Tag Archives: cyberchondria

Chemo Brain…the Likely Culprit.

I just wanted to update you quickly after my appointment with my neurologist yesterday. While it’s quite cathartic to write humorous posts to deal with difficult situations, I felt I needed to stop being the clown and remove the mask.

The jury is still out on what’s causing my memory problems. It’s looking like chemo brain is the most likely explanation for my memory troubles and my neurologist has recommended eating lots of green leafy veggies, a multi-vitamin high in vitamin B but I also need to have a brain MRI and a neuro-psych assessment.

In case you haven’t had a neuro-psych assessment, it’s where a psychologist asks you a whole heap of questions like: what’s the name of the Prime Minister, count backwards by 7 and what’s the day of the week. Fortunately, they don’t ask you where you left your car keys or what you did with that school note last week. That said, some times even the day of the week could be problematic. Unless you’re Einstein, I’d say most of us don’t like the idea of someone tinkering around inside our heads.

Even if there is a medical justification for my memory troubles, I still don’t want to get the questions wrong. I have my pride and can still hear the humiliation of an entire classroom of kids laughing in my face. Growing up doesn’t erase the horrors of being picked  on at school and most of us have copped it at one time or another.

While I’ve done these tests before and can recall at least some of the questions, I’m trying to stop myself from rehearsing the answers:100, 93, 86, 79…

As much as I don’t want to make a mistake, it would be an even bigger mistake to cover-up my weaknesses. I’d ultimately only be cheating myself.

Meanwhile, I’m taking comfort that my writing is still going well and that I’m playing my violin and these are both mentally, if not physically, complex tasks. There’s still some sort of activity going on upstairs.

By the way, the brain MRI will check for the deadly brain virus with the long name I mentioned in my last post. Apparently, it’s statistically very unlikely: about 1 in 50,000. However, these days stats don’t appease my concerns. The chances of having dermatomyositis were much less at 100,000 to 1 and I struck the jackpot there. Once you have one statistically rare disease, the odds mean nothing.

The neurologist has also ordered some additional blood tests.

Meanwhile, while I’m waiting to get these tests underway, I’m self-medicating. Once you’ve been through chemo, a few bits of chocolate are absolutely harmless.

To read my post about cyberchondria click here: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

xx Rowena

Terminal Cyberchondria…Yes! Please!

Being a blogger, a writer, reader and someone who likes to take responsibility for their own health, I’m a prime candidate for Terminal Cyberchondria. While not necessarily terminal in the sense of being life-threatening, you catch Cyberchondria from your computer terminal and more specifically by surfing the Internet for a diagnosis when you have more than a few “vague symptoms”.

Of course, having cyberchondria assumes that you are catastrophising again and your suspicions are wrong. That you have more chance of being killed in a car accident, or while riding a bike, than contracting that dreaded disease. No chance at all!! You don’t even need to cross your fingers, pray, say your Hail Mary’s. It’s all made up. In that great Australian tradition:”you’ll be right mate”!

However, once you’ve been struck by one or two rare, life-threatening diseases, that automatically opens the flood gates for you to develop any weird and wonderful disease… even the dreaded Ebola virus. After all, it only takes one infected person to board a train and it will spread faster than wildfire.

Well, I don’t have to worry about catching Ebola.

That has nothing to do with the fact that I live in Australia. Rather, you can pronounce and even spell Ebola and people have heard about it. That gives me automatic immunity. I specialize in the weird stuff…phenomenon even the doctors have to Google.

Anyway, since I had chemo at the start of the year, I’ve been having serious short-term memory issues and virtually no concept of time. For quite awhile, I’ve written these difficulties off as chemo brain, which is quite a common experience. In a way, this has been an interesting, quirky, experiment but I’ve now decided that it’s gone on long enough. I’m seeing my neurologist tomorrow.

There is quite a list of possibilities for my memory troubles:

  1. Chemo brain.
  2. Menopause.
  3. My shunt playing up. (I have hydrocephalus)
  4. Staying up too late.

However, I also started wondering whether these memory difficulties were side-effects of the new drugs I’ve been taking since I finished chemo. I’m on a drug called cellcept, which represses your immune system.

Google: a cyberchondriac's best friend.

Google: a cyberchondriac’s best friend.

