Thanks for that info Liz. There's a hospice just a mile up the road from where I live, so I will keep that in mind when I go to see my consultant on Thursday. I'm willing to give anything a go that might help life a bit more bearable. I'll let you know how it goes.
Thanks again.
Dian x

Hi all,
Just to let you know I saw my consultant today and asked about MLD massage. He was still very much 'well if you want to try it, that's fine', which I was a bit disappointed with, but I am going to contact the Helen Rollason Cancer Care Centre, which is only a couple of miles from where I live and arrange an appointment there to give it a go. My consultant was very pleased with how I'm doing, one year on, but I have to say I wasn't very impressed when his HSO had to ask if i'd 'had a bit cut out'! Shouldn't she have known from my notes (and my scarring!) that I'd had major surgery! Sometimes the system really scares me.

Hi Everyone,

Just a quick question. I went to the consultant last week and he said that because I was doing well I should reduce the Amytrypline. I have done this, so am only taking one a night now but I have become irritable, snappy and very miserable, is this coincidental or could it be because of the reduction in the medication?

Sue

quote:

Amytrypline

Hello Sue

Possibly,

quote:

Withdrawal Symptoms
After prolonged administration, abrupt cessation of treatment may produce nausea, headache, and malaise. Gradual dosage reduction has been reported to produce, within two weeks, transient symptoms including irritability, restlessness, and dream and sleep disturbance.

These symptoms are not indicative of addiction. Rare instances have been reported of mania or hypomania occurring within 2 to 7 days following cessation of chronic therapy with tricyclic antidepressants.

Also have a look at AMITRIPTYLINE - (Elavil) withdrawal symptoms and side effects

Best wishes

Vinod

Hi Everyone,

Haven't posted her for a long time but I do come on to read posts quite regularly.

I have to tell you about what happened to me at work this week. Part of me feels good about it but it also knocked my confidence. A main part of my job is telephone work and although I still find this difficult at times, because of the lisp and problems saying certain letters I just get on with it, and as far as I can recall have only every had one person ask me to repeat something.

I had a very angry man on the phone this week and I did the usual, took his particulars to help him and he then accused me of eating whilst talking on the phone and said how rude that was. Now it was afternoon, I had eaten lunch and was tired and my speech always slurs after I have eaten or am tired. Anyway I put him in his place, when he asked the question are your eating? and then remarked on how rude it was I just responded by saying No I am not eating but for your information I have had tongue cancer and part of my tongue removed. At that I felt him shrink from being about 7 feet high to a matter of mm's and from that point on, his attitude changed. For all he knew I could of had a speech inpedement all my life. If I speak to someone on the phone and their speech is not quite right I would never question or comment, why are some people so ignorant.

Nevermind I am still working on the phones and will not let an ignorant and unconsiderate person like that stop me.

Sue

Hey Sue!

Long distance high five! It's a wonder that he was able to talk, considering that he had his foot in his mouth.

Julia

Hi Everyone,

Hope you all had a good Christmas. Mine was good but suffering now. Have the old Oral Thrush back probably due to too much alcohol (when I say too much I only mean a couple of glasses) and too many, and I mean too many, chocolates.

I have had a bit of swelling as well, but have a check up next Friday so will ask about that then. Am not worrying about it as it will only make it worse, and hopefully, once again it will be nothing.

I really want to wish everyone who takes the time to read, post and respond to posts on this website a very Happy New Year. I discovered this website at the beginning of the year when I was at an all time low, feeling very alone. I don't think I would have done as well as I have without all the advice and encouragement that I have received since being a member. I tell everyone about it. Thank you all so much, will be thinking of you all at midnight.

Sue xx

Hi Sue (and everybody else, naturally)

Happy New Year to you and yours.

While we're all lifting a glass to bring in MMX, take a moment to think about everyone we've lost this year: Bob, Ananth, Trev. Who did I miss?

Best of luck with the check up next week. I am weeks away my next check up. Hard to believe that I'm so close to the five year mark already.

We're having second Christmas today because my sister and her family couldn't make it to Michigan last week (they'd been snowed in and my older niece was in the Nutcracker).

Julia

This message has been edited. Last edited by: Julia,

Should I be worried or not?

I had my 8 weekly check up on Friday 8th January and despite me telling my consultant of a few niggles I had he said that everything is fine and looks good.

