immunotherapy

Hi Loch. You have had a tremendously difficult journey and it's a marvel you are still here with us to share your story. Thanks for doing that. It couldn't have been easy. So sorry the radiation did so much damage. Chris chris2012 one of our other community champs is PEG fed. He usually pops in i evenings so I'm sure he will answer some of your questions.

Could I ask how you coped with the Radical neck dissection and how long it took you to recover. I am asking because a friend faces the same possibility after a recurrence.

Best of luck

Hi Dani I will try and make this short but to the point  the disection surgery itself was not to painfull but I did and still feel pain in that area. My left side face is totally numb and very very tight  and moving my tongue to the left is impossible and had to have new dentures as I was bitting my tongue and cheek while eating.      My left arm is very restricted above shoulder height from the main muscle  being cut and this is permanent and the numbness travels down my left shoulder to almost no feeling round my left man boob. The side effects I have noted here are permanent  but very easy to live with but still pretty embarrassing asking someone to change a lightbulb. The very best of luck to this person and I'm sure they will cope just as I have 

Thank you George for taking the time to tell me. 

I had 2 dissections.  Eventually a modified radical to remove most of the lymph nodes.  Although they did not cut the accessory nerve they did disturb it.  I recognise many of the side effects you talk about although my shoulder movement is nowhere near as restricted.  Time was a great healer and after about 18 months I got to a place where nothing was significantly limiting me. I also lost quite a bit of saliva generation.

Thanks Dani xx

Good evening Loch, i understand what you have been through and going through, when i had my last operation it was virtually my last throw of the dice, thankfully they managed to stop any more cancer from coming back although the damage and side effects did change my way of life quite a bit but have managed to adapt very well and live quite a normal life. I am PEG-dependent for my food intake as my swallowing is no good due to the surgeries and treatment afterward, if you click on my name it will take you my profile where i have written a brief story. Having a PEG fitted is not as bad as people imagine, once it has settled in you should find it quite easy to use either by using a syringe as i do or by using a pump. The good thing about using a syringe is that you can use it while you are out and about so you are not restricted and is very easy to keep clean, i do it twice a day using wet wipes and then drying. The tube will have to be changed every 6 months by a nurse who comes around your house when needed taking about 20 minutes. Im sure what you have been through the PEG will not be a problem, thanks for sharing this inspiring story, wishing you all the best.

                                                                                          Chris 

Hi, I read your story and I'm really  stuck for anything to say other than well done for hanging in there and not giving up. Right now my eating by mouth is by blended diet but just found out that my fluid intake is leaking into my lungs rather than into my tummy  so this is why docs are suggesting the feeding tube.Silly question time..... do you feel hungry even after you have taken you daily intake and if so can you mentally block out any hunger urges you may get,  I love my food 

      Loch

Good evening Loch, i used to like my food also but i must admit i have never felt hungry after taking two bottles of feed using a syringe you can take more if you want to but be careful as the food supplement is full of calories, i have even put soups through the tube although its not what dieticians advise, as long as you are sensible you should be ok. I think we both have had a rough time of it all but its worth it

                                                                       Chris