"Cancer and after effects of Radiotherapy"

I was  diagnosed with stage 4 cancer of the base of the tongue in 2005. 10 weeks of radiotherapy, and three 2 day sessions of chemotherapy began shortly afterwards and was successful in destroying the tumour. The nursing care I received at the Western General Hospital was so bad that I eventually discharged myself and went into a private hospital. For instance, my nasal feeding tube became dislodged, and I got no nutrition for 3 days. 

The radiotherapy had a major effect on  my oral cavity soft tissue, and my swallowing muscles were affected. My teeth also started a rapid decline and I received regular 3-4 week sessions at the RAH Dental Department in Paisley. This dental care continued until December 2022, when I moved to Eat Ayrshire and commenced checkups and treatment at the Community Dental Clinic based in Ayr Hospital. That treatment is ongoing.

The oral effects have been severe. All my saliva glands have been destroyed, and this has had a major impact on my life. You don't realise how much you need saliva until you don't have any. It affects the foods I can eat, I have to constantly lubricate my mouth with water all day otherwise the level of a pain in my mouth soft tissue and throat rises progressively to the point where I need to take some morphine and get urgent lubrication. I have tried all the artifical saliva products but none of them have been helpful for more than a few seconds. Sometimes, my throat gets so dry that I find it increasingly difficult to speak. All of this has had a major impact on my social life.

My teeth are effectively in palliative care. I have had to have a number of extractions, due to calcium leeching by the radiotherapy aggravating decay. Other teeth are mere outer shells held together by fillings or temporary cement. This is all ongoing. Pieces break off my teeth spontaneously and often for no obvious reason as I do not eat hard foods.

Just over 2 years ago, I was diagnosed  at QE hospital with Osteoradionecrosis (ORN), following a major gum infection which caused agony, and my admission to a maxillofacial ward directly from an emergency outpatients appointment. I was in hospital for 6 days , on IV antiobiotics which cleared the infection. A scan taken during my stay led to the ORN diagnosis. It was clear that the left side of my mandible was losing blood supply and dying. After a while, things progressed to the point where some bone could be seen in my mouth, at the rear of my jaw. For a while, I received some medication which seemed to be the standard treatment from all the studies I read from around the world. The general opinion of these studies varied as to the effect of this drug regime, though no alternatives were offered. It felt like a 'suck it and hope for the best' kind of approach as surgeons had nothing else. Two x rays since then have shown the ORN to be slowly progressive, and now more of my jaw has died. I have also lost feeling in the nerve pathway down the left side of of face. When I am tired, I lisp,and it sometimes sparks inappropriately causing very bad pain for a second or so.

The emotional impact of having a condition which is deteriorating, and which has no cure, is extreme. One solution seems to be major intrusive therapy to remove my jaw, and replace it with bone from my femur. The surgeon described this as major high risk surgery which could take up to 12 hours. That would only become necessary if I had a major spontaneous fracture of the jaw, continual major infections, or crumbling of the dead bone. If it came to that, I would consider taking my own life, so that I could die with dignity, with my wife and son present.

My maxillofacial care is now in a kind of limbo. The surgeon felt there was no point just seeing me every three months or so to say hello, when essentially, he doesn't need to get involved unless something else happens to my jaw.

In the meantime, I have tried to use my condition in a positive way, trying hard not to dwell on the probable end game. I have given some lectures to Dental students at the Glasgow University Dental School, telling them what it has been like to live with a condition that is effectively slowly rotting my facial structure from the inside. I am a shy man, and do not generally want to speak publicly. Yet my first talk, at a lecture theater in the Dental Hospital, facing banks and banks of students ... over 100 ... flowed naturally and I spoke frankly about my journey to date. I received a kind letter of thanks from the Tutor who arranged the session. It was my view that every bit of  embarrassment I felt, was worth it if it gave even one student just a little more insight into the horrible effects of this relatively rare condition.

That talk was given just before the covid lockdown. I had ended the session by saying that "I had had cancer, the cancer did not have me." But, since the diagnosis of ORN, I am not so sure. The cancer seems to want to get the last word in after all, and it did have me. When I go, though, it will be with dignity and not through months of suffering in a hospital, assuming I survive the surgery. 

Thanks for reading this. It was difficult to write, but necessary I felt. I am happy to talk to anyone about my condition and journey if it is felt it might help them better come to terms with what has been the most unpleasant 16 years of my life.