Welcome, Im nearly 12 months on after treatment. I can give you encouragement in that you will improve greatly over the next 9 months. Like Vatch says there are a host of problems to deal with every day, but it becomes the new normal. If you get into the routine of following all the instructions given to you by the hospital, you will have a good quality of life. So do keep up with neck excercises, swallowing excercises, diet, oral hygeine, keeping mouth moist, etc. Also make sure you do some of those things you promised yourself, that you would do if you made it through. Kim
I had a lump in my neck which turned out to be Cancer.
I am 14 weeks post treatment and recovering fast, It is the scariest of things to face but you do get through it and you will be stronger than you think you are as you go through the treatment.
I am also happy to share my experiences past and present if it would help anyone just starting down this path.
Hard to believe at the beginning but there is life after neck cancer.
Hi vatch, pleased to hear you are doing well in your recovery. I managed some christmas dinner but didn't bother with turkey or I would have still been chewing it now! My next appointment is 6/1/16 and I think then an appointment will be made for my scan. I'm also looking forward to having my peg removed. So hopefully lots to look forward to in 2016.
Thanks for the advice Kim , it's heartwarming to hear from someone 12 months on from treatment and doing well. Can you eat most foods now? And do they taste as they should?
Hi mikey mike it sounds as though we are both at the same stage post treatment. Have you had your scan yet to see how you have responded to treatment? I'm still waiting for mine. But getting to feel more like my old self each day.
From your posts I can see you with your outlook you will make a good recovery. Regarding eating I can eat most foods, but spicy food and dry food are difficult, bread and crisps are hard. Pickles, wine and hard liquor are out as they irritate my throat. I carry a bottle of water around with me. As regards taste, it took about 3 months to begin to get proper flavors. This has kept improving month by month and as I now have no reference to how food tasted before treatment, everthing tastes just fine, I enjoy my meals. Those weird salty and metallic tastes have gone. I have problems with mucous building up in my throat, especially on waking, due to lack of saliva to wash it away but find that tea (rather than coffee) and soda water are good at breaking it up. The other things I cant eat any more are many of the sloppy foods I ate for months while recovering so I cant stand the sight OR smell of porridge, custard, rice pudding, cottage pie etc anymore. Best wishes for your recovery and a happy 2016 Kim
Hi ladyjane, I'm glad to hear your well on your way to getting your life back on track! My brother has just been diagnosed with throat cancer a few days ago, he or the family have no idea what stage his cancer is at, he has a scan to get in the next few days on his neck and chest, drawing on your own Experiences how long until we know what we are dealing with? And what to expect in the future? Its such a shock, apart from some hoarseness there were no other symptoms at all! I'm trying to keep positive that its been caught early, bit its so difficult to keep the worst case scenario out of our mind. I think I'm dealing with it worse than he is! He has booked a new years day meal with his own wife and kids and is his usual upbeat self, while the rest of us fall apart! Sorry for the long story and thankyou.
Ive had my PET scan and it showed no activity so in theory I am currently Cancer free ;-)
Peg tube due to come out in the New year, be good to get rid of it now, even though its been my best friend for the best part of 6 months! I really didnt want one, insisted I would rather force myself to eat but I am SO glad they talked me into having one.
Red Wine has just started to taste like Red wine again ( not that I will be drinking much from now on)! So my taste buds are slowly getting better.
It is not the best of times to be honest and the following is how it happened to me;
I had a lump, Ultrasound inconclusive.
I had an operation to remove tonsil and take samples of the lump and other areas. I was then diagnosed with Cancer but only in the lump with an 'unknown' primary site. Orange stickers appeard on the paperwork now and the NHS swung very swiftly into operation (they were briiliant).
Next I met the consultant, he told me there was a 95% chance of a full recovery ( Avoid Dr Google you will only scare yourself). He told me the best course of treatment would be 7 weeks of daily Radiotherapy and 2 weeks of Chemo.
I then had a PEG Tube ( feeding tube installed in my stomach), a PIC line in my upper arm for the Chemo and a Cancer mask made for my face. Oh and lots of blood tests, an MRI, a PET Scan and a CT scan. CT, and PET are pretty easy, MRI worse but doable.
The Cancer mask is to hold your head in place during the Radiotherapy (apparently they work to within the MM). I am a little claustophobic so I asked them to cut out the nose and eyes and this really helped. I dealt with the radiotherapy by watching the machine and working out what it was doing. I am a techy so it interested me.
My sessions lasted for about 15 mins. The making of the mask was worse than the 35 sessions wearing it, and the making whilst unpleasant was ok.
The Chemo was ok the after effects unpleasant, do take the sickness meds, and I would avise anyone going through this to make oral hygene from the outset a priority. The mouth ulcers and 6 weeks of dribbling for me were the worst part of whole process. He will also become a master of how to throw up, my advice would be to make sure you have water in your stomach to throw up when you feel the need.
Nothing I went through hurt or was that painful, it was just unpleasant. Perhaps the worst part of it all was not being able to sleep properly for 6 weeks or so. Your tongue shuts down the throat and a lot of dribble has only one way out and thats through your mouth so for a few weeks you are spitting out gunk every 10 mins or so!
I didn't want to see anyone while I was 'beating Cancer' I had a very supportive other half and 4 year old little man. I 'came out' on Facebook with my Cancer to my friends and just told them I was happy for the well wishes but didn't want any visitors until I had gotten rid of it.
Stay strong, a desire to fight it and win is very important.
I Started this process in May last year and am now back to relative health and even lost some weight on the way. At first you think its the end, I did, but it isn't always the sentance it used to be.
Ask any questions you would like to.
This website and reading Vatch's blog helped me to get through it. The support of my soon to be wife and little boy helped no end.
