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Hi everyone........this is only my second post but I check in every day to see if I can help someone and first let me say that if you have swollen glands DON'T IGNORE them. Mine never hurt, just aggrevated me so after my GP checked them out I had a biopsy, exploratory operation, stent in the main artery in my heart and 2 1/2 years ago the big one, neck dissection, 54 lymph removed and at the base of my tongue a chunk was removed and a trach was inserted. I had 26 radation treatments. After the operation they gave me Aquaphor which comes in a tub. It is a wonderful moisturizer........if you can get that USE IT, you have to keep the neck moisturized and don't forget about the ears, inside, outside , and in back of. Like Anath and so many more people say you have to keep a positive attitude, my thinking was that I didn't get sad, I got MAD, thinking how dare Cacner was gonna get the best of me and I have to say that's how I got through everything along with family and friends. Now you also have to get a sense of humor. Did any of you measure your scar from under one ear to the other.........I did..........why.........I was probably bored on day. Speaking of bored I don't want to bore anyone because I could go on and on but just one other thing..........years ago I met a woman whose son had Cancer and I asked her if she thought why me and her answer was why not me. We never kept in touch and I wish we did because this very brave woman got me through my illness. I always think Why Not Me. I still have my feeding tube just after 2 years but am trying to get rid of it and am taking only one can of Nutrem a day so hopefully in the next month it will be bye bye. Try no to be scared because these people are here to help........like they say been there there done that and they do have some funny tales to tell. Take care everyone.
edit: link to Aquaphor given...This message has been edited. Last edited by: Dr Vinod K Joshi,
you are so right about not ignoring swollen glands,that was my first symptom and g.p was not really too worried so i didn't and they got bigger and i still ignored them.they eventually grew into 2 eggs and after constant nagging from my husband i went back to the g.p who when he saw them i could tell by the look on his face it was serious.he said he was writing to an ent specialist and i would get an appt within 2 weeks.well 9 days later i saw her and she looked down my throat with a camera and took a biopsy from each gland.i went back the following week to be told that she found cancer in my glands and she suspected it was in the base of my tongue and it was.1 year later after chemo and r.t i am here and although suffering from constant sickness and dry mouth and no taste buds i am still alive and i say thank god for that. love shirl xxx
Hi Shirl..........About two years ago just a couple months after my radiation someone suggested that I see an Accupuncture doctor becaus he heped people get their saliva back. Ok it didn'r work for me but were all different and I'm gonna try it one more time. One woman that he treated got her saliva back after two years and she also ate a scallop which was her first bite of food. I cried when I heard that. When he put the needles in my parts he said if they fall out call me, well they kept falling out of my ears. He never said anything just kept putting them back in and when I got home I checked my ears and I was so embarassed. They looked like roadmaps not cracked and sore just dry and peeling skin and I think it was because I didn't put enough cream on them. Sometimes ya just don't think. With the saliva my surgeon said that some people after 2 years get it back so keep wishing for both of us. All during my waking hours I chew Orbit bubblegum in the pink package. It took a long time for my taste buds to come back but in the last month or so they've been pretty good but still not completely back and for the last six months they would come and go in minutes. Things would taste good and all of a sudden I was saying that everything tasted like poison not that I know what that taste like one can only imagine. I think with this Cancer is that we have to be very very patient which is very hard for me but I have learned that this is something that can't be rushed. Shirl I don't calim to know it all but I had 5 operations and was in hospitals 10 times all in 6 months so maybe I can help you or anyone if there are questions. The only thing is that I didn't have chemo. Like you said your alive and someone told me you're above ground and on the right side of the dirt and horizontal. Take care and hope you're feeling better.............JCP
thanks for sharing your journey with me,i never thought about acupunture i might mention it to my g.p next time i see him.i may be able to get it on the nhs as we are on benefits because my husband is disabled and there is no way i could afford to fund it myself.i hope you are well joan. love shirl xxx
Hi Joan P, Thank you for the cream. My husband really needs something. May I ask why you never had chemo? I guess Doctor's have different treatments. One more thing the feeding tube it is still hard to swallow is that why you still have it? I"m sorry this sounds like 20 questions. I just finished watching Columbo. My husband Andy can't swallow at all and I am hoping this will be short term.
