There's an elephant on my face: September 2015

As children, we went on many road trips with our parents and I am sure that, just as my kids do now, my sisters and I often asked the dreaded four-word question: "Are we there yet?" *insert nagging voice here*...... As much as my parents, and now us as parents, dreaded that question, it was and is a natural question to ask. I am going from point A to point B, so naturally, I want to know how long will it be to get to point B, even if this means that I literally left point A, 2 minutes ago.

In the same way, human nature and society tells us that if someone is ill, there are two outcomes. Point B, in the case of illness, is either return to full health or death. It may sound callous, but that is just what we have always known and have come to expect. Chronic illness messes with that concept though. I can definitely say that TN has completely screwed up that premise for me. I did understand the concept of chronic illness prior to this, however, I don't think I ever truly grasped the complete frustration of the person living with that illness and knowing that no matter how many times we ask "Are you better yet?"....the nature of their illness is that they are not going to get better. So to use the roadtrip analogy here....I think I've begun to experience the dreaded four word question now as, "Are you better yet" with the same frustration and, at times, annoyance.

I've stated the following in an abridged version on Facebook this week and have had a lot of time to contemplate how to write this post since I've had my surgery. I know I'm running the risk of offending someone, or maybe a few people with my opinion in this post. However, I will continue to remain true to myself and style of blogging about TN and present you with my reality, the truth with which I live daily.

It's now been 3 weeks since I had brain surgery. A few facts about it, in simple terms:

It was endoscopic transphenoidal surgery i.e. they went in through my nose to the skull base, drilled through the skull and then used GPS navigation, cameras and other tools to perform the surgery.
Surgery lasted 6 hours and the doctors removed quite a large portion of the tumor growing in a very delicate part of my skull.
It is still benign, i.e. has not spread to other tissue other than the skull bones themselves, but is growing.
Scans on the morning of the surgery proved that the tumor was growing much faster than they thought, and putting pressure on the brain itself, regardless of previous treatment and that it was a good thing they went in when they did.
They did not remove everything, there is still a portion of the tumor growing on the side of my head, the part they removed was in the middle.
The portion they removed was attached to major arteries and compressing at least 4 of the cranial nerves. With each pulse of the artery, pressure was being placed on the nerves, hence the random electrical shocks I was getting in my face and eye.
It will take up to 6 weeks for all the swelling to subside and full healing to occur after surgery, that is, healing of the tissue they cut through or on.
I will be needing more treatment to try and manage pain and hopefully the rest of the tumor (medication and possibly more surgery).

Now, getting to the point of my post.
In the past, I was jealous, insanely jealous, of those who were able to have surgery for TN. Because of this, I couldn't wait to have mine done, if only to be able to know that I had tried everything possible to manage my pain. This is not to say that brain surgery is to be taken lightly. It is one of the treatment options available to some TN patients, and has a good chance in many of them to provide up to 80% relief from pain for as long as 10 years. Note, it is not a cure. I was told by the doctors that I had a 50% chance of having relief from pain if surgery was to be successful, especially considering the location and size of the tumor. Not having it provide complete relief is not proof that the condition doesn't exist, neither is it proof that its' all "in our heads - figuratively speaking", as many TN warriors have had to hear post-surgery.

My emotional and psychological state right now, three weeks post op, is one of anger and frustration at the fatigue and pain I have been experiencing. Neither of which is helped by what seems to be the daily "are you better yet" questions I hear. The only way I can begin to answer that is to say that I still have pain. I have moments, like I did before, where it feels as if an elephant is head-butting me in the face, where I can literally feel a knife stabbing me in the jaw, where a fire-poker is stuck in my ear and being jabbed in and out over, and over, and over again.
I don't have electricity randomly striking me in the face, and for this I am grateful. I am able to tolerate, and therefore enjoy, kisses from my girls and husband on my cheek. That is about it.

I am struggling to understand how my honest response to people has been met with statements like "don't worry, I'm sure it is going to all go away soon", "oh, but I'm sure it isn't as bad anymore", "we continue to pray because we know it is going to go away" or " I"m sure once you recover fully from surgery you will be cured." Perhaps it's that "Are we there yet" mentality. Don't get me wrong. I appreciate the support I get and the prayers offered up on my behalf. I love so many of the people who are truly caring and concerned for me. I do not doubt for one minute that most, if not all, of the comments are made with the utmost sincere belief that they are true to the person offering them. I am however feeling as if I am expected to say that I'm better. I feel that there is an expectation of the surgery having been a cure and this expectation is confirmed especially when I see the expression of confusion or disbelief on someones' face as I tell them that I still have pain.

Trigeminal Neuralgia, when caused by a compression on the nerve, leads to damage of the protective sheath around the trigeminal nerve. This is what causes the pain (think of an electrical cord with constant rubbing or pressure on the outer covering until the wires are exposed). Removing the compression is not guaranteed to remove the pain. That nerve has suffered years of pressure and as a result, damage. Medication may minimise pain by decreasing the random firing of the nerve (already proven not to work for me). Again though, all treatments, including brain surgery, are there to manage the symptoms of pain in TN patients, but it can't cure the condition. This is what incurable means. I am not being negative, I am not being ungrateful, I am not suffering from a lack of faith.....I am being a realist. Incurable, that is currently the label attached to TN as an illness. This means that I have had to change my understanding of what the outcome of surgery or treatment may be for me. It means I have to re-conceptualise what Point B is.

Point B may be coming to terms with adaptations in my life and then living in the moment. Point B is likely to change as the years go on. Perhaps I will try to take the trip as it comes. Move from Point A and just keep on moving, forwards, backwards, sideways....who knows. At the end of it all, my TN Point B is not death or full recovery. I know that. I just wish, so desperately wish, that the chorus from the back seat was not constantly "Are you better yet?" I hope, beyond reason, that those not driving on my journey will try to appreciate that it is my journey and right now, there is no destination. You're welcome to join me for that journey, I love company, please just remember, no four word questions allowed.