Hey Abby,
Many of us have heard some very similar lines. Personally, I’d turn many of the statements around, putting it back on the them. For example
"My hope is that you are correct and I will be recovered by then BUT if I am not fully recovered and only inform you the week before it will leave you scrambling to find a teacher to cover my students. So, out of respect I’m giving you forewarning that I’m having major surgery. If everything goes to plan, I’ll be here on the Monday and if not, you are aware why. I do understand the difficulties involved for you, but please understand the difficulties I maybe trying to manage too.
“My hope is that I don’t need any assistance at all BUT if I do, I’d like to have such assistance in place prior so that I’m not trying to manage my symptoms/recovery AND trying to sort out supports during that recovery…” And I think it’s the same with driving. We all hope/wish/pray we will bounce back really well. I didn’t have a problem with the ‘driving’, but light flashing through the trees whilst driving down the road was a big issue. I’m out in the country and traffic here is minimal, but in town driving was totally different. You’ve got vehicular traffic, you’ve got pedestrian traffic and you need to be able to react in a milli-second if someone steps off the kerb and you need to be very attentive when in control of a vehicle. Initially, I found I could drive the 20minutes to the local shops but then find by the time I’d finished shopping my symptoms would often overwhelm me and I couldn’t drive home safely.
It’s not like I can say ‘At 2pm I will be symptomatic…’ or ‘If I do ‘x’ activity for only an hour I’ll be OK…’ I don’t know when it will strike, I don’t know at what intensity my symptoms will present. I can’t say what my ‘triggers’ are going to be today. I just know that at some point I’m going to need to manage it all and whilst you are learning what works (and what doesn’t) for yourself it can be beneficial to have a backup person. Like I’ve said to others '…You might bounce back relatively unaffected, but if that’s not the case having some sort of backup can be beneficial.
Personally, having another person with you for appointments isn’t a bad thing, in fact, I’d recommend it. At the neuro appointments I always take a ‘support person’. These appointments can be VERY overwhelming sometimes and although I am attentive to the dr, the things I may miss the ‘support person’ may remember or pick up on. It can be emotionally overwhelming, I had a real battle accepting I needed ‘brain surgery’. “That thing in there, that’s my brain. That’s what makes me ‘Me’ and you want to do WHAT???..” Some medicos make out it’s not a big thing, and for them, yea sure, they do this sort of thing every day, but for you and I, it just ain’t that simple. My thoughts were running at a million miles a second, the surgeon was talking but my mind was trying to process the shocking reality of it all. Having that support person, they picked up on pieces of information that my mind missed.
We, the patients, have very little to nil control over scheduling, that’s all up to the surgical team. The idea that we can simply ring and change the date, often that simply is not possible. At one of my pre-operative consults I was told “Call us on Tuesday and we’ll clarify the date/time then…” I called on the Tuesday to be told I’m supposed to be in the hospital NOW, for surgery TOMORROW 
. and it could NOT be changed. I was at work when I called, so it was a mad rush to get everything setup and then get to the hospital.
Neurosurgery is unlike any other surgical procedure. Some people do not understand this, hell, I didn’t understand it myself prior. I’d had numerous surgeries before and thought this would be the same. It was not. I’ve tried to explain it all to others and they often get this ‘glazed over look’. I have found some are unable to comprehend it, but this is about you, not them and you NEED to look after you.
Merl from the Modsupport Team
