Posted By: nurse Newly diagnosed.. Waiting for surgery - 03-09-2017 06:53 PM
Hi, I was diagnosed with SCC on right side of the toungue, CT shows no spread to lymph nodes.. It's been 3 weeks since I got the news and just received my surgery date.. Another 3 weeks of waiting.. They will do partial glossy tony and neck ressection.. Will have a trach and tube feeding post op.
I am 42 years old married with 2 kids.. I am also a nurse, I have worked in many different areas and spent about 5 years as an icu nurse, so fortunately or unfortunately I know a lot... However have not been on the other side before.. Scary as can be!! I have amazing people around me supporting me but still... I feel like I have so many questions about what I will be like post op and how long it will all last for.. I am grateful for having found this site as it's always good to know that others know how you feel and that they got through it.. The waiting is brutal.. Can't wait to get this thing out of me and yet I do not look forward to the post op time.. Worried about my kids, husband and rest of my family.. Worried about how I am going to get through it all.. Any advise is welcome.
Posted By: ChristineB Re: Newly diagnosed.. Waiting for surgery - 03-09-2017 09:22 PM
Welcome to OCF! You have found the very best place for info and support.

You may have a much different point of view and experience than someone without a medical background. By being in the "biz" your physicians may go into much more detail about your condition, treatment and recovery.

Im very glad to see you have lots of people supporting you. If you can line up helpers now that would be a great resource for your family while you are hospitalized and early in your recovery. During your hospital stay you will likely be unable to talk and be uncomfortable hopefully have your pain well managed. If you can line up to have someone stay with you at all times that would be great. This can help to give your husband a break as Im sure he will have his hands full with the children and visiting you. I also suggest eating all your favorites now. You dont want to have cravings when you arent physically able to eat.

Best wishes with everything!

Posted By: tamvonk Re: Newly diagnosed.. Waiting for surgery - 03-10-2017 07:18 AM
Hi Nurse, you will get through this. I know that it is very scary right now. Try and keep busy these next few weeks while you are waiting. How about filling the freezer with meals for your family now while you have the time. This might take 1 worry away from you.
Someone who has been through this surgery should come along soon with some advice for you.
You will get through this.
Tammy
Posted By: Vanpaddler Re: Newly diagnosed.. Waiting for surgery - 03-10-2017 03:51 PM
Sorry you have to be with us, but welcome! You have a bit of an advantage, being more familiar with the overall process than most of us were. I'm sure it's still pretty scary though.

I had a similar surgery and timeline as what you are facing. It was scary, but my friends and family helped me through it. We went crazy, binging on movies and going out for dinner as if it would be my last meal. Somewhat morbid I suppose, but it was really great to be able to keep my mind busy & escape from all the constant thinking & wondering what is going to happen.

Make sure you have a notepad and pens/pencils (with spares because those damned nurses steal them, haha). Or a whiteboard with dry erase marker and something to erase it with, is an even better option. You most likely won't be able to speak when you get out, and have all this crap hanging from various places on your body. This will be how you communicate in the first few days.

The trach was the worst, for me. It slowly plugs up with thick saliva & then you start to worry that you won't be able to breath. Even though I was in a step-down unit with about 3 nurses per 5 patients, it could sometimes be a few minutes until the nurse could come by to suction out the trach. Terrifying when I was laying there unable to breath, but couldn't sit up because they have a NG tube down my nose, a bunch of gauze and what looked like a cardboard French fry container strapped on my wrist, an IV drip, heart rate thingie clipped to a finger or toe, a catheter, etc.

Then you get over the hump and it all gets better from there. Get out of the hospital once you prove you can eat enough calories without the tube, head home to more familiar & relaxing surroundings, etc. Not sure if you'll end up getting radiation, but I did, about 5 or 6 weeks post-op. Then 5 weeks of getting zapped five days per week. After healing significantly after the surgery & feeling a lot better, this happens & it's also not very nice. I didn't find it nearly as bad as the surgery though. Some people have problems with being strapped down to the table and having that machine hover over them, but I thought it was actually kinda neat. Not to mention my mindset of accepting that I had cancer, accepting that I knew much, much less about it than these professionals that do this for a living, and letting them just do their jobs & help fix me. And for me, motivation to get back to life as it was before this chapter began.

