Sometimes everything is not ok.....

I will start this with an apology. This is not very politically correct. I am not going to cover up what I want to say with things you want to hear. Sorry, but if you don't want to hear this, please turn away now. If you want to hear that everything is going to be okay, that I am happy with my lot, you are in the wrong place.

I have a degenerative disease. It is made up of numerous slow growing cancers, called paraganglioma. Normally paraganglioma are a simple benign disease. Add to them the SDHB genetic mutation and you have a deadly cocktail. We have all seen the pictures of people dying from cancer. That’s me… except in slo-mo! After years of surgery and radiation the doctors are now telling me there is nothing they can do, unless….

People tell me how lucky I am to have a slow growing cancer. They even question if it is a ‘real’ cancer. Yes, it is eating away at my body. Yes I am going to die from it. “Unless you get hit by a bus beforehand”, says another well meaning friend. "I mean none of us really knows when we are going to die. You are lucky as you have had a warning. And you could get hit by a bus before hand, anyway.”

Yes, how lucky am I. I know I am going to die a long, slow agonising death, which will probably involve me suffocating as a result of tumours eating away at my lungs. Yay! You should be so lucky. Perhaps I should step in front of a bus. It is quick and painless. But then, there is the guilt that stops me. Someone has to clean up that mess. I couldn't possibly do that to my family or the street sweeper. Also, the insurance won't pay-out for that. I have to die a long, slow, lingering death to get a cent.

I know I am alive. And I know that, regardless of how bad it gets, I will always be able to find someone who is worse off. But please don't tell me I am lucky. It is really hard to start each day with a smile and be grateful when I know what is ahead.

That “unless” from the doctors that I mentioned before. That ‘last straw’ that I cling to is called the “Lazarus effect”. I was told that there is a treatment that may work for me, but it is a ‘last minute’ sort of reprieve. IF my tumours start to grow quickly, “they” might be able to use a really cool treatment called Lutate. It is where they inject radiation into your veins and IF your tumours are big enough, and IF they are growing fast enough they take it up and are killed, at least until the next ones grow. But… and here’s the but, they have to be fast growing and big for it to be successful. Hence the name, “The Lazarus effect’. You might remember from bible stories the story of Lazarus and how after he died, Jesus healed him and brought him back to life. Gives you an idea of how close they are cutting it.