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.

Be kind, for everyone you meet is fighting a hard battle. ~ Plato

Good thought, Plato.  Of course, some people are fighting harder battles than others, but it's all relative really.  Who is to say that my battles are more or less important than someone elses?  And yet, that often seems to be the case, in my perception.  And perception and perspective are all we really have to base our feelings on.

So this post focuses on my emotions, because, let's face it - when you are thrown such a huge curve ball in life, there are definitely emotions attached.

In my previous posts I mentioned some of what I have felt since first diagnosis - numbness, anger, self-pity, acceptance.  I'd like to put each of those emotions and many others that have flitted through me in the past two months into the context of my life at this time.

It's been a pretty crap year all round - marriage breakup in January, moved out of the marital home in April, expensive car repairs also in April, so the aneurysms were just another crap thing I had to deal with.

Numbness was my first emotion.  When the diagnosis was sprung on me, with no support person offered, it was like a punch to the solar plexus.  Certainly, I had little wind left in me as I sobbed inside the CT scanner.  This is a huge failing of the health system.  Maybe, to them, an aneurysm is a daily occurrence - to other people, it's all sorts of things, mostly bad.  To me, it was a bolt out of the blue that had/has the potential to change my life. 

Graphic: https://sites.google.com/site/newalbanytheatreboosters

Anger followed close on the heels of numbness.  Anger that my body was letting me down yet again. Anger that the hospital system was treating me as if this was nothing unusual - to them, it's not, but to me it most certainly is. I'm a great believer in keeping people in the loop when something directly affects them.

Fear closely followed anger.  This was my head, FFS. Something foreign in my head that I knew very little about and could do even less about. I resolved much of my anger and fear by Googling information.  If I couldn't get information and empathy from the health system - including my own doctor - I would do exactly what they recommended I did not do, and look it up.  The sites I went to are all very reputable and specialise in brain aneurysms.  What was not to believe? As it happened, subsequent information from my neurosurgeon confirmed what I had Googled anyway. By knowing more about aneurysms in general, even though there are no restrictions placed on me, I have been able to take steps to ensure that, should the worst happen and the little MF rupture, I have the best possible chance of survival.  For that reason I carry with me at all times the referral letter which describes my condition, so in the event that an ambulance is necessary they will know what is required for treatment.  My phone has my ICE (In Case of Emergency) details, and my insurance details are up to date. When I know that rupture can lead to death in far too many cases because of lack of awareness of a pre-existing aneurysm, why wouldn't I take those steps?

Once I had found out enough information to satisfy my natural nosiness, I felt acceptance - a great calm come over me.  I knew there was absolutely nothing I could do about this situation, the damned thing was there in my head and wasn't going anywhere, so just deal with it.  This short time of calm was the best I have felt since the start of all this.  It didn't last long enough, not from wavering acceptance but due to ongoing external pressures.

More anger, unrelated to the actual aneurysms but certainly related to my overall stress levels, arose due to some employment issues that cropped up not long after my angiogram.  At this stage I must mention the gratitude I felt for the PA Hospital staff who performed the angiogram and looked after me in recovery.  Very professional, very empathetic - and good comedians to boot. 

I suddenly found myself, for reasons I won't go into, unemployed.  The day after that bombshell I met again with the neurosurgeon, to be told they had detected a second aneurysm, and the first one was bigger than they thought.  Disbelief, acceptance, uncertainty, in quick succession.  Resignation was the emotion of moment when I signed the surgery consent form.  Yes, I could have decided against it, but realistically, was there a choice?  Live with a ticking timebomb which may or may not go off in my lifetime, or get rid of the sod(s) as soon as possible.  No contest.

Being on a surgery waitlist is fraught with its own problems, as far as my employment is concerned.  Who would want to employ someone who might just need 2-3 months off at any time?  Yet I couldn't not tell a prospective employer about it - non-disclosure could cost me my job, if I got one. 

I approached a job agency in my suburb, not realising they were connected to Centrelink.  In order to use them, I was told, I had to apply to Centrelink.  Off I toddled.  Big mistake - HUGE mistake.  I am a Kiwi.  I have not lived here for 10 years, even though I have worked since pretty much the day I arrived.  I am not entitled to any sort of assistance whatsoever. The woman who told me this had no empathy at all, didn't care that by then I was sobbing my eyes out, pretty much affirmed that they wouldn't help me even if I was to become homeless.  Wow, lots of big emotions, one after the other - embarrassment (that I was crying in public), disbelief (that someone could be so cold), anger (that I have paid taxes for 8 years and am not entitled to anything, even though Aussies can go to NZ and get assistance from Day One - but that's another blog).  I felt very lost and alone, even though I have the most amazing group of friends and family.

