Posted on November 10, 2015
I so thought that I would be a five year survivor.
I so thought that I would beat the odds.
I so thought that I would see oncology appointments again where the oncologist would say “Everything is shrinking really well Julia” (gosh it has been so long since I have heard those sweet words.)
I so thought he was going to be wrong about the 2 years optimistic prognosis.
I so thought that I would always been able to find a way to live well in the midst of all this promise of death.
Today has felt like the hardest day I have faced so far. I am losing HOPE so fast, with everything pointing to me being, at, well, the pointy end of my treatment, and the decline, slow and steady.
This mornings return to the chemo ward was me very much someone who was pretty over it. I’ve never felt confident this treatment is working. Blow after blow. Lung tumours with no shrinkage after 3 cycles of the new chemo. Knowing that my liver pushes just that little bit more into my ribcage. The little bit of light that I had on the horizon, even though the oncologist said that there was no great significance to it, was that in two cycles of chemo at 75% dosage due to my abnormal AST levels (the liver function most affected by chemo), my levels improved that much (a month ago they were only 36, which is one point above the higher level of normal) that at cycle 3 they were able to give me the 100% dose. That felt like such a victory, but after it, along comes a blood clot and a couple of weeks of terrible unrelenting pain. And a missed chemo cycle. And a new fucking picc line that went in yesterday the deliver a couple of cycles of chemo that is in such a fucking ridiculous position in a vein along the side of my arm that it just makes me want to rip the thing from my arm and scream “ENOUGH”. And this mornings final blow, AST levels at 60, which is the highest my AST levels have ever been in 23 months of battling cancer. This earned me another drop to 75% dose, and the loss of a little of what has kept me alive. I just can’t see it any more.
A beautiful friend from our bowel cancer group, Oriana, passed away yesterday from this dreaded disease. Despite Oriana also living in Melbourne, we had never got around to meeting. But when I say she was a friend, she WAS, despite us never having clapped eyes on each other in person. If you guys think I am doing well at maintaining a life and a degree of hope while facing this disease, well you would have loved this woman. She had it all over me in SPADES. She was diagnosed after me and her disease was always aggressive. But she NEVER gave up hope, never even seemed to waver. She researched new treatments, took care of herself holistically while still accepting all the mainstream treatments that were on offer to her. She took blow after blow, after blow, with so much courage. Always looking for the next thing, for the next bit of hope, for something that might give her longer with her beloved family. Just a couple of months ago the cancer appeared in her brain (a relatively uncommon spread from bowel cancer, but it does happen), and the tumours were removed as they were interfering with her speech etc. Just a few hours later she was posting from the ward, her head in a bandage, a smile on her face. She was SO incredible that even though we knew the options of any further treatment had pretty much run out for Oriana, it totally blindsided us all in the group when we found out that she had passed away. Because I think we almost thought she COULDN’T. It just doesn’t happen to someone.like.that. Except it does.
Today I have been crying for 6 hours. I started when I got the news about the AST levels (I didn’t ask about the other ones, didn’t want to know, but I had to know about this one, as if I have a big sign on my pump that says DOSE REDUCTION, then I know something is going on), and it basically hasn’t stopped since. It’s so rare for me to cry, they have only seen me have a small teary in the chemo unit in all this time, but today I just full on howled my way through the whole day. I didn’t have anyone with me, and I don’t think that is something I am going to do again…even though it feels awkward when people are there and have to comfort me, I think I will have to take someone with me from now on, to help me through these bits of news. Everyone else on the ward (all the chairs were full, they always are) had people with them, and all THEIR people were coming over to comfort me, as well as all the nurses who were a bit staggered and said this was not like me at ALL. Nobody knew where to look with this sobbing woman in their midst, and I felt for them all but the tears just wouldn’t stop.
I have a scan of my liver next Tuesday, results Wednesday. Maybe there will be some miraculous response in my liver and all the pain has meant nothing and it means nothing that my liver is struggling and levels in my blood are being pushed up. But pardon me if I am finding it hard to go there, and even imagine that. My mind, my heart, my body is weary of all of this.
I am just SO TIRED. I’m tired of fearing every blood count, every scan. I am tired of waiting for my oncologist to say the words “there is nothing more we can do”. I’m so scared of that day. I am EXHAUSTED at the trauma of wondering when I will leave my children and my Gaz EVERY TIME I LOOK AT THEM. Every time. I’m even fucking tired of wondering whether to bother watching A Place to Call Home, when it is very doubtful I will live to see how it all ends up. Will George and Sarah end up together, raising their baby? Will Dr Nordmann’s surgery be successful? Will Olivia fuck any more travelling artists? Will Roy even progress to a beer glass, or will he always drink everything out of a jam jar? And will he end up with the endlessly scandalised Doris Collins. Who the fuck knows? Chances are I never will.
I suspect I will be quiet for a short while. The hole is deeper this time, the climb out is going to rip off my fingernails. But I will be back to tell you about the results, when they come.
A friend of mine put this on my Facebook wall yesterday. If waking up and fighting the same demons day after day, night after night means you are brave, then I guess I am. But I don’t feel it.