You can do this. You have a husband who can help you through this, kids to fight for, and probably other family and friends who can also step up & pitch in where they're needed. Simple things like coming over to your place to help clean, prepare some meals, lend you some books & movies to watch (because you will have a LOT of downtime & you can only sleep so much).
Posted By: nurse Re: Newly diagnosed.. Waiting for surgery - 03-10-2017 05:21 PM
Thank you for your responses, I am trying to eat as much as possible.. Trying to think of all the food I will miss and trying to gain a few pounds too.. I am already uncomfortable due to the lesion that is on the right side and bottom of my toungue, but I know that I will probably beg for this discomfort post op when I am in real pain.
I have a question for the moms.. My kids are 7&9.. I have told them that I will have surgery and that I will be in hospital for around 2 weeks..I know what I will look like with the trach and scaring and tubes.. I don't want them to be scared but 2 weeks without seeing me may be worse, any one have experience with this?
My mom will be staying with us while I am in hospital and for a few weeks after to help with cooking and with the kids.. What did you do to get enough protein post op.. I am not big to start with and do not want to be too skinny.. Any advice is welcome. I am so grateful for this forum it's amazing to have somewhere to "talk" where people know where you are and where you are headed.. Hope you all are keeping well..
Posted By: Aandj Re: Newly diagnosed.. Waiting for surgery - 03-10-2017 08:45 PM
Nurse,

My hub will also be having surgery this month. Waiting for the surgery date to be set was nerve wrecking. They had to coordinate with plastics. It will be on the 27th. I also wonder about what to expect post-op. He relies on me to help prepare him. I wonder what is a realistic timeframe to return to work. His job isn't very physical but requires driving. He will also be getting radiation.I'm sure we share many of the same worries
Posted By: Vanpaddler Re: Newly diagnosed.. Waiting for surgery - 03-10-2017 11:01 PM
Consuming enough protein - actually just enough calories in general will likely be a problem. Lots of Christine's posts mention her milkshakes. I made myself one or two of those every day & added a scoop of whey protein powder. It's a diet fairly heavy in dairy & I'd do my best to make those milkshakes taste differently. I'd add coconut milk, or various fruits, etc. But my favourite and most calorie-laden ones were chocolate and peanut butter. Some days I would just not feel like having dairy, so I'd just have a couple of drinks of protein powder mixed in a shaker cup with plain water, then have some soup & a glass of green juice. Eventually you'll heal well enough to be able to eat softer, more solid foods. If you're an egg fan, then it'll be easier to meet your daily protein needs.
Posted By: Alpaca Re: Newly diagnosed.. Waiting for surgery - 03-11-2017 06:15 PM
Is your husband having radiotherapy too? I would say that with surgery and radiotherapy you would need a few months off work although I have heard of people working through treatment, would you believe. After surgery alone you can feel quite good quite quickly but in my case (back when I was working as a substitute teacher) it took me a while to get my confidence back to return to the workforce. Every occupation will be a bit different. I remember the radiation oncologist say 7 months recovery for surgery and radiotherapy.
Posted By: nurse Re: Newly diagnosed.. Waiting for surgery - 04-18-2017 03:29 PM
I have had partial glossectomy with neck disection. Post op course was really hard, had 5 days of brachytherapy direct to the tongue.. 3 out of 28 nodes are positive so will be having 5 weeks of radiation with one day of chemo each week.. not at all what we were hoping for.. but this is life.
I am happy to be home now recovering with my amazing family around.. trying to eat enough calories before starting rad and chemo as I understand it will be difficult to eat due to throats pain, although it is difficult now due to continued tongue swelling, my mom is an amazing soup maker and is working on her smoothie skills. Still contemplating having a peg. I'm airing on the side of no as I believe I will be able to push through the pain and get enough calories and worse come to worse I can have a nasogastric tube put in if I really can't.. any advice or thoughts would be great.
Posted By: WendyinGa Re: Newly diagnosed.. Waiting for surgery - 04-26-2017 04:13 AM
Hi, Nurse...i just wanted to throw in a tip to help communicate. I looked into text to speech apps for my phone..They are actually pretty good and free. It might making speaking with your kids a little easier than them reading everything. Good luck.
Posted By: Elainy Re: Newly diagnosed.. Waiting for surgery - 04-26-2017 05:42 AM
Hello Nurse & everyone,
My name is ELENA & I wanted to give some tips on communication. During the time that you won't be able to talk. I know it can be frustrating. I have 4 suggestions.
1) boogie board. It's a 4x6 LED handheld board that cones with its own pen. You can write on it n at the push of a button it erases. I live with mine attached to me. (So to speak) try amazon it runs about $30 but sometines on sale for $15
2) the text to speak "FREE" APPS Are wonderful I use them alot. I simply write what I want to say. Then the voice speaks aloud. You get choices of cute accents as well. Lol
3) check into the SAMSUNG CELL PHONE with stylus pens. This cell phone is awesome. It makes my life so easy by using the stylus pen that's attached. Im not a fast typer so writing is so much faster for me. Theres an alternate writing app that simply allows u to write with ur stylus pen then transfers it into a typed out text, letter etc
4) the tablet.....you can download an app that allows you to write with your finger. I especially use this gadget for when im in the dark n i need to communicate. Such as church, movies, in bed....the screen lights up and when u write to speak for yo u r self, the person can easily read what ur writing .