Those feelings weren't helped when I contacted the hospital to see if they could give me any indication of timeframes for surgery. When I had signed my consent form, I was given to believe that the timing would be a matter of weeks.  Now I was told it was probably months.  Now I felt resentment - at a stupid system that can move people with private health cover ahead of those without, a system that still doesn't recognise or acknowledge that something like an aneurysm, to the person who has been diagnosed with one, is like an invader that you just want rid of.  No emotional support, no empathy.

People keep telling me how strong and resilient I am.  I am not sure about that - maybe I am just dumb enough to keep getting back up when things knee-cap me, because it seems every time I get up, I get knee-capped again.  Anyway, I bounced back.  As you do, if you want to stay sane.  I decided to update my blogs (I have three) and start looking for freelance writing work. I am very privileged to have met a wonderful young woman who is the franchisee of TEDxSouthBankWomen.  She and her family have been very supportive of me all year, and when I saw her very recently she suggested a few sites I could look at and a few writers I could follow, and recommended I get on Twitter - which I had avoided until then.  I took her advice.

Once again I am back to acceptance, and am feeling a lot more upbeat about my whole situation.  I know that the emotional cycle will continue, probably right through until I finally get to surgery, if not beyond, but I have the information and support I need to fight it. And I'm doing okay at that so far, with a lot of love and support from wonderful family and friends.

We are more closely connected to the invisible than to the visible. ~ Novalis

The aphorism I chose for this post so closely described the events of the 2 September, when I went back to the neurosurgery department for the results of my angiogram.

Seems I had not just one, but two aneurysms.  And the main aneurysm was larger than they had first detected.  I guess that's exactly why they do the angiogram, it gives a much more detailed picture of the situation.

The registrar discussed the options available for treatment.  Basically, there are two main methods - coiling or clipping.  For a saccular aneurysm such as mine, clipping is the usual method.  This is an invasive procedure which requires a craniotomy - brain surgery.  The alternative, coiling, uses a procedure very similar to the angiogram (see previous post), and platinum coils are fed into the aneurysm via a catheter. 

In my case, with saccular aneursyms, they would be looking at clipping.  The Brain Foundation website (USA) has some very good information about this procedure, which is probably just as well because it looks and sounds damned scary!  This is my brain they will be drilling into!

As with any invasive surgery, there are risks.  The registrar walked me through it all, and gave me a copy of the Consent Information form for "Craniotomy and Clipping of Cerebral Aneurysm". The principle risks include infection, bleeding, heart attack, stroke, long term brain injury, memory disturbance, fluid leakage around the surgery area which might necessitate further surgery, epilepsy, numbness or pins and needles, loss of vision, meningitis, coma and death.

Wow.

Ultimately the decision was mine, but I had to weigh the options.  During my first registrar's appointment I had been told that I fit the bill nicely for surgery - right sex, age, location and type of aneurysm.  I could do nothing and never have a problem. But then again, it could rupture and I could lose vision and speech or possibly die.  They would recommend surgery. 

Some decision.

I signed the consent form and went on the waiting list for surgery. 

What we anticipate seldom occurs; what we least expect generally happens. ~ Benjamin Disraeli

When you first start on a journey of discovery into aneurysms, you really have no idea of what to expect.  You may have some knowledge of aneurysms - especially if you have known someone with one (or two, or three), but considering the percentage that do rupture even before one is detected (see previous post), it's probable that the person sitting next to you with one of these little MFs in their head (or elsewhere) knows as much - or as little - about them as you do.  In fact, they quite probably don't even know they have one, and won't until that headache or CT scan or general dis-ease changes their life.

The next step in my journey was a cerebral angiogram.  Having previously received very little information from anyone, I now got quite some fairly good, if basic, information from PA Hospital regarding this upcoming procedure.  The Diagnostic Radiology department sent me a patient information guide which told me this was a "minimally invasive procedure" which is a day procedure only (i.e. no overnight required), required more stuff poked into my veins and arteries, and after which I would need to lie flat for a couple of hours, would not be permitted to drive home and should have someone stay with me overnight. 

Because I am an inquisitive (read: nosey) person, I went back to Dr Google to get more information - and, of course, to be able to share it with all you lovely readers.

That search led me initially to Dr Wiki, where I was informed that a catheter is inserted into a main artery (in my case it would be into the femoral artery in my groin) and "threaded through the circulatory system to the carotid artery, where a contrast agent is injected. A series of radiographs are taken as the contrast agent spreads through the brain's arterial system, then a second series as it reaches the venous system." 

The American National Health Institutes website gave a much more detailed description, including some matters - anaesthetic, cleaning - which would become very relevant to me during the procedure.

On 23 August I duly rocked up to the hospital, knowing a bit more about the procedure but not really sure what to expect for me personally.  First step was a blood test.  At 7am there were a surprising number of people already waiting, and many of those, it seems, were cancer patients who were regulars there. 

