Food

Hi Scamp - this is the place to safely moan!  Sounds like you are having a tough time of it.  I just hope your clinicians can get on top of the issues soon and you can see a way forward to better times.

Not sure mate all appointment next year so just grin and bear it hope you ok

Hi, Scamp, no apology needed, you're welcome to have a good old moan whenever you want to. Hopefully your team will be able to come up with something to make things a little better for you. We are all here for each other, post as often as you want. 

Ray.

Hi Scamp2009c20f03 sorry to hear you are still feeling so unwell. My husband is still in hospital after what sounds like pretty much the same operation on 29th October. He has a very small leak in the reconstruction which is slow to heal because he had radiotherapy and dissection to the other side of the neck 10 years ago for tongue cancer. Like you, he hasn’t been given a voice TEP. He isn’t feeling too bad physically but he is frustrated at still being in hospital after 5 weeks! His world  feels very small and restricted compared with pre surgery and yours must too. I hope they get to the bottom of your symptoms soon, and find a way to help you sleep better as I am sure better sleep will help to sort out the other problems.

Your so kind hope your husband gets home soon it will pick him up .

As to me I've stopped listening to some of the doctors they have not got a clue .I understand that I should eat but you can take  horse to water but you can't make him drink 

Hi Scamp. 

Aw I'm sorry to hear how you feel lad, and totally get how miserable you must be. My OH had a TL almost a year ago and spent over five weeks in hospital following his surgery, after already being incarcerated for two months. He hadn't been able to eat or drink throughout and was totally dependent on his RIG. However, he passed his swallow test about a week after surgery and from then on there was no stopping him eating. Have you had a swallow test, or got a feeding tube fitted, and are the doctors trying to encourage you in any way at all? Being cooped up all that time, and unable to speak, sent my fella into a spiral and his misery was off the scale, so I get how you're feeling now.

As others have already said, you get it off your chest here and we'll listen and give you support. Sending you big hugs and hoping you start to feel better soon xxx

Many thanks for kind words. No I've no food right or peg in 1st week eating great then went down hill .rushed back in hospital with electrolytes back out just seems full all time like I said with other things going on you forget one thing and move on to next so many appointments for different things as for food yes had swallow test all OK so not sure what's going on 

You're really going through the mill Scamp, and like you say, it's just one thing after another as we know all too well.

It's really important the docs get to the bottom of your eating issues, as with a fitness test coming up your stamina will no doubt be reviewed. Now you're back out of hospital, have you got support at home? I appreciate how difficult every mortal thing can be without a speaking voice as my OH has the same handicap. I've done all the speaking for him at the multitude of appointments he's had, and there's still more in the pipeline.

But here's where I can offer you a bit of hope; he's much further down the line than yourself, granted, but although other issues have cropped up over the last few months, we're finally getting on top and he's in a much better frame of mind. He didn't have a TEP either, but has started practicing with his electrolarynx and is giving it a real shot. I'm becoming good at lip reading and these small things are all good for his wellbeing. Never give up or give in Scamp. Nag the hell out of doctors and your team about everything until they listen to your concerns, even though you'll have to write it down or get someone to speak on your behalf.

I'm really hoping they get the electrolyte issues sorted soon as you'll probably be able to sleep better, which is all to the good. Try to eat when you can and what you can, you know your limits but look on food as a medicine to build your strength back up. I've read your posts out to my OH and as a fellow lary, he's sent you a double thumbs up. We're both sending you strength and hugs and the will to march forward. All our very best Scamp xxx

Thanks Gill to you and your OH and everyone else I'm kicking my arse to eat and get all sorted to move on the assessment is for esa my wife who as been brill took 11 weeks before I got sick pay now they making me go to see if I'm able to work in near future just a joke But I am guna go and show them what it's like 

As I said kind regards to Gill Oh and everyone else 

That sounds really tough. We have been very lucky that OH’s employer and my employer have been very sympathetic and supportive. OH still works for the same company he was working for when he had cancer the first time, so they know that he will get back as soon as he is fit again, though not being able to speak is a big challenge. Are you getting support from the local Macmillan team? They - and your consultant - should help with statements about what you can and cannot do fitness and work-wise. The macmillan team can also advise on benefits, I think.
I’m glad to hear you’ve got a great partner who is backing you but you need others on your side.