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New to the group

New to the group

Posted by Norm on Jun 28, 2020 5:31 pm

Hello.

I underwent oral surgery the first of January. Never was sick a day in my life and than BANG it caught up with me.
Hoping someone who has gone thru this can help me understand why I can't seem to get back to normal.

Re: New to the group

Posted by Brighty on Jun 28, 2020 5:49 pm

Norm‍ welcome! What type of oral surgery did you have specifically? Do you mind sharing?  I know that oral surgeries  can take months and months for recovery.    It's a slow process.   Did you ask your oncologist?    I will pass your post to Ken Anderson‍     law‍  and JamesT‍  who went through  oral cancer and can better advise.       
Help is out there. All you have to do is reach out.

Re: New to the group

Posted by Norm on Jun 28, 2020 6:04 pm

thanks Brighty..  I had 60% of my tongue removed. The removed all but three of my bottom teeth and cut my jaw up the middle. .They  made a new tongue from my leg,

Re: New to the group

Posted by Norm on Jun 28, 2020 6:05 pm

It was a 12 hour surgery.

Re: New to the group

Posted by Brighty on Jun 28, 2020 6:11 pm

Wow Norm‍  they can do so much medically these days!     I'm sure the people I tagged will get back to you soon.   I'm just going to run an errand then I will.look up others for you to chat with.     
Help is out there. All you have to do is reach out.

Re: New to the group

Posted by Norm on Jun 28, 2020 7:04 pm

Thank you Brighty. Nice to know there are still people in this world that care about one another.
 

Re: New to the group

Posted by Brighty on Jun 28, 2020 7:15 pm

Oh  forsure Norm‍ ! This site was a lifesaver for me.   I found LoriTat‍ 
​​​​​​Walk2BuffyMelty‍ 
KittiesandColin‍ and Lainie‍ .
for you as well.  
Help is out there. All you have to do is reach out.

Re: New to the group

Posted by Norm on Jun 28, 2020 8:06 pm

Thanks Brighty. Nice to know I am not alone.
 

Re: New to the group

Posted by law on Jun 28, 2020 10:17 pm

Welcome Norm‍ to this supportive and educational group and website. 
You have indeed been given a tough road to navigate as you recover from seriously life-changing health, a'new' mouth, and leg, and trying to maintain a semblance of sanity.
I had cancer at the base of my tongue...the right tonsil was also cancerous, and the cancer was removed during the surgical biopsy. I was fortunate to maintain my tongue in tact, but the rest of my mouth, teeth, gums, larynx, swallowing, taste, smell and saliva all caused great , GREAT,  PAIN.  My tongue was also covered in blisters which took 9 months to heal. Consequently, my dentist filed down my molars so they no longer slashed the blisters as I attempted to move my tongue, I refused to eat or swallow and lost 40 lbs.I was in agony and just crossed the days off the calendar as if I were in prison.
I had 36 rounds of radiation and looked like a shriveled prune.
To numb my mouth, I gargled every 30 minutes with Lidodan2% solution...available from a pharmacist at larger drug stores such as London Drugs in Victoria...a red syrupy liquid,.in a small plastic bottle It's $20/bottle and worth every nickel. It gave me about 10 minutes of peace to eat mashed potatoes, risotto, ice cream....any food which was easy to get down the throat without major chewing and swallowing. It took 9 months for the tongue blisters (the size of quarters) to heal and I still (after 2 yrs) have blisters way in the back, where only my cheek rubs against them. I used counselors, speech therapists, psychiatrists and nutritionists (free of charge at the BC Cancer Centre-Victoria) to teach me how to adapt to my 'New Normal' = 40 lb weight loss, huge oral pain, no taste, no smell, no saliva.....only the pain has diminished but I still gag and choke on liquids, bits of grains, veggies: i.e. lettuce, chickpeas, etc. Fentanyl patches, hydromorphone and gabapentin did little to relieve my agony for over a year.  I have been off all drugs for about a year.
My PET scan from Dec. 2018, has shown NO CANCER, so I feel as if I dodged a major bullet.
Rather than go on and on, I will close for now, yet I urge you to stay on the right track, and do believe that your life will get better.  Please write me back if you want to share any thoughts, rewards, agonies.....and be grateful for anything which presents itself as a victory---however small!!!
law

Re: New to the group

Posted by Ken Anderson on Jun 29, 2020 12:58 am

Wow, Norm‍, they really beat you up, didn't they?

