Total Laryngectomy

Hello again Gill and no you ask all you want. Though I don't have all the answers and to be honest I don't think anyone does but we get on the best we can. Myself I don't have a problem with it now, mentally that is. There will always be some problem to deal with. Suddenly finding you cannot breathe but more often than not its because the Mucus as blocked the HME so air cannot get through and so I can quite happily clean the tube whilst Nebulising fit it back in and put a new HME in place, have a quick speech test which sometimes nothing but air comes out and I laugh the Larry laugh way only a Larry can laugh. If that makes sense. Basically you do everything yourself but with some guidance from others, besides NHS there's Small independent groups and MacMillan, there's also Maggies which I have been told are outstanding with providing support. Now as for talking has H had the valve fitted? I have and its not easy because its a slow process to finding the right method as in Larry clips or which  base plates etc..etc.. to use and then dependent on how the stoma heals. As seen in my profile I'm wearing Larry clips but at this moment writing this I'm wearing the Neck brace because after a few day the Clips make my skin itch like mad then after a few day the brace make my neck feel numb and weights a ton. On Wednesday 30th I saw my neck specialist and tried a contour base plate which was great BUT the nurse would let me keep it on for longer than an hour in case my hole started to close. And of course I wouldn't know if any itching would appear. Changing subject a little. I'm originally from Leeds ad use to be a supporter back in the day of the likes of Billy Bremner Peter Lorimer who ended up with his own Pub in Hunslet. I then went into Rugby League and became a Leeds Rhinos supporter but have not been to a game in a few seasons now, in fact Robbie Burrows last season before he became ill. Anyway I also have quite a gob on me with writing as well as verbally, when I can that is. Looking forward to the future and keep on smiling..

Phil A said:

Anyway I also have quite a gob on me

I think that guys like you do the best in this situation. 
My first husband was a photojournalist and was always the loudest voice in the pub. When he healed normal service was resumed. 

Great stuff Phil!  You sound really positive and I'm chuffed to bits for you.  Will get back to you as duty calls.  District nurse just arrived to sort balloon on H's RIG.  He's kissing goodbye to it on Tuesday as it's been redundant for 5 months as he's continued to eat and drink normally since his swallow test.  Hurrah!

Gill xx

That last comment made me chuckle xx

Me again. 

I noticed the Larry clips in your pic.  H had to stop wearing them a while ago and went back to wearing a trache collar to keep his tube firmly in his stoma. It's because he's got an explosive cough which caused projectile secretions, ultimately blowing the filter (HME) out with the tube in hot pursuit!  Even the clips couldn't contain this palaver and often came adrift from their moorings.  It wasn't too bad indoors but when we went out and about it was awkward, me scrambling to retrieve his tube from the pavement whilst cursing.  Another reason is that his neck got really messy and sore from the RT and the clips might have been uncomfortable with the adhesive against his skin.  It's getting back to normal now so we'll be giving the clips another go shortly.

I'm glad you mentioned base plates because H didn't want the TEP so probably won't need the plates just yet.  I do worry about his stoma contracting without the Larry tube, but I'll leave that concern in the hands of his team.

The mucus issues seem to be calming down a bit.  The RT caused it to become thick and really stringy, making him wheeze and cough loads, particularly during the night, so an extra nebuliser session and propping up with pillows is the order of the day for now.  We're going through a lot of filters as the extra mucus clogs them up, and like you say, impedes his breathing ability.  I've been ordering extra HMEs from Homecare in Wigan where he gets his med supplies.  Do you use the same supplier as it's very near you?

Yep, I started going to Elland Road in the 70s so Billy, Peter, Eddie, Alan Clarke and co. were my heroes back then.  I was there when Cloughie made his debut for 44 frustrating days although Duncan McKenzie was a revelation.  Halcyon days.  

H is also a huge Rhinos fan and used to go to matches with his brother, although that'll have to be shelved for the time being.

Rhito, enough of my waffling so you enjoy the rest of your weekend and relax.

Gill xx 

Hi Paulineg1 sorry for not responding to your post. I understand how you feel about this forum I actually feel the same and I think its because people get bored and move on. I just forget where I have forum accounts but I always try to get back because I know people can get lost trying to move forward with life. I joined The Oldham Quiet Ones before I had my op and they have been very supportive. They are on Facebook and WhatsApp.

Hi Chris 2012 , you have been through the mill a bit and I hope that everything has settled down now and you are getting on with things? I am happy to say I have come on quite some way since my op on 12th March. When I was discharged from The MRI it felt like I was being thrown out onto the streets and grew worse over the following week. Luckily I joined The Oldham Quiet Ones before I went into hospital and opened up to them whom responded immediately with advice and help. Things are very much better now and I am very much on top of it. Getting on with life and enjoying it.