Hello! I was so encouraged by Kate Brown’s story that I wanted to know more about how others are coping with this life changing diagnosis and treatment. The cancer on the bottom of my tongue was diagnosed about 6 weeks ago. I had a partial glossectomy on Sep 10, 2019.

I’ve never smoked or chewed tobacco. Therefore, it was hard to diagnose by my local oral surgeons and ENT doctors. In fact, the local ENT doctor biopsy good tissue and told me I was going to be fine. I went through this for about a year and finally My primary care doctor recommended that I get another opinion outside of Tallahassee. I went to Shands hospital in Gainesville, Fl and they performed another biopsy and it came back stage one squamous carcinoma.

A team of surgeons Removed about a third of my tongue, took a vein, artery and tissue from my left wrist and repaired my tongue. I also had some lymph nodes removed and. advanced Doppler technology that Monitored the blood flow through the artery and vein and tissue in my tongue. The surgeons went in through my neck To reattach the new vein and artery. I passed the swallow test early and they were able to remove the feeding tube early before I went home. My Trach Hasn’t closed up quite yet.

I passed the swallow test postoperative and allowed to transition off of a purée diet. Of course, I’m struggling with that. The really good news, is that I am able to compose this introduction by using voice recognition! So, I am encouraged. Looking forward to sharing and learning from folks with similar experiences.

Hi L,

Welcome to the family. It's all scary stuff isn't it?! One of my coping methods is being on this forum. There are so many amazing people all sharing their experiences and helping each other through it all. No one will ever understand what you are going through except a fellow OC patient.

There is also a load of information on this site, which has been so valuable for me in making decisions around my own treatment.

For me, I'm nearly 7 weeks post surgery after having a sub total glossectomy (most of my tongue has been removed). Physically I'm doing well, healing nicely, rarely use my RIG (in the US it's a G-Tube) eating some soft foods, going out for walks. Mentally I need a bit more help, so I'm waiting for counselling appointment to come through, but that is down to my doctor.

How are you coping with everything?

Hey Dizz!

Great to hear from you! After reading some of your posts, I feel really blessed. This is day 19 for me after surgery and I was fortunate enough to leave the hospital without a feeding tube. My Trach is almost closed up. I am off pain medicine completely. I am nervous about my pathology report and if I have to get radiation and chemo therapy. I am cleared to eat regular food as tolerated, but that’s a real challenge! My wife is great at making smoothies and shakes using healthy stuff along with the ensure shakes. My energy level is very low and am very emotional! My name is Larry White and I live in Tallahassee, Florida.

I never enjoyed classical music, but it helps me relax. I’ve been forcing myself to walk and stretch. I also have been focusing on daily successes. I bathed my self today and changed all my dressings. I did need help with the ace bandage. I look for ANY improvement, which encourages me to live another day. Look forward to sharing with you!

Larry: It sounds as thought you are on the road to recovery. Hang in there. Check your mailbox for a message.

Hey Larry,

Wow it certainly sounds like you are cracking on really well. I completely understand about feeling emotional, you've been through the ringer. It's such a huge life changing event. Can you see if you are able to have counselling to help you manage your emotions?

Take your time with foods, you have plenty of time. Your wife sounds amazing, I hope you can experiment with your smoothies and shakes. I've been adding fruit and mixing the different flavours of ensure (chocolate and banana blended with frozen banana and some cocoa powder is very tasty, as is adding banana to the banana ensure and adding powdered peanut butter to help thicken it up)

Getting exercise, even on days when you want to curl up and hide, is really cruicial. Even gentle stretching will help. Massaging your scars will help too, I found it's helped me accept what I've been through, although I still have dark times (I'm seeing my Dr tomorrow to refer me for counselling)

You are doing so well though. I'm jealous of no feeding tube, but I know I might need it with my radiotherapy as mouth sores/ulcers are coming!

I'm in the UK, so some things are a bit different here, but not too much. Still same surgeries, similar treatments, just the meds have different names really.

I'm looking forward to reading your progress