I, like law‍, had base of tongue cancer, but unlike her I had next-to-no side effects.  One thing that law didn't say in her reply was that she is now pretty much normal again.  She had a really hard time, but eventually came out of it all.

I've had some people tell me that the side effects and recovery from head & neck cancers are worse than for any other types of cancer, but when I've read some of the stories about people with other types of cancer I wonder if that's really true.  It appears to me that recovery for some people, given the surgical, chemo, and radiation trauma that they're bodies have to go through, is just going to be really hard.  It's distressing, and hard to accept, but true no matter how hard we want don't want it to be.

In your original posting, you say that you're looking for someone to "help me understand why I can't seem to get back to normal".  My first take on that is that you're looking for help with managing pain, but I could very well be wrong.  The team that helped me at the Victoria Cancer Clinic included a "General Practitioner in Oncology".  His primary function was to help me manage pain.  If you haven't done so already, you might ask the nursing team at your Cancer Clinic if it has somebody who really specializes in pain management, and then have a chat with that person.

I see in another post that you're asking about how to deal with thick mucous.  Given that you've had significant surgery, I'm really hesitant to make recommendations, because I'd be afraid of recommending something totally in appropriate. 

Nonetheless, you might consider:
  • drinking soda water rather than flat water, because it just feels better and seems to clean out your mouth faster (at least, it did for me)
  • gargling and rinsing with baking soda and salt
  • carrying two jars around with you, one to sip and swish from, and one to spit into
  • that some people believe that acupuncture has helped them move to more normal saliva faster
The most important thing that I think I can pass on is that if you're having problems, or you have questions, make sure your medical team knows what those problems and questions are, because they, more than anybody on this forum, will know your situation best and will be able to make the best informed recommendations.  I've seen a number of posts on this forum and on others from people who are afraid to ask, or don't want to bother people on their medical teams.  And, so, they miss out on getting truly beneficial help.

Another thing.  If you haven't done so already, subscribe to the Head & Neck forum.  And, when you've got a specific question, post in that forum as well as in other relevant forums.

By the way, the software that this forum uses doesn't automatically send an email to the person that you're replying to, so, unless you "tag" someone, they won't know that you've replied to them.  To tag someone in your reply or post, type the "@" symbol and begin typing the username you want. A list of usernames will come up and you can select the one you want from the list. If you have done this correctly the username will appear hyperlinked in blue.

Best wishes,
-Ken
http://dealingwithbaseoftonguecancer.home.blog/
 

Re: New to the group

Posted by Lainie on Jun 29, 2020 11:02 am

Thanks for including me in your discussions. For those who I haven't corresponded with, I joined because my ex boyfriend was diagnosed with throat cancer in February, and underwent 7 weeks of radiation and chemo. I'm so sorry to hear how difficult this can be for all of you. I've felt very helpless this entire time, but I've tried to be a supportive friend. That has been made even harder with all of the restrictions around visiting due to Covid19. He's finished his treatments now but still not feeling great. His feeding tube somehow ripped out so he's now forcing himself to eat by mouth, which is slow and painful. I know he has mouth sores but doesn't take anything for pain. He's very tired and frankly, I think he's depressed. I've encouraged him to join this group for support, as I feel he'd get so much more out of it, but he chooses not to. So I just pray for him and have hope that in 6 months he'll be much improved. He was very strong and fit going into this, and he's 43, so I hope he bounces back soon. That's my hope for all of you! 