Hi Jilly........The doctors didn't think that I needed chemo but I was suppose to have 30 radation treatments but I could only do 26, at that point I could hardly walk I was so exhausted and besides each treatment took 20 mins. It really funny how each doctor thinks because just before my radation my surgeon said you know that you don't have to do radation if you don't want to and at that point I said that I would because I told the other doctors that I would. I was in such denial that I was just about a zombie. My surgeon is the kind of person that he thinks that by putting his finger down my throat he can more tell more than from any other test, and he's done this many times and each time I try to bribe him with cookies or food but no he does it anyway. Ok.......the feeding tube, now mine it through the stomach, is that the kind your husband has? I had a horrible time swallowing and I do go to a swallowing therapist now it's every three weeks. I've been doing it for the last year. I always thought that something was in my throat but the way they explained it was that now I have what they call a woody neck and since lots of the nerve endings have been cut during surgery they are trying to grow back like new branches on a tree and besides there is lots of scar tissue. After all this time ny neck seems to be shringing and tightening up. On a cold, rainy, or a very hot dayI feel as though it is really closing up on my so I get one of these so called bed buddies microwave heat-packs that can be heated in the micro oven for about 2 mins but don't make it too hot........works wonders for me but don't get the vibrating collar, it does nothing. If he does go to a swallowing therapist he has to keep up the excercies. It's a tough fight but we gotta do it. Keep up the positive attitude. Let me know thing are doing........Joan P.
Please do not take any offence as this is just light hearted banter in a serious discussion. You know I am an Indian (well Spanish,to confuse things) and have an Indian name - Ananth. Ananth in Hindi means - Immortal and Anath means an Orphan!!. Dont feel bad or anything of that sort as I have more then a quarter of my life telling people how to pronounce my name!!!
Joan - just a question - you had 26 sittings of Rad and then the docs decided enough because of your situation of being exhausted and no chemo. Out of curiosity - at what stage was your cancer in when diagnosed?
One last thing - about asking - why me? The answer that the old lady gave was totally apt. Why not me? In fact when I wrote the story - my question was the same. Like Arthur Ashe -the only African American to have won the Wimbeldon said when he was diagnosed with cancer (of which he died) - when he won the Wimbeldon - he never asked God - "why me?" So he saw no reason in asking - "why me?" when he got the cancer. Everything has a reason and whatever reason I have got it and survived so far has a reason and once the reason has ended I will know. There is a reason behind everything that happens and the faster we accept it and take it as a positive - we will live a much better and happier life.
Love to you all,
Live on your beliefs and strength- and you will become immortal.
Hi Anath........I really don't know what stage my Cancer I was in and never thought to ask but I remember being rushed to a couple of medical centers for all these tests and one doctor said that we have an urgent situation here and if you have what I think I'll radiate your neck and your brain. I said why my brain, he said I think you have brain Cancer and I said NO I DON't. Needless to say I didn't go back to him and I didn't have brain Cancer. Although he said do you or did you drink alcohol No, do you or did you smoke No, did you or do you chew tobacco No,I laughed so hard but he didn't think it was funny. I did non of the above but was always surrounded with the smoke and alcohol. The doctors and I came to the conclusion that my Cancer was probably caused from second smoke. Needless to say I stay from anyone smoking. How are you feeling?
This is "Ananth" here. The doctor who just wanted to go ahead and radiate your neck and brain - imagining you had brain cancer must have been a patient escaped from the asylum for the insane. Boy! am I glad you did not go back to him!.
Life at my end is okay as it can be at I get tired out really fast as compared to the time I would manage to go out, walk around etc. till about a month ago. Now - I take things much easier and pass most of my time on writing and reading a lot.
Ananth ( Anath means an orphan!!)
Live on your beliefs and strength- and you will become immortal.
Hi everyone.......Good news, this past Thursday after two years my feeding tube (peg)was removed. That was one happy day for me. The saliva is still not back and my taste buds change constantly, but I am eating better and have to gain some weight, so......please please try to be patient anyone out there that has had base of tongue cancer and above all try to keep a positive attitude. This cancer is not a game we can quit, we've got to keep fighting it.
wow joan peg out and eating!what great news it must be wonderful to be able to eat again.surprising how much we all miss our food.i am so happy for you joan.i know that eventually there will be a light at the end of the tunnel for me too. love shirl xxx
Hi Shirl.......it sure is good to be able to eat better, still have a long to go but yesterday I did have a plain hotdog on seeded rye bread with lots of butter,no crusts but sooooooo good. It's been a rough couple of weeks, had a house guest with 2 cats for two weeks which was suppose to be two days but I won't bore you with the details. Somehow it never stops, I woke this morning and my right shoulder had a good size lump so I went to my doctor, he in turn sent me over to an orthopecic man who took x-rays and said that I have a diseased rotor cuff. I guess I had it for a long time along with some pain so he drew a good sized vial of blood and is sending me for an MRI. I asked him if he thought it was cancer and he said that he didn't think so but that's why he's sending me off for an MRI. I told him no more operations.
Shirl did you ever try the accupuncture? And how about those taste buds.........do they seem to change from minute to minute? I tell people that and they think that I'm from Mars. People that have no problem eating just have no idea what we go through but on the other hand we don't know what other people go through. Like my Mother always says we all have issues some are just bigger that others. Did you get a feeding tube? Let me know Shirl
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