I’ve had a few episodes of unbearable pain during my hnc journey. Not many. My pain after the big surgeries and during radiotherapy was pretty well managed and I barely remember it. It’s the constant discomfort from mouth damage after recurrent HNC that troubles me the most.

But over the last week since my “debulking of granulation tissue” last Wednesday I’ve been in severe pain. Opiate level pain and no eating and drinking pain. 

I had the granulated tissue which had built up majorly on my “left alveolar ridge” or what I call my “left bottom gum” removed because it was growing up towards the upper teeth which actually caused the granulation because they kept biting on it without my knowing. I had my marginal mandibular nerve severed during my last big surgery in 2014. That whole area and my left chin have been a black hole ever since – no feeling.

The granulated tissue was removed successfully in a short op under anaesthetic (the awake intubation!) and I bounced back very quickly, going home the next day and feeling great. I didn’t wear my partial upper denture because I thought I should give the mouth a rest and I could wear a mask in public. This meant that my remaining eye tooth bit into my swollen and slack lower left lip and by Friday I was finding it uncomfortable to drink. By Saturday I was very uncomfortable and by Sunday afternoon I couldn’t eat or drink. It was too painful. 

I usually avoid looking into the carnage in my mouth but on Sunday I got a torch and a magnifying mirror and noticed a pearly white ulcer on my inner lip and assumed there were more further down where I couldn’t  see. I could actually see bite marks in the flesh near my outer lip. I assumed the inner lip was swollen after surgery and that was why it was so bad. 

The wound itself was like a narrow white sloughy valley below mountains of pale pink tissue, my two forearm flaps. It had black dots which I assumed would be where the blood vessels were cauterized. The wound had been left open because it “wouldn’t close”.

I was SURE the wound was not the cause of my pain. And indeed if I pulled my lip out or stuffed gauze in my mouth, the pain was bearable – almost! In fact if I wore my partial metal denture I felt better:  I assumed it mitigated the biting from the lone eyetooth. Overnight on Sunday I wore the denture all night and woke up to a broken filling down below! Fun times. But it did help me sleep with sleeping tabs, panadol and codeine.

Because I had an appointment with a prosthodontist on Tuesday, I thought I would wait until then to seek help. However, I was so sore on Monday morning that I reneged and rang the hospital nurse. She was wonderful and faxed through Oxynorm to my local pharmacy. My son came and stayed with me overnight so he could take me to the prostho way over town the next day and give me some company in the meantime. He can work anywhere.

Even the Oxynorm, my fave painkiller, didn’t work! It did make me pleasantly sleepy but stung like the devil when I took it. Nothing could stop the contact pain from those ulcers. I could barely force some water and protein enriched milk down. In fact I’d eaten very little since Wednesday! With a combo of sleeping pills and Oxynorm I did sleep quite comfortably on Monday night though – in four hour stages – after pacing the floor while the stinging from the liquid Oxynorm subsided slowly.

I couldn’t understand why my usually high pain threshold was being tested so much. I had a few moments of depression. Was survivorship worth it considering I was so damaged? Wasn’t it time for me at 74 to shuffle off this mortal coil?  Six and a half years of not being able to eat socially. A mouth that is absolutely disgusting and draws gasps of horror when seen by new inexperienced doctors. But I managed to push these thoughts away. No one has to look in my mouth apart from doctors and my life is full of purpose and strong passions for the things I am interested in. Love for my friends and family. (And two health care workers in the hospital said I looked remarkably good for my age!)

Maybe it was the lightly euphoric effect of the Oxynorm that helped me keep my good cheer as well as the sterling support from my son.

Tuesday am: to Middlemore to see the prosthodontist who had made me a mouthguard to stop me biting on the lower left gum. (I took 10 mls of Oxynorm before I saw him.)  I should have had the surgery after the mouthguard but when I got the surgical appointment I grabbed it because I thought a bit of biting wouldn’t hurt for a few days and there was no feeling in that area anyway.

What did he say? He said there was ulceration in the inner lip area (I’m not sure what to call this area) but that the wound itself was an ulcer. Even though I assumed there was no nerve activity there, he said there would be some. Ouch! My assumptions and self-diagnosis were wrong and if I had known it was partly the wound that caused the pain, I would have sought help earlier.

He rang the surgeon, who then rang me and apologised for my misery. He asked me for the name of my pharmacy and sent a script for lignocaine gel there. That is a story for another day because I’m not very familiar with the local pharmacy.  I go to one at my GP’s clinic. I think we both thought it would be good to go to the closest pharmacy because driving while Oxynormed out is not advisable.

The mix up over pharmacies is another long and convoluted story but eventually with the help of the wonderful hospital nurses I had Oxynorm capsules and lignocaine gel. The mouthguard did the rest and I started to feel much more comfortable.

It’s not over yet though. I have just tried to eat overcooked asparagus in cheese sauce. I had a craving. It was alright for a few minutes and then the pain set in. It was about an hour after swishing with lignocaine. Hmm. Not sure if I like lignocaine on the open wound and if it’s not going to allow me to eat, I don’t think I’ll take it unless I’m in great pain.

Nothing but milkshakes for me for the foreseeable. No tea, no coffee. Warm water isn’t too bad.

What is the moral of the story? A story that isn’t over until I see the surgeon in a couple of weeks. I don’t know: something to do with nerves, lone teeth, assumptions and serious survivorship issues that head and neck cancer patients have. I’m loath to ask for help and it’s hard to know WHEN to, especially on the weekend! Or WHETHER to.

I always advise other hnc patients to contact the hospital if in trouble, so …