I've just stumbled across this site by accident - or was it fate? - and wanted to say how reassuring it is to know I'm not on my own.

I'm fast-approaching my 1st anniversary of diagnosis and have found myself swinging between feeling happy, proud of myself & grateful to be here and bouts of 'why me?' - all very normal, I know, but not very productive.

I'm supposed to be doing research for an essay but I can't concentrate. My tongue - what's left of it - is tingling (I'm assuming it's the nerve endings firing up again). I'm thirsty but have ridiculous problems drinking - between my tongue, my shrunken epiglottis (now they didn't warn me about THAT before I went for radiotherapy)and my bizarre mental block about all things liquid, I can't drink anything other than 'Build Up' drinks. Weird. But true.

I'm hungry but eating in public is still a bit of a no-no for me (I'm on campus just now) so I'll have to wait until I get home. Besides. No-one can understand me when I ask for anything.

Grumble grumble grumble. I'm such a moany old boot!

I must pull myself together. There are plenty of people who are worse off than me. Let's face it. As my oncologist once pointed out at least I'm infection and cancer-free. It almost earned her a slapped face, but I'm too nice for that.

OK. Moan over. Hope everyone out there is hale and hearty and whatever your situation, may it all work out well for you.

Janette

Hello Janette

Welcome. You never know, we might be able to help with the essay too!

Best wishes
Vinod :coffee:

Hello Janette

The feelings you describe are all normal for anyone who has had treatment. Up, down, under and over. Those feelings just get everywhere. You describe, elation,despair and pride in coping. I think we have to congratulate ourselves when we do cope as no one else will as they cannot possibly know how devastating it is to have your life so dramatically changed by taste problems and speech dryness.

As for eating in public just have a gallon of water on hand and a spare hour to get through it <g>!

Jaanette, Been there done that. You have just described a typical day in the life of a struggling CANCER patient. It has also veen a year for me to the very week. I find my self over joying things. And trying to cope with the fact that no one else except my husband seems to think that this is such a BIG THING. I mean I just went to HELL and back, pains like no other person should ever feel or be allowed to feel. Yet this is no big thing and believe me it is too. I never had any MAJOR problems eating or drinking until I had almost all the tongue removed. Same with talking. I caould talk almost as well as I ever had before. This is not the case this time around. But I am going to try. I just had to wait for all the swelling to go away. It is slowly getting there. Please try not to be so hard on yourself. Just take all the extra time you have and apply it to good things in your life , I know that sounds like a bunch of bull but it is so so true.. Spend it practing swallowing or eating, anything you can do,,,,okay,,, And Can I say this to you--Thank the Lord that we have you to talk to this year later. How proud we are that he listened to our prayers and saved you. And they say he does't listen, well sure he does. they also say there are no miracles,,,,well I truely believe that there are nillions of them every day.....Always Vicki

Thanks to all who replied to yesterday's message.
I'm glad to report I'm feeling so much better today.

It seems so cruel to be glad that there are others out there like me - I wouldn't wish all this on my worst enemy - but it really is so reassuring to know that others have been there and come out the other side. And now - in my happy state - I realise just how lucky I am.

Back to work - today, a delightful little workbook about Chemotherapy. This afternoon, workshops on Colorectal Cancer ("""Have a think about what you want to get from the session in terms of the patient experience of cancer"""). I'm under strict instructions to keep my mouth shut! Given that opening my mouth is more of a problem I shouldn't have too much difficulty there!

Has anyone noticed the irony of having an 'Instant Graemlin' with its tongue poking out? and a slice of pizza?! Oh, how I wish I could...! :thinking:

Lots of love and all good wishes to you all,

Janette xxx :lol:

Hi just joined the site today and like you so glad I come accross other people to chat to with the same worries and moans as I have. I have just come through 2 surgeries which haven't worked and now I am awaiting radiotherapy.I have no idea what to expect but I am sure I will have help from this site.

Chin up
Tracey

I'm getting so much from this site - be it general info or support. It's wonderful - I wish I'd found it sooner .

Sorry your surgery wasn't successful - I can't imagine what that's like . To go through it all once was bad enough for me.

Radiotherapy isn't that bad. OK, I had a sore throat for a couple of weeks and the skin was painful, but so long as your pain relief is OK, you'll be fine. I had hydrocortisone for my skin, but I understand that different hospitals/ staff have different opinions on using creams so don't be alarmed if you aren't given any. I've been told there's no real evidence as to whether creams are effective or not :banghead: .

I notice you too are based in Scotland - where abouts? (feel free to send a private reply!) I had surgery at St John's in Livingston and have since been attending the Western General in Edinburgh: it would be interesting to share info about your experience of hospital treatment :thinking:

Must dash off to a lecture now Take care - let us know how you get on. And try to keep cheery if you can !

:lol: Janette xx

Hello Tracie and welcome to RDOC. 10 tumors oh my LORD! You poor thing. How old are you? When was the CANCER diagnosed? Radiation as you will find out is different with each person you ask. It really depends on you. As for singing, well I could sing again after I had it and I had it twice. You need to consentrate on TRACEY tho, not just your voice. There is a lot more to you than that. RIGHT? RIGHT. I can't sing anymore tho but not because of the radaition. You will have good, bad, worse, horrible days. Just remember that it doesn't stay that way. This to shall pass. We are here if you need us. We will hold your hand, listen to you, laugh with you and cry with you. You have friends,,,, Lean on us...Always Vicki Lynn

Hi you all make me glad to be me. I'm further out and still have the same problems that you have. I also have a speech deffect. Life is not allways
easy. I'm on a liquid diet which is fine with me
lost me lower teeth to radiation. Trying to save
my uppers. Had the cancer in 1989. Please feel free to e-mail me anytime. Good Luck in school.
Cathy

Hello Cathy from Arkansas, I too have had this since 1989. Wow do we have a lot to talk about or what? So where was your CANCER in the begining of all this? Did you have radiation then? How about the surgery? When did you have it done or did you? I also am on liquids, feeding tube, lost my bottom teeth when they removed my jaw bone. My uppers are hanging in there. They look great. You must tell me everything. I had the surgery in Feb. this year. No more radiation tho. Had all I can have prior to the surgery. I am slowly but surely healing...It is sure taking it's time tho. Let me hear from you,,,,,,Always Vicki Lynn.....I am a country gal too, live in Vegas, but was raised in Oklahoma.....