Almost 5 yr survival
hi, some of you know me and helped me when I first was diagnosed with BOT cancer. I had surgery for the removal of the tumour. I had 6 weeks of radiotherapy. i lost shoulder muscle and disfigurement one side of my mouth. After surgery I could swallow okay and after the Trachie came out I could speak fairly well. After six weeks of radiotherapy my oesophagus closed completely with scar tissue. I couldn't swallow any longer. After 18month feeding through a tube my surgeon gave me the chance to try to open my throat by running a 'wire' up through my tube into the oesophagus the scar tissue, at the same time running another wire down till the two wires met the stretching with dilation. It worked I'm happy to say, it opened enough to swallow liquid but not solids which for me was a 100% better than a tube all my life. it will be 5 years in October since the finish of radiotherapy. I still get regular dilations. In October ...fingers crossed' I'm signed off their books as 'cured'. I still get more mucous than saliva but this keeps my mouth from drying up. It's something that's become part of me and my survival. It doesn't bother me. I'm used to a liquid diet...all part of a new me and way of life and it's become the norm. I no longer dwell on cancer...I feels it has left my body. I don't come on the site that often any more but just had the urge to tell people you can get better, try to be positive, I think that helps with recovery. Eat and drink as much as you can. You need all your strength to fight with. I live a normal life and I'm happy.
Comments
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hello, hello, hello.
Jackflash22,
And a nice howdy-do-to-you. I always like it when some of my original gang make an appearance. I would like to know how everyone is doing, but that is not in the cards or the stars or the H&N member playbook. That is alright, enough of the ones I know do check in and it brings a smile to my face. I am sorry for the rough road you ended up on, but I am happy that you are ok with the way things are (if you are not ok, tell me and I will correct my post). It may not be as important to others, but I really like to hear the stories each of the H&N member carries (or drags) along with them. It is beneficial to me as well as to the new members, who often think they are alone in the nightmare we call H&N cancer. I agree, I don’t dwell on cancer, but I like to help the new members get their feet under them and the basic questions I can answer and leave the more complicated ones for their doctor or a H&N member with more experience than I do.
Take off your shoes and try and relax, you are in the Cured Zone. I have been here a year, it is nice, but I still wonder about life. (Once bitten, twice shy)
Matt
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TREMENDOUS NEWS
Hey Jackie,
Huge congratulations, I'm glad to hear the great news about your progress! Are you using a Vitamix to blend your meals, or are you on the cans and cartons of Jevity, FiberSource, etc? I'm in my 18th year of surthrival from my 2000 BOT surgery and radiation; and 7th from my laryngectomy, and esophagus reconstruction. I too am on an all liquid all of the time diet, for which I use a Vitamix to blend my home meals, and a NutriBullet Rx for blending meals when I hit the restaurants. I hope that you are back to having pre-beast fun
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Hiya!
Hi Jackie,
Very nice to see those from our assigned bus drop in and say hi. You had a prolonged recovery but you kept moving forward, one step at a time. Trilled to hear you are you, not the new "normal", just you. I'm less than a month from the official finish line and rather than think about cancer I think how lucky and wonderful life is everyday.
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Nutrabulletpatricke said:TREMENDOUS NEWS
Hey Jackie,
Huge congratulations, I'm glad to hear the great news about your progress! Are you using a Vitamix to blend your meals, or are you on the cans and cartons of Jevity, FiberSource, etc? I'm in my 18th year of surthrival from my 2000 BOT surgery and radiation; and 7th from my laryngectomy, and esophagus reconstruction. I too am on an all liquid all of the time diet, for which I use a Vitamix to blend my home meals, and a NutriBullet Rx for blending meals when I hit the restaurants. I hope that you are back to having pre-beast fun
I use a nutrabullet blender. I make myself what I call milkshakes with ambrosia creamed milk pudding, 1 can a day, half a can peaches, 1 baby rusk, raw newly laid egg, iron+vitimins crushed and top it up with hot water. It's like a hot rich beverage drink. I love it. I have coffees during the day with complan mixed in. I drink tea as is and can crunch lotus biscotti biscuits as they dissolve immediately I sip the tea..the only solid thing I can eat. It stings my mouth but love the crunch. I started off with my weight 5 years ago at 11st. i Lost weight rapidly...I was on a peg tube and ensure, after my oesophagus was reopened I got rid of the peg tube, by then I weighed 8st. I've kept that weight for about 4 and a half years, I try to gain a bit of weight cos I look too thin but I can't gain weight but I'm not losing it either. I'm healthy, energetic, don't drink...can't...yukky. don't smoke haven't for forty years. All in all I feel as normal as I did before the cancers. Difference is I don't socialise unless I have to. I'm happy in my own company, my hobbies are painting. Sewing, OOAK fabric doll making, gardening, walking my mini dachshund, I'm very happy. There's life after all the dreadful treatment, just a different direction. Whatever you make it.
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Hellodonfoo said:Hiya!
Hi Jackie,
Very nice to see those from our assigned bus drop in and say hi. You had a prolonged recovery but you kept moving forward, one step at a time. Trilled to hear you are you, not the new "normal", just you. I'm less than a month from the official finish line and rather than think about cancer I think how lucky and wonderful life is everyday.
hi donfoo, so nice to hear from friends that encouraged me to get where I am right now. There were times I thought I wasn't going to make it but with yours and all the other friends in my 'year' I got through this nightmare...that's what it seemed at the time, now I rarely think of cancer that's why you don't hear from me much. Hope your doing well. Xxxx4
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Whatcha mateCivilMatt said:hello, hello, hello.
