A brief history - It seems hard to believe that this time last year I was feeling swamped by seemingly endless appointments for scans (MRI and CT) biopsy, blood tests, oncologist, ENT consultant, pre op assessment and on. I was 66 years old at the time and had been very fortunate that to that point I had never required any sort of hospital visits. Any thoughts of hospital treatment would have been daunting but add to that the mention of the C word and my anxiety was off the scale. My diagnosis was T2 N1 M0 squamous cell carcinoma of the right tongue base, p16 positive. I had never heard of its existence before but that was now definitely no longer the case.
The treatment was six weeks of daily Radiotherapy plus chemo in week one and week 3, and so after being fitted up with a mask for the radiotherapy treatment and preparation to have a feeding tube inserted we were underway. I made myself a wall chart from a large piece of paper divided up into 30 squares representing each of to 30 days of radiotherapy with a movable sticker (of Iron Man in my case) which was to be moved every day as I moved towards the 30 day target - has anyone else done anything that daft? The idea was to track my progress and encourage me that I was getting there! I'm not sure that succeeded as initially it just highlighted how far I had to go. Anyway, I did get there and the radiotherapy itself was painless, side effects kicked in at about week four and my neck became quite sore, requiring dressings where the skin was breaking open, but was manageable. One of the main unexpected challenges was trying to find a car parking space at the hospital and then driving home in rush hour which tested my sense of humour on quite a few occasions. Also having to find places to store the endless boxes of Fortisip which kept arriving!
A big thank you to the hospital team who cared for and supported me throughout the treatment, the ENT consultant has been absolutely brilliant, his explanations, care and continued encouragement have been amazing but the oncology team, radiographers, dieticians and nursing staff are incredible. Following treatment I underwent a PET scan which showed some avidity in a lymph node and a follow up was arranged. This seemed worse and a neck dissection seemed likely. However an ultrasound guided biopsy and third PET scan was much more encouraging now showing a decrease so I will at this point continue with planned follow ups which is a relief. Thanks though to people who have recorded their experience of undergoing a neck dissection on this site as whilst obviously not pleasant doesn't seem necessarily quite as scary as Dr Google might suggest.
Additional things that have been helpful along my journey are - comments and support on this site, its been a great reminder that I'm not the only one experiencing this and psychologically, often more than physically, we probably find ourselves in some very dark days. The experience of people and the encouraging words they offer are extremely helpful. Also I came across and downloaded a recommended article placed on this site titled After the treatment Finishes - Then what? written by Dr Peter Harvey. For most people, well certainly me, it's a real challenge to return to any sort of normal, and he looks at the rebuilding process after treatment. I found this very helpful. If you enjoy a read, like me I would also recommend (if I'm allowed to on here) a book The leopard in my house by Mark Steel who relates his experience of throat cancer treatment, in an often lighthearted way.
Anyway, one year on and starting to feel more upbeat about things. I don't expect the what if's to disappear anytime soon but they are becoming more spaced out. I have even been brave and booked a holiday, where previously I have felt reluctant to shuffle far outside my comfort zone. Thanks to everyone sharing and enquiring on this site, my best wishes to you all, whatever part of this journey you find yourself on.
congratulations on approaching your 1st anniversary.. it's definitely a milestone in your recovery.. I'm 18 mths out, and still adjusting to my new normal, which over the past couple of months has meant regular visits to the dentist, which are still ongoing.. getting your head around what is, is in itself a battle, whether mentally and/or physically, but here we are, so let's get on with it.. onwards and upwards, eh.. again, congratulations.
Loz (62)
Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..
was wondering if as iv'e been using it for a year I could revert back to normal toothpaste?
Hi. The answer is no. We are on high fluoride toothpaste for life I’m afraid.
I have a fluoride varnish at the hygienist every three months too.
Great update to celebrate a real milestone. Well done .
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
