Life is 10% what happens to me and 90% how I react to it. ~ Charles R. Swindoll

Tick tick tick... I'm still waiting.

Inside my head is a ticking time bomb. It may be like some of those very old bombs discovered from WWII which landed and never went off. Or it may rupture at any time. I have no way of knowing, and no way of doing anything about it. The ones who can do something about it, who gave me the stats and scared the hell out of me and who advised me to go on the surgery waiting list now seem perfectly content not to have any contact with me, to just let me plod along wondering what will happen first - will I hear from them or will this damned thing rupture?

It has been 150 days today since I was diagnosed. The fact sheet I got when I signed the surgery consent form gave a long and scary list of possible risks of the surgery procedure, including infection, bleeding, heart attack, stroke, brain injury, memory disturbance, epilepsy, numbness, loss of vision, meningitis, coma, death. So it's not your every day cosmetic surgery, this is serious stuff. So why, after signing to go through this life-altering procedure, are we left without any support whatsoever apart from the support we, ourselves, find? How do we react when we don't have the details about what is to happen to us?

Most days I am happy to plod along. I have plenty to keep me occupied, I have a future that I am planning, and a sea change to work through for a whole heap of other reasons. But just occasionally the plod seems to be far too slow and I just want this thing (these things, I keep forgetting there are two in there!) dealt with.

I take heart from survivor stories I read, and conversations and support from the two Facebook support groups I found - Australian Brain Aneurysm Support and Awareness and Brain Aneurysm Support Australia. I spend a lot of time with Dr Google, despite the doomsayers advising not to. Hey, I already know what I have, it's not like I am looking for an ailment to match symptoms. What I want and need is information - sadly lacking in this country unless you go looking for it.

I have met too many people who have no idea of the potential outcomes of a ruptured brain aneurysm. People who are diagnosed with something which may potentially be life threatening have a right to know at least the barest of details, yet even those weren't provided to me when my little sucker was first found. It is my goal in the not too distant future to have at least a basic information sheet in every radiology department, doctor's waiting room and hospital information area. Family and friends of a person diagnosed have a right to know what to do in the case of an emergency situation.

There are many little details that many people don't give a thought to even after diagnosis, because there is no urgency placed on the situation by the medical profession. If they aren't worried, we reason, why should we be? (Funny how the urgency changes relative to the presence of private health cover.)

For your own peace of mind I recommend you do these things:

• Put an ICE (In Case of Emergency) contact in your mobile
• Make or update your will
• Advise friends / family / work colleagues of your diagnosis so they have at least some idea of what to do if an emergency does occur
• Check the beneficiary details on your life insurance
• Make a copy of your diagnosis letter with your ICE details added, to carry with you at all times in case of emergency - if you can't speak for yourself your letter will tell emergency crews what the potential emergency is

This list is not exhaustive, but it can be the little things that you do to help yourself that help you to feel less nervous and unsure.

I don't have control over the 10% of my life that, according to Charles R. Swindoll, happens to me, but I have a lot of control over the 90% that is my reaction.  I will continue to be proactive to try to make the best of my situation, but my patience will only stretch so far. Perhaps my 2014 resolution will be to annoy the crap out of someone until they start seeing that patients are people who deserve the respect of communication - even those of us without private health cover.

So much of control is not authoritative action but mindful waiting. ― Cameron Conaway

When your aneurysm is diagnosed and you sign the form to go on a surgery waitlist, you begin a whole new journey. Only those who have ever been on that journey can fully understand it.

I find it perversely amusing that they call it "elective" surgery, as if you really have a choice about whether or not to potentially save your own life. It's a Catch-22 choice. One wrong move by a surgeon and we may be damaged for life. But too late and it ruptures and we may be damaged for life or dead. So we sign the form and we wait.

And wait. And wait.

I found an extremely good article written in 2009 which so accurately expressed so many of the emotions I feel daily as I sit and wait for my surgery. And wait. And wait.

Anger, irritation, frustration, uncertainty, "existential concerns about fear of mortality and a degree of urgency". Nothing unreasonable, when you think that an aneurysm lurking in your brain can rupture at any time, for any reason, and even the experts can't predict it.

A craniotomy is not minor surgery, no matter how common it becomes for those who perform it. The patient may only ever experience it once - a few may go through it twice - but this is our BRAIN you are drilling into and digging around in, the thing that controls every movement, every thought, every emotion, all our senses, intuition, speech - everything about us. We have a right to be concerned, angry, frustrated, uncertain. We also have a right to expect fair and reasonable treatment and support and communication, yet we know that, often, someone deemed more urgent or someone who has private health cover when we don't will get pushed in ahead of us, and that rankles. No-one wants to feel less urgent, less important, especially when we live daily with the potential of rupture and the known possible outcomes of that.

I have often wished I had never been diagnosed. It would have been so much easier not to have to deal with the emotions, the constant, nagging worry about every headache, every forgotten word, every missed step, the unwelcome taste of blood in my mouth, whether phantom or not. But I can't change what is, so I wait.

And wait. And wait.

Mark Trautwein, diagnosed with AIDS in 1982, wrote a great piece for the New York Times in 2011, acknowledging that while he has spent half his life knowing he might die, "...the constant companionship of plague has taught me that life is about living, not cheating death... I haven’t died on schedule, and I’ve been learning not to live life on one either."

I am trying to live my life as if I don't have that constant threat of rupture and the consequences. I am cramming more into my days than ever before, so I don't have time to worry. On top of all the other crap in my life at the moment, I don't need that as well.

It's damned hard, but I'm still alive. That's worth celebrating.

The causes of events are ever more interesting than the events themselves. ~ Marcus Tullius Cicero

Until very recently I had not heard of a Pipeline Emblisation Device (PED) for intracranial aneurysms, probably because it is a very new procedure and not well known in Australia. According to available information, the PED is specifically for wide-neck aneurysms which are not easily treatable by other methods.  While PEDs have been used in Europe since 2009, the USFDA only gave approval in the USA in April 2011. The FDA page gives very good information on the device and its intended use, however, it was still being called “new” in a December 2012 report in News Medical. EV3, an American company, provides an information booklet specifically on the PED which is excellent information for anyone diagnosed with a wide-necked aneurysm.

In Australia, while the PED procedure is being used, the Department of Health website notes it is still awaiting the draft DAP (Decision Analytical Protocol) from the “applicant”, whoever that may be. Certainly, that seems to be a lengthy process as evidenced by the Department of Health information on “Deadlines for a proposed decision analytical protocol”. Coviden, a US provider of the devices in Australia, only published final testing results in the US in June 2013, noting that “Investigators compared the Pipeline device to historical controls because no other blood flow diverting devices are available in the U.S. Effectiveness of stents has not been proven to FDA standards; and outcomes for surgical or other endovascular treatments have been suboptimal.” It is a little scary to read that in SA the Therapeutic Goods Administration (TGA) has issued a safety alert (although not a recall) for monitoring of aneurysms treated with PEDs in persons in aged care, a reminder that this procedure is still very new.

Overall, though, if you have a wide-necked aneurysm and are faced with the fact that traditional methods don’t historically work well with those, the PED is a light at the end of a rather bleak tunnel.

The US-based Brain Aneurysm Foundation has an exceptional booklet available on all aspects of aneurysms. In the absence of a similar resources in Australia, perhaps this booklet should be made freely available to every person in Australia who is diagnosed with a brain aneurysm, along with a list of Australian support resources, so others like me do not have to struggle to find the information which we so desperately need.