Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

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Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

Hi everyone

In August 2018 i was diagnosed with cancer in my mouth, after the long surgery in November 2018 i awoke to a whole new world. A world i was not happy with. The entire roof of my mouth had been removed along with a third of my top left jaw bone and accompanying teeth. they had removed all my left sinuses and 35 lymph nodes from my neck. Woke up with tracheotomy in my throat, what was called a trumpet in my left Nasal passage, a feeding tube and God alone knows how many different tubes and things in my body. I could not talk or move correctly and felt as if i had been ran over by a truck. My only saving grace was i was in the care of Peter Mac Melbourne Australia.

It has been a long recovery for me and still i have difficulties with eating, breathing through nose as is always blocking, left eye runs all the time, neck cramps up when ever it feels i am getting bored hahaha.

I can only open my mouth a few millimeters so my go to food is soup, thank God i like soup 🙂

As many people have found on this site, Cancer really is a life changer, there is the pain, the loss, the grieving, and in my case as a smoker the guilt of what i have caused to the people i love around me.

i often get cellulitis in left side of my face now and i puff up like a balloon for several days. if i want to eat i need to stretch my jaw open by stacking paddle pop type sticks one at a time until i can get no more in, this gives me around 5 millimeter jaw opening so yeah i wont be having steak for a while. Doctors say not much they can do about my jaw opening, then remind me i nearly died.

It is such a normal thing to open your mouth to eat, to yawn, to yell at the world, or to kiss a loved one. Having this taken away from you can be shattering.

Through reading others peoples battles on this site i will carry on and keep my head up high. I will strive to improve my situation as best i can each day, and forgive myself when i don't have the strength to try anymore.

Some things people can not understand despite all there good intentions, unless they have walked in your shoes, how could they?

Before i go i will quickly share a story of my operation day with you.

I was up early and on the train to Melbourne, feeling scared, alone, anxious, and all kinds of other unhelpful feelings.

Departed the train and thought i should grab some takeaway as a treat knowing was going to be a long time until I was able to eat easily again.

A quick couple minute walk and was in line in Hungry Jacks waiting for Burger and Fries.

was not feeling hungry but was determined to enjoy last meal best i could.

As i waited in line a small boy of maybe 4 or 5 at most walked up to me, i could see hi Father and sister way back in the line waiting eagerly like everybody else.

There was no doubt he singled me out, walked straight to me, passing many on his way.

He looked up at me smiled and simply said God Bless you and then simply turned and walked away.

I am not religious and in fact am an atheist, but having said that i am in tears now just from the memory.

It was what i wanted to hear and never knew i needed to hear, but the little boy knew.

Anyway i wish everyone on this forum, and those who are not a quick strong recovery, plenty of love and good times, and the reaching of all your goals and wishes.

Cheers 🙂

6 REPLIES 6
Super Contributor

Re: Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

You've made me cry with your story about the little boy.

I'm sorry for your situation. Life's a bitch, but we love it, don't we. We put up with a hell of a lot of pain just to live another day. I'm extremely grateful for each & every day I wake up & get to share it with my husband.

I hope your situation improves as time goes by.

Budgie

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New Contributor

Re: Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

Thanks Budgie, what makes the story more interesting is the fact I was showing no outward signs of being unwell, and the boy was either Indian, Muslim, or something like that where I am white Australian. I hope whatever you or your Husband went through is giving you some rest now. Each day can be painful and trying, but we do our best for the ones we love. I wish nothing but blue skies, full bank accounts, and the love of family for you all :). Thanks for your response Budgie 

Super Contributor

Re: Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

Wow, that boy is special. Just think what the world could be like if there were more people like him.

You are very kind. 😊

I have terminal kidney cancer, 7 years & counting, so no rest for us just yet 😉.
All is good though at the moment, things are stable.

Take care @Kolt, all the best to you as well 😊


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New Contributor

Re: Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

Hey Budgie so sorry to hear about your cancer. I hope you have all the support you need and are doing the things you enjoy.

I can not imagine being in your shoes and will not pretend to understand the difficulties it must bring for you and your loved ones.

I wish all the best for you and your family, and hope you are at peace with your situation.

I have no special words of wisdom for you I am afraid, but wish you strength, freedom from pain and heartache, and good times with the ones you love.

🙂

 

Super Contributor

Re: Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

Thank you Kolt, but there's no need to be sorry for me. I'm in full acceptance of everything, no reason to complain. My life is good at the moment 🙂. I actually feel sorry for you as I think your situation is worse than mine.
Thank you very much. I wish you all the very best.

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Super Contributor

Re: Radical left Maxillectomy + Bilateral Neck Dissection + Tracheostomy + Free Flap Repair

Hi Kolt

I can’t find the right words to reply to you,except to say your story is very moving,the things I take doing for granted are an exercise in your strength and will power to even open your mouth for soup it obviously takes a Herculean effort on your behalf,don’t be hard yourself ,we are human and make  mistakes during our lifetime ,yes such a thing as a kiss with loved ones,what we take as a normal part of life you would surely miss,I can read that the little boy and  his god bless meant so much to you and still does,I send you best wishes,on your recovery I hope you get to taste a steak again, so very true ,unless someone has walked in your shoes it can’t be understood no matter how good their intentions are,keep up the good work you are a person of great inner strength.Where there is life there is hope you are living  proof of that.

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