Wash your mouth out with soap – 3

Friday 1 September 2017

I arrive at the ENTs office with my history of my soapy mouth all written down. Over the previous 6 months I had been tracking my soapy mouth and the severity of the bad taste as it was so on and off and I plotted it into a line graph:

line graph

When I presented this to my ENT his eyes about popped out of his head and he said I had an allergy. I asked how he knew and he said my line graph. If it were anything more serious the line would be straight…famous last words. He asked a bunch of questions, stuck some cameras up my nose and said everything was fine; I had an allergy and blood tests would show what I was sensitive to. He also said I should go for a CT scan and a hearing test. I said yes, my husband says I am going deaf!

So, I left the ENT feeling quite happy that it was an allergy and if I took my tablets, nasal rinse and spray consistently then the soapy mouth would stay away. Also, at the time, he had given me some papers with addresses etc for the CT scan, hearing test and blood tests which I found difficult to read and I just put them away when I got home and didn’t think more of it. A few weeks went by and my husband still kept saying I was going deaf so I started to analyse my behaviour and realised that I was tilting my left ear forward when people spoke to me, constantly said ‘pardon’ and I always answered my phone in my left ear. I decided to use the phone in my right ear one day to see the difference and it was like there was mild interference and I could hardly hear the caller! I then started testing my hearing when I was laid in bed and all I could hear were the cars outside. I would block each ear and see if I could hear the same….I couldn’t. My right ear was losing it’s power! So, following my husbands comments and my scientific home-made hearing test I decided to dig out that piece of paper the ENT had given me, deciphered his writing and called the hearing centre.

Monday 20 November 2017

I passed the beep testing but it was obvious that there was an issue with the test where I had to repeat words that were played in my ear. My left ear was fine but I got a few words wrong in my right ear. I knew when I was saying them they were wrong as I was instructed to say what I heard, not what I thought the correct word was. So, some words I was saying were not even words. At the end of the test I was told that I had significant issues in my right ear with hearing certain letters. I don’t remember the science around it but it was something like, letters are grouped into certain pitches and there is a pitch I can’t hear therefore I can’t hear letters in that group. I was told my results were indicative of a benign tumour and that I should have an MRI. She was very sensitive when telling me this and when people say she shouldn’t have used the ‘T’ word I disagree. She knows her job and the results that come out and mine were so specific that I believe she did the right thing. She was calm and not over the top but also instilled in me a sense that I need to make sure I have an MRI. She wrote a letter to my ENT and gave me a copy and said she was really glad I had come in for the test. About a week later I received an email from her, she was following up to check I had the MRI booked. I don’t believe she had to do this, I took it as her trying to make sure I was being looked after and I knew then that it could be serious.

hearing test2

Tuesday 5 December 2017

I took my hearing test results and the referral letter back to my ENT and he wrote me a referral for an MRI. He also advised I had detailed blood tests done for allergies (the one he advised the first time). I had the blood tests done that afternoon but the MRI centre was too busy so I booked for Friday.

Friday 8 December 2017

I wasn’t sure how I would feel having the MRI. I have never had one before but I know when I watch anything on TV where there is a small space it makes me cringe…ever seen that movie where somebody is buried alive for what seems an eternity? That really freaked me out. Anyway, I was trying to be optimistic and hope that in reality it wouldn’t be so bad. An Irish guy came out, called my name and took me into a cubicle where he removed my gold bracelet for me and put my belongings into a cupboard. I only said a few words but he picked up on my UK accent straight away and asked me where I was from, how long I had lived in Sydney etc and tried to put me at ease. I got onto the MRI machine and he asked if I wanted headphones for music. I don’t really like music much so I said no. He asked if I was sure, whilst coming closer to me with the headphones, and I said I was sure. He leaned in, said yes you do and stuck them on my head anyway and as he turned on the machine he said “best to just close your eyes and don’t open them until you come out”….good one.

