Frank the tumour

May 2013:

Landing back in Johannesburg after 16 hours of flying and commuting, all I can think about are the Himalayas and Nepal and the best 3 weeks of my life discovering Kathmandu and trekking the Annapurna Circuit- a long trek through the central Himalayan massif, the highlight being passing through the Thorung La pass at 5416 m above sea level. 3 weeks surrounded by the most amazing people and snow capped peaks was something extraordinary – a simple life yet one I’d probably substitute my current life for in a heartbeat.

I just wish my ears would equalize after the high altitude and all the flying – my right ear feels constantly blocked and under pressure.

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Being a relatively stubborn guy I lived with my blocked right ear for about 2 months before heading through to my first ENT. I guess I believed it would get better on its own – I mean this has to be a result of serious amounts of flying, both to Nepal and prior to this, Cape Town and Durban every other weekend. In 2012, I was working on a client based out of Durban so my second homes were planes and hotels. My first ENT, lets call him Doctor A, a short man who took great care in his appearance, who, after keeping me waiting for over an hour, concluded after sending me for CT scans and a hearing test, that my blocked ears were due to a deviated septum I suffered whilst encountering a hockey stick in my face whilst playing hockey in primary school. He wanted to operate to fix the deviated septum but there was no guarantee my hearing would return.

I often think about why I never took his advice regarding having an operation to fix the deviated septum – I guess the distance between nose and ear was too great for my rational mind to believe it was a plausible solution. That, and if I’m honest, I just didn’t like Doctor A – possibly because he kept me waiting for hours. Don’t get me wrong – I understand there may be cases that there are medical emergencies or surgeries that overrun that prohibit the keeping of a timeous diary, but there were no such emergencies on this day – he just wasn’t keeping up, which I theorise may have to do with the desire of squeezing in as many patients into a day as possible as patients equal money. Lots of money. As a capitalist slave and investment banker, my colleagues and I get itchy if you’re even slightly late for a meeting. 10 minutes late gets the hairs on the back of my neck dancing; an hour late gives me heart palpitations.

I smelt a rat and hunted down a second opinion from another ENT surgeon who came highly recommended, let’s call him Doctor B. I liked Doctor B – he was friendly, didn’t take himself too seriously and was never late. After a few appointments my diagnosis was that my bad heartburn and pulled shoulder muscle (caused from my lopsided backpack carried on my Nepalese trek – thanks camera tripod) are causing my Eustachian tube to get blocked, meaning my ear can’t equalize.

This sounded plausible based on high school biology, my addiction to the Woolworths bakery aisle and associated heartburn and the fact that a heavy backpack can pull a muscle, the same muscle that extends to my ear.

It’s funny how one can almost convince themselves of something based on how your rational brain interprets information and who is giving you this information. Like I said, I got along with Doctor B, he is a super ENT surgeon and has treated friends and colleagues of mine – I trust him.

I began the next year (late 2013 through 2014) of my life on heartburn medication and regular visits to first a chiropractor and then a physiotherapist for shoulder and neck manipulation and dry needling to solve the shoulder issue and thus resolve the hearing problems.

The chiropractor was great, we made good progress on my posture, and I think we both believed that with enough neck manipulation, my hearing would get better. Every one of the many sessions I had with her always ended in “Is the hearing any better?”.  Generally the answer was ‘no’ but if I’m honest, there were times when I thought it was getting better but I boil these ‘yes’ answers down to me really wanting it to get better to bring me back for another session. My Chiropractor was pregnant and our sessions stopped when she had her baby. I respect the fact she continued to treat me right up until she had her baby – being a Chiropractor isn’t easy and I’m sure being pregnant isn’t either!

The Chiropractor did help a lot with my posture however. It’s almost like going to the mechanic to get your brakes changed and being told you need to fix your windscreen wipers (work with the analogy – my knowledge about cars is embarrassing).

Post Chiropractor it was time to up the anti – at this stage it was over a year, I was deaf (getting deafer); I was frustrated and I felt like I was burning through serious cash with all these appointments without a solution. Not to mention an hour at the Doctor meant an hour away from work. And work doesn’t magically get done so invariably it meant a late night to catch up. I remain very fortunate to work in a team with a manager that understood my situation and gave me a long leash to fix the issue. I’m very fortunate to have had this discretion.

Worryingly, another symptom had presented itself – tension headaches. These headaches used to sneak up on me and wipe me out. At times, my sight would be impaired, I’d get terribly thirsty and I’d crave sleeping to get rid of them.

