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I was diagnosed at the beginning of the year with mouth cancer of my lower jaw and tongue. After a multutude of tests to see if the cancer had spread anywhere else it hadn't thank god. I then had 20 hrs. of surgery to replace my jaw and remove most of my tongue. They took skin and bone grafts from my body to rebuild my jaw. I start radiation treatments next week. Joined up here to talk to others and get support.
Annabel Lee. Hi there.
Firstly, welcome to this support group, and myself and other members here wish you all the best with your treatment and eventual recovery.
On here we can honestly say "we know how you feel" because almost all of us have been through surgery or Radiotherapy, or both.
Sounds like you've been through a great deal already without the Radiotherapy to contend with and it must be tough at the moment.
However, we are a general collective of useful tips and info on this site and the site founder and expert on all head and neck cancer issues is Doctor Vinod Joshi who is currently on holiday and should be back soon. He will no doubt respond in due course.
Feel free to ask anything you want and you will always get a response form other members who will be only too willing to help with any questions you may have. Keep watching this space.
Hello Annabel lee Sorry to learn of your cancer and all that you have had done. You have been through the same ordeal as me and if you have the time and inclination you can read my account on the home page. If I can be of any help then just ask away. I look forward to 'sharing notes' on here where we can support each other and, as heathrow steve says, there will be others who can help you when you start your radiotherapy. All good wishes. B.
Hi Annabel Lee
I'm a newbie too, but that doesn't stop my wishing you welcome, does it? I had 10 hours of surgery, but you rather put me in the shade.
As heathrow steve put it, there appears to be a 'collective of useful tips and info on this site'. There are also a whole shed load of useful and supportive people too.
Good luck with your radiotherapy. I start mine in about 2 weeks (also chemotherapy at teh same time). My cancer is in the tongue (surgery removed the secondary cancer in the lymph modes in my neck).
So again, welcome and hope to hear from you soon.
(Mad as a box of frogs!)
Yes, it's great that the cancer did not invade your lymph system (or spread elsewhere). Sounds like you have been through the most difficult part of your ordeal already with the complex series of surgeries. Radiotherapy has its share of unpleasantries too, but you will do just fine. Post all of your questions as you think of them and we'll help you every step of the way.
Just curious... Will you be getting any chemotherapy or just the radiation? Also, if you don't mind my asking, in what stage was your cancer discovered?
Welcome to our online family, Annabel Lee (what a great southern-sounding name!). I wish you the best with your treatments and look forward to posts from you in the future when the cancer is all GONE!
From my heart,
Thank you all for responding and your good thoughts. I won't have to have chemo since they removed my lymph nodes in my neck during surgery. I was told. I don't know what stage of cancer I was when diagnosed they just said advanced. A question for those in the know. What do I have to look forward to with my radiation treatments? One thing I have noticed since this whole nightmare began that Drs. and nurses tend to tap dance around the amount of pain and discomfort you will experience. Any info will be appreciated. Will check back later. Peace.
Have you been given a Radiotherapy treatment programme by your oncologist yet? Do you know how many areas and to what extent you will be zapped? This obviously determines your level of pain and discomfort.
But....as a general rule here are some guidelines that may be of use.
Yes...the consultants/Oncologists do tend to dance around the subject of Radiothrapy for a number of reasons.
A: They don't want to put people off of treatment by describing the Internal and external burns suffered from Radiotherapy as well as the problems you will encounter with taste, swallowing, eating, Dental problems and some degree of pain.
B: As specialists cannot comprehend the level of discomfort that the treatment causes they often fail to understand it.
C: You are likely to be fitted with a stomach peg through which you will have to pump in liquid nutrient or attach yourself to an automatic feeding machine (for convenience)to serve the same purpose.
D: You will find that after a month or so you will want extremely effective painkillers to ease the soreness, and over the counter drugs just will not do.
E: Dental Hygene will be difficult to maintain as jaw movement becomes restricted for a considerable period of time.
F: You may or probably will suffer some degree of muscle spasm or tightness in your neck as the radiotherapy tends to tighten muscles within the affected area.
G: You will feel some level of fatigue and extreme tiredness during and after treatment. This can last for some considerable time. Around a year or so for me.
I prefer to be brutally honest as I wish that my Consultant had laid the facts on the line as I am doing now.
He and my Oncologist left me toally unprepared for the journey ahead after treatment and consequently I suffered severe depression because I did'nt understand.
The most effective pain remedy I was given was Cocaine mouthwash. As well as absolutely killing the pain it left me feeling settled and able to cope better.....however, it can only be prescribed in small quantities and should not be taken too frequently for obvious reasons.
Diflam Mouthwash: A not so effective painkiller but for gum discomfort/dry throat it is a handy thing to have around.
Aqueous Cream: A medicated non-perfumed soothing cream with moisturiser which helps to combat Radiotherapy burns.
Oramorph/Morphine: Essentially a great pain releiver and settler but can become highly addictive and intake needs to be controlled.
I became addicted and needed help to come off of this drug as many others on this site have too.
Glandosane Mouth Spray: For dry mouth/throat. My personal favourite though Biotene Gel is also another widely used product and reccomended by many on this site.
Last but by far from least is the patience required to see this through as recovery from Radiotherapy is a long process and things may seem far from normal for some time. Indulge in consuming pastimes and have people to hand who are sympathetic when you feel down. Things eventually improve and although there are some lasting side effects from treatment these generally become tolerable and end up as a minor irritant such as a partially dry mouth or the occasional neck spasm or loose tooth.
