Well, just shy of 4 years since diagnosis and I'm once again on the operating table. This is becoming an annual event. However this time it looks 80-90% like a tumour. A week to wait for the panendoscopy and then a couple of weeks for the histology and MDT. My neck has been feeling "different" (not painful or anything concerning) for a month. Routine check-up and not looking good. Offered a PET scan but I've opted for biopsy to confirm then scans to see the extent. Early days, but as it is in a similar location to a previous round (2) I will probably opt for surgery as before and hope for clear margins avoiding RT once again. Somehow I don't think this one will disappear before the main surgery like the last one did.
As ever - updated text in the thread below.
You have the advantage, Peter, of being ex NHS management. You know exactly how the system works beforehand. Most of us, shocked by a diagnosis out of the blue, temporarily like rabbits in headlights and not able to understand immediately the ramifications of our decisions.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
I did not get that anticipated appointment today as the scans had not been reported in time for the MDT. Such is life it was always a really short time period for reporting. I can't attend next week as I am in Edinburgh Christmas shopping so it will be the 19th before I can start to make some plans.
The good news is that I had an MOT with the GP yesterday and other than a pesky cancer I am fit and healthy 
Please excuse the somewhat flippant post - it's a cut and paste from my Facebook post. I've spent the last 24 hrs in Southampton and RUH Bath so I've no energy to write a proper post!
Anyway grilled the oncologist at Southampton for a couple of hours before I was comfortable with the treatment plan, then did all the other bits like Dietician and SALT. Insisted on a PEG/RIG as Southampton only do NG and I said I'd not have that. Salisbury will do that procedure. Then got home to find my Mother in Law having a suspected stroke. So off to RUH. Somewhat happy outcome as it looks like Bell's Palsy, but 3 hours sleep and knackered. So here is the post...
"
An update on my head and neck cancer. It seems like it's taken ages to get to this point, but that's mainly because we are fitting in appointments around trips away. Self care is never more important than at this time 
Appointment at Southampton yesterday. We knew what it was, just not how extensive it is. The short answer is that there is a tumour just right of the center line of my tongue at the base - that's a long way down the throat, especially when the consultant wants to actually touch it! The really great news is that there is no spread outside of the primary site.
Because I've had multiple surgeries to try and get this bugger in the past, and not yet got it, we are changing tack and going with radiotherapy.
This will be 6 weeks of daily radiotherapy in Southampton. Unfortunately it will be on the actual tumour AND on both sides of the neck to try and mop up any stray cancer cells. Fortunately chemo will not be in the protocol as there is nothing in the lymph nodes (well they were removed nearly 3 years ago looking for the cancer!)
None of this will start until after the New Year (I hope). Probably the first thing will be to have a feeding tube inserted into my stomach through my abdomen. It is likely that the trauma of the cure will preclude me from swallowing after 2 or 3 weeks into treatment.
Following this there will be a CT planning scan and mask fitting. Darth Vader will look tame compared to me 
Then the real deal starts! Probably around the end of January.
Southampton was really good and honest about explaining the treatment and the consequences, both short and long term. They agree with my expectation that I will be out for 6 months before things even start to heal in any meaningful way. Of course, it could be a lot longer or, hopefully, shorter.
The big bonus is that the Dietician told me to eat, drink and be merry - sod the weight gain and make the most of enjoyable food as it's probably going to be a long while before some/all taste returns. And, as a Brucy Bonus, I googled that you can actually take alcohol through the feeding tube and it has a miraculously instant and strong effect
After 4 years of chasing this I think we are both glad that there is a chance of definitive treatment even thought it is going to be incredibly tough for both of us to get through it."
Just to note... I'll not be doing alcohol through the PEG!