Jackflash22,
And a nice howdy-do-to-you. I always like it when some of my original gang make an appearance. I would like to know how everyone is doing, but that is not in the cards or the stars or the H&N member playbook. That is alright, enough of the ones I know do check in and it brings a smile to my face. I am sorry for the rough road you ended up on, but I am happy that you are ok with the way things are (if you are not ok, tell me and I will correct my post). It may not be as important to others, but I really like to hear the stories each of the H&N member carries (or drags) along with them. It is beneficial to me as well as to the new members, who often think they are alone in the nightmare we call H&N cancer. I agree, I don’t dwell on cancer, but I like to help the new members get their feet under them and the basic questions I can answer and leave the more complicated ones for their doctor or a H&N member with more experience than I do.
Take off your shoes and try and relax, you are in the Cured Zone. I have been here a year, it is nice, but I still wonder about life. (Once bitten, twice shy)
Matt
so nice to hear back from old friends...I'm doing so well now I rarely come on the site. Hope my story gives hope to new members of our exclusive club.xxx
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Hello friendwmc said:Hi Jackie,
That was so nice to read. I too am October. The Oct. 2nd will be my 5 year. So glad to see your post.
Bill Oct 2,2013
just popped back in the doors of the 'club' to say hi and say all's well after the 'brute' left. I feel normal once again been fit some time now. Had a few scares but got through them, mind over matter' I refused to give in to the 'beast'. Hope your doing okay and your many problems are being managed. Nice to see you xxx
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Hi friend
I replied bill I'm waiting to see it appeared. If it doesn't ...I wrote I hope your staying well nice to hear your a five year survivor...good feeling. My Oct finish date is the last Monday in Oct. all my checkups have been last mon of the month. I'm still regularly dilated to keep my throat open but it's no big deal, I've been so often now, I'm friends with the staff at the hospital. I've a really nice male nurse called Gabrielle he's the only one that can put in a cannula painlessly. I started off with dilutions weekly, then monthly, three monnthly now it's been six months, they've just called me in for a dilation to check if in six months my oesophagus has or hasn't changed. I'm a guineapig as I was the second one to have this procedure, so I have to attend. Don't feel like it, though as I realise they still have to have their notes updated. Keep well Bill xx
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BLENDINGjackflash22 said:Nutrabullet
I use a nutrabullet blender. I make myself what I call milkshakes with ambrosia creamed milk pudding, 1 can a day, half a can peaches, 1 baby rusk, raw newly laid egg, iron+vitimins crushed and top it up with hot water. It's like a hot rich beverage drink. I love it. I have coffees during the day with complan mixed in. I drink tea as is and can crunch lotus biscotti biscuits as they dissolve immediately I sip the tea..the only solid thing I can eat. It stings my mouth but love the crunch. I started off with my weight 5 years ago at 11st. i Lost weight rapidly...I was on a peg tube and ensure, after my oesophagus was reopened I got rid of the peg tube, by then I weighed 8st. I've kept that weight for about 4 and a half years, I try to gain a bit of weight cos I look too thin but I can't gain weight but I'm not losing it either. I'm healthy, energetic, don't drink...can't...yukky. don't smoke haven't for forty years. All in all I feel as normal as I did before the cancers. Difference is I don't socialise unless I have to. I'm happy in my own company, my hobbies are painting. Sewing, OOAK fabric doll making, gardening, walking my mini dachshund, I'm very happy. There's life after all the dreadful treatment, just a different direction. Whatever you make it.
Jackie, it sounds like your NutriBullet is working well for you. I would, however, like to suggest that if you would like to enjoy a greater variety of smoothie meals, that you experiment with the NutriBullet Rx, which is the model (probably their most powerful) that I use, as I mentioned, when I eat, so to speak, in restaurants. It does a great job of blending anything that you put into it within 3 minutes, heating the food up in the process. I always use milk to blend anything that I am eating from waffles to steak, and even salads. I put portions of everything that would be on my plate into the pitcher with some milk and lettt'er rip; seasoning to taste of course. If you are interested in gaining some weight, eating regular meals blended might help, and the blended meals are all so tasty. Las night I had a delicious takeout meal from a Cuban restaurant of shrimp, rice, black beans, yuca, plantains, with sweet peas from home added for my greenery. So, I encourage you to check it out for some tasty, nutritious fun.
I also encourage you to get back out there and socialize, if as it sounds, like you did pre beast wars. After my wars, I was hesitant for a few years to do my PEG tubing in public, but I eventually got the the point of say'in (to me) Just Do It, oh wait, that was hmmmmm who said that before?, and I haven't looked back since, or around when I was tubing, which I did for 11 years. As I've talked about, probably ad nausium, I am an outdoor activity enthusiast in the world of hiking, camping, backpacking, biking, canoeing, etc. I belong to the Florida Trail Association, Happy Hoofers Chapter, which is a like minded and spirited group that engages in all of these activities, and it is for me, a wonderful experience. I enjoy being out in the wild period, but I enjoy it even more when I am sharing it with kindred spirits, and then there is the conversation, stories, and comeraderie (spelling, who knows, not me) that goes along with it. We did a 5 miler in Big Cypress yesterday which was beautiful; hiking through a variety of prairie, mixed hammock, and cypress domes all dry until the summer rainy season starts in a couple of days, to a small, scenic, 60 foot deep lake, created by a sinkhole in the limestone topography. I might mention, so I will, that as I am missing almost all of my tongue, and being a laryngectomy, I am not able to participate in the conversations as I would like to, but I listen, and write on my Boogie Board LCD tablet, so that I am still enjoying the experience of being a part of it all. Thus, I encourage you to give socializing an experimental try and see how it goes; you may be surprised in many ways. If I am mistaken about your pre-beast socializing, please disregard all of the above. Lastly, as always, Keep It Mov'in Forward! With Love and Smiles,
Patrick
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