It was late October 1999 I was a month into my 42nd year and it was just an ordinary day but one that changed my life in so many ways. A life that I am so grateful to still have. I felt a lump on the right side of my neck. Four months later in late February 2000, after GP appointments, dental and then Hospital, I was finally diagnosed as having a Squamous Cell Carcinoma.
Things then moved very quickly. I was referred to a local Teaching Hospital where I underwent a radical neck dissection and removal of my right tonsil. The primary cancer was found in my tonsil and had spread into my neck and lymph glands. I was in hospital for 10 days. However, after being discharged I ended up back in hospital with a venous sinus thrombosis. I had felt unwell but now had double vision. This delayed my radiotherapy as my mask couldn't be made as my face was too swollen from steroids.
I recovered well and finally started radiotherapy, not knowing the impact it was going to have on my life further down the line. Apparently, I was prescribed very aggressive radiotherapy and whether it was the amount prescribed, the fact that it was 25 years ago or just an unlucky reaction, but I was a mess of oozing blisters and skin. Back into Hospital again I went, recovered and home again.
Life then carried on as normal. During the years that followed I started to notice a variety of health issues, and it culminated in me becoming so ill that 15 years later I was off work for quite a while. During that time, I was having increasing problems with breathing, joint pain, swallowing, eating, dizzinesss, shaking, nerve damage, skin flushing, extreme headaches, anxiety, my blood pressure was extremely labile, extreme fatigue and brain fog. Throughout this time, I had an amazing GP listened to me and who acted upon my requests for help. To cut a long story short, at my request from research I had done she emailed 3 Doctors for advice. A Professor replied suggesting a neurologist at the Autonomic Unit, UCLH Queens Square London. This Neurologist had already replied to her email within 20 minutes! He replied that normally he would have me attend his clinic first to be assessed; however, from all she had told him about my history, he wanted me to go down to London to be tested by the Autonomic Scientists. These tests culminated in me being unequivocally diagnosed as having radiotherapy-induced Afferent Baroreceptor failure and Autonomic Dysfunction.
I then took Medical Retirement from the NHS where I had worked for 20 years. The relief that i felt that I now knew why my health had been worsening over the years and the reasons why I had the problems I did was enormous. I had gastric problems also and because I was getting no answers here in the north, they arranged for one of their gastroenterologists to see me who diagnosed dysmotility and lack of oesophageal peristalsis caused by radiotherapy damage. Also, I had a slight stroke a few years ago and was found to have stenosis in my Carotid Arteries caused by radiotherapy. One was 100% blocked and the other 70%. My BP cannot be controlled with drugs and so I was taught strategies to help as I have constant massive swings in BP throughout the day which is very exhausting and may eventually negatively influence my organs. I cannot praise UCLH highly enough as they keep a constant check on me.
Four years ago, my Larynx worsened and now both vocal cords were paralysed. I now was fed via peg tube. I made my own blends as I was determined to remain healthy. I was advised that at some point I may require a Tracheostomy or Laryngectomy. The thought terrified me. However, I was constantly having chest infections from aspirating reflux and the bit of food and liquid I chose to swallow.
Breathing and speech became increasingly difficult. I was then referred in November last year to a large Teaching Hospital for a Laryngectomy. Due to NHS politics and lists, I had to wait until I finally had it on May 22nd this year. Those 6 months of waiting were difficult; I live alone so choking or being unable to breath was a major fear I had. The potential length of surgery was also a concern due to my comorbidities. I had a wonderful Consultant though, who performed a full Laryngectomy with an SCM flap in under four hours. Other flaps may not have worked for me due to tissue damage. The surgery went well, and I came out of theatre and into recovery feeling ecstatic and so relieved. I was on ICU for 1 day, and then onto the Head and Neck ward. I was able to do all my own self-care by the following day. My swallow test was passed on day ten and home the following day. The staff were amazed at my understanding of a Laryngectomy and how prepared I was. The credit for most of that goes to LAL and I try to promote whenever I can as the group is amazing and a credit to the hard-working Admin team. I am now 4 months post op and having a Laryngectomy has already had a positive impact on my life. Obviously, breathing changes and isn't always easy but so much better than it was. I've had a nasty chest infection (a couple of days after leaving hospital). I am now eating again, with a little difficulty but no more choking and aspirating. I've put weight back on, feel healthy and getting out for walks more again. I go out and about and even though I am non-verbal I don't have problems communicating. However, I am hoping to learn oesophageal speech and use the electrolarynx with family (who have been amazing with their love, support and understanding) when we are all together and I want to be heard. The future now looks brighter, and I am incredibly grateful, so Onwards and Upwards!!
