Thanks everyone for you support, i have been told that i will need to have more of my tongue removed and graphed and have a radical neck disection, with all the lymph nodes removed on the left side. With this surgery i will have a trach and a feeding tube :'( I am sooo scared about this and i have no idea what to expect to feel like with all these tubes going in and out:( Any words of advice for having a trach???

Hi Chelsey, sorry to say I can't offer you any advise on this one but I know many of the guys on here have had this done. It's only a matter of time before they see your post and answer your question the best they can. I will be thinking of you.

Wendy

Thanks Wendy:)

I have had two trachs and no, they aren't anyones idea of a good time but they are certainly manageable IF you don't panic and do the breathing exercises they tell you to. Had I relaxed I think the first time would have been ten timex easier. It kinda grossed me out but in the end it is just there to help you, and another thing to"get through" . Beforeyou know it you will have forgotten it ever happened. Good luck

Donna

Your situation sounds similar to mine. I had minor surgery then major surgery - only difference is that there were two years between - and I'm 40 years older than you. I wondered if my aging body would handle it but there was no trouble in that respect!

I had a trach (end of October) and a feeding tube in my nose. I wish I had found out more about the procedure before I went in. The trach frightened me a bit at first but at the end of the first week I was cleaning the tube myself and even at my age the transition from the first trach to the second was easy and the removal problem-free. I have a neat little scar so no worries there. If you could ask them before surgery to explain how the trach functions and how it is kept clean and clear, that might help. I was a bit confused about the suctioning and so on to keep it secretion free. Overall it was very doable.

I didn't like the feed tube much because I felt they force fed me with supplements but it is put in when you are barely conscious and is easily taken out once you can swallow those lovely liquid foods yourself. Apparently the protein is essential for healing and the person with the most authority seemed to be the dietician!

It's a horrible thing to happen to someone so young but when the time comes for the surgery you will cope day by day. Get all the info you can about the procedure and be glad that the cancer will be gone.

Chelsey

The lack of information I got before and after the surgery about the trach was scary to me also. The doctors and nurses just seemed to think it was so routine a procedure compared to the tongue surgery and free flap reconstruction and neck dissection that they just glossed it over.
The good news is that the trach really is not that big a deal. While I hate the PEG tube, I have to admit that getting that was better than the interim nasal feeding tube because with the PEG tube I could deal better with the mucous buildup after the surgery. They do wonders with the trach and in a few days I had a special valve put into the trach hole so I could talk easily. Amazingly, you just end up coughing or suctioning out the mucous in the trach, then keeping it covered with a bandage, and it heals up neat as can be all on its own. It turned out to be the easiest part of my cancer treatment, but still upsetting on an emotional level as I would look in the mirror and think: OMG, I have a hole in my throat!.
Charm

Hi Chelsey,

When we first went to the ENT, he was very thorough in explaining all the things my husband would have to have done along with the cancer surgery, ie, trach, NG tube, catheter, and JP drains. (There may have been more but I can't remember.) The surgery was a week later and with all of the pre-admission testing, we had little time to digest all of it. The ENT did say it would be challenging but he kept reinforcing that my husband and I could do it.

I guess I am trying to reassure you that YOU CAN DO IT! You are young and resilient, and you have many others who have been there and if they can get through this, so can you.

As my husband's caregiver, I cleaned and suctioned his trach. I got to be very good at it. Do you have someone who can help you with this? My sister is an RN and she stayed with us our first night home. I admit that the first few times I was nervous, and having her there reassuring me, really built my confidence.

Now, two years later, there is a faint line on his neck, like a distant memory. I wish you the best as you move forward. Hang in there--YOU CAN DO IT!

Anita

Chelsey- I am so sorry to ehar of your diagnosis. It sounds like you have very good resources. I know it is terrifying at first to accept that you have cancer and that you have to go through these treatments. You will be resiliant. It isn't fun but you will get through it and come out healthy and strong again.

Be strong honey.

KATE

Chelsey,

From my experience, between the trache and PEG, the trache bothered me more because it caused constant coughing. Needless to say, the trache had to be suctioned and cleaned on a regular basis (I had two trache pipes which alternated between what's being used and cleaned). That was the only problem I had with the trache which, incidentally, was removed much earlier than my PEG. The trache wound also healed much faster (within 24 hrs) than the PEG wound.

Jojo

Welcome, Chelsea. Neck dissection is kind of a hot button issue on this forum. Many have been told they need it, then got a 2nd or 3rd opinion that they didn't. When it comes to something like that, one doctor's opinion is really not enough. Best of everything to you.