When I Googled its side-effects, that’s when cyberchondria really kicked in. These side-effects include a virus that attacks your brain. In keeping with the unpronounceable dermatomyositis, this brain infection is called progressive multifocal leukoencephalopathy (PML). PML can be fatal. Symptoms include clumsiness, weakness that keeps getting worse, not being able to move or use one side of the body, and changes in vision, speech or personality (such as not caring about things that you usually care about and confusion).

After finding out the name of this dreaded disease, I’m wondering whether the people who name these weird and wonderful diseases and conditions, go fishing in their alphabet soup to put the names together. It has been hard enough to deal with “Dermatomyositis”, which is a serious mouthful but it only had 14 letters. The last word alone in PML has 19 letters. That must mean it’s very nasty indeed.

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I'm starting to wonder...

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I’m starting to wonder…

When I discussed the complexity of these medical terms with Geoff, he pointed out that they are intended to be descriptions so a medical person can quickly identify what is likely to be a complex medical situation far better than simply calling it: “Fred the Super Really Bad Disease That’s Going to kill You”. I can see his point but that still doesn’t help me explain what I’ve got and get any kind of acknowledgement from anyone outside the medical fraternity.

Ironically, while I have these two exceptionally rare medical conditions, I still have my tonsils, appendex and adenoids…all those bits people commonly have out and that’s what concerns me about PML. It’s rare enough and hard enough to pronounce, that it’s just my kind of disease.

You see, despite the cyberchonriacs, there are those rare winners of life’s rare lotteries who actually have what they thought they had. Yes, they actually have contracted one of these exceptionally rare, systemic, really nasty diseases. You know the type of thing that used to show up on the hit medical series House. Instead of being free to continue their explorations in cyberspace, before they even know what’s hit them they’ve been admitted to hospital. Yes, the proverbial Mac truck of bad luck was heading their way and they’ve just taken a very direct hit.

That’s me.

Dermatomyositis is a rare, systemic auto-immune disease where your muscles and skin attack themselves. It affects about 1 in 100,000 people and I’ve only met one or two people with the disease. You can get painful skin rashes and your muscles breakdown resulting in muscle weakness and wastage. While there is no cure, there is treatment which is largely effective although my case has proved more difficult to manage than average. The way I see it, I’m fighting myself and being rather strong willed, it’s been quite a battle. Dermatomyositis can also affect your breathing, swallowing and digestion and there are also the side-effects of the drugs and treatments. I am really surprised that I don’t glow in the dark after all my treatments. I’ve even had the Big C. That’s right. They’ve even blasted it with chemo. Thank goodness it worked.

However, while the medical treatments can be annoying, the hardest thing about having dermatomyositis has to be trying to explain it to anybody. I don’t know if you recall the Decore shampoo   commercial a few years ago where they had the person singing in the shower going: “D…D…D…Decore…Decore”. Dermatomyositis should be classified as some kind of tongue twister. I gave up trying to explain it years ago and just said I had muscular dystrophy. I thought it was a form of MD but it’s officially a neuro-muscular disease. Consequently, I now say it’s related to Muscular Dystrophy. However, if our son is around, he smiles with a baffled expression and tells people point blank: “You don’t want to know.”

Anyway, when you have a very rare disease, it opens the floodgates for all sorts of other conditions. After all, no one can tell you that rare can’t happen to you. Your last name might not be Murphy but bad luck sure knows how to find you!! It has your landline, your mobile and even your email address.

There’s a famous quote from the movie Casablanca which makes me smile:

“Of all the gin joints, in all the towns, in all the world, she walks into mine…”

That might have happened with dermatomyositis but hopefully, progressive multifocal leukoencephalopathy has somewhere else to go. It will board that plane with Ilse and Victor Laslo and disappear way beyond the clouds. Poof!

Goodbye Progressive Multifocal Leukoencephalopathy  (PML). Have a nice life!!

Goodbye Progressive Multifocal Leukoencephalopathy (PML). Have a nice life!!

Wish me luck with the neurologist tomorrow.

I don’t mind being told that I’ve over-reacted. A bad case of Terminal Cyberchondria is exactly what this patient has ordered.

xx Rowena.

