will not be a best seller, its really just me letting my imagination run a bit. Seeing as I have no background in english at all (a slight understatement as anyone who tried to understand anything I wrote until I was 15 knows) we will have to wait and see how it turns out. But I am enjoying having something very small to do. br
I was also thinking if renting a nice cart and driving down to the coast with Amelia but it seems really hard to hire anything in canberra that has even a hint of “nice” in its nature. So if antibody is good at stealing nice cars let me know. br
Wow, random post. Sleep well folks.

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