Lower mouth cancer. Tumour surgically remived in 2020, but catastrophic damage to chin, neck and lower face. I've been waiting for attempted corrective surgery for nearly 2 years. I have immunotherapy (Cetuximab) fortnightly. I should be very grateful, but I'm too scared and embarrassed to be seen out, so I only leave the house for medical appointments. I have an amazing support network, including a wonderful oncologist, a caring GP and an incredible Macmillan nurse, but I still can only get by one day at a time.
Steve
That is so sad. You should talk to Chris. He has has walked a really rough road and has overcome much. Have a read of his profile here chris2012
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Steve, I am sorry to hear you are struggling with the results of your surgery, i have had three big operations one in 2008 which was the floor of the mouth cancer, 2009 was the biggest operation with the reconstruction of my lower jaw, and lastly, i had my voicebox removed in 2010. I had lots of skin/ tissue grafts that came from my lower leg stomach and wrist. My stomach is a different shape due to the surgery but most of all the lower part of my mouth and chin are so different from how i used to look with no lower teeth. It all to do with the reconstruction of my lower jaw which involved taking a bone from my lower leg and making a new jaw bone. I never really took any notice of how i looked and still don't this is because im still the same person. I have never had any members of the public be horrible to me quite the opposite, i still do the same as i used to by going out shopping, socializing etc. Is the reason you have not had corrective surgery because of the immunotherapy? I even go on holidays abroad with my brothers and sister as it helps build self-confidence. If you click on my name you will be able to read about what i went through. Please don't let this stop you from enjoying life focus on the positive side of things, i know it can be hard and we all get setbacks from time to time but life is good now even though i cannot speak and have a feeding tube in my stomach, thankfully i can still swallow thin liquids. Please feel free to contact me if you need further help or reassurance, you can do it. Wishing you all the best.
Chris
Hi Steve. So sorry to hear that your surgery was so invasive and having to wait so long for corrective surgery. It is great that you have such a supportive network. Over time I have had 3 big ops for jaw cancer starting in 2013 when I had a mandibulectomy then in 2019 left maxillectomy and in 2022 right maxillectomy so then I had no upper jaw and only one half of a lower jaw. I had to wait a year for another op to have implants attached to my cheekbones so that a titanium plate could be screwed to them with dentures then attached to the plate. In the year that I had to wait for this op like you I was very embarrassed about how I looked. I had a very sunken face and found it hard to come to terms with this new look. I used to go out but only with a mask on and would not let anyone take a photo of me. I did not know when I was going to have the op and was in limbo waiting. I then decided that I could not keep on living like that with my life on hold just waiting. I had a think about it and worked out what I wanted to do to try and help pass the time waiting for my op. I joined an exercise group for the over 50's, started volunteering at my local library. I went to these activities with a mask on and if it arose told people that I was waiting on an op. This was a game changer for me. It helped pass the time and gave me something to think about other than cancer. I had even got to the stage where I was contemplating starting to go out without the mask as it is amazing how people don't really look at you that much when you are out.
Could you take a step towards getting out more by going to a cancer support meeting where others will understand your concerns. Macmillan will know where they are so contact them. Could you try and build up your confidence by going out with a support person to the local shops and have a wander around. You could wear a mask if that helps boost your confidence. Don't let this set back stop you from getting out there again and participating in life. Talk to a counselor from Macmillan as they will be able to help you too.
Sending you positive thoughts
Lyn
Sophie66
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