Good morning all,

I want to start off by saying how wonderful it is to find a group like this. I am forging a journey to find as many resources for my mom who is the OC patient. At this time, I live near DC and my mom lives in FL. She as been diagnosed with Stage 4 squamous cell carcinoma of the tongue. Glossectomy is scheduled for next Friday, July 7th after a whole body PET on July 3rd. This is the 3rd occurrence of oral cancer for her and by far the absolute worst. She was supposed to have surgery for a partial glossectomy and removal of lymph nodes on right side of neck on June 23rd, but the surgeon and his team halted their original plan when they where able to see exactly how serious the cancer was. It seems this time the cancer is more aggressive and rapid than in the past.

I am doing all I can from a long distance to help my mom ask the right questions of the surgeon and oncologist, etc. so that her decisions are made with as much confidence as one can expect to have in this situation. We talk all the time so that she knows she has support. There is no family that lives near her and my stepdad has failing health as well. She is terrified of a permanent feeding tube, the tracheotomy that is necessary with her upcoming surgery and I want to inform her gently of what to expect so that she isn't struck with an incapacitating fear when she wakes up from surgery.

I have 2 small children and a husband with a very demanding schedule (he works from Dept of Homeland Security) so trying to plan my trips down as best I can. I want to be there for her every step of the way.

For those who have gone through this, I welcome any and all answers to the following questions:

1. What is the best time for me to go (before or after surgery)? Was it helpful to have a familiar face there when you woke up? (Trying to plan my trip but I have some obstacles- mainly no one to watch my kids as my MIL who would do so ordinarily just had major surgery herself.)


2. What advice would you give my mom who is at the start of her battle to fight this cancer?


I have been reading posts all morning and am so amazed by the courage, determination and strength of this group. Thank you for reading this.

Welcome to OCF! Has your mother considered having this taken care of in your area? If that is an option maybe your parents could stay with you during treatment and recovery? That would help you to solve the traveling there issue.

Sounds like her surgery will be a big one. She should have someone with her as much as possible while shes in the hospital especially since she will not be able to talk. Even if its posted on the door in big bold red letters, staff will still walk right by not noticing and expect her to talk to them. Plus she will probably be in quite a bit of pain and should have someone there to help monitor her pain meds.

You're doing the right thing by reading and learning about your moms illness. There are tons of tips here that can be passed along to her. She will need help, so anyone who offers their assistance tell them when the time comes you will contact them for help. Theres a million and one small things that can be done to help make this as easy as possible for your mom.

If your mother needs further treatments of radiation she will need help with someone to drive her back and forth to treatments. I suggest contacting the American Cancer Society and asking about help from their volunteer driver program.

Best wishes!!!

Tough situation you're faced with. To answer your questions - If I had to choose between the before OR after surgery, I think I would say after. That was when I needed the most support from my wife. (If at all possible, try to also get down there before also and help get her things in order. But again, if I had to choose, I would choose after surgery.)

You can help her get a support system in place. Rides to and from the hospital for the surgery and possibly chemo or radiation treatments. Coordinate with the hospital and verify all insurance issues have been addressed. Find out where she keep all of her important papers that you may need to access. If she ends up using the PEG tube and pump for nutrition, make sure she understands how important her feeds are to her recovery and long term health.

There are so many things that can be talked about in great detail.........But I think the most likely feeling your mother will have is the frustration from losing her ability to verbally communicate. If she doesn't have a smart phone, or a I-pad, buy one for her. Texting and email may be her only means of communication with your or other family members. The fight to rid herself of cancer will be her focus in the near future, but there is also a psychological / emotional adjustment to be dealt with long term. The latter is sometimes a tougher one to break trough.