As the machine slid me into the smallest space possible I start to panic….I yelled the ‘F’ word, my full Yorkshire accent came out and I was wobbling my legs up and down and waving my arms. I must have looked a right idiot! So, I spent the next 2 or 3 minutes panicking, my heart was going so fast and I was trying to talk myself over the peak of freak. From my counselling days I remembered that the emotional reaction to stress raises until it reaches it’s peak, then it has nowhere to go and starts to come back down again so all I had to do was wait for the peak and ride it back down. After a few minutes I had settled in, had some rubbish smooth FM playing in my ears and began to drift into a state of mindfulness. After around 10 minutes they brought me out as they needed to administer contrast to have better visibility. This was fine as needles don’t bother me at all. I went back in and 5 minutes later I came out. After the MRI my husband and I went away for the weekend to Avalon, which we had booked a while before but it was perfect timing. We had a great relaxing weekend by the beach and I was able to forget about the MRI for a while.

Tuesday 12 December 2017

I took my results to the ENT; I had made the decision not to open them before seeing him. I felt I pretty much knew what was going to be in there (based on an educated guess from symptoms, the hearing test results and research) and I wanted to have a professional there with me when I opened them so I could ask any questions straight away.

He first confirmed that my blood test results showed no allergies then he loaded my MRI scans up on the screen. I saw it straight away, the white kidney bean shape in the middle of the image. My ENT asked what I thought the problem was and I pointed straight at it. He confirmed it was an Acoustic Neuroma Tumour (benign), briefly explained the treatment options and seemed to be suggesting operating was a good option for me but said that I should meet with a surgeon who specialises in Acoustic Neuroma treatment as he didn’t do this type of surgery. He explained that he had seem my results on the Saturday and had already called a surgeon for me who was on annual leave for 3 months but had agreed to fit me in. It all seemed a little rushed and I was a little surprised by this. The cynic in me wanted to know why he was so quick to refer me to this particular surgeon before I had the chance to research them myself but I tried to be optimistic and trust that he had my best interests in mind. He then moved on to another MRI image which showed another mass across the right side of my face; this was a blocked sinus. He said this also needed to be operated on but was not a priority. He said I should continue with the sinus rinse I had been using twice a day since I last saw him and using the Nasonex and that this could wait so as not to overwhelm me.

I was calm in the consultation because none of what he was saying was a surprise to me due to the research I had done. Reflecting back I can see that he kept pausing and looking at me curiously. Maybe waiting for me to show some emotion, making sure I was taking it all in ok…wondering why I was taking the news so matter of fact. I giggle about it now, he must have wondered what was going on……you could have mistaken my behaviour for that of a person who was ordering a coffee. He advised me to go straight to the surgeon’s office round the corner to make the booking and asked me to book back in with him so he could make sure I didn’t “fall through the cracks”. I thanked him, paid and left.

The ENT office was in a shopping mall and so I went to sit down at some tables as I had all the papers and scans in my hands and as I got a few strides down the mall tears started leaking involuntarily out of my eyes. I put all the papers down on the table and called my husband. He is usually the calm one of the both of us but as I was telling him and he could hear me crying I heard his voice crack “I’m coming straight over” he said “stay where you are and I will come to you”. His boss drove him from work to the mall, about a 20-minute drive. While I was waiting I went to the Surgeons office as my ENT suggested but found it closed for Christmas party so I wondered around aimlessly until I came to a bus stop and just sat on the bench waiting.

When George arrived he looked pale, I could see he was scared. We went to a café, got a coffee and I told him what I had discussed with the ENT. We spent the next couple of days letting our families, friends and my work know what had happened. I had not previously told my family (who are back in the UK) anything about the hearing test or the possibility of it being a tumour. I think I told my sister the night before but apart from that I kept it to myself.

The next day I got hold of the surgeon’s office in the afternoon (it must have been one hell of a hangover they had as this took me most of the day). They confirmed an appointment for me for 15 January 2018…which, as I write this, is tomorrow!

It still isn’t clear which is the cause of my soapy mouth, the tumour or the blocked sinus, but it doesn’t really matter. I was on this quest and as I ruled out all the obvious causes I began to really need to know in case it was something serious. Altered taste is a symptom of both ‘ailments’ so either it’s the sinus and the path to discovery was a blessing in disguise or it’s the tumour and my fear of it being something serious was valid. Either way, one thing is for sure….knowing it is something serious feels a lot better than wondering if it’s something serious. At least this way I can deal with it and move on.

Monday 15 January 2018 – First Surgeon appointment.