Hi Martin

You got that arm up in a sling ?

That Doppler was the reason I never got any sleep checked on the hour every hour for the first few days to check the flap has taken.

Keep taking the meds you'll be out of there before you know it.

Don't forget to use the mouthwash regularly I kept forgetting nearly died when surgeon said could smell faint air of corruption never forgot again.

Relax now

Hi irate  - doing much better today than last night were my trachy shifted however nurses and doctors got me comfortable for the night. In fact it probably the most comfortable I've been with it in place. This morning they tried to reposition with no such luck so they removed it along with a couple of drains. 

What joy - just about got used to breathing through one of them then they took it out so need to learn some new tricks now.

All very pleased with my new two tone tongue now such just got to look after it and recover.

Think it was six days before they removed my drains it certainly made going to the toilet easier. Ten days before they removed the massive bandage on my forearm where they took the flap from.Had to return to hospital for that.

Sounds like your doing great I never needed a Trachy..

Keep taking the meds and get some sleep..

Hi everyone.. I'm not sure if any of you are still going to be looking at this thread. But I'm hopeful others will be looking for information too. I have just been diagnosed with tongue cancer too (T1 thankfully), the tumour appears to be fairly small. I am due to have a partial glossectomy (no reconstruction needed) and sentinel node biopsy. They are optimistic at this point it hasn't spread and that could be the end of my journey, however only the results after surgery will confirm whether anything further is needed. I feel ok so far, but I am worrying most about the impact on my speech and eating. Apparently impacts should be temporary, and I should be back to almost normally eventually. I'm quite young to have this diagnosis apparently, and speaking is a large part of my job. 

Hi Esuma

Sorry to hear about your diagnosis. I had a partial glossectomy and reconstruction for T3N0 tongue cancer, followed by radiation 2 years ago. I am also quite young (39 at diagnosis) and speak a lot for my job.

My speech was 95/90% back to normal within a couple of months. I was confident enough doing business meetings only about 6 weeks after the surgery (with people I knew). I was say 95% normal within about 6 months. I spit a little more than I did before, but I have no concerns speaking on the phone, presenting in person or on webinars (so with a camera on me).

Eating is also 90% normal. I was on a liquid diet for about a month after surgery and my eating was about 70% normal by 6 weeks when I started radiation. Radiation caused a lot of side effects with eating for a few months so it's hard to say what would have happened with no radiation, but I guess I would have continued to improve from that point. Even with radiation I was about 85/90% normal by 6 months (struggled a bit with things like salad and dry food). By about 12/18 months I'd say there's nothing I wouldn't eat, although very spicy food still hurts - but that's due to the radiation. I still eat spicy food, I just feel it more than the average 41yo (more like a child say), so I choose less spicy. 

Thank you so much for your reply. I'm sorry to hear you also had to experience this. I'm 31 but have had oral lichen planus for many years (apparently the cause of my cancer). It's really reassuring to hear how quickly you were able to go back to work and feel confident talking. I've been told around 1-3 months off work should be about right, which in the grand scheme of things is not so bad! 
 

Did you have a neck dissection too? I was given the option to choose between this and a sentinel node biopsy, I am hoping to have the sentinel node instead and keeping fingers crossed nothing comes back from those to need further surgery / radiotherapy. Given my luck so far though I'm not ruling anything out! 
 

Has your taste been effected at all? I already have to avoid spicy foods due to the lichen planus so I guess at least I'm used to that! 

I have had my surgery now - in the end did go for a sentinel node biopsy (and potentially lucky I did as the nodes identified were on both sides of my neck and on my collarbone). Thankfully my biopsy results came back clear and there were good margins from my partial glossectomy so I don't need any further treatment - such a relief! Apparently I'll be followed up every 6 weeks now, and reviewed for 5 years - I guess that must be fairly standard? 
 

My speech was much better than I was expecting and eating gets a little bit better every day. I still don't have my appetite back but it's getting there! I'm on a soft diet, not sure how long for. 
 

I still feel in shock and disbelief, and feel so unbelievably lucky that I've had a 'simple' journey. Hopefully my speech will get back to as normal as possible, I've noticed the last few days I feel like I'm producing excess amounts of saliva! Not sure if that's just in my head though and I'm just more aware of it due to the heightened weight of swallowing. 

I had full reconstruction in April 2021 and had to go back for chemo and radiation in Jun and July.  Although a significant part of the swelling has gone down, when I talk or eat, it aggrevates my new flap and the flap/tongue swells up.  It makes talking difficult because it feels like there is a ping pong ball in my mouth.  My the end of the day, after having done limited talking and eating 3 to 5 feels, my tongue is very swollen.  My guess is the tip of my tongue is sensitive and it rubs on the back of my lower front teeth.  Has anyone experienced anything similar?  Thanks.

Very good Martin, excited for you.  I would die for a slice of pizza or a hamburger :-)

I can swallow and chew but I can't eat that way.  I have to puree everything in a blender.  My tongue has no feeling right now so it doesn't know where the food is to roll it around my molars or to push it to the back of my mouth to swallow. 

My tongue tingles so I hope this means sensation is coming back.  I also lost my saliva glands and there's a 50/50 chance they recover.  If I could chew, I could still use water to help get it down.

I lost 20 lbs but never had to go on a feeding tube.  I have put 10 lbs back on so far.  Speech is still difficult with the swelling.  It starts off good at the beginning of the day but deteriorates as the day progresses and the swelling sets in.  I am very optimistic this will correct with time.

All the best!