I very quickly found out that the clinic takes people strictly in the order of arrival, and "arrival" is determined not by when you actually get there, but by when the receptionist gets your appointment letter to check off.  If the gate of the clinic is down, as it was, you hang your appointment letter on the gate and she will retrieve it and mark you off.  Three or four people who arrived, physically, after me were seen before me because they knew the system while I sat there with my appointment letter in my hot little hand until I twigged.  Not fair PA!

Onwards to the Diagnostic Radiology department ("Follow the yellow brick road"... okay, not quite, but there are painted lines on the floor) where I was only the second person in the waiting room.  I only had a short wait before a nurse came to insert a canula into my hand.  I was directed to the changing rooms and given one of those beautiful hospital gowns which reveals so much, and a basket for my clothes, and taken to another waiting area. 

Again, the wait there was short, and I was laid on a gurney and wheeled into the procedure room, where I was transferred to the flatbed of the imaging equipment.  It was cold - very cold - which, given the amount of massively expensive-looking equipment in there, was probably essential.

The assistants began sticking patches all over me to which leads were attached so I could be monitored on the ECG throughout the procedure.  My lower abdomen and groin area was swabbed with disinfectant - also very cold - and I began visibly shivering.  The wonderful lab assistants laid a heated blanket over me and I can't remember a time when I was so grateful for immediate warmth!

The anaethetist talked me through what he would be doing in order to numb the area where the catheter would be inserted.  He injected me and we waited, but I still had feeling so he repeated the process.  And I still had feeling.  So a secondary anaesthetic was given intravenously via the canula in my hand. 

When the cut was first made for the catheter I didn't feel the incision, but what I did feel was a spurt - not just a dribble, but a spurt - of blood down between my legs.  I'm talking "fountain" spurt.  That is one heck of a freaky feeling, and you know that they are playing with a main artery and if they mess up, even just a little, you could bleed out!  They were too good for that, of course - hence I am still here to report!

I didn't feel the catheter being inserted, but the staff talked me through the entire procedure as the x-rays followed it up my body.  Dye was inserted via the canula in my hand, and the huge machine around me took pictures from every angle.

Once the imaging was done the catheter was removed, and a nurse applied pressure to the incision site for what seemed like ages to stop the bleeding.  When they were happy that all was okay, I was wheeled out of the procedure room and into recovery, where I would now need to lie still and flat for 2 hours, and then wait potentially another 4 hours before I could go home.

My recovery time was a lot less than that though.  Apparently they were using a new form of "sealant" on the wound which literally halved the recovery time.  After an hour the nurses were very pleased with the recovery progress so I was allowed to sit up enough that I could have a coffee (even instant coffee is to die for when you have fasted prior to a procedure!) and a sandwich a la breakfast. 

Three hours after the procedure the staff rang my ride home and told him to come get me.

I was supposed to have someone stay with me overnight, but since the only option at that stage was my ex, we discussed it and I felt fine so I told him I didn't need him to stay.   I had an uneventful night and slept like a baby!

Now to wait for the results.

A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born. ~ Antoine de Saint-Exupery

My daughter came with me to the specialist's appointment on 6 August.  I wanted someone else to hear what they had to say, so I knew I wouldn't be over-reacting when I passed the info along the chain.  Over-reacting probably isn't a consideration in a circumstance like this.  When you have something so unknown diagnosed, you simply don't know how to react.

We were pretty much the only ones in the waiting from, which really surprised me considering this is the public hospital system.  Still, it worked definitely in my favour because I was quite calm when we got into the NS Registrar's office.  He was friendly and informative, and laid out the usual situation regarding cerebral aneurysms in a person my age.  Turns out that - contrary to what society thinks - 56 is "young" for an aneurysm, hence they prefer to treat those over 5mm in order to give the best recovery advantage.  (My daughter thought it was highly amusing that I was considered "young"!)

There were plenty of not-so-good stats as well, confirming to a large degree what I had already Googled.  The odds of a brain aneurysm rupturing may not be high, but that is more because they don't know enough about the cause of them at this time, despite such advanced medical treatment available.  The odds increase with age, but size is not necessarily a factor - some very small ones can and have

ruptured.  This is the bit I found the scariest:

• 20% of those with a rupture will not make it to a hospital.
• A further 20% will make it there but die before they are diagnosed.
• Of the remaining 60%, more than half will have some residual detrimental effects - such as loss of vision, speech, etc (similar to stroke).
• Only 1 in 5 whose aneurysm has ruptured will have no adverse effects at all.

Not good survival odds, but I have no control over them.

I asked about restrictions - could I fly, specifically, as I had a trip back to visit friends in NZ booked.  No restrictions, he said - again, for the simple reason that they don't know enough about why some rupture and many don't.  No point in placing restrictions on something that you have no idea will ever happen.

So, the next stage is a four-vessel angiogram to "better clarify the aneurysm".

Time to ask Dr Google about that procedure!