Time to see the Physiotherapist as these headaches must be getting caused from the shoulder. And if you fix my shoulder, you fix the headaches and hearing – win win. I was referred to a Physiotherapist that works in the office and off I went. The Physiotherapist is a super chap: we ended up speaking nonsense throughout the sessions when he was treating me and we made great progress on my neck – the headaches had stopped which was excellent. I’m not a fan of dry needling as it felt like I was being electrocuted but it worked and that’s what mattered.

My hearing wasn’t improving though so at the end of 2014 I decided to give another ENT surgeon a bash. Third time lucky and all that jazz. Ada had asked her surgical professors and colleagues for a reputable ENT and I was forwarded the details of Doctor C. At this stage there was another symptom joining the bandwagon – this constant ringing in my right ear, almost like the sound of television static that was driving me to violence.

My first appointment with him was in the middle of January. I thought I was going to miss it as driving from Sandton to Johannesburg CBD at 4pm is a recipe for disaster! Fortunately, he was running late (he arrived late from theatre so I was more tolerant).

Doctor C is very intelligent; he takes time to think about his replies in an almost guarded fashion, and is super calm. The first appointment saw me being prescribed enough medicine to max out my medical aid limit in January! Once again we are back on the heartburn and sinus/allergies bus coupled with treating the possibility of some rare ear infection. Having nothing to lose, I started taking the pills. So many pills I could have been a drug mule. I was instructed to go for another hearing test as the previous one I had done was over a year old.

Now before I go on, there are a few things you need to know about me. I’m not particularly religious; I don’t actively practice or preach anything. I’m not an Atheist but I’m certainly not a bible-basher.  My view is more that there is a higher power (whatever it may be); a sort of guardian angel or spirits of those who’ve past that ‘keep an eye’ on you – sounds crazy but that’s the best way of describing this.

Anyway, the next sequence of events is a little interesting to me for reasons you’ll see below. That and the fact that more than 2 years into this ear issue have past and I’m still trying to resolve it and haven’t written my ear off yet!

The hearing test was conducted by a young audiologist who seemed a little shaky with her responses, and battled to give me factual answers to my rather direct questions. That said, she knew what she was doing, she was friendly and we built up a good rapport. The appointment ended after listening to a series of beeps and repeating various words. The results showed the hearing in my left ear is great but the hearing in my right ear was pathetic – I recall figures of 6% functionality being thrown around. We discussed the results (without her having any knowledge of my previous hearing tests) and we decided I’ll make another appointment to have a very specialized hearing test done that will determine whether my actual hearing nerve is damaged or not.

Whilst paying the bill, the receptionist asked if she could email me my receipt as her computer was taking some time to co operate. Obviously this was fine. Later in the afternoon whilst at my desk, the receipt arrived and for reasons unbeknown to me, I replied to the audiologist with a copy of my previous hearing test, which she hadn’t seen. She didn’t need to see it and hadn’t asked for it but what harm could it do, right?

Not 30 minutes after sending the hearing test I had the audiologist on the phone cancelling my fancy hearing test and informing me that the results of our hearing test and my old test are indicative of a bigger problem (just what I wanted to hear) and that she was going to phone Doctor C and recommend that I go for an MRI. Interestingly, medical aids require specialist approval for an MRI to be performed due to their inexplicably huge cost. Apparently it has something to do with CT scans being ‘simpler’ because they only analyse bone whilst an MRI can photograph soft tissue.

Nonetheless, Doctor C emailed me his referral for an MRI at 1am. I was still awake Googling up a storm as I know what MRIs are used for and I was sweating bullets. The 1am email from a specialist made me realize he’s concerned about something too and as a result, I wouldn’t be sleeping that night.

I know that Doctors will tell you to stay away from Google in an attempt to self-diagnose but I had pretty much diagnosed myself that night. I think at one point I told Ada that I know exactly what they were looking for as there were only so many options to choose from. I decided I’d let the specialists confirm what I thought I already knew.

Roll on the very next day and I’m lying in a white, plastic tunnel with a brace around my head to stop it from moving whilst my good ear was hearing a series of beeps and thuds from the MRI machine as it realigned my Hydrogen atoms and photographed my brain. Photographing one’s brain, we’ve come far to be able to do that. In order for the radiographer to accurately see what’s going on in your brain, they inject a salt-based dye into you, which has virtually the same effect as using a flash in regular photography.

Once done with the MRI I was given the option of waiting for my results or having them sent straight through to Doctor C. Being as impatient as I am, there was no way I was waiting a week until I saw Doctor C again and hearing the verdict so I opted to wait and see. This was a long wait.

When I finally received this gigantic envelope I remember seeing this sticker on the back that said in huge red letters “confidential” and I remember wondering if that applied to me but I quickly decided it didn’t so I found I quiet spot and opened the envelope. And there it was – a 3cm by 3cm tumor sitting in the right hemisphere of my brain.

