1 year post radiotherapy and struggling

I’m at my wit’s end, I’m almost 12 months post radiotherapy and 14 most post surgery (half tongue removed and reconstructed with free flap forearm).

I keep having blips, here’s a few:

– Auto immune reaction in mouth causing extensive ulceration.
– Sickness returning on and off
– I STILL  have my peg
– My oral food intake is extremely limited ie scrambled egg, beans, sweet potato, cauliflower, bread sauce, Weetabix, kings mill muffins,  1 brand of pizza. Ice cream.
– Cellulitis which turned into septicaemia.
– Thyroid problems and we are struggling to get my levels right
– Thyroiditis aka Hashimoto’s

Currently my mouth is extremely sore, my cheeks are bleeding after every time i brush my teeth as is my “new tongue”.  Almost every time I try to eat I get a burning sensation which is so severe I can’t even cry. My jaw is so so sore at the joints and has even partially dislocated a few times in the past few weeks.

I have only eaten Weetabix and a few bowls of ice cream all week.
I’m feeling desperate and like I’ve gone backwards so so much. Arggggghhh.

Falsey smiles atm.

I hope that by writing this blog I can help others in similar situations take comfort in the fact that they are not alone. Please help me reach more people with my blog by sharing my posts on Twitter and Facebook. If you would like to follow my story, please sign up to the mailing list so that you can be notified as my blog is updated. Should you wish to get in touch please feel free to use the ‘Contact Me’ page to fill in your details and I will respond to you as soon I am able. Thank you, Stephanie x

6 thoughts on “1 year post radiotherapy and struggling”

  1. i can imagine how hard it is.. my mum suffered from oral cancer, and she has the same problems you describe, she lost most of her teeth during radiation and since her mouth was reconstructed, she cant open it wide enough for a dentist to do something about it…
    but you know what.. you are a survivor. you fought Cancer.. which is fatal, you are still alive. hang in there, it will get better…
    sending positive thoughts your way..


  2. Hey Hun, sorry you are not keeping well at the moment. It’s awful when you get those, one step forward, 2 steps back times, and it sounds like you are going through one of those at the moment. You were having such a good run for a long time, I wonder if that’s why this is hitting so hard.
    Is there anything the dentist can recommend to help with your teeth cleaning that might be less traumatic on your teeth and gums? I know with everything else it is just a case of plodding on with it, especially when it comes to the food, and it must be very frustrating having such a limited menu available to you.
    Sending gentle hugs xx


  3. sorry to hear you suffering so much. hope it gets better for you soon. may sound silly but have you tried using a baby teethbrush theys is softer and easier to use, I started use them after my mouth surgery and they better than normal ones, so might help you. big hugs x


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