January 2020
Welcome to the club... Can you check with your team and see if you will benefit from Head and neck Lymphoedema exercises as well as swallowing exercises. I'm 8 months out from last treatment for head and neck cancer (unknown prim and hpv negative) and had lymphoedema sneak up with vengeance. Research brought up the fact that H&N patients who start early with both lympho and swallowing exercise regiments benefit enormously by minimizing the swelling trauma after the treatment. It seems a bit early in treatments to be dealing with lymphoedema...but is not unheard of. In hindsight...I certainly feel that had I known about these exercises as well as the real possibility of facing lymphoedema after treatment would have saved a lot of grief. By the way-have you a feed tube installed? Lympho swelling and the ravages of radiotherapy make for very difficult swallowing...you might want to seriously consider one. Joe Aristy
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January 2020
1 Kudo
Hi Yas- One thing that took me 8 months to come to grips with was the realization that both the cancer and the treatment...pretty much eradicated the person I used to be. The person I was and too many of the people who associated with him...now had different priorities and outlooks. Again, this realization is all too recent but what brought this epiphany to my mind is the fact that I sought new groups and new environments. You see, i found that by being a stranger had the advantage of making friends who simply accepted me, my "new look" and "new interests and priorities" as well as limitations. Seek out new venues and you very likely find new strengths as well as acceptance...and personal usefulness. You will be amazed how your experience can make a positive difference in other people's lives. Cheers, Joe
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January 2020
1 Kudo
Hi Russ... Hope all is well. I am curious how you are getting along post treatment. I am still working my way through lymphoedema of face and neck, searching for a way to at least minimize the discomfort and damage. Still unsure as to the degree of success, but seem to have made some progress stalling the swelling from rearranging my face. Cheers, Joe
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January 2020
2 Kudos
Shaun- Yes get some help and support quickly. From everything I have read, alcohol opens the way for cancer to return...and if you are using during treatment it's inviting disaster I found that the only thing good I can say about having gotten cancer is that I came out of treatment being a total stranger to myself...and it's been a challenge to watch this stranger I am becoming overcome challenges. May I suggest you explore different support groups so that your own stranger finds a place to thrive. By the way-I am intimately familiar with various types of personal addictions. Finding a support group of like minded people who also want to leave their addictions behind will help you grow. Joe
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January 2020
1 Kudo
Hi Russ... I had head and neck cancer and am now 8 months past the last Chemo and radio. Although I did not suffer as much abuse as your own procedures, I would think there are probably similarities in the aftermath. Feel free to drop me a line and I'll be happy to share any of my experience that may help you ease your way in the aftermath. Joe
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January 2020
1 Kudo
Seven months after last chemo another new Radio Gift reared its ugly head-Face and Neck Lymphoedema. It was interestesting to discover first hand what people meant by "woody neck" and "moonface" (oh, did I mention "Turkey Chin?). Having run out of insurance and no access to medical people...I had to turn to research on the internet. By now the left side of my face had ballooned, my chin had disappeared under swelling and my neck was not only swelled to one side but also disfigured. Came across a tincture called Red Root which was said to clean up lymphatic system and of help to people whose lymph nodes and channels were insulted or plum fried by Radiotherapy. Tried a measly 10 drops in water the afternoon it came in and 15 drops that night before bed. The results the morning after were amazing-the swelling was noticeably reduced, my ability to rotate my neck was less painful. This is only the second day (15 drops this morning and 15drops at lunch time) and already my jawline is almost visible, most of my turkey chin has been refuced and the arc of swing my face from side to side is increased. This stuff is pretty incredible. If you or someone you know is suffering fom Lymphoedema due to radio...have them research this. It's working for me.
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January 2020
1 Kudo
Anyone out there come against Head and Neck Lymphoedema months after cancer? I'm now looking into ways to fight/alleviate the condition and am looking to benefit from your experience with this as well as share my own experiences. Cheers, Joe Aristy
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December 2019
Joolz... It occurred to me that one detail that i had to fight learning to eat: it seem that since my taste buds were slowly coming back on line, my taste for food seem to change from day to day. Frustrating... More frustrating and something I had to always bear in mind...was the avoiding food that became "The Enemy" during the early days. I forced myself to try those foods...and some actually became enjoyable once again. Thank God this time around I am avoiding chemo/rad and so far haven't had to deal with those side effects...but using the Order Takeout, sampling and resampling old favorites and swallowing exercises are slowly making recovery possible... Cheers, Joe
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December 2019
Joolz... I can really relate to what he is going thru with eating out! Rest assured that it simply takes time and a lot of experimenting at home before one can develop the confidence to attempt eating around others...but, yes! One gets there. For my part I had my sweetheart (my wife will always be "sweetheart") bring takeout food from some of our local restaurants to eat at home. Oh there were the disasters...but also the successes that taught me what I could eat (or figure out what fluid made it possible for me to eat it). I can tell you for months there I was even embarrassed to eat at the dinner table with family-the chocking, the painful swallows, 'going down the wrong way' or even the simple inability to get it past the throat...but yes by around the 5th month for me I felt comfortable eating out at some restaurants. Please do keep in mind that I practiced, practiced and practiced swallowing exercises-which comes in handy dealing with difficult occurrences. Do try ordering in, though...it really helped getting back to the social scene. Cheers, Joe Aristy
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December 2019
Joolz... That is fantastic news to hear! I can sympathise with him and his moods given the immense amount of baggage we carry from the treatments...and some of us can't help but burden our loved ones at what seems the edge of hopelessness. I'm glad to hear you folks got the best christmas present ever-a Cancer Free outlook! Cheers, Joe Aristy
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