I think at this stage I knew what I’d find in the envelope so I was quite calm about it, I read the radiologist report and it turned out to be exactly what I’d Googled. I went through the motions of trying to get an earlier ENT appointment but was unsuccessful, I tried to talk to the radiologist but at the end of all this, the facts were the facts; there is a tumor in my head and needs to come out. At the beginning of this week I wanted to hear from my right ear again but now I couldn’t care less about that – this thing needed to go.

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You have a choice throughout all of this: you can let it seriously get you down or you can deal with it with as much of a positive attitude as possible, so I decided to name the tumor Frank.

What is Frank? Frank is an acoustic neuroma, which is a benign brain tumor, meaning it can’t spread to other parts of my body, Typically, acoustic neuromas are not cancerous 99% of the time, thankfully.

Acoustic neuromas are rare. Depending on the research you do (and I read everything) you’re looking at between 11 and 35 occurrences per million people. As a result of this, and the fact that they grow so slowly (1mm to 2mm a year) makes diagnosis difficult, so Doctor A and B are forgiven but that didn’t stop me from phoning them to tell them they missed it. Deviated Septum my arse.

There is no solid evidence of what causes these tumors. Very rarely they can be caused by a genetic condition but I’m not one of these candidates, as I’d have bigger issues by now. For the 98% of acoustic neuromas that aren’t genetic, a tumor starts growing slowly out of your hearing (acoustic) nerve. What’s scary is that Frank has been growing from when I was most likely 12-14 years old! Symptoms include hearing loss and a sensation of ‘fullness’ in your ear, which accounts for me thinking it was related to all the flying. Generally symptoms are first experienced around the age of 30, as that’s when the tumor reaches a significant size.

I decided I wasn’t going to wait a week for Doctor C to tell me what I already knew. I needed to do 2 things:

  1. Do as little as possible which I find funny as in the past two/three odd years I’ve travelled to 11 or so countries, trekked through the Himalayas, Andes and Amazon Jungle; worked like a dog when I’m not travelling and none of that killed me but merely knowing about the existence of Frank and I want to wrap myself in cotton wool!
  2. I needed to find the best Neurosurgeon out there. And I did in the form of Doctor JW –even my second opinion was telling me how good Doctor JW is. His receptionist squeezed me into his crazy diary, which was already booked out until April when I first saw him on 4 February so we were all set!

Doctor JW is a champion – such a nice, approachable, friendly guy. He took his time to explain everything to me and wasn’t in a rush despite his full waiting room. I only have the very best things to say about him. All of this coupled with the fact that he has a remarkable reputation and is a pro at acoustic neuromas, what more could I ask for?

The surgery was not risk free: There was an 80% chance I’d be fine but that meant a 20% chance the right side of my face would be permanently paralysed as my facial nerve is a sneaky nerve that intertwines itself with the tumor (this is why you need the best Neurosurgeon). In terms of life or death risks: this isn’t an operation you die or get brain damaged from but not having the tumor taken out will kill me as it is already large and pushing into my brain stem and shifting my entire brain to the left and despite what my mates may say (that’s you Brad) there isn’t an abundance of space in my skull to accommodate such movement. I was also informed the right side of my face may be temporarily paralysed post-surgery as my facial nerve (if preserved) could be quite bruised and take time to recover. My balance would also be negatively impaired. With recovery and some months, I’ll be ok after surgery. And that beats being dead so we queued Frank’s eviction for 19 February (Queue the Jaws soundtrack).

It’s funny how the wait between the 4th and 19th progressed as I almost felt like I needed to get my house in order: pay all the bills, make sure all my life insurance and income insurance was up to date, moved money out of savings “just in case”, get the medical aid and gap cover admin done (and there’s a lot of that) and finally, and scarily, get a will. That was odd, especially realizing you’re worth more dead than alive!

My last day at work was also quite something: my productivity was very low, but my team is nothing short of awesome so I think they just let me be. Saying goodbye at the end of the day was surreal because it was almost a sad goodbye where you’re tossing around the idea of giving someone a handshake or a hug. It almost felt like I was leaving forever which makes no sense logically but logic hardly applies in these instances.

19 February 2015:

I had to be at Wilgeheuwel Hospital at 5am for admission. So after a thorough shower with some fancy soap issued by the hospital, Ada and I anxiously ventured out to Roodepoort to get this ball rolling. I’ve only been to hospital once in my life and that was to have my wisdom teeth taken out – a day procedure which involved a whole 14 minutes in theatre – hardly significant nor comparable.

