Hi just thought I'd pop on and update my journey. Now just started my two monthly appointments with max fax this coming week so that's a good sign. All going really well. I had tongue cancer stage 1 no node spread Feb 24. So it all began then. Now down the line and definitely a good few worries and anxiety of ulcers popping up over time I'm doing really well. I can eat everything except spicy food but I'm ok with that. I'm still doing all my exercise classes every week and feeling good. Still doing my jaw and neck exercises daily and they definitely help. Sometimes all we have to do with our mouth and neck is annoying but it's worth it to help ourselves. On a really positive note along with the amazing amazing help from Mac millan and swallows head neck I am starting the first support group in northern Ireland patient lead on 2 nd Oct. We had our launch 2 nd September and it was amazing. Full of health professionals, carers, patients, and speakers. It was the most emotional inspirational night and I felt sooo proud that from we torturing the hospital staff for support and nothing available I kept going and knew swallows were in England and spoke to them for support and went to their conference last Nov in Sheffield so I knew we could have this support group in NI if only someone pushed and was willing to do it so it all went from there. Macmillan got us a grant and wow they were absolutely out of this world with all the help over the past 9 months. Everything was so professional down to the tiniest detail. So the first patient lead head and neck meeting happens next month. To say I am proud is an understatement. The speeches on the launch night were amazing and Chris, Sharon and Fiona were all there too. A room full of consultants, dentists, RT , SLT, dieticians , cns , hygienist,everyone but most of all patients who have no support after finishing treatment and have noone to talk to for support. A really positive ending has come out of a negative beginning and I am so proud I kept going and got it in the end. Thank you Macmillan you have the most amazing workers especially the two ladies who went from the beginning to the end with me and got this all going. I can't thank you enough. So from next month NI will have it's own group.
