Tongue cancer

  • 4 replies
  • 47 subscribers
  • 205 views

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. 

  • The future is bright and the worry and  anxiety getting less. It's still hard at times when you see an ulcer or something in your mouth appear but life has to go on and keeping a positive outlook especially with a group of people who have gone through head neck cancer will definitely help as they fully understand what we went through. I never thought I would get to this point when I started my cancer journey back in Jan 24 and was terrified of what was in front of me. But here I am today and I feel really positive and full of life again. Jackie xx

  • Jackie, I think what you have done is absolutely wonderful. You’ll never realise just how much of a difference you will make. Do post any links you have. It would be an honour to be a voyeur. Hugs. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Most will never really understand the terrifying journey that head and neck cancer patients take on (and their carers), long and arduous, couple of steps forward then four back, but there is light at the end of the tunnel and good outcomes for most...best of luck with the group, a great initiative.

    Michael

  • Aw thank you Dani. I never thought in June 24 after op head neck dissection and 30 sessions of RT that I would be sitting here today at the point I'm at. Head and neck cancer is a real journey and only people who have gone through it fully understand. We live with the after effects daily and the constant reminder of what we went through and what we are left with so anything that can help people and get people out the other end is so important. I wish I had of had it when I needed it face to face . Thank you Dani xx