I had a chat with an acquaintance of mine not too long ago. We have one thing in common, but for different reasons, we’ve both had brain surgery. Therefore, it would set us apart from the rest of the “normal” people around us. We both don’t handle noise very well and therefore dislike an open plan setting to work in. We both have memory issues after our surgeries but as he put it “I prefer that others don’t know”, whereas I have no problem telling people that.
It would appear that even though we share the fact of having had brain surgery, we have many differences too. He was diagnosed with a tumour (non-cancerous), which has since been removed and in all likelihood has been “cured“. I have Hydrocephalus for which there is NO cure.
While we were chatting one day, I thought it was great that I had someone who could relate to my challenges and, with whom I could share things and know that he would just “get it”. That was up until we had a chat about post-surgical care. I’m of the opinion that an MRI (at least once a year) is a good way to keep track of my situation (mostly for my own peace of mind). I personally would prefer a proactive approach in my medical care to a reactive one (I know that’s asking a bit much with this condition but, one can be optimistic). He, on the other hand, feels that after 5 years, there’s no further need for scans because then you’re essentially “cured”. I found myself explaining very quickly that that would be absurd and a gross disillusionment, especially in my case. “Why?” he asked emphatically. “Well, because there is no cure” which was met with a simple “Oh, right…”.
The defining fork in the road for us.
I couldn’t help but think how “lucky” he is to have the option of knowing he’s been “cured”, that his surgery to remove a growing tumour was successful enough for him to not worry about it as much. I suppose the possibility of it coming back still exists too but at the coal face, Hydrocephalus simply is not the same in comparison.
After my last post, it’s pretty clear to me that Hydrocephalus is definitely at the bottom of the Neurosurgical food chain. Tumours will outweigh the odds at any given moment and quite simply demand a quicker response and action. It doesn’t mean that this condition is less important or that delaying treatment is much of an option…at the very least, it’s probably more important to the person living (physically) with it, than anyone else. So many people with Hydrocephalus, who seek medical help at Hospital Emergency rooms, are sent home after “successful” pain management despite needing surgical intervention at that point in time.
I wish I could relax about this condition, about the fact that I’ve been surgery free for the last 8 plus years. But the truth of the matter is, I don’t have that luxury, none of us does. And, just like anything else in life, no one knows when their time is up.
We live, we learn, we cry, we laugh…we wake up to a new day and, do it all over again – until we don’t.
As much as I envy people like this acquaintance, who can walk away from his tumour removal and pass a clear scan 5 years later, I don’t. I don’t know the hell he had to go through to get to that point (well, maybe I understand it better than the next “healthy/normal” person). Regardless, we are all in this life together and take what it throws our way – we do the best we can.
A tumour or Hydrocephalus I can’t really say I’d choose one above the other but having a “cure” would simply be…priceless!