I hope I covered alot for you. I found the NO VOICE was actually harder for me then NO EATING...I HAVE 1 SUGGESTION to help you manage ur feelings while u R unable to eat. Im an old fashion Italian girl. N what do Italians do the most????...we EAT...WE COOK. WE EAT.. I never got upset around my family's table u know Y...bcuz 10 min b4 we all sat down. I filled up with my ensure. So by the time I got to the DINNER TABLE i was so FULL...HAAAAA so I used the time to sit n enjoy my family......GOOD LUCK TO YOU ALL . YOU ARE ALL TROOPERS...Best wishes to you all.


Posted By: MrsSmitty Re: Newly diagnosed.. Waiting for surgery - 05-04-2017 10:17 AM
Hi, Nurse..... I hope your surgery went well.
Can I ask you a question? What were your signs symptoms?
Posted By: ChristineB Re: Newly diagnosed.. Waiting for surgery - 05-04-2017 12:38 PM
MrsSmitty, not all patients will experience the same signs or symptoms. Many OC patients will not experience any symptoms at all until the OC is a Stage 4. Thats why its important to get to the right professional who can help you. Not every OC patient has an identifiable tumor the doc can see. Thats why they do all the testing to make certain there isnt something hiding somewhere. But this can be difficult to discover as the scans only pick up things bigger than a grain of rice.

Posted By: MrsSmitty Re: Newly diagnosed.. Waiting for surgery - 05-04-2017 06:20 PM
Good Afternoon, Christine.
You are amazing at following up on peoples posts and comments! Thank You!
I posted a question or I should say a plea for advise last night and then today asked a posters what their signs/symptoms were. You responded to that.
Your response has me thinking....
I had a MRI of my head/neck about 1 month ago....In your opinion if there was something going on in either my submandibular gland and/or tongue would the MRI pick that up?
I am seeing an Oral Surgeon on Tuesday. I have been to 2 different ENTs. Called a well known medical center today asking to be scheduled with an ENT who specializes in OC, only to referred to a well known cancer center. They told me my best bet was exactly what I was doing.....
I look forward to hearing from you! smile
Posted By: gmcraft Re: Newly diagnosed.. Waiting for surgery - 05-04-2017 08:49 PM
Welcome to the forum, MrsSmitty. Glad to see that you are finally going to see someone who can give you a definitive answer. I hope everything will go smoothly for you.

ChristineB is the heart and soul of this forum. We all are grateful for her support.
Posted By: ChristineB Re: Newly diagnosed.. Waiting for surgery - 05-05-2017 03:42 AM
Mrs Smitty, I started writing this hours ago and thought I sent it but Im sorry to say it was just sitting here unsent.

Usually OC patients get checked with CT and PET/CT scans. At least I have and many of the patients Ive talked to over the years have as well. Your question is not as easy as it sounds. A grain of rice is so very tiny to pick out in an area bigger than your fist. Without a medical background I simply dont have the education, training and years of practice etc to be able to even make a guess. As we both know, this is much too serious to take a guess at. From my understanding, its not only the test, its also the tech giving the test, the tech reading the test and there could be even another who creates the lab report. Im very sorry but I do not know if an MRI would be the right exam for you.

This link should be helpful to you in learning about how to diagnose OC.

OCF Main Site --- Understanding/Diagnosis
Posted By: Leila Re: Newly diagnosed.. Waiting for surgery - 05-07-2017 02:31 AM
How many days have u not had pain ?
May I ask u this ?
Posted By: ChristineB Re: Newly diagnosed.. Waiting for surgery - 05-07-2017 03:30 AM
Leila welcome! Who are you asking your question to?

Please understand what one patient experiences another patient who on paper appears almost identical can have the exact opposite symptoms, reactions, etc. On our website you will see this phrase ... everybody's different. Its soooo true when it comes to oral cancer, treatments, recovery, recurrences, etc. For example... two patients who are the same age, sex, height, weight, similar lifestyles, tumor stage and location, even treated at the same facility can have completely different reactions to their treatments and recovery. One could sail right thru with barely anything more bothersome than a scratchy throat while the other patient could struggle every step of the way. This comes down to even more variables such as their family bloodlines and genetic predisposition. Im sorry if this doesnt help to answer your question. If you can please post some of your basic info in a new post in the Introduce Yourself section Im sure we would be able to help you with what you want to know.
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