Throat blockage

jackflash22

Saw my onc doc today. He showed me photos of the inside of my throat. The food pipe is completely sealed it looks like a solid pipe. He said he was discussing with other surgeons what could be done , if anything can be done.  He said he didn't force the probe down as it may go through my windpipe or rip my throat.  He suggested they may be able to try going up the other way. Then he said he may do surgery to cut and rejoin. It's all gooblegook to me has anyone had surgery and how was it. I don't really want to go through surgery again so I guess I shall be on a PEG for life. If that's so I'd like to know how other permanent PEG users get on with social life. I was given a blood test for thyroid trouble because of my tiredness. I'm also being given a Botox injection in the left side of my bottom lip to stop it drooping down. I was the only one the surgeon operated on that got nerve damage. The trouble is I keep biting myself hopefully this Botox May help. My partner is more upset about the blockage than I am, he was looking forward to me eating nice meals again he hates seeing me as I am. Upside is I won't have to buy food the rest of my life it comes free with the NHS.HaHa. I'm not feeling sorry for myself I've got my life and I shall live it to full whatever. Going on a weekend away in May in the Cotswolds staying in a log cabin near some lakes then have another weekend in June staying in a large manor house with 20 close relatives of all ages we do it every year and have a family party.

Guzzle

Best of British to you

Your attitude and humour is brilliant. Warm wishes from scouse land. Extra points to any US friends who know what that means. Denis you don't count as you were born here! I really hope they sort this jack flash. Enjoy Cotswolds and let me know if you and your other half are ever in the viccinity.

debbiejeanne

jf, sorry to hear they may

jf, sorry to hear they may want to do surgery and i don't blame you for NOT wanting to go thru it!  I was supposed to get my throat stretched again and said no, just didn't want to go thru it.  we go thru so much w/tx and all the side effects that i think we finally say, enuf is enuf.  praying for you what ever you decide to do, just sorry you have to do anything.

God bless you,

dj

Ladylacy

Throat Blockage

When my husband underwent radiation and chemo for laryngeal cancer the radiation completely closed off the back of his throat.  Something we didn't know until he had to have a laryngectomy, they then found out the back of his throat was completely closed off and they had to reconstruct his throat.  They pulled a muscle up from his chest (is all I know) and rebuilt the back of his throat.  He did great and was able to eat again albiet slowly and with plenty of fluid to help get his food down.  

Now he is back on the PEG tube but that is because he has a second primary at the cervical of his esophagus and radiation and chemo didn't get the tumor.  I do know that they can go in your PEG tube and up your esophagus to see if they can open you up.  They thought they would have to do that on my husband after he underwent the second round of radiation, but our specialist was able to reopen his throat when he did an endoscopy.  But now he is barely able to swallow anything and relies on the PEG tube for everything. 

Sharon 

lornal

I had the reconstructive surgery to my esophagus.  I was thinking about it since I discussed with user Patricke  At that time, I thought all the issues were due to radiation scar tissue.  Before I had a chance to discuss with a doctor I was diagnosed with another primary cancer.  And it had crept into my esophagus.  So, the reconsturction was done with a skin flap from my arm.  (And a total layngectomy).  This was done in Januray.  I had gotten the tube on Sept 30, 2013.  Now the tube is gone - and I can eat just about everything.   Loving it!  Still recovering physically from all this - and will be going onto long term disability - I have only been able to work 3 days a week - 2 days, a day off, 1 day - 4 days off.  Repeat

Its a tough decision to make for you.  Take your time making it.

Lorna

jackflash22

Guzzle said:

Best of British to you

Your attitude and humour is brilliant. Warm wishes from scouse land. Extra points to any US friends who know what that means. Denis you don't count as you were born here! I really hope they sort this jack flash. Enjoy Cotswolds and let me know if you and your other half are ever in the viccinity.

Scoucer

Glad To hear someone else from UK is on the site, I expect we get the same treatment as USA. I had mine in the John Radcliffe, it's a university hospital and has the state of the arts equipment. I was treated very well and seen quickly, they do follow up treatment monthly, putting a scope up my nose. I  have to have a MRI scan next just to check up. I asked today if he(the onc) thought I may have more cancer but he reassured me I hadn,t . I don't think I could go through any more treatment. I take things in my stride and think there's a reason behind all this, if I 've had the cancer perhaps it's saved someone else,  they same 1 in 4 people get cancer so I saved the other 3 ha ha. Cancer these days isn't the dreadful word it used to be and can be said quite openly without shocking people. Years ago it wasn't mentioned like a a dirty word. We talk quite openly about it in my family, even laugh in it's face. Hope you are doing OK.

Hondo

Hi Jackie

 

The way I look at everything now is if I can live well without another operation I don’t do it. I find that with all my side effects every time I try to make it better it gets worse. Just my point of view

 

Tim Hondo  

donfoo

Sorry to hear...

Hi Jackie,

I knew you were having issues with the eating. Did the doctor give an explaination of what closed off the food pipe? Did the surgery affect that area? I'm trilled you have a great attitude about it all. You'll do great as you find the new normal.

