6 months after tonsillectomy, neck dissection and chemoradiation - update.

Well, it’s now 26 weeks since I finally limped out of the ‘Varian 2’ RT room and rang that bell. And what a time it’s been.

Today I had my 6 month check up - a face to face with my fabulous registrar, no less.  And after the obligatory pummelling of the neck, poke about in my mouth and camera up the nose he pronounced that everything looked fine. Phew! Relief! 

Like all of you in here it has been an eventful journey, (and if you want to read more about it just click on my ridiculously long profile.) 

Anyway, at the six month stage I’m feeling pretty OK. Energy levels are pretty much back to normal, (I still enjoy an afternoon nap, but then I always did), my sense of taste is almost back to what it was before and I’m eating normally, albeit a little more slowly due to an annoying lack of saliva. (For example, if I eat my favourite, toast and marmalade, I still need to have a drink nearby as dry stuff can still stick in the throat.) However, I don’t wake in the night with a mouth like a sandpit nearly as often as I did even just a couple of months ago, so that’s progress. 

I still need to do daily exercises to keep my neck and shoulders supple and these have worked well. I’ve got full movement back in my arms and shoulders, however my neck still feels a bit tender and lumpy and I have to be very careful in the sun. Sometimes my dissection scar gets maddeningly itchy and the only way to relieve it is to hold it under a hot shower. (Bliss!) I still have very little feeling along my collar bone, but feeling is returning to my face. I still have no stubble on the right of my neck so I’ve had to wave bye bye to my former, and rather fetching, Silver Fox beard!  A small price to pay. I also have to massage my lymphodema away twice a day but it is definitely reducing, albeit sloooowly! 

Inside, my ex tonsil site still feels rough, sandpapery almost, but my registrar says it’s just scarring from the RT and may well always feel like that. Understandable I guess. However, it’s not sore, just irritating. He also said not to worry about the white stuff on my ex tonsil. (Not that I’d even noticed it!)  It’s all part of the healing process, apparently.  

I finally managed to get to see my dentist yesterday and he said my teeth were fine. He seemed to know all about the risks of RT to teeth and gums and suggested I visit every 6 months in future rather than annually. (Ch-ching!) 

So that’s me after 6 months. I can’t deny that it’s been very tough at times with lots of scares and plenty of dark-night-of-the-soul moments along the way, but apart from my weird throat, tender neck and dry mouth I think I’m approaching about as normal as I’m going to get.  I can definitely see some dappled chinks of light through the undergrowth ahead of me, but am acutely aware that I’m nowhere near out of the woods yet. These are still relatively early days, but if this really is the new me, and as long as the little bugger stays away, then I’ll be more than content.

All of us who’ve been through, or are going through, this know that it can be bloody scary at times, especially in those early days with all the unknowns and quite understandable fears.  But please do take heart and try to be optimistic because, although it can be painful and depressing at times, this type of cancer is eminently curable and we must hold onto that.

I have to say that my NHS team have been absolutely brilliant not only with their treatment but also at giving me truthful answers and giving me hope. From my surgeon, who always manages to make feel I’m her only patient in the world, the specialist team who were always on hand if I got in a tiz, to the oncology and chemoradiation staff who jollied me along when I felt scared and low. The words don’t exist to thank them enough. 

I must also say a special ‘Thank You’ to the people in here who’ve suffered my ramblings and anxieties over the past ten months or so and have thereby helped me on this journey. You’ve been an amazing help. 

I wish everyone else every success in their treatment.