That early morning admission involved paperwork, the assignment of a bed, being tagged with various bracelets so I don’t get lost and a full medical history which involved me trying to remember every illness and ailment I’ve ever had as some irrational part of my brain believed if I forgot to mention anything I’d definitely die. I felt like I was in an exam!

Once that was done, I started meeting the team that would be looking after me in theatre. The first 2 ladies were very friendly and said if I wasn’t nice they wouldn’t be gentle with my catheter, so I was very nice (I was hating the idea of a catheter – it’s the 21st century; surely there is a less invasive thing than a catheter for goodness sake).

The next lady was Doctor JW’s scrub sister, who was amazing. I think she runs the show in theatre – super friendly and informative. Next was the anesthetist, Doctor R – also a great man with a good sense of humor; he doesn’t sugarcoat things which was great and I really appreciated that.

I had to get dressed in these awful blue undies (if you can call them that) and some sort of gown that opens at the back. Goodbye dignity.

Action time: 2 nurses arrived to take me into theatre; shit got very real. I said goodbye to Ada which was just so odd/sad/surreal. I knew I was going to be fast asleep soon but I hated the fact everyone would be worrying about me for the next number of hours; it didn’t feel right whilst I was blissfully unaware.

That theatre was freezing cold. I remember shivering in my delightful backless gown as I jumped over onto the operating table. I remember making small talk to Doctor R and his assistant – stupid small talk about how cold it was but all I wanted to say is “keep me alive” or “I will haunt you if this goes pear shaped”. I remember lying down, noticing the dark blue ceiling (I wonder why it’s dark blue? Is it to calm you? If so, it didn’t work) and then being told to breathe through this mask which had “Oxygen”. I’m sure it was Oxygen for a bit but then the smell changed to this chemical smell and I remember thinking ‘here goes’ and I was gone. No count back from 10, nothing. Just bang and you’re out.

The next thing I remember was someone telling me it was all done but I didn’t believe it; no time had past, there was no way they had finished – I even remember trying to tell someone this who thought it was entertaining. But it was true, 7 hours had indeed past and I was told the surgery was very successful, that Frank was completely out and that my facial nerve, although bruised, was in tact and stimulating well – excellent (I’d later find out I needed a nerve graft but such is life)! I’m part of the 80% and I don’t have to do anymore mental maths calculating probabilities of success/failure! It was a difficult operation as Frank was very ‘healthy’ – he had a very healthy blood supply and had made himself quite at home. But he didn’t stand a chance against Doctor JW.

That first day in ICU involved lots of being hardly awake and aware to being fully out of it. My memory is super patchy but my concentration got progressively better over the next few days. I remember Ada always being there and when I became aware of visiting hours she was always first through the door – what an absolute champion. A clown but also a champion.

ICU is a terrible place. The care you get is beyond brilliant and you’re being looked after by the best of the best but its loud and bright, There are monitors beeping and flashing all the time; there are people prodding you with needles all the time and you’re attached to automatic blood pressure machines that go off at odd times. It’s unpleasant. Sleeping was impossible with all this let alone the fact I had a central drip line in my chest, drips in both arms, an Oxygen feed in my nose, a blood pressure and oxygen monitor permanently attached as well as those heart monitor sticky pad things. I had tubes and cables everywhere. You couldn’t move for cables and tubes. I felt as if it was a victory being disconnected one by one from all these machines as I became much more stable.

ICU lasted for 3 days before I was allowed to move into a general ward, which was much better! You’re still getting poked like a pincushion but the frequency is less and you’re still being woken up at 4am but at least you could fall asleep in the first place!

The next 5 days involved physiotherapy to ‘mobilise’ me, which is a fancy way of saying getting me to walk on my own again. The sooner I was fully mobilised the quicker I could get home: I was about one bed bath away from committing a felony.

The hospital stay in itself was interesting: I have a whole new appreciation of how hard the sisters and nurses work to look after you; no job was too much of a chore, and if something was the matter, they tried everything to sort it out as quickly as possible.

According to the myriad doctors and physiotherapists I’ve spoken to, I can expect my facial palsy to recover over a number of months but it’s a slow process as the facial nerve grows very slowly (1mm a day) so until then I look like a bit of a muppet but these beats being dead so I’m fine with it.

I guess all that is left to do is best summed up in the words of my favorite Clown Fish, Nemo: “Just keep swimming”.

 

 

 

3 thoughts on “Frank the tumour

  1. Very well written: ironic and matter-of-factly. You’ve definitely earned the upcoming trip 😉
    Enjoy!

  2. Great read, feel sorry for Frank but that’s life… I had one session of surgery for colonic cancer, I know something about the hospital experience ( not so intense) that was in Thailand where everybody smiles all the time.

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