Hello everyone,

Good news, doesn't look like cancer has spread Cancer is in both soft tissue and bone of jaw so Im having surgery in 3 days to remove part of my jaw bone and replace with a bone graft from my hip. Will have tracheostomy and NG tube for a few days and home from hospital in 7-10 days. Radiation will likely follow the surgery. Will be a big op and recovery but I have a great team working around me and wonderful family and friends.

Thank you all for your kind wishes. I hope the same for you too.

Hello! Good luck and hope you get well as soon as possible. Im also young and i know how hard it is to be in situation like that with a whole life in front of us. Be optimistic and think that soon you will be healing and happy!

Best wishes!

Ps.: i also used ng tube!

Hi Rachel,

That's great news that it hasn't spread! I had a very similar operation to you including the trachie, feeding tube and my graft was from thigh (14 hrs). It must seem quite daunting to you now (I was very scared before it), but it is completely do-able.

While its awful to have to confront this at your young age, it is actually your youth that can help you to heal better/quicker as well.

I found a whiteboard & pen help with communication after surgery and I found using the "thumbs up/thumbs down" sign language when the nurses asked me a question really came in handy. Oh, and don't forget to ask the nurse for painkillers before your drains come out of your neck & hip (just before you go home).

Anyway, I'm sure you have enough to think about so I'll go and just want to wish you the best for a successful surgery & your recovery.

Cheers,
Margie

Hi Rachel,
Best wishes to you over the next few months. It sounds like you are facing the challenge head on with a wonderful attitude. That is 90% of the battle.
Prayers on Monday. Let us know how things are going as you can.
Blessings,
Kathy

Hi best of luck on the surgery the trache sucks!!! Been there hated that the most!!! (next to rads!) Martum is right, white board, pad of paper, iPad ... Etc... communicating is hard. I had a similar surgery except they rebuilt my tongue - 14 hrs. Trache (ack!!) feeding tube, and out in 10 days (time off for good behavior?) I was told 10-14 as well. We'll be sending good wishes and prayers your way on the day of - lets us know how it goes! Hugs!

Wishing you all the very best with the upcoming surgery Rachel.
I am also familiar with the tracheostomy and NG tube having both when I had my original 14 hour surgery.
Glad to hear that you are happy with your team, family and friends. It all goes to making it more doable.
You also have some great tips from Margie and Cheryl including the whiteboard which I also used to communicate.
Getting the nurses to suction the tracheotomy site when it needed doing was sometimes difficult when they were busy. After a few days (and the worst was over) one of the nurses showed and set it up for me to do it for myself.
Please update us when you are able�..again thinking of you and wishing you all the very best.

Hi everyone,
I'm home from hospital after 8 days. Surgery went well, hated the trachie the most but luckily it only lasted for 2 days. Started liquid diet 6 days post surgery, and feeding tube came out on day 7 (woo hoo!). I have moderate pain and lots of bruising on my hip (had hip bone and muscle graft) and quite a bit of pain in my mouth but I'm doing pretty well overall. There is still lots of swelling outside my mouth which could take months to go down, if at all. The swelling inside my mouth is not great and makes it had to swallow but I'm looking forward to that going down over the coming days/weeks. I will find out if I definitely need radiation in a weeks time. Until then, I'm on pur�ed food, lots of rest and recuperation. Thanks for all of your concerns, I hope you are all doing well. If anyone had advice/tips on this post-surgery phase, anything from oral hygiene to food ideas to waiting on radiation results they would be extremely appreciated
Rachel

Great to see that you are home Rachel and are already able to eat-all be it a liquid/pureed diet.
If you put pureed in the search box top right you will come up with lots of reading with suggestions by many who have been there/done that including me
You may want to have a look at this link where Christine has listed a lot of possibilities.
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
Good luck with the healing and keep asking if you have any questions. There are heaps of us here to help

glad you're home and doing well! Try investing in a water pick you can use I on th lost setting with the tongue cleaner tip - i add. Bit of non alcohol all natural mouth wash and it shoots it around my mouth and leaves you feeling fresh - lik a shower for your oral cavity... Good luck.

Hey Rachel,

Glad to hear you are home and the operation went well. It took about 9 months for the swelling in my face to go down completely, but it eventually did. I am now looking forward to some reconstructive surgery this year.

I'm not sure by now if you know whether you'll need radiation, but I'd recommend you eat as much as you can before the radiation starts. This is mainly because you may lose your taste buds and/or the inside of your mouth feels like its very sunburnt making it difficult to eat. I would highly recommend getting 'Sustagen - hospital strength' from the chemist as it is great stuff with loads of protein (which you probably know helps with healing). I still have 3 scoops daily in my banana smoothie.

As far as oral hygiene goes, the nurses gave me a home-made recipe for mouthwash: half teaspon baking soda/bicarbonate, quarter of a teaspoon of sea salt in a glass of warm water (pre-boiled if your newly out of surgery). You can add mint leaves to help the taste. Also, Colgate have just released a mouthwash for dry mouth sufferers (I have extensive dry-mouth due to 2 x radiation on both sides of my mouth) and the mouthwash also has extra fluoride... which you need more of if you have dry mouth because you no longer have saliva to help protect your teeth.

Also, when I started cleaning my remaining teeth after surgery I started using cotton-tips/ear buds then progressed to a childs soft toothbrush until eventually I could clean them as normal.

Oh, and I used to make up my favourite stew as normal and then put it in the blender... it didn't look good, but it tasted awesome!!

That's probably enough from me at the moment... I hope you continue to heal well and I hope that I've been of some help.

Take care,
Margie