Life after Cancer treatment

No crystal balls with this beast. I do have a voice but often times use a write board because I am sometimes hard to understand. Just found out they make an LCD write board, I am going to look into getting one. My brother was trying to show me how to use the notes screen on this IPad but I am not very good with computers. 

Well wishes

Candi

I had what they call silent aspiration. You don't know you aer until you cough and find bacon you ate four hours before. I was lucky I never got pneumonia before I had my surgery. My epiglottitis didn't work very well. 

I do think what you said should help. I do agree that today matters. Now that I am 20 months out and really doing great, I never had chemo or radiation and that did help. Cancer took my larnyx and they took 86 glands while they were there as a precaution. The main thing that I have seen is, you need to accept the new you. Before surgery I knew what was going to happen and it would be life changing, but I still had a life to change. In most ways I am the same, but in some ways I have changed, and for the better. I do a lot for the other Laryngectomee and give them suport and videos and show them you can do things we were told you can not do. Well it is just how much you want it.

As far as not having a voice, [that is tough to go through] you might check with your doctor and your phone company and many states supply at no charge an electric larynx. That is the round tube you hold to your neck and mouth the words and it will give you a voice. It sounds like a robot a little but it might help you. I had to use one for awhile as they took out my voice box. They put in a prosthesis and I can talk on my own. I had to use the thick it for awhile and thick water is just weird to drink. I do hope it gets better. Thank you for checking in....

Bill

I lost my voice before I found out I had a second cancer - and had a total laryngectomy..

After my surgery, I got a Boogie Board - you can write, erase, write again.  I don't use as often, but I carry it in my purse for those noisy situations.

I had also used SprintIP for telephone calls.  It is a relay service you use from your computer.  YOu type, an operator reads what you typed to the person you are calling.  Then, the operator types back to you what the person says.    If you have an analog phone, you could get a hearing carry-over.  I have cable phone, so I can't use it.  But it is like voice-carry over, but for people you can hear but can't talk.  I use an electroylarynx now, and don't use SprintIP as much as I used to, but still do when I have a lot to say, and am not confident the person I a calling will be patient with my new voice

Lorna

2007 & 2014

Elaineh,

Pre-cancer self is like being a teenager, gone forever. It’s not that the facets of the new me is bad, just different.  We all start down a similar path, but end up in dramatically different places some good some bad.

For me:

Speech difficult and soft at times but took speech therapy and saw dramatic improvements.

Edema experiences like most of us; received massage therapy and learn to do it myself, work great.  Now pretty much a non-issue.

Eating it took seven months of hit or miss before I turned the corner and started eating normally again.  Now, it’s pretty much anything I want but with the caveat I have to have lots of water and plenty of time. I’ve gotten pretty good at stretching out the water.

Swallowing I worked on this the hardest starting before treatment I drank and still drink lots of water every day. Though I cough and choke a little bit my swallowing is really very good night credit the advice of the H&N form for that. Especially John, Bev, Hondo and others (P51, Tim, Katie, etc.)

Tiredness this is something I still deal with daily. My thyroid is back at normal levels with medication but I still have to work at having more energy.

Sleep other than the few times my brain was racing at the beginning of cancer my sleep precancer during treatment and today has always been good, real good. I’m thankful for that.

I could go on but risked becoming boring. Many here know me well as I know them.  Currently, the treatment we receive and the side effects are our best chance for a future. It is better to get along with the changes then fight them. Anyway, who has the time to waste.

I close now,

Matt

Elaineh said:

PEG

So Tim do you have anG tube (stomach) or Jtube(small intestine)?

It is just a regular PEG tube in the stomach about 1.7cm long. I had it replaced last week and asked the doctor for the old one so I can take it apart to see who it works.

Tim