You never know how strong you are until being strong is the only choice you have. – Cayla Mills

Today I received a letter from the hospital asking if I wanted to be placed on the “short notice” wait list.  That means, apparently, that I could be called with minimal notice (I elected 48 hours so I have time to organise care for my dogs). I am very hopeful that this letter is a turning point which might mean I am closer to surgery.

Being the Curious George that I am, I googled “short notice surgery wait list”, and found an interesting list of documents from the various state health areas on surgery wait lists in general.

The "Elective Surgery Services Implementation Standard" from Queensland Health is 18 pages, and lays out the procedures for admitting a patient to a hospital surgery wait list, including categorisation of the condition for which the surgery is to be scheduled.

• Category 1: Admission within 30 days desirable for a condition that has the potential to deteriorate quickly to the point that it may become an emergency.
• Category 2: Admission within 90 days desirable for a condition causing some pain, dysfunction, or disability but which is not likely to deteriorate quickly or become an emergency.
•  Category 3: Admission at some time in the future acceptable for a condition causing minimal or no pain, dysfunction or disability, which is unlikely to deteriorate quickly and which does not have the potential to become an emergency. Admission for Category 3 patients is desirable within 365 days.

I don’t know what category I was assigned, but I do know that as at today it’s 169 days since my aneurysm was found and 108 days since I saw the neurosurgery Registrar.  So I’m past the suggested scheduling dates for both Category 1 and Category 2, which, to my simple mind, means the hospital – or at least, neurosurgery – does not consider an aneurysm has “the potential to become an emergency”.

I find this particularly interesting. I think any aneurysm has the potential to rupture, and I have read survivor stories from people whose aneurysms ruptured at only 5mm.  My main one is just less than 10mm. I have previously posted about the stats and potential consequences if a rupture occurs. For example, “Ruptured brain aneurysms are fatal in about 40% of cases. Of those who survive, about 66% suffer some permanent neurological deficit.” I would think that would constitute an emergency. Based on this, and what the neurosurgery Registrar told me about the size of my main aneurysm and my age, I would therefore consider my aneurysm as "a condition that has the potential to deteriorate quickly to the point that it may become an emergency".

Perhaps the reason aneurysms are not generally treated as a priority category has a lot to do with what I wrote about in my last post, and also what the Registrar told me back in September – that they still don’t know enough about these little things. Which in some ways makes it worse, because it makes those of us on surgery wait lists into guinea pigs. The researchers find out more about aneurysms by examining those whose aneurysms rupture – they had to have got the statistics from somewhere. Sceptical? Absolutely. This little sucker is inside my brain and no-one in the medical profession seems to think that’s urgent. Or is that just because I have no private health cover? (Which is a con anyway, because a friend who had her surgery under private cover still ended up forking out literally thousands for the whole caboodle from her pre-op diagnosis to her post-op care.)

Or am I actually Category 1, but one of many caught up in a health system that is desperately short of money because politicians, who no doubt have full comprehensive top-of-the-range health cover, never see what happens at the bottom of the wait lists? Perhaps I’d best get off that particular subject… for now.

My Christmas pressie to you, Mr Neurosurgeon and Hospital. Being that it’s only days until Christmas, I’ll give you the benefit of the doubt and forget about wait lists for a couple of weeks. Enjoy it while you can and I’ll see you in 2014.

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.