As i posted yesterday, i went for my second check-up in 7months.
When i left the office Lorraine, a wonderful McMillan nurse,collared me in the corridor.
She told me they were writing a new PEG feeding booklet & would like my in-put. While discussing this, i mentioned this fantastic website & how the collective information on here is invaluable. I told her it was the Mouth Cancer Foundation forum & she said "Mouth Cancer?? Oh! I'd have never have thought of that for your cancer"
The Sussex Cancer Centre covers the H&N department for a huge section of the S/E & people could benefit greatly from the knowledge here,So explained that it represents ALL H&N cancers, not just Mouth Cancer. She said "oh, i'd have never have thought". So i think that demonstrates that perhaps people aren't quite as aware of the term Mouth Cancer representing the whole H&N spectrum. This frustrates me because many people must be missing out on our support and knowledge! Not just on the PEG feedoing issue. But every aspect of treatment. I hope now she's aware, she can pass on the info to other patients!