Head and neck cancer

I Start my radiotherapy on Monday.....snow permitting here in the welsh valleys!! No peg for me the bottom jaw is where I am being zapped. If possible ulers pain too much I can have a feeding tube down the nose. I had one for the op that replaced the jaw so I know what to expect. 

So not looking to the possibility of food tasting like cardboard. I'm determined to keep trying foods if I'm able and search my memory to get taste back. 

It is moving forward quickly Lullian but that's because we are important and I have to say for all the challenges our wonderful nhs are facing they are on top of it with us. Angels x

Sorry Lillian a typo with the spelling of your name whoops x

Hi Lillian as others have said take your pain killer, ask before yiu leave for them. I had ng tube so can’t comment in actual,pain but from reading about others over last years you’ll be uncomfortable for a few days. Just treat it as another part towards getting cured. My n g tube was my lifeline, without it I wouldn’t  have recovered as well or as quickly as I did. It’s all part of the process so remember if yiu need to use it please use it all your medication nutrition and hydration can do down it. My hubby used to put  coffee in mine so I could pretend i was  getting a treat. Lol. Once things start the ball rolls along very quickly. 
Hazel x

Hi Kate, good luck with your radiotherapy, I have to say in all honesty I am now starting to panic. As far as food is concerned I am one of those people who eat to live but I do feel bad for those that enjoy food. 
I hope everything goes well for you and you are so right about the NHS they have been fantastic , take care of yourself and keep in touch x Lillian 

Thank you for all your support Hazel because I am really starting to panic now. I will keep in touch because I am really going to need everyone support. Good night x Lillian 

Hi Lillian we will all be here for you. Once treatment starts you get into a rhythm I had a chart ticking the days off. It helped me so maybe worth trying. You’ll get busy with hospital, oral hygiene you still need to be in top if mouth care even with dentures oral thrush can appear,.Before you know it you’ll be ringing the bell. Have you got family who can take you into hospital for radiotherapy treatments. 
Get some box sets lined up to watch. spend this weekend making sure freezers stocked it’s was a good 2 weeks before I started having issues with food so make the most of eating these next few weeks just in case. 
Keep in touch 

hugs Hazel x

Thank you Hazel, my best friend has been doing me some meals and she is bringing them up before I start my treatment. She has just done small portions as she knows I am not a big eater so I am going to have as many as I can lol   She is also taking me out for lunch when she brings them up for me so I am looking forward to that. I will definitely keep in touch with you as I know I will need all the support I can get xx Lillian 

Durhamlady said:

I have to say in all honesty I am now starting to panic.

Hi Lilian. That's  natural. Everything is out of your control and what might happen in the next few weeks is frightening.

That's why we say to take it all day by day and you get through.

When I found my cancer my first though was, "How on earth are they going to get rid of that without doing awful things to me and leaving me horrifically disfigured" I settled my affairs and wrote notes to my nearest and dearest.

Then my oncologist sat me down, looked me in the eye, and said he would cure me. He did. the treatment was a challenge but nothing lasts forever and here I am four years later fit and well.

When I got my first RT date I was calm and actually looking forward to getting started. I did trust my team implicitly. They do this every day and they are good at it. My body never let me down but my mind wobbled a few times. There is no fight we have to fight. That's the job of our doctors. We just have to hold our nerve.

This forum helped me massively to retain my sanity

I did it so will you....a day at a time becomes a week at a time then a month then a year and soon you are nearly good as new.

Best wishes

Hi Lillian, I’m not surprised you are feeling panicky I always felt the PEG was overlooked because of the severity of the treatments and for me the PEG was a frightening and traumatic aspect. However it wasn’t as bad as I thought but it is initially painful and a shock to have this tube hanging out of you. I was prescribed co codomel which dealt with the pain, I also had to apply steroid cream at times as it can get red and sore. I was determined not to use it but my goodness I ended up dependent upon it . My consultant had a big grin on his face when he said “I told you so”. I stopped using it 6 weeks post recovery, it wasn’t recommended by the dietician as I struggled to eat but my consultant supported my decision and I had it removed . That forced me to eat . Looking back I wish I hadn’t been so resistant as it was a life saver , in the scene of things it’s not in for long, will help you and no sooner do you get used to it , you are back in having it removed. Good luck and big hugs Debbie x

Hi Lillian

You will get through this just go with the experts tell them how you feel and dont hide anything.as those on this forum have said it is not a walk in the park but with time you will wonder how you did it

I am 76 and live alone (family keep check on me) I had 35 sessions of RT for tumor on parotid gland and now 12 months post treatment. I lost my taste, my appetite,saliva and confidence. I am now feeling better. taste almost back appetite is returning and confidence nearly there. it was a rocky road. only problem for me is my facial paralysis (which is where it all started) 

I got great comfort reading the many posts over the past 15 months but was never brave enough to post until now. I hope I can provide some reassurance to those on the journey.

Ivan