What is your quality of life after a partial maxillectomy?

Thank you jazzyjoy! Sounds like you've been through a lot but have also gotten a good outcome. I appreciate your candor.

Jazzjoy. I agree with you. I am also not able to eat anything but soft and wet foods. Unable to chew normally so either purée foods followed with a liquid .. that does impact your quality of life. Going out to eat is difficult but I can sit with others while they enjoy their foods without crying

For anyone who would like to read more about the physical and psychosocial impact of a maxillectomy, as well as the process of longer-term "definitive obturation," you might like to read Kathleen Watt's recently published debut memoir, REARRANGED: An Opera Singer's Facial Cancer and Life Transposed (In 1997, Watt was diagnosed with osteogenic sarcoma in the right maxillary sinus).

Watt describes the endless rounds of medical procedures (chemotherapy and 40 surgeries over a decade) in beautiful, lyrical prose--with bravery, resilience, and hope.

Now, some people on this thread might see my book recommendation as a shameless plug (Note: I have already been called out by someone in this head & neck support group), but I can attest with all humility--and quite frankly, with all certainty--this book will resonate with you and your family.

I wish you all a very happy holiday and healthy new year.

Hello joylondon!

What an excellent book suggestion. Thank you so much for sharing this. I don't consider it a plug for the book, but rather a heartfelt desire to help others who are going through this terrifying journey. I'm ordering it. Thank you again.

Dear Coquest23,

It is *absolutely* my heartfelt desire to share Kathleen's story with head and neck cancer health practitioners, patients, and caregivers to give others not just detailed information about one survivor, but to encourage others to have hope.

When Kathleen was diagnosed with high-grade bone cancer (osteosarcoma) in her maxillary sinus, her chances for survival looked bleak. The doctors informed me--without her knowledge--to prepare for a funeral. I am here to tell you: head and neck cancer is not only treatable, in many instances, it is curable. Head and neck cancer is not a death sentence. You can beat the odds!

As Kathleen's caregiver, I teamed up with the doctors to be an *active* participant every step of the decade-long medical journey; And the doctors appreciated my (and our) intense involvement in their critical work. One of the major takeaways of the book is to actively participate in every detail with every member of your care team. Yes, it is overwhelming, but it essential to advocate for the patient. Surgeons and oncologists must see you as a person and not just as a disease to be treated. You must share your way of everyday life with the doctors so they can see you as a whole person; REMEMBER: you are not just *data* in an electronic medical file. Do not be afraid to challenge the doctors. Some people in the medical profession will balk at this approach (doctors, especially surgeons, have HUGE egos -- as well they should if they are going to be cutting and drilling in their patients' heads!), but there is no *one* person who has all the answers, and active participation in your own care (or your loved one's care) is empowering and in Kathleen's case, it was transformative.

Happy reading!

Warmly, Joy

Hello! New to the site! This was a very positive reply and it alone gave me hope for my cancer case! Looking forward to reading more about this.

I have lots of trouble eating and swallowing. I will have a swallow test on January 4. I had one once before and was on. Before chemo and radiation. Now is harder to swallow. Will this get any better? I can't keep losing weight and I am afraid of stomach tube. So are my adult children. I look at people eating the big mouthfuls of things I love to eat! Help! Will this get better. Will this cancer go away.

Hi @rosie100 Welcome to the Head and Neck group. There are doctors and treatments for swallowing issues but sometimes in the worse case a PEG tube is the only option. Not to say you can’t ever eat after that, usually you can or at least drink fluids. This all depends on the specific situation.
See how it goes January 4th and see what help is available. This cancer stuff sure is fun isn’t it.
I’m always the last to leave the table after I figured out how to eat and swallow carefully. It took a few years. Can you keep me posted as to your results?

Hi @2ndjourney and welcome. If you have any questions or would just like to share your experiences please jump in. Lots of eyes on this group and it seems nothing is unique here.

Thank you very much! I definitely will be texting in with my story and questions. Just waiting today for some more info about my situation so I can, hopefully, get some advice/comfort here.