Sometimes, despite already dealing with an established list of chronic diseases, our bodies decide to throw us a curveball.
Over the past 7 weeks I’ve been dealing with a tongue ulcer from hell. It’s like nothing I’ve ever seen or had before. Any mouth or tongue ulcers I’ve had in the past have cleared up within a week.
This alien on my tongue, looks like a crater on the moon and I’m not exaggerating.
Tongue Twisting Terror
Aside from it’s ugly appearance, the ulcer is causing more pain than my non union broken femur and broken feet. I would not have thought it possible but it doesn’t respond to any treatment or any pain killers.
Every little movement of my tongue sends searing shockwaves through my mouth.
Eating and talking is excruciating.
7 weeks I’ve been enduring this with literally no let up. I need it to heal but it is showing no signs of cooperating with my wishes.
Time To Call In The Specialist
My GP decided late last week, enough is enough and we needed to seek advise from an Ear Nose and Throat Specialist.
I was blessed to get in within a few days.
I had seen this ENT 8 years ago and he’s also looked after my husband a couple of years ago when he had a cancer scare. I knew I was in good hands.
8 years is a long time when you are looking at my health history. Back in 2011, I had Rheumatoid Arthritis and Sjogrens Disease. I was also still working full time.
My poor ENT had to get his head around my long list of medical adventures since then:
♡ Permanent Colostomy
♡ Pathological Femur Break and consequent Rare Bone Disease diagnosis
♡ 15 surgeries
♡ Trigeminal Neuralgia
♡ Spinal Stenosis
♡ Multiple Foot Fractures
♡ Adrenal Insufficiency
♡ Ocular Hypertension
And now…..a tongue tale to tell!
At first glance of my new tongue accessory, he felt we needed to have it biopsied.
He’s hopeful it will be benign and hoping the healing is just slow because of me being immune compromised.
However, he said he can’t rule out tongue cancer given the way it looks.
He did say I’d be extremely unlucky for it to be cancer, given I don’t smoke or drink. He then went on to say I’ve been unlucky though with everything else so we can’t assume it isn’t cancer and sometimes it does just present out of the blue.
So, with me as his surgical assistant holding my tongue, my lovely ENT proceeded to do the biopsy.
The needle delivering local anaesthetic was the worst part. Tongues really know how to hurt. My ENT confirmed that’s the case and he seemed to be cringing more than I was.
Then it happened….the tongue was numb and for the first time in 7 weeks I felt relief, pain free relief.
He cut out a sizeable portion of my tongue for pathology and kept asking if I was ok. I was more than ok. I was in heaven. I couldn’t feel what he was doing at all. No tongue pain was such a treat.
Of course within 30 mins my state of pain free tongue bliss vanished as the anaesthetic wore off. Interestingly though the biopsy pain was no worse than the ulcer/tumour pain I’ve been living with. I was back to my normal tongue terror state.
And Now I Wait
With the biopsy done there is nothing left to do but wait.
I’m to ring for results on Tuesday. My ENT sent my tongue sample off to pathology urgently.
If clear, he thinks it will take at least another 6 weeks to heal given my diseases and the severity of the ulcer/tumour. It’s likely even if benign, it’s a tumour not an ulcer. This means it won’t heal, it will just grow. If pathology says its benign but it’s still there in 6 weeks I have to go back. I’ll probably need to have it removed and will be saying goodbye to a sizeable portion of my tongue.
If it’s tongue cancer it will be immediate surgery to remove part of the tongue plus whatever else depending on staging.
What To Do While Waiting?
With chronic illness there is often periods of time spent waiting for test results. You could say it’s an occupational hazard.
I know this time I’m waiting to find out if I have cancer but many other health issues have been just as concerning. My main bone disease has no treatment or cure and is progressive. I live with the unknown everyday.
My ENT did say if it’s tongue cancer I will die without surgery, so a little confronting, however at least it has options which could cure it. Surgery, chemotherapy and radiotherapy are all available. There is hope.
So what do I do while waiting?
I relax with some favourite shows.
I listen to music.
I just go about my normal routine.
I make sure I laugh.
If I find myself questioning something about tongue cancer, I take a moment to educate myself. I find having the facts helps me accept what may or may not be ahead.
If I can’t find the answer, I make a note of my question so I can check with my Specialist.
I chat with family and friends to let them know what’s happening. I don’t want to worry them unnecessarily, but I also don’t want them unprepared if the news isn’t great. Giving others time to digest big news is important.
Watch This Space
So hopefully my next blog post will have news of my results and a plan forward.
Whether benign or cancerous, I’m still going to have to deal with this tongue twisting terror for quite a while. It’s inevitable that more “tongue tales” will be written as a result….sorry about that!
I’m certainly on a learning curve, one I did not see coming. I’m viewing it as interesting. I’m sure at the end of the day there will be a bigger purpose throughout this journey. There always is. I just have to look for it.
I’ll keep you posted.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
Philippians 4 v 6
I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
I’m a member of the Chronic Illness Bloggers Network, the Grace Girls Facebook Group and Salt and Light Linkup Group
If you would like to read a little more about my journey, here’s the link to My Story
8 thoughts on “A Tongue Testing Tale”
Waiting is hard. I’m currently waiting on ultrasound results. I picked up a new book. My mast cells often cause ulcers on my tongue, but if I can figure out the trigger, they go away. Bodies are weird.
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They sure are weird aren’t they when they decide to misbehave xx
Just want to say I’m sending positive thoughts your way, Sam. Hopefully, the results come back clear. Sometimes the hardest part is waiting. Once we know what we’re dealing with, we can get on, and deal with it. x
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Thank you so much. You are so right about just needing to know what’s going on so I can get on and deal with it xx
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Oh my goodness! This is quite an ordeal. I suffer from mouth ulcers due to the medication I take but nothing has ever lasted nearly that long. Even a few days is enough to make me crazy, so I understand how much pain you must be in and am impressed with how you’re handling it. And to top it all off a potential new scary diagnosis. Your grace is truly remarkable.
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Sarah, thank you so much. Xx
Oh yikes, Sam, you really don’t do anything by halves! I’m so sorry you’ve been in such pain, and to go from thinking it’s a frustration to an ulcer then possibly something more sinister, even if benign, is not the best twist to the tongue testing tale. I’m glad your consultant is on the ball – is it tomorrow that you get the results? My fingers will be very much crossed for you & some good news ♥