I had told him about the pain I keep getting on the left side of the jaw which is the side i had my neck dissection and rt and he said that if, when I go next time the pain is still bad he will give me a normal x-ray. Well a week on and I am still having lots of pain and having to take painkillers every day and sometimes once or twice a day. I can cope with that as I think it may be something to do with the cold weather and he thinks it could be nerves and nothing more than that.

However. my tongue is very sore and not only on the side on which I had the surgery but on the other side and the pain feels like the pain I experienced on the left hand side prior to my surgery. Also I am feeling very tired at around lunch time every day with the feeling like I have flu coming and earache.

My surgeon/consultant is great and I want to believe when he says everthing is OK that it is but I can't help worrying. I don't feel that I should request another appointment so soon after the last one as I don't want to waste his time, for him to say that everyting is fine, when he could be treating someone in far more need than myself.

Sorry if it sounds that I am harping on but I am just able to get my worries out on here rather than venting them to my family whom I don't want to worry. I think they have been through enough already, especially my husband and children.


Sue

Hello Sue

Often the pains in the area of the ear and side of jaw and face are TMD Myofascial pains which are misdiagnosed. See: Oncologic stress: Its causality in myofascial pain disorder or in temporomandibular disorder . My advice on this can be found here. You may also find past discussions about ear pain helpful.

Best wishes
Vinod

Hi All,

I'll apologise at the beginning of this post, I'm on a bit of a downer, so just want to put in words to people who understand how I'm feeling at the mo.

At the weekend I had two really bad nights. On Sunday evening I had some bad pain in what felt like the teeth and jaw of the side on which I had the op and on MOnday night I thought I was going to either have to call a Doctor or get the hubby to take me to hospital because the pain was unbearable. I haven't had any pain since Monday night just a dull ache, however I have kept myself drugged up with Ibuprofen. I had put it down to the cold as on Sunday I took a walk on the beach and on Monday i was outside again for about 4 hours, however I was wrapped us well with hat, etc.

My tongue is always sore, feels like it's burning up but since MOnday it's been twice as bad and tingling all the time and I am really fed up with it now.

I have a Dental appointment on March 1st and my next hospital check up on March 12. At one of those appointments someone has to do something, take xrays or something cos I really cant cope anymore.

If you have the same problems even if it's occasionally please just tell me so I know I'm not alone.

Thank You,from the not as usual cheerful

Sue

quote:

Reply

Hi Sue,
I don't know if you have read any of my posts but I am 18 months down the line from 3 x major surgery, including radical neck dissection, radio therapy and chemotherapy. I too had major pain in my teeth, jaw and ear and I can honestly say that the best pain relief I got was from soluable co-codamol. It seemed to go straight to the pain and is available without prescription. If that doesn't do the job, ask you doctor for sophadol (a higher dose of co-codamol). Both of these got me through a very rough time during various treatments. Good luck and I hope you start to feel better very soon.
Dian xx

Hi Dian

Thanks for replying. It has been 2 years since I had my op and 22 months since I finished my r/t so I think it strange that I am still getting these horrific pains.

Do you still get them?

Sue

Hi Sue,
I get the pain very sporadically now and there never seems to be any reason it kicks off. My consultant did tell me yesterday that radiotherapy effects are for life, not just a certain period of time - which cheered me up no end, as you can imagine! He then went on to tell me I would never be able to have the teeth replaced that I'd had removed during my first op, so I was glad to get out of there before he could hit me with any more good news!! I would definitely try the co-codamol or sophadol though.
Good luck
Dian

Hi All, just an update on the pain I am having.

I went to my dentist last week and he took x-rays of my teeth to check there were no cavities etc, I was hoping he would find something but there is nothing.

Today I had my hospital check up. My consultant is concerned about the pain I am getting expecially as it is getting worse. They did an all round x-ray of my mouth but that didn't show anything either so now I have to have another MRI scan. He said this should be through within 14 days and I have booked another appointment with him in a months time.

However, I am a little worried as he said those famous words to me "I dont think it is anything sinister but I want to get it checked", he said those words before I was first diagnosed.

Oh well what will be, will be. He said that if the MRI scan doesn't show anything he is going to put me on medication they use for neuralger (don't know if thats the correct spelling)and see if that helps.

Sue