Non-PBS Nightmare

I found out today that it's getting hard for me to get my Robinul (Glycopyrrolate) at the PBS rate. At the moment, the palliative care people are doing all they can.

Without this vital drug that increases my quality of life massively, being on the PBS it costs $35 a day. That's a LOT when you're on a pension.

Time to lobby my local MP to get it on that list.

Without glycopyrrolate, I produce too much saliva, which given the hole in between my stomach and lungs, means I spend all day coughing it up through my lungs. Not pleasant at all and literally life destroying.

Here's my call for Glycopyrrolate to be added to the PBS ASAP.

Disappointment and Hope

We went to see the oncologist a week ago today to get the good news that since my lung infections have finally cleared up that we could start the magical mystery tour of another round of chemo that would of course have saved me. The truth of course is never as simple as we'd like. He said that the chances of infection coming back whilst on chemo were reasonably high and that as you can't just turn the chemo off like a light (it keeps on working for six weeks after you stop) chances are, that any infection if it returned to my lungs could be fatal. If that wasn't sobering enough, the "success" rate of chemo at my stage is really only 20-30%. In an almost cruel twist of fate, success here isn't defined as a cure, but an additional two to three months of increased life expectency. Woo hoo!! That can also mean two to three months of diminished quality of life given what a "boost" chemo can be to your sense of welll-being. For me, at this stage, I think exploring some alternatives might be better than resigning myself to a slow, inevitable decline into death. On Friday, I'm going to see a new doctor in South Yarra who has been recommended by my cousin's doctor in Sydney. He works in both Western medicine and Chinese herbal medicine, so understands the interactions between the two. I've heard that combining chemotherapy with traditional Chinese medicine is practised widely in China, so has a long history of clinical studies and applications. It's said that it greatly boosts the efficacy of the treatment and can give patients a much better outcome than chemotherapy alone. One door closes, another door opens. It's getting hard to ignore the reality that I do officially have a terminal form of cancer. Most of my medical team have told me that it will beat me within a year. I've said before that I'm not worried about dying myself, but the horrible grief that loved ones go though upsets me much more. That said, there's still too much left in life to live. I need more than a year,and I need that time to be relatively healthy, so I can actually do these things. I want to travel, I want to create a business that will outlast me and help to look after those I leave behind. A legacy, I guess. Hopefully, this new doctor will have some fresh answers and an optimistic attitude. The pessimism, (or is it just realism?) is a real downer and I'm sure can't be helpful when you're trying to remain positive. Wish me luck!