Complex, complicated and sitting on the fence

Complex and complicated, two words that have been used, my entire life it seems, to describe any medical condition I’ve had over the years. My parents have told me that the reason for sending me to live with my grandparents at a very young age was because I was “a very sick child”. They can’t tell me what was wrong with me though…

Feels like I’ve been doomed from the start…

I’ve been made fun of, ridiculed and engaged in arguments because of the number of doctors’ visits I undertake. Am I wrong to seek medical help when I feel unwell? Am I to feel guilty for having a body that seems flawed in so many ways when it comes to good health?

No one likes to be sick and no one wants to have one complicated or complex issue after the other. Anyone who convinced themselves that, that’s the case with another person they encounter, needs to have a serious rethink!

COMPLEX

A few months back I was dubbed a complex case, nothing new to me as I’ve heard it before, it’s successfully sunk in! Experiencing symptoms of “possible ETV failure” over the last few years, described as being “possible intermittent failure”, left me feeling a bit unsettled. It’s maddeningly frustrating when you live with an invisible condition and the symptoms you experience, torture and torment you endure goes unseen by anyone else around you. Diagnostic tests which come back as “normal” are just another nail in the proverbial coffin of an incurable condition and a dagger in the side of any sane person.

Thankfully (touch wood), I’ve been symptom free since the last occurrence in July and August this year – aside from the odd headache now and again, I manage.

Status: I’ve been passed over to a Neurologist and am waiting for an appointment which according to the letter I received, “may happen in the next 12 months or longer”.

COMPLICATED

I’ve been seeing a Thyroid surgeon for my Thyroid issues and she used this word last week to describe my health. After some ultrasounds, a few nodules were discovered a few years back when I was first diagnosed. Also, nothing uncommon, apparently everyone has them. I had an FNA (biopsy) of the largest nodule just over 6 months back – the result was benign. Now, fast forward to my 6-month check-up, there’s been a slight change in said nodules. Some have decreased in size and some have increased, though there are very small changes.

The surgeon agreed I should have another FNA to check the other nodule, for my own peace of mind. (The word Cancer has been used loosely a few times and is something that I can’t simply ignore or pretend I didn’t hear). I told her that I wasn’t really worried before (maybe just a little) but I’m hearing it too often which makes me feel that maybe we need to rule it out. An expensive cost at $522.40 just adds to the financial burden of increasing medical costs.

Background: My grandfather had lung cancer, diagnosed in August and passed away a few months later, in April. I watched him closely as the disease took over his life and broke him down to an unrecognisable sight of skin and bone. Often times, I’d just lay down next to him. The day he died, I was the only grandchild of many, at his bedside, having gone into the city with my grandmother that day. One minute everyone was sitting and talking while I held his hand (him only really listening, as he was too weak to talk) and the next, I was pushed aside, as the curtains closed. I listened as the doctor and nurse attended to him and heard the strangest sound coming from him. A few minutes later, he was gone… it’s a memory etched in my mind forever. I was 12 years old.

I suppose it’s true, the most painful memories have a way of surviving Hydrocephalus and brain surgery! There are quite a few I’d like to get rid of but sadly they stick like glue…

I’ve said it many times before, death does not scare me, it never will.

Status: I have a recommendation to see an ENT specialist. I also have to wait for my repeat Gastroscopy, scheduled in a few months to see if there’s anything of significance with a lesion found earlier this year!

SITTING ON THE FENCE…

Hydrocephalus

I’m not holding my breath, nor am I interested in what happens next on my Hydro journey. (Forgive my honesty). I’m just over it! I know surgery can never be ruled out and will probably always be on my radar, it’s finding a way to do so without all the emotional baggage that comes with it…

Thyroid

My nodules are classed as TIRADS 3, midway between Suspicious and Not. So, I’m on the fence…requiring ongoing monitoring. Repeating this whole process and scare mission again in 6 months-time! Oh Joy!

Complex and complicated have come to mean, “I’m clueless as to what to do next” = just live with your symptoms until you die!

I feel like I’ve always been in and out of doctors’ rooms and hospitals. It doesn’t seem to end. Most times I’ve been sent away with no explanation for what I’m feeling. I live with the pain, endure the discomfort and I find a way through the confusion.

How do you enjoy life when all you’ve ever known, is a life of being complex, complicated and sitting on the fence in terms of medical ailments?

Before having my throat numbed and a needle poked about 10 times into the nodule to get a sample…twice, I had a conversation with the pathologist on hand. (He’s there to ensure a good sample is obtained so you don’t have to repeat the procedure). He told me about how most people wrongly end up having their thyroid removed only to find out that their symptoms continue and, it wasn’t the thyroid after all – this I understand to a degree. He commended me on managing my health…

He then proceeded to tell me about how in Japan doctors have changed the approach to treatment of men who have prostate issues because research shows most of them die from other causes. So, regardless of the fact that they have issues with their prostate, they don’t get treated for it because they may die from something else. His opinion: If it’s not affecting your quality of life, it’s best not to do anything about it.

This begs the question(s)…

How does he know it’s not affecting their quality of life? How does any physician for that matter? How are these men supposed to live with and manage the symptoms or discomfort they endure?

It also made me think of my own situation. Just because doctors can’t see what I’m feeling and their diagnostic tests show no evidence, it doesn’t mean that it’s not real. It also certainly doesn’t mean that it’s not affecting my quality of life, because it is.

Update on my biopsy results:

The test has come back negative and the nodule is benign! Awesome news in itself but it only took me a millisecond to realise that it leaves me hanging and feeling like I could scream. Before you misunderstand:

People who seek medical attention do so because there’s a reason to. Inconclusive tests or lack of an explanation for the symptoms you feel, is like a huge slap in the face by an oversized bully in a room full of people. It’s embarrassing, there are no words, the sting and the burn together with the stares from everyone around you is enough to crush even the bravest soul. And, not one person steps forward to help you, effectively leaving you to fend for yourself.

Most people don’t want to hear the plight of others, if doctors can’t find a cause for your symptoms, it puts you as the individual, in a very bad light.

Hydrocephalus too, leaves most people feeling this way. Lord knows I’ve certainly lost the plot when it comes to my ball and chain. And, to add insult to injury, I have to live with the discomfort in my throat and feeling like I’m being choked because of these nodules, which aren’t Cancerous and “not big enough” to warrant removal. There’s nothing I can do about them other than live with it.

Complex, complicated and conf***ed is what I feel like. How many others out there aren’t going through the exact same thing and feeling the same way?