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
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.