Hi All,

Finally after almost 4 months post treatment, I can say most of the pain is gone (except when trying to swallow large amounts of food). Besides the dry mouth I am left with an 'odd' sensation in the back of my mouth/oral cavity. Maybe it is the excessive dryness but it is like I can feel or sense things touching each other - or sometimes like the whole area is just smaller.

It may be foolish to ask, but when people say they are 'almost back to normal' does it mean you are no longer conscious of unusual feelings in your mouth and throat, has swallowing become an unconscious reflex that you don't have to think about?

Thanks in advance!

Hi Nancy,

I'm 12 weeks post Tx. I still have a lot of pain. Throat is fine, mouth is still sensitive, body feels like it's been hit by a truck! ~lol~ Still on pain meds. Saliva is maybe at 15%, mostly have thick secretions in the morning before it dries up.

You ask a good question. In reference to eating and swallowing... While I've seen the greatest strides in that department during recovery, it's still far from normal or an unconscious reflex. As I've been navigating this journey, I've come to realize that realistically, we're looking at 6 months to a year before some "normalcy" returns to our lives. It was that way with my open heart surgery. It was a good 2+ years before I didn't think bout it. Other than numbness around the incision, I have no other lasting effects.

Concerning your throat. You may want to ask your ENT. When I was scoped last month, he noticed that my throat was narrower due to scar tissue from my surgeries.

Continued healing, positive thoughts and prayers,

"T"

Thanks "T"; while I don't wish any of this journey on anyone, it is nice to know that I/we are not alone as we go through it. My ENT did a recent scope and didn't mention narrowing but I am certain this is part of the new me.

My best to you (and everyone) as we continue to heal and move forward.

Hi Nancy,

Just wondering how long you were on the pain meds. I am trying to reduce mine at this time but it is going much slower than I had hoped for.

All the best with your continued recovery,

Steve

[quote]When people say they are 'almost back to normal' does it mean you are no longer conscious of unusual feelings in your mouth and throat, has swallowing become an unconscious reflex that you don't have to think about?[/quote]HI, I am 7 weeks post and have been crowing about being 95% back to "normal". The closer I got to 100% the more I realized that "normal" is not the old normal.

It was and remains an adjustment and an effort to keep at bay the feelings of disappointment and frustration. Though not complaining by any means as my journey to date has been quite a smooth ride compared to many, it still presents a common awareness that the definition of "Normal" has changed.

Each of us has to learn and adapt to our new and unique definition of "normal". As "T" states, the timeline is also an adjustment. From the start of our journeys to the last date of treatment, events and changes came fast and furious. After that things start slowing down on the recovery trail, now measured in weeks and months.

Just be prepared for your new normal and the timeline to fully get there. best to you, don

Hi Steve,

I posted earlier, but must have made a 'user-error' as it didn't show up. I started with Roxicet (liquid Oxycodone) after my tonsillectomy and stayed on that through my treatment, though the dosage was increased as treatment/pain got worse. I did have Fentanyl patch (12.5) on hand, but did not move to that. I tapered down with the Roxicet during the middle of June. I still take a small amount of Roxicet (3-4 ml) in the morning as it helps with swallowing breakfast and will take it occasionally if pain begins to creep up a bit.

Best,

Nancy,

Sounds like you did well! I went from hydrocodone, then with a 25 patch then the 2nd patch at the end of treatment also swapped out the hydrocodone for the hydromorphone 2mg. I really want off the pain meds but the best I can do is an increased time span from 8 to 10 hours so far.

Continued improvement for all of us!
Steve

I'm 3.8 years from my first chemo, and subsequent treatments, and more recently in November. i would say, if I can, I'm about 50% from pretreatment levels, depending on concern were talking about, and some are worse, but I do manage to eat everything, with altered taste, so I think about, choose foods, everyday with concern, so the thought never ends, at least for me, but I'm ok with that, and work around any issues. Good luck.