In January 2022 at age 29 I was diagnosed with Laryngeal Cancer. I had been suffering from a hoarse voice in May 2022 and had managed to be seen by an ENT specialist in June. I was then diagnosed with silent reflux and was prescribed reflux suppressants such as Gaviscon. For the next few months I would continually take things like Gaviscon multiple times a day in the hopes that it would improve the condition of my voice. For a little while it did feel like there were small improvements but my voice still remained hoarse.
Over time though my condition started to become worse and by October I ended up losing my voice completely. I had also begun to take notice of a few new developments in my body. I had started having difficulty breathing whenever I exerted myself even just a little. I had also found a lump on the side of my neck. Another trip to see my GP and I was informed that because an ENT specialist had seen me within six months then the chances of me getting another appointment were slim. I was prescribed 4 weeks worth of Omeprazole. My voice returned slightly during those 4 weeks but was still incredibly hoarse. After my follow up appointment with the GP they sent a request for me to be seen by ENT again. At this point I started to take notice of my weight. Since being seen in June I had managed to lose almost 20lbs. At first, I thought it could have been diet changes that I had to make to help with the supposed acid reflux but the intensity of my weight decline really started to alarm me. At this point I had also stopped being as active as I used to be, I went from working out 4 days a week to none. I did everything that I was told to help stop the symptoms of acid reflux and nothing was working. Then in January I lost my voice completely again. That is when I really started getting desperate. After discussing my options with my girlfriend Lauren we decided that it would be best if I went with private medical care, something I thought I'd never have to do in my life. I was seen on January 13th (Friday the 13th of course) and underwent another endoscopy. It didn't look good. I was told the possibility of what it could be and got booked in for a CT scan and a biopsy.
The next few days I tried my best to keep it out of my mind. Nothing was confirmed so there was no point worrying. January 23rd was my biopsy. The hospital kept me in overnight in order to monitor me in case any swelling occurred after the biopsy. The next day I spent most of it on the ward in hospital waiting to be discharged and sent home. Literally just as I was discharged and about to leave, my results had come back. It was Cancer. Stage 4 laryngeal squamous cell carcinoma that had spread to my thyroid and potentially my lymph nodes. However, it was treatable. But it required me to have a complete Laryngectomy. The CT scan results had shown that I only had 4mm worth of breathing room left and it would only get smaller as time went on. Surgery was on 2nd of February. I received a letter with an NHS ENT appointment from the second referral before going private for the 1st of February. The realisation hit me that if I had waited for the NHS, then I probably wouldn't be here today. Just a warning that the next part might be a little graphic.
Surgery turned out to be complicated. Due to my windpipe being so small I wasn't able to be intubated normally and the plan was to do so whilst I was semi-lucid. The idea was that I'd be given anaesthetic to help loosen me up and then they would attempt intubation. Unfortunately, I passed out from the anaesthetic. This caused my windpipe to almost completely close. An emergency tracheostomy was performed in order for me to receive oxygen. This is where more problems happened. Even with the intubation tubes in, my oxygen saturation levels were only at 60%. The surgeons believed that this was due to a possible collapsed lung. To rectify this they pierced my right lung. This didn't help. I did however now have a collapsed lung. It turned out that both intubation tubes had found their way into only one of my lungs and had to be quickly reinserted. By this point I had been without a steady flow of oxygen for over 2 minutes. I was told that this should have caused me to suffer brain damage to the extent of having a stroke. They expected me to wake up without motor function in my arms and legs and also to not be able to recognise people. By some absolute miracle, this wasn't the case. It took 9 hours for the surgery to be completed. Full Laryngectomy, partial thyroidectomy and 100 lymph nodes removed. The first thing I remember after waking up was being told I had to have a drain inserted into my lungs. Another not so pleasant experience. I was then wheeled off to a high dependency unit for the next 2/3 days. This part was a bit of a blur for me (probably due to the amount of morphine). But after those few days I was eventually taken to my home away from home, Ward 26. I really can't express how grateful I am for every nurse and doctor that worked on that ward. Every one of them were a light in one of, if not the darkest period of my life. I spent the next 3 weeks recovering in hospital. Every few days a tube would be removed and I'd slowly start feeling a bit more human. One tube in particular still gives me nightmares but I'll leave that to the imagination. I was told post surgery that the margins were negative but they would still recommend radio/chemo to be as safe as they could be. Over time I'd start getting out for walks and doing some stretches and exercises. I had quite a lot of nerve damage caused by the surgery and even now I still struggle with movement in my upper body. I had to relearn how to use my tongue and also how to swallow. I also had to relearn how to speak.
Even though my voice box has been removed, I actually have a small prosthesis that allows me to speak. I do sound quite a bit different now and my singing days are pretty much over (to the delight of many). I then had 6 weeks to recover at home before the next stage of treatment began. 6 weeks of Chemotherapy and Radiotherapy. I had to say goodbye to some teeth before I could begin it too. I also had to have a feeding tube surgically put into my stomach to help with feeding during the treatment. This took two attempts which was inconvenient but I did get given some fentanyl on the first attempt so it was still a fun time. Second attempt was not so fun. All I'll say is don't be awake during a surgery. They did let me listen to Orville Peck during it though, that was nice. The first week of treatment seemed to going well until the weekend. Every Tuesday I would have Chemo and Mon - Fri I would have Radiotherapy. What I didn't expect was a stomach infection caused by the feeding tube. I spent the first weekend feeling absolutely terrible with no appetite whatsoever. I had spent the last 6 weeks trying to put on as much weight as possible before starting chemo and rads and unfortunately, I ended up losing most of what I had put on in the first week due to the infection. I did end up getting some antibiotics which helped clear it up but the next 5 weeks were still unbelievably tough. I think the best way I could describe it is like having a 6 week hangover that doesn't go away no matter what you do. It honestly made me miss real hangovers.
Around week 3 the radiation started to do the thing I was dreading the most. My hair started falling out. Its a pretty vain thing to be concerned about but it honestly was one of the worst days for me. I completely lost my beard and about half the hair on the back of my head. Even now my beard still hasn't fully grown back and probably won't ever fully return to what it was which was a really depressing thing to come to terms with. Once the 6 weeks of treatment had finished there was a little bit of time where things got a tiny bit worse but after the 2 week stage I was already feeling 100 times better. I decided to not bother waiting around any longer and get back to living my life as normal as I could again. At the end of treatment I was the lightest I had been since I was a teenager. The year prior I was 40lbs heavier. One of the hardest things I had to deal with was looking at my reflection and not recognising the person looking back. Since completing my treatment my focus has been to try and get back some part of who I was beforehand. I'm back at the gym which has greatly enhanced and sped up my physical recovery, I am very passionate about fitness and have used this as a challenge to push myself even further than I did before (who says larys can't lift?!). I work full time, have bought my first home with Lauren and we have a little Border Terrier Seelie. I'm out and being as sociable as possible, I travel and attend events as normal. I'm using my new voice and speaking to strangers to try and feel more comfortable with who I am now. I have also used my experience to help and educate others, I have spoken with multiple patients who are also having the surgery as well as medical students and district nurses.
I never could have made it to this stage if it wasn't for the amazing support of my family and friends. I want to thank every single person that helped me in any way they could including the Life After Lary group and many individual members specifically. Many of your stories gave me hope of what my life could be after surgery so thank you for sharing them. Even if it was just words of encouragement, I appreciate it all immensely and can only hope to repay it all back someday.
