New Here.. struggling

Hello Tang and a warm welcome to the group that nobody wants to join.  You'll quickly find though that it's a very helpful and supportive group.   So here's a hug from me to be getting on with, and I'm sure that more people will be along soon.  It's a tough time after treatment but my experience was that it slowly gets better, hope it's the same for you.  

A warm welcome from me too Tang. I'm afraid I don't have any words of wisdom as I too am still on the road to recovery with it's ups and downs. What I find really reassuring and never fails to give me hope is hearing the stories of others on this forum who have walked this road before me and have come through the other side and are now living life to the full. Speak to your CNS about pain issues and hang on in there.

Best wishes and big hugs,

Eliza xxx

Thank you

I did that very thing and spoke to CNS ,upped my meds to control the pain , which will also make me sleep

Hi Tang,

I was in the same position as you are now, back in Feb of this year, after surgery to remove cancer in my toncils and neck lymph nodes, followed by 6 weeks of RT and Chemo, and as as you say, it's hard. No doubt about it. Most of us in this community chat, that now support others, have been there.

I could not take solid food orally for about 4 weeks post treatment and relied totally on my PEG for getting calories (and water) in. This meant being regimental in my day to day routines, of feeding, flushing, neck moisturising, pain management and resting/sleeping, which although hard, kept me occupied and on the road to recovery.

But after 4 awful weeks of not eating and having to have a spit bowl with me at all times, I started to manage small amounts of soft foods, custard pots, soups and although they tasted ot nothing ( or horrible) I treated every new step forward with my eating and pain levels as a HIGH and a WIN, to counteract all the lows I'd had along the way. And very importantly (I think) I also made sure I shared with loved ones, each and every high along the way, no matter how small,  reaffirming to myself and them, I am getting better.

Soon I could manage small omelets and porridge for breakfast, soups with bread in for lunch and even fish pie or similar for dinner. My sence of taste suddenly came back (BEST HIGH EVER) and although It was still difficult and painful to eat, the signs of recovery and keeping to a routine made it possible to power through. I still took my fortisips as well, but now I was drinking them, diluted with whole milk.

And two months later I was well enough to return to work, part time, and now i'm coming to terms with my new normal and eating most foods as long as i have a glass of water, or tea, to help it go down. And I have now been in remission and clear since The end of May.

So hang in there Tang. You're probably at the lowest point right now, but it does get better, slowly but surely. Get your routines in place, share each and every one of your wins and rest, sleep and recover during the lows.

Best wishes for your continued recovery.

MickyC

So ,I found a lump, shortly before my 12 week scan ,opposite side of my neck . Scan showed it to be suspicious; having to have a neck dissection to remove,  just a neck dissection this time . Any info, thoughts ,time recovery etc that may help 

Hi Tang

My first dissection was to remove a similar lump that proved to be the diagnostic for my cancer.  16 days after I had the dissection I flew to the USA for 3 weeks holiday.  I went on a short cruise, swam with manatees and did the rides in Orlando.  I learned that doing the rides was not such a good idea, but the rest was absolutely fine.

The dissection sounds absolutely horrible but in reality it is not really painful and soon heals.  A good surgeon leaves only minor scarring and they try to do that in a crease in the neck to hide it.  Almost certainly anything you see on Google is old practice and put there to terrify people - so don't go googling!!

Hopefully the pathology comes back negative, but in any case you should soon be on your feet and able to enjoy Christmas.

Hi Tang. One of my ops was a stand alone neck dissection. I was out of hospital by day 2 when the drain was removed. It was an easy recovery and I found it not painful at all. The only issues for a short while was that I was unable to raise the arm on the side where I had the neck dissection above my shoulder for a short while. A matter of a few weeks and it came good by itself. Something to do with the nerve being bruised. I have altered sensation where the scar is but nothing that worries me greatly. 

Lyn

Thanks, having had one originally in the first resection operation back in may ,just wondered how much it was to deal with on its own .

Thank you ,appreciate your thoughts Lyn