Well thought it was worth doing a quick update on this blog, incase anyone else has a similar journey to me.
I'm now 19 months post surgery and I'm supposed to be on 2 monthly check ups at the moment but a few Hic cups since August have meant it's gone back to every month.
Had a funny feeling in my throat in July/ August last year. Have had a few things looked at to try and see if there was any thing unpleasant causing It. I've had an MRI, barium swallow X ray and a camera popped down there and nothing significant to see.
I've been told I'm anaemic twice now, and been given iron tablets to take but they really don't agree with me and I take them for a while and then they drift off and gradually go back to feeling fatigue again. Could be to do with heavy periods too.
I've also had a swelling come up on my left jaw ( side of surgery) twice now. The second time I managed to see my consultant for an emergency appointment and he sent me off for an X-ray which didn't show any problems with my teeth. He gave me 2 weeks of clindamycin and at the check up 2 weeks later decided to send me for a PET/ CT scan. He said it could be osteoradionecrosis but he just wanted to rule everything out. The swelling has gone down now although this has always been a slight swelling in the jaw area.
My official diagnosis is now just carcinoma of left sublingual salivary gland. They don't seem to have ever been able to be more specific than that. Back on the waiting game for the results of the PET/CT scan at the moment.
In terms of how life is different now, I'm eating most things, although it's not as easy to eat and I do have choking scares from time to time. Water with every new really helps. My speech isn't as clear as it used to be, but I can be understood on the phone. I do get quite a dry mouth.
There is a little numbness and strange feeling in my neck, but it's not painful. A bit of a "turkey neck" around the scar, and the arm flap is still an interesting scar, although the one on my stomach has healed the best.
And now we wait for the next lot of results....