Of course.....everyone responds to treatment differently which Oncologists are at great pains to point out. (In other words you are unlucky if you suffer for any length of time) but Radiotherapy is genrally a very unpleasant experience that cannot be properly described other than by those who have experienced it.
Best of all though is that you can log on here anytime you like knowing that you have our continued support when you feel like you've been dragged through a hedge backwards and want to stop the world and get off. In all fairness, most of us have carried that feeling for many months on our road to recovery and have experienced feelings of great despair. But.... If you ask some seasoned cancer patients on here how they once felt compared to the way they feel now you will see that their strength of character has moved them forward and their experience and advice is here for all to see.
We are as one.
Thanks Steve for all the info. I have a feeding tube they put in before my major surjery. I am on a liquid diet since I find it difficult to swallow. I know the area they will be zapping they mapped it out for me on my face mask they will use for my treatments. I hate pain. So if alot of pain is involved they will just have to give me something. I guess I'll just have to wait and see what happens. I had my teeth pulled years ago and dentures put in so I don't have teeth to worry about. Thanks again for the info.
Annabel one thing that is useful for pain is to keep a notebook of medications you take and rate the pain on a scale of 10. But going to 12 out of 10 when you feel desperate that day! That way you can also get an idea of improvement when it comes. When you start to write 7/10 followed by 6/10 a few days later you know how well things are improving.
It sort of gives a bit of personal control and personal control is helpful to make you want to go on. With all the weeks of treatment and relying on others so many of us find a point where we feel less control than we want. So a pain managemnet diary gives you an element of control when you are in discussion with medics and can say look my pain is 9/10 or 11/10 on a scale of 10.
Hello again. Heathrow Steve did an EXCELLENT job of outlining and describing what you might expect with radiotherapy. I think his list is quite thorough for sure.
Unlike many patients at the onset of radiation treatment, my Danny and I WERE told precisely what to expect... and our oncologist did not mince words. She was brutally honest. At the time, I was put off a bit by her candidness and perceived brashness... simply because we were still in complete shock and dispair having just heard the dreaded diagnosis. Now, however, I am so very grateful for her honesty and must say it helped along the way to know what was happening as new side effects presented themselves throughout my husband's journey. There were no surprises. While mere words cannot totally prepare someone for the experience of radiotherapy, it was good to know the "good, bad and the ugly" beforehand. Knowledge is power... and, in some ways, reduces fear at least to a degree.
Now, I will say this... As grisly as some of the side/after-effects may sound to you... Please know there are truly a great variety of ways, products, and "tricks" that will help you manage them. H. Steve included quite a few good ones in his post, as did Pauline. This is an area where utilizing the wisdom and experience of people on this site will be a big help to you along the way. Let us be your personal resource.
Try not to consider or worry about everything (that may or may not happen) all at once. As you get into your treatments and the side effects begin to present... you'll just deal with each as it comes... taking the advice of your medical team... and people who have walked this path before you to manage day to day. The very best solutions, answers and coping methods from people who have experienced the very same challenges you will face shall come your way via this website... anytime you reach out to us!
You will get through this just fine and, one day just down the road... YOU, Annabel Lee, will be posting helpful encouraging notes to some other frightened, overwhelmed human being who, like yourself, will inevitably reach out for answers, support and HOPE! Find YOUR strength now in all of US, your new friends and "co-warriors" against the enemy that bonds, binds, and unites us all in a most unique and lasting way.
We will help you, dear lady! NEVER feel that you are alone. (The same goes for anyone in your family who has questions or perhaps becomes a caregiver during your experience and may also need support or guidance.) I wish you the very BEST!!!!
From my heart,
MelanieThis message has been edited. Last edited by: Melanie,
I noticed that you are presently logged onto the message board... and was just hoping you would post a note about how you are doing.
I recall your treatment was to begin this week. How is it going?
Just hoping you're doing as well as can be expected and that we'll hear from you soon.
I go today for my 4th radiation treatment. No side effects I can notice yet. It is hard for me to tell though. I still have pain and am swollen from my surgery where they replaced my jaw and all that. The doctor said they were giving me very short treatments for 7 weeks to try to minimize any more trauma to my jaw area. Will wait and see what happens. Still hanging tough.
Good girl!! When the side effects of the radiation begin to occur (which may be a couple of weeks out), be sure to lift the excellent tips from this website for coping, and rely on your online supporters to answer questions and provide a steady stream of encouraging words. Start marking the treatments off your calendar and just think to yourself... with every zap of radiotherapy, you murder a bunch of nasty cancer cells... getting increasingly close, day by day, to becoming CANCER-FREE... ALL CLEAR... and MOVING ON WITH LIFE ONCE AGAIN!!!!
From my heart,
Its been a few weeks into your treatment now.
And are you coping ok with the effects of Radiotherapy.
Let us know.
Thanks for asking. Mostly I am finding my mouth is very dried out no saliva. The doctor gave me some meds for that. Also I am getting red and rough patches on my face and neck. I was also given meds. for that. I just find myself extremely tired and drained with no stamina. I lay down and rest alot. I went and saw my surgeon yesterday and he is very pleased with how I am healing and how everything is going. That was good news to hear. I try to check in here when I can to see how everyone is doing. I'm just real tired of late. Take care.
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