Don

KB56

Throat blockage

I have been following your story/progress in your postings and soprry to hear you're still having trouble eating.    I didn't have what you had as I just had the tonsil out and then the blast of radiation and chemo But it made eating tough so I can't imagine what you feel like.   i get choked sometimes and that's what you must feel like all the time. Bummer for sure and it looks like others are posting useful information.     I do love you and Guzzle's sense of humor and I love the British accent for sure !

 

good luck as you make some decisions along the way and I would do lots of research and try and find a doctor you really trust.  Hopefully you can get some relief through the options you have and see improvement.   

 

Keith 

jackflash22

donfoo said:

Sorry to hear...

Hi Jackie,

I knew you were having issues with the eating. Did the doctor give an explaination of what closed off the food pipe? Did the surgery affect that area? I'm trilled you have a great attitude about it all. You'll do great as you find the new normal.

Don

Rads

It was the radiation. I was OK after surgery and was eating again but after radiation I started to get difficulties. the surgeon says it's rare but happens. My pipe has turned into solid flesh probably only where the radiation hit it. 

Guzzle

KB56 said:

Throat blockage

I have been following your story/progress in your postings and soprry to hear you're still having trouble eating.    I didn't have what you had as I just had the tonsil out and then the blast of radiation and chemo But it made eating tough so I can't imagine what you feel like.   i get choked sometimes and that's what you must feel like all the time. Bummer for sure and it looks like others are posting useful information.     I do love you and Guzzle's sense of humor and I love the British accent for sure !

 

good luck as you make some decisions along the way and I would do lots of research and try and find a doctor you really trust.  Hopefully you can get some relief through the options you have and see improvement.   

 

Keith 

what a lady!

Jackie again fantastic attitude! You put me to shame. Keith if you like the Brit accent you would prob be very dissapointed and a bit puzzled by my scouse accent. For some reason residents of NYC seem to understand us but many Brits don't! As I said Jackie if you are ever up here and want showing around let me know. G.

KB56

Guzzle said:

what a lady!

Jackie again fantastic attitude! You put me to shame. Keith if you like the Brit accent you would prob be very dissapointed and a bit puzzled by my scouse accent. For some reason residents of NYC seem to understand us but many Brits don't! As I said Jackie if you are ever up here and want showing around let me know. G.

Scouse

Guzzle, I had to Google "scouse" and here's what I found:

Scouse is an accent and dialect of English found primarily in the Metropolitan county of Merseyside, and closely associated with the city of Liverpool.

or

Scouse is a type of lamb or beef stew.

Which is yours?   Does it sound more like Liverpool or taste more like lamb or beef stew:)

Keith

jim and i

Guzzle said:

Best of British to you

Your attitude and humour is brilliant. Warm wishes from scouse land. Extra points to any US friends who know what that means. Denis you don't count as you were born here! I really hope they sort this jack flash. Enjoy Cotswolds and let me know if you and your other half are ever in the viccinity.

Jim has been on his tube for

Jim has been on his tube for 3 years. He goes out to eat with me but doesn't eat. I believe Hondo takes a mini blender with him and blends his food and puts in his tube. Depends on how self conscious you are.

Debbie

Guzzle

KB56 said:

Scouse

Guzzle, I had to Google "scouse" and here's what I found:

Scouse is an accent and dialect of English found primarily in the Metropolitan county of Merseyside, and closely associated with the city of Liverpool.

or

Scouse is a type of lamb or beef stew.

Which is yours?   Does it sound more like Liverpool or taste more like lamb or beef stew:)

Keith

Both Correct

Scouse is a type of stew derived from Scandinavian "lobscouse" which was a thick stew made with potatoes ,carrots etc and embelished with any fish caught at sea. When seafarers settled locally expensive fish was supplanted by cheap neck cuts of lamb. Locals became known as 'scousers' and the accent 'scouse' which is a mix of Irish,welsh,Scandinavian and who knows what else in what was amongst the highest ports in the British Empire. To the citys shame vast wealth was built on the slave/cotton dynamic. Culturally very politics, musical, arts, sports with a rich history of comedians. Known externally as a rough town. But one quite unlike any other. If you meet Brits in US Irish cities ie Boston,NYC who have settled there there is a good chance this will be a Scouser. NYC has two Liverpool supporters clubs that I know of.

Guzzle

Guzzle said:

Both Correct

Scouse is a type of stew derived from Scandinavian "lobscouse" which was a thick stew made with potatoes ,carrots etc and embelished with any fish caught at sea. When seafarers settled locally expensive fish was supplanted by cheap neck cuts of lamb. Locals became known as 'scousers' and the accent 'scouse' which is a mix of Irish,welsh,Scandinavian and who knows what else in what was amongst the highest ports in the British Empire. To the citys shame vast wealth was built on the slave/cotton dynamic. Culturally very politics, musical, arts, sports with a rich history of comedians. Known externally as a rough town. But one quite unlike any other. If you meet Brits in US Irish cities ie Boston,NYC who have settled there there is a good chance this will be a Scouser. NYC has two Liverpool supporters clubs that I know of.

Jackie

Sorry to hijack your thread. Keith we are also known for hospitality. If you ever get to the UK please visit. I am hoping to get over to New York to visit friends when I recover maybe late this year. We can skip over to Dublin from here and clear US customs this end. When you get there its like walking of a bus!