Hello.
Looking for words of wisdom.
Three weeks past radiotherapy therapy. Still very sore, is this normal.
Also getting pain in my teeth which feels like nerve pain when I brush.
My tongue nerve was damaged during tonsilectomy Nd my left hand side of tongue was painful but manageable before radiotherapy, now it's so stiff and burns - has anyone else experienced this? Or have any idea if it will improve? Scared I am going to be dieing with chronic pain for the rest of time.
Jane
Three weeks past radiotherapy therapy. Still very sore, is this normal.
Yes Jane. Radiation peaks two to theee weeks after treatment end so you are at the height of discomfort. It’s a question of time. Look at about 12 weeks before you turn a corner and six months when you should be fairly comfortable with your recovery.
Don't abandon pain relief. I was on morphine still at 12 weeks before a gradual withdrawal.
You should be getting a review in a few weeks time so make sure you say if you need to tweak your pain relief.
Contact your CNS if you feel you need something quicker than that.
It does get better.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Jane
sadly totally on course. I like Dani was still on opiates around 12 weeks before a slow withdrawal don’t come off meds too soon. The treatment we’ve been through is brutal but it’s worth it these days times will become a distant memory honestly. Yi7 might not think it niw but remember the treatment doesn’t stop after last one it continues to work for many weeks. The first 2 weeks of my recovery I slept a lot fed and kept hydrated I wasn’t very good company for a while. I had ulcers and burns the entire length of my tongue watch out for oral thrush as well. Oral hygiene is vital I was doing it at least 3 times a day some days took 30. minutes so was sleepy eat teeth repeat.
stick with it you’ll start noticing improvements around 12 weeks but aim for 6 months . I’m 7 years next month since diagnosis and apart from slight fibrosis on right side of neck. and an aversion to spicy food I’m living a great life.
hugs Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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