If you are looking for information about dermatomyositis, which is a form of myositis:

The Myositis Association of America: http://www.myositis.org/learn-about-myositis/types-of-myositis/dermatomyositis

The Myositis Association of Australia: http://myositis.org.au/

Explorations with Google.

When considering great explorers, I usually think of intrepid adventurers who have “discovered” new continents, crossed frontiers and ventured into wild, uncharted places on this planet. People like Christopher Columbus, Captain Cook, Sir Edmund Hillary as well as adventurers like Dick Smith and Jessica Watson…  the youngest person to sail solo around the world.

Yet, thinkers are also great explorers and we also uncover new territory. Or, as is often the case, we build bridges across distinct islands and create new nations of thought.

Keats expressed such intellectual discovery beautifully in On First Looking into Chapman’s Homer:

…Yet did I never breathe its pure serene

Till I heard Chapman speak out loud and bold:

Then felt I like some watcher of the skies

When a new planet swims into his ken…

I don’t know if anyone else would consider me a great thinker. I’m a blogger and a very low-ranking blogger at that. Yet, I also explore foreign territory in my blogs and general writing, attempting to create new islands of thought or alternative ways of doing things.

Google has become an integral part of this process.

Google not only facilitates my research. It also takes me off on fresh adventures. You know how it is. You Google one thing and something else shows up in the search results and you end up pursuing a completely different line of thought.  Before you know it, you are a few mental light years away from where you started out and it’s all very, very exciting stuff! You’re mind is on fire!

Although it might be online, isn’t this is what learning is all about… going somewhere new and investigating, asking questions and sussing everything out? After all, isn’t this how so many of history’s greatest discoveries were made… by seemingly wandering off on a tangent, getting lost and then suddenly the light bulb goes off? Or, perhaps by putting a few random thoughts together creating something new and world-changing?

At the very least, Google allows you to check something out and reach your own conclusions.

Only yesterday, someone was telling me about a huge island of plastic rubbish in the Pacific Ocean. Now, I consider myself fairly well read with a keen interest in the environment but I had never heard of this island before. Thanks to Google, I was able to come home and not only read about it but I could even watch a documentary online. This thing (and believe me it really does sound like a “thing”) is called the “Great Pacific Garbage Patch” or the “trash vortex” and while you can’t really spot it on Google maps, it is located in an area called the “North Pacific gyre” – a vortex where the ocean circulates slowly because of little wind and extreme high pressure systems. Due to these ocean currents, it seems that plastic rubbish pools here. As with most things scientific, there is considerable debate about this so-called island, which is also described perhaps more accurately as a plastic “soup”.  Thanks to Google, I was able to read numerous opinions on the subject and formulate a reasonably well-informed opinion without a science degree or PhD, all from the comfort of my own home.

Yesterday, thanks to Google, I was a budding “scientist”. Today, I was in much more familiar territory…poetry.

I recently bought some antique sheet music on eBay. One of the pieces was called My Heart is a Silent Violin. I noticed that the words were actually a poem by Eric Von der Goltz JR. It is a very romantic piece and being a lover of all things violin at the moment, I Googled the poem. Halfway down the list, there was a link to The Old Violin – The Touch of the Masters Hand . The link mentioned that it had been his late father’s favourite poem. As a poet and lover of poetry, I was intrigued about what made this particular poem, out of all the millions of poems which have ever been written, that one in a million million… so I clicked through.

I wasn’t disappointed. I was very moved by this poem, which talked about how an old violin was being auctioned. At first, the auctioneer was struggling to get more than a couple of dollars for it. However, a master violinist stepped up and played the violin beautifully and suddenly the price jumped up into the thousands. It is a religious poem and God is the Master who appreciates and brings out the best in us. However, I also saw an application in how we treat people who are different, or at least different from us and often dismiss them.

We all deserve to be given a chance to shine with our own unique beauty.

The humble violinist

The humble violinist

As a violinist and yes I know I’m only a beginner violinist but a violinist is a violinist…I also viewed this poem from the perspective of the player, the violinist and not just the violin.

Being so moved by the poem, I wanted to find out more about the poem and its author, Myra Brooks Welsh. http://www.aboutonehandtyping.com/storiesfolder/master.html

Back to Google.