Re: New to the group

Posted by Norm on Jun 29, 2020 12:44 pm

Lainie‍ ,

First, he has to understand he is not alone. I only joined yesterday and I am getting emails with advise and help like you wouldn't believe.
I quickly found out the road is a lot longer than I thought. I do not understand how is feeding tube got ripped out but I strongly recommend a trip 
to ER to have it replaced. He needs to maintain a health weight while he recoups. The tiredness is a result of the radiation. I am sleeping 10 hours a
day. Tell him to join up it is free and he will learn from the experience of others.
 

Re: New to the group

Posted by Rayline on Jun 29, 2020 11:27 pm

Norm‍ my heart goes out to you. What a difficult surgery you have been through and I am very pleased that you have had some quick replies from folks here, How are you feeling and managing? I am thinking of you and wishing you some moments of comfort.💕

Re: New to the group

Posted by Norm on Jun 30, 2020 5:41 am


Thank you Rayline‍ 

I am hanging n there pretty good. Have a large lump under my chin that wont go away. Feels hard as a rock. No movement in my 
tongue yet, so I have difficulty speaking and cannot eat.
Has anyone had a similar surgery.

 

Re: New to the group

Posted by Lainie on Jun 30, 2020 10:06 am

Norm I'm not sure if it ripped out exactly...somehow was out of place. His Dr. removed it and said it would force him to consume by mouth. I can only hope they are monitoring his weight. I will once again mention this group to him, but he's pretty set in his ways. Frustrating, but that's all I can do.

Re: New to the group

Posted by Norm on Jun 30, 2020 12:28 pm

Lainie‍ , you just to hang in there and be as supportive as you can. Throat cancer (any cancer) can be a very serious thing. Let's hope the caught him at a early stage.
I found that I was actually much more tired once I completed the radiation treatment. And form joining this group I learned it does take some time to get back to normal
(Me I have no patience at all) and depression is understandable when you are in pain and suffering and worry about the future. Just stand with him as long as you can,
And keep encouraging him.

Re: New to the group

Posted by Lacey_adminCCS on Jun 30, 2020 12:59 pm

Welcome to our community Lainie‍ and Norm‍. I'm so glad you posted.

I wanted to offer a tip! When you reply to others you can tag them by typing the @ symbol and their username. Then they will be notified you are mentioning them.

Re: New to the group

Posted by Norm on Jun 30, 2020 1:06 pm

Where do I type this ???

Re: New to the group

Posted by JamesT on Jul 1, 2020 1:38 am

Hello Norm‍ 

Welcome to the group.

You type @ in front of the persons name.  Above where you see Hello Norm, I typed the At symbol and your name and that's why it's highlighted in blue.

Wish I could offer advice for you.  What you are going through is much more severe that what I went through.

Best piece of advise I can offer is to ask your oncologist teams lots of questions.  I would write them down to ensure I would not forget what I wanted to ask, and what the response were.

Recovery does happen, but it is in small increments, so it's hard to notice the changes.  But it does happen.

Sincerely,


James

Re: New to the group

Posted by Norm on Jul 1, 2020 6:02 am

Hello James.

Do you do the @ thing on a phone or a computer? I am either a dummy or....

Anyway can't talk to a doctor because of what covid19. All appointments I had were cancelled and rescheduled.
I have a CT scan coming up in a couple of weeks so I hope everything has OK, Other than that I will just have to  hang in there,

Very glad to hear you are well on your way to a healthy recovery.


Norm

 

Re: New to the group

Posted by Ken Anderson on Jul 1, 2020 1:33 pm

Norm‍, "dummy" no, "confused" maybe!
Whether you're using a phone or your computer to post a message in this forum, in the message field, as you start typing, enter the @ symbol, and then, without entering spaces first, start typing the other member's username.  For most of us, as you do so, a little pop-up will show that lists usernames matching what you've typed so far.  Keep typing the username until you see, in the popup list, the name you're looking for. Click on that item in the list with your finger (if using a phone) or mouse (if using a computer), and bingo, it's in your message.

I'm gonna try to attach a photo showing what I mean.

Good luck!
-Ken
https://dealingwithbaseoftonguecancer.home.blog/


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