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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 4 days ago | Replies (127)

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I really appreciate the advice it makes me feel a lot less alone and normalises the tumour for me in my brain. The phantom pains do sound annoying but I am sure it’s bearable compared to pain I experience now. I hope your mouth is better with the bugle in no time and the pirate smile makes others smile!

I was also wondering how bad are the scars and how long do they take to fade? Did you have to meet a councillor before the operation?

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Replies to "@hrhwilliam I really appreciate the advice it makes me feel a lot less alone and normalises..."

I'm also 2 years out and feel like I'm still recovering. I've been back to work and doing all the normal things since the 3 month mark but still working through the adaptation process. I also have struggled with my self confidence afterwards. I lost 35 lbs and at my age (52) it really affected how thin my face got which, bothers me. I strongly recommend a counselor. I've been working with someone for the past year and it is very helpful. I also work with PT and speech to help me work through some of those issues. My scars are very faded at this 2 year point. People that I have met now don't even know anything happened and are surprised to hear all I've been through.

Sorry for the delay in getting back to you. My scar, although about six inches long, is not really noticeable unless I turn my head away from the observer. I do also have a bit of a tissue lump under my chin. At my age and for what I have been through I really don't let it bother me. I am who I am on the inside and as long as I don't gross people out, it's all good. Now of course the leg scar where they got the bone implant from is a nice long zipper line which occasionally draws comments at the beach or golf course. I have toyed with the idea of getting either a fish head tattoo or a zipper pull tattoo but for now I simply say to the curious when asked "just don't swim with sharks." That usually puts a stop to such personal invasion. Still working on the bugle.
I hope all goes well with you. In the end you should be far better off and that is what really matters. You have a long life ahead and you should have the best life you can. Good luck.