Tonsillar cancer. Three weeks until end of treatment.

Hi y’all. This is my story so far if it helps anyone.

I’m a 63 yo male. On holiday in Cornwall in early August I rubbed my neck and found a solid lump, like a walnut, under my right ear. I assumed it was a gland and wasn’t too worried. Once home, what with Covid and things, I didn’t want to pester my gp so left it for a week to see if it would go down. I actually thought it had probably reduced a little, but in an idle moment filled in a form to consult my gp anyway. He asked me to go up and see him, pummelled me round a bit and thought it was nothing but said he’d refer me to a specialist. I didn’t want to wait due the Covid complications in hospitals so ended up paying for a consultation, the first time I’ve ever done that, and saw a ENT specialist the following week. He thought it was probably tonsil stones but said he’d refer me anyway for a FNA. I wasn’t particularly worried and spent a carefree week or two enjoying summer walks.

A few days after the FNA I rang his secretary for results. She said he wasn’t available but she’d get him to ring me. Alarm bells began to ring. He rang me late afternoon and said it wasn’t the news he’d wanted to give me. Squamous cell carcinoma in the lymph node. Probably tonsillar in origin. Wow! I was floored! 

(Of course I immediately consulted Dr Google, frightened myself half to death and quickly resolved to only use reputable sites and listen to my surgeon and her team. So many google articles are either way out of date or populated by trolls it’s hard to sift out the intelligent or genuine information from the dross.)

The following week I was scheduled for a CT scan. They couldn’t find anything. The following week I was invited in for a MRA. They found something. The following week I went in to meet my ENT surgeon and her team who put a camera up my nose and showed me this nasty, scabby little tumour sitting on my right tonsil. I wasn’t sure I actually wanted to see it but they showed me anyway before I could object! They were totally supportive and positive and reassured me that this was probably curable. I then went in for a biopsy and panendoscopy under general anaesthetic and was told it hadn’t spread and was operable but I could also just have radio/chemo if I wanted. The prognosis would be exactly the same. (It was HPV 16 driven.) I just wanted the damn thing out so signed up for surgery - tonsillectomy and neck dissection.

I was admitted on October 8th and they did the tonsillectomy and neck dissection at the same time. The op was carried out robotically and I felt ok afterwards. Although it got progressively more painful afterwards, especially on day 3, the pain control was superb. My shoulder hurt and I was numb from my ear lobe to, and including, my collar bone. I’ve done lots of neck and shoulder exercises and now pretty much have full use of my shoulder. The numbness is still there though.  I had a weakness in my right lower lip, bruising to the nerve, but that is slowly recovering. I was sent home after 6 days to recover with a sack load of meds and a regime of paracetamol, ibuprofen and oramorph to manage the pain. My very worst experience was crippling, impacted constipation after about 3  days back home. Agonising and messy (sorry!) and probably due to the oramoroh, which I then stopped using. But I was put onto Movicol, eight sachets all at once, and it shifted in within four hours. Miraculous stuff! (I’ve written a more detailed post about my surgery elsewhere. I’d have done a blog but don’t know how to!)

I have to admit that I found all the waiting for results and the anxiety over potential outcomes incredibly draining. All possible outcomes were constantly circulating in my head, I wasn’t sleeping at all, literally, and couldn’t concentrate or enjoy anything. My gp put me on 10mg of Citilopram (an anti depressant) and gave me Zoplicone sleeping pills, which are only temporary as they are highly addictive. They work though! The Citilopram has been brilliant. I began functioning more normally and began looking forward to things after about ten days and am now sleeping largely with no aids at all. 

Back for the histology ten days later. They’d got it all out and 1 out of 29 lymph nodes was affected. The lower margin was tight due to it being near the carotid artery, but otherwise pretty good news.

I’d already agreed to take part in the PATHOS project, designed to track people like me and the effects of surgery and adjunctive therapies on swallowing and which involves a series of swallowing x-rays along the way. I was subsequently randomly allocated to the ‘30 sessions of radiotherapy alongside 5 of chemo’ group. Belt and braces, as they say! I must admit I wasn’t overly happy about the chemo too, but was resigned to the RT since I have two friends who’ve had this within the past three years. One had robotic surgery and radio. The other just had radio and chemo. Both are doing fine over two years on.

So I had the mask fitted and was given my dates which were due to end on Christmas Eve. I was all ready to go in the first Monday but at 6 pm the Friday before the hospital rang and told me my treatment would be delayed by a week. Psychologically this was a hammer blow, but I sucked it up and prepared for the following week. That was a week that dragged! Treatment is now due to end on January 2nd.

Week 1 of radiotherapy was surprisingly ok. I’d had eye holes cut into my mask, as I get a bit claustrophobic, and they’ve been a godsend as I can see everything going on and don’t feel so enclosed, despite my head being pressed down onto the table. It is fascinating watching the little lead sliders moving back and forth as they control the shape of beam as it tracks an arc around my neck. So far so good.

Week 2 was ok. My neck began to burn a little, especially around my dissection scar, and I could feel changes beginning in my throat. (I was given FlamigelRT to help with the burning and that is quite soothing. At night however I prefer to smother my neck in E45 which moisturises it.) My swallowing was still ok (no feeding tube needed as yet) and I could still taste things. I could just manage takeaway fish and chips and enjoy them. By the end of the week, however, it was becoming a little uncomfortable. The Chinese takeaway we had delivered on the Sunday night was fairly tasteless and battered pork balls chopped up small were hard to swallow. No more takeaways! 

So today I’ve finished Week 3. It’s hurting more now.  I eat a lot of porridge, with honey, raisins and cream (lots of calories) and can still enjoy that even though it’s bland.  I’ve got a pile of Fortisips that I’m just beginning to drink and we make a lot of soup so I’m getting vitamins. Scrambled eggs and pasta are good too. It’s a bit galling as my eating was pretty much back to normal after the op but now it’s going backwards again. 

The chemo started out as Cystplatin but I reacted with bad tinnitus so they changed it to Carboplatin at week 2. Two sessions later and I feel fine on it. I still have some tinnitus but it is not as bad and is manageable. Two more to sessions go. Fingers crossed. 

I’ve found physical exercise hugely beneficial and have set myself a target of walking a few kilometres each day. I walk largely in the dark to avoid people and viruses. The dreaded fatigue hasn’t set in, nor any nausea yet, but I’m realistic and know it may well happen.

I’m being very careful over oral hygiene. I didn’t need any teeth out and apart from a sore gum, so far so good. Fluoride toothpaste, interdental cleaning sticks and mouthwashes are keeping things under control so far. I’ve got one or two small ulcers on my bottom lip. 

I get a very dry mouth now. Sugar free chewing gum is brilliant at producing saliva and I always keep some Extra gum with me. I also bought a little humidifier for £14.99 which sits silently on my bedside table puffing out jets of water vapour all night. It’s made quite a difference to my dry mouth and I no longer wake up for drinks nearly so often. 

So here’s to week 4. Fingers crossed! 

That’s my journey so far in a nutshell. I’m sorry to have been so long winded but it’s hard to know what to leave out.

Wishing all fellow travellers the very best on your own journeys.

M

ps avoiding Covid has been another major issue. I’m swabbed each Monday morning and have been told that if I test positive my chemo will stop. R/T would continue, however, under very strict conditions.