Lymphoedema

FormerMember
FormerMember
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Hi all my name is Andy i am 51 years old and 16 weeks post end of Radio/chemo therapy for tonsil cancer.

I had my Ct/pet Scan last week and i am currently waiting on the results, this itself is nerve wracking and has been possibly the most stressful part of this event. However i have a question for those of you here who have undergone this before me.

I have been left with what i have been calling my "Turkey neck!" After reading a few posts on here and researching through the cancer research site i realise it is Lymphoedema i have! What i would like to know is what to expect with this? I have read it is incurable but there are ways to manage it!  Does anyone else here have this has anyone had it and its went away?  Any advice/tips will be very welcome. Thanks Andy

  • FormerMember
    FormerMember in reply to Beesuit

    I will need to try these out carefully. At the moment just thinking about trying this is making me wince!!! I still have difficulty with swallowing with different times of the day bringing different results but i would be interested to know if anyone else has had struggles with certain letters/words? I have found that i really struggle to say a word/letter than involves me stretching my tongue toward the front of my mouth. These sounds/letters are mostly E, D, C based.  I physically cant say these letters and words like "Each" "Easy"  and "Cheese" cause me problems to the point i find alternative words rather than show people my difficulty!!!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, I used to sleep with a bottle of water by the bed. As soon as I woke up piped in a couple of soluble paracetamol and began the jaw stretching. By the time I’d got down to breakfast the pain was under control and the jaw was wide enough to eat. Used to take 30 minutes to eat my Bircher muesli (compared to 10 minutes eating granola pre-treatment) but pushing on to get breakfast in sets you up much better for the rest of the day!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi...yeah i have a bottle of water by my bed and end up waking multiple tomes during the night. Its getting less now but the trade off is a mouth as dry as the sahara! Tongue bloated up and lips gluGrin together!! I get what your sayong regards breakfast. I was an hour to eat a poached egg or a bowl of cornflakes was even longer! Again this is improving now but some times i skip breakfast and haveGrin better brunch as i just cant cant the fight first thing when i get up! Thanks for the paracetomal tip, i may just give that ago.   Yes we are the lucky ones indeed. GrinGrinGrinGrinGrinSmileSmiley