Yet again, Google didn’t disappoint. I found a brief biography of Myra Brooks Welsh written by Lilly Walters, who has her own story of triumphing over adversity. Lilly Walters, whose story appeared in Chicken Soup for the Soul 2nd Helpings, was inspired by the poem after she lost most of her hand in a farming accident as a child. Her mother was terribly distraught at the time but she was inspired to help her daughter learn how to type and Lilly went on to share these strategies with others. You can read Lilly’s story here: http://www.aboutonehandtyping.com/storiesfolder/angels.html

Science, poetry and then Google took me into the world of cricket…an exceptionally foreign land!

We have been watching the Sydney Cricket Test or should I say we’ve had it on in the background today. It’s a very hot, very sunny languid day outside and we are pretty much huddled indoors. We are having a day of rest, a non-day or what is often referred to as a pyjama day, although we have managed to get dressed. I must also say that the dog is walking around looking quite pleased that he’s lost his fur coat and has been spotted actually lying in the sun at times.

Anyway, the Cricket Show had been interviewing cricket legend and commentator Richie Benaud. I am not into cricket at all. In fact, I have historically detested watching the cricket in the way that only a big sister with an obsessed little brother could. Wars were fought not over who could control the remote but over who could keep hold of the on and off switch as well as the dial which manually changed the channels. It was such a different era!!

Watching Richie Benaud doing the cricket these days is like seeing a history in motion. Born in 1930, he’s now 82 years old and he actually retired from playing cricket way back in 1964, five years before I was even born! He has personally experienced such a vast spread of cricket history that even I find him interesting, just like I enjoyed hearing my grandparents talk about the olden days.

I have grown up these days and while I don’t watch the cricket myself, I no longer mind or even notice when it’s switched on and Geoff will often have it playing in the background at home. To me, cricket is still about Dennis Lillee, Rod Marsh and Kim Hughes and the West Indies were the ones to beat. Lillee retired in 1984 (Thanks again, Google!) That gives you some idea of just how long it’s been since I’ve watched the cricket!!

Back to Richie Benaud. Our son watches a bit of cricket but when I mentioned Richie Benaud, he hadn’t heard of him. Being a modern parent, I immediately looked up Google and was able to click on images and it brought up an entire gallery of portraits of a very young, muscular Benaud directly alongside his somewhat shrunken but ever so endearing, elderly self. There was even one of elderly Benaud checking out a much younger statue of himself: http://www.plowright.com.au/richiebenaudsculpture/richiebenaud1st.htm.

Harrods Bear Christmas 2001 in our daughter's pram

Harrods’ Bear Christmas 2001 in our daughter’s pram

I thought I had done just about enough googling when our daughter wandered in clutching what she described as her “winter bear”. Winter Bear is actually a 2001 Harrods’ Christmas Bear. Harrods has been producing Christmas bears since 1986 and each bear comes with “Harrods” stitched in gold on its paw along with the year. I have to admit that it’s looking very overdressed in its plush velvet snow coat in a sweltering Australian summer  (bring on the Speedos!)

Harrods 2001

Harrods 2001

I took this opportunity to introduce my daughter to Mecca of retail therapy and we googled Harrods. I have to admit that the website itself was a bit disappointing but I found this great blog post with a link to their annual Christmas parade: http://www.londonperfect.com/blog/2012/11/harrods-christmas-2012/comment-page-1/#comment-38637

So thanks to Google, I’ve covered quite a lot of intellectual territory in only a couple of days.

Like anything, Google isn’t perfect and like that vortex in the Pacific, there’s a lot of junk floating around in there. This might lead me into a whole new post about how we deal with information overload in contemporary world and the need for discernment. Just like any other source, we need to challenge and question what we find in Google.

My husband also mentioned another teeny little problem with Google… Internet Distraction, which I, of course, know nothing about!

Yellow Fever

Yellow Fever

Acute cyberchondria

Acute cyberchondria

There is also its evil twin, cyberchondria, which is well and truly fed by Google.

However, just a word of warning! Not all cyberchondria turns out to be chondria after all. Sometimes, all those dreadful imaginings actually do turn out to be real and when they do, we can’t blame Google.

Other times, somebody might just want a day off school!

So I guess Google is just like everything else.

It’s not perfect!

What are your thoughts about Google?

xx Rowena