Cancer and Bilateral Vocal Cord Paralysis (in a closed position)

Three weeks prior to five years of being in remission, I had a CT scan & blood tests to ensure my body was still in the clear. Sadly, I was diagnosed with Papillary Thyroid cancer (stage 2). The urologist that treated me at the time, sent me to a surgeon in the same hospital. I trusted the urologist with my life, so I had no reason not to trust his judgement on the surgeon he sent me to. I had a thyroidectomy on 8 November 2019, a few weeks before my 58th birthday, and the day that changed my life forever.

I woke up from anesthetic and could not breathe. The surgeon instructed the nursing staff to put me on oxygen. That did not help as there was hardly any space for the oxygen to go. I was discharged after a few days. On my check-up a week later, the surgeon sent me to an ENT in the same hospital. The ENT did a nasal endoscopy and confirmed Bilateral Vocal Cord Paralysis (BVCP) in a closed position. He told me that he will keep an eye on me for 18 months and only after that a decision will be made. 18 months! Not being able to breathe?

I could not do much before completely running out of air. It was best to sit at home, crochet, knot or watch TV. From an active person to that?

I would advise anyone being diagnosed with a thyroid problem, to do their homework! Find yourself the best thyroidologist and endocrinologist in the country. I learnt a valuable lesson – but too late! For that matter, not just people with a thyroid problem… any problem for that matter – find yourself the best possible specialist to treat you.

I was a member of my church choir (prior to thyroidectomy). Our choir master suggested that I should see a voice specialist. The one he suggested is well known in the theatre and production world here in Johannesburg. I made the appointment and saw the specialist ENT in March 2020. The ENT confirmed BVCP and was in shock that I was left to live like this for over four months. In April 2020 I had my first laryngectomy (they laser part of one vocal cord away – to create breathing space). My breathing improved; but the procedure affected my voice a bit. Unfortunately, my body creates excessive scar tissue, so I had to go back to theatre a week later to have scar tissue removed. Over the next 23 months I had ten procedures. Every time my breathing improved a little, my voice got worse. All this happened during the pandemic. I live alone and the ENT insisted that that was best. I have children and grandchildren but of course the risk of getting covid was too big, and I could not afford to get it. So, home alone, no voice, sick, depressed and feeling very sorry for myself for almost two years. It took about eight months before “sound” started coming out.

After lockdown I went back to walking Run/Walk For Life & cycling, but I sounded like an asthmatic. I also formed a lot of phlegm during exercise, so like my late grandpa, I would walk or cycle and those around me had to dodge the spit, which was quite embarrassing.

This year, June 2022, after quite a long period without surgery, the ENT decided to enlarge the breathing area as I was still gasping for air – even during a conversation.  I had three procedures this year – my breathing is fantastic (not like a normal person but probably the best it will ever be).  Once again, I had absolutely no voice. A person with BVCP (in a closed position) must choose between oxygen/ breathing and speech. Something that’s God given at birth, and most of us take for granted, I now must choose! Unfair or not – it is what it is! This meant that I had to go back to Rehabilitation – Speech Therapy (thank goodness I have a very good one) blowing bubbles in a cup, spirometer, lip trills FRUSTRATION etc. I wanted to give up, throw in the towel so to speak, cry, and have a tantrum, but there’s no benefit in that. I have seen so many heartbreaking scenarios at Rehab – and those patients showed me (unknowingly) that giving up is NOT an option.  

Currently, I can walk 10kms with ease (not as fast as I used to) and can breathe comfortably.  My Run/Walk for Life Club members encourage me a lot – they tell me that I am an inspiration to them. I probably am – and it’s great to know – though they cannot see the high mountain ahead or what’s really going on in my head and heart. I can cycle (on my e-bike) up to 90kms in one go and on my normal road bike – 18kms (last week) I am so chuffed.  I guess you would think I have nothing to complain about. Not true!  

Join us again next week Tuesday for Part 4 (Final) of Marty’s journey, and how she is overcoming her challenges with an I CAN mindset