TONGUE CANCER OPERATION NEXT WEEK

Thats exactly the same op I had 5 years ago. Mine took 12 hours. I was only in ICU overnight & in hospital for eleven nights. I had a tracheostomy for a week. I had drains, a catheter & my arm in plaster. The first few days are the worst although I was pain free. Take a notepad or white board if you are having a tracheostomy so you can communicate. Take plenty of reading material and perhaps music or a puzzle book. Ear plugs and an eye mask make sleeping easier. 

It all seems a distant memory. You'll be fine 

Thank you so much Wendy, that’s really helpful, I appreciate you taking the time to reply ️

Hi Bailey

Good luck for the op. It sounds as though you have all the info from your team that you will need. Further to what Wendy has said. When the physio comes around to get you walking push through with it even if you don't feel like it. After such a long anaesthetic you will find that you are very sleepy and drop off just like that but it wears off over a couple of days. Get walking as soon as you are able as this really helps your recovery and sit out of bed as much as possible. It is difficult to concentrate for a while because of the anaesthetic so I found reading too hard but watching T.V. or  using your phone with something like Audible where the story is read to you worked for me. The tracheotomy is only short term but as Wendy has said be prepared with a notepad or whiteboard as this really helps with the communication.

Best wishes for the op. Your team sounds as though they are fantastic.

Lyn

Hi Lyn, such good advice which I will take on board. Especially when I’m in bed and can’t be bothered to get up I will think of this message and just ‘Do It’  

All the best for the op.  I have had similar - 2 dissections and an aborted partial glossectomy.  The dissections sound horrible, but actually they are relatively easy to recover from.  Time is the great healer, especially if they have to disturb the accessory nerve during the dissection.  That controls your shoulder and it take a while for movement to return to near normal.  In my case around 18 months.

It is great they are doing the lymph nodes as well as the tongue.  Hopefully they will get clear margins and confirmation of no spread and you can avoid further treatment.

In my case with the tongue they decided not to rebuild and said I may only need an NG tube for a couple of days max.  That surgeon was very good and he had done a prior dissection on me that required no drains etc despite removing all the lymph nodes.  In the end the glossectomy was abandoned part way through as the tumour had "disappeared" with no sign in the frozen section despite having been previously biopsied!  Don't ask!!  Thus I can't really offer any advice post that particular surgery. 

Some random thoughts...

I did prepare by having an app on my phone rather than a whiteboard to replace speech  I totally support getting mobile ASAP post operation.  I greatly aides both physical and mental healing.  As a guide allow a month for each hour you are under to fully recover.  You will quickly get back on your feet, but fatigue etc will hang around for those following months then, almost unknowingly, you will feel you are close to where you were before the operation.

Definitely keep on top of the painkillers even if you feel you don't need them.  Better to keep it at bay then try to knock it down later on.

A wedge pillow may make sleeping at home more comfortable.

I found a massage shower head on hot, playing on the area of my dissection, helped ease the stiffness.

Also try to massage it by hand so you get to know what it feels like and can sense any changes.

Finally, listen to your body and rest when it tells you to.  It is a marathon, not a sprint!

Thank you Peter, such helpful advice. This is such a great group and I’m so grateful I decided to post as I’m getting some great tips

My partner has this surgery a few weeks ago now. You will be looked after really well, and a few weeks after the op you will be shocked how much the swelling has gone down. Best wishes x 

Thank you for your message  that’s really good to know 

How are you doing Bailey 1 ? Hope you are recovering well

Hi all, I’m not going to lie when I say the operation and time asleep really took it out of me. I felt battered and bruised all over the skin graft, muscle from arm taken and lymph nodes from neck, not to mention the reason for all the above being my tongue flap. Everything went to plan and they managed to reconstruct one side at the middle to back of tongue so I have my own tip etc.  The first few days were pretty bad, I felt I just wasn’t getting better with swelling kicking in but after that I just turned a corner and drains, tubes, etc were gradually removed every day. I’m going home today,  yay, first night with not having to buzz for pain relief although cannot wait for my morning dose now. If you had asked me 2 days ago would I be ready to go home today I would have said no chance so anyone else due to go in, I promise you, just get over the first two to three days and you will be improving so quickly every day after. My surgery was this time last week. 
Thank for checking in