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The Mouth Cancer Foundation Online Support Group Mouth Cancer Forums Members Forums Introduce Yourself New Tonsil Cancer member!|
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Hello everyone, I'm new here!
 Have just been diagnosed with Tonsil Cancer  . I have a tumor on my left tonsil. Have had head, neck & chest scans & thank God it doesn't seem to have spread. Next week I get a PEG tube & a PICC line put in (deep joy!  ) and they start on the radiation mask (so if anyone knows of an am-dram society which needs a male lead for Phantom of the Opera, I'm your man!!) Treatment (chemotherapy & radiotherapy) is scheduled to start 5th June, daily for 7 seven weeks. I'm trying to stay positive, am determined to beat this and aim to maintain a sense of humour  .Would love to hear from anyone who has undergone/is undergoing same and how they are coping, or if anybody has any advice I would be grateful. Could I just draw everyones attention to a head & neck cancer forum at Head & Neck Cancer Forum Its a good site with caring people but not many visitors! Please check it out. Cheers Harry Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Hello Harry
Welcome. Many of the members here have had similar treatment to what you are going to have and will be able to answer any questions you have. You will find the patient stories on the MCF website useful in getting an insight into the journey you are making. While each experience is individual, it is helpful to know what to expect and how others have coped. Do ask any questions you have and someone will answer. There is light at the end of this long tunnel. Best wishes Vinod  Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice. "If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally." Lao-Tsu, Tao Teh King |
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Hi there Harry...
Your humor in the face of adversity is AWESOME! Try not to lose it as you get into treatment, and beyond. Let it be your "ace in the hole". It is surprising how joking and trying to make light of challenging situations can get you through them with grit and resolve. You indicated wanting to hear from folks who have "been there"... That would be my husband, Danny. His was stage 4 base of tongue cancer. His treatment plan was the same as yours... radiation/chemo. We know all about the things you mention... PEG tube, radiation mask, etc. When Danny's radiation oncologist stated (upon our first visit following diagnosis)... "I'm going to put you through hell and back... but my goal is to cure you"... Danny and I took stock in that... Phrase 1 was terrifying... Phrase 2 was HOPE! It was, indeed, the experience from Hades... no sugar-coating that... but now, over one year later... He is eating again (tube was out about 6 mos. ago) everything he wants... He is working again full time... He is stronger every day... He is shooting sporting clays again... He is planning for the future... and he remains CANCER FREE! You do have some crappy things to endure in the next weeks and months... You will have some dark low days... You will suffer the side effects (that I'm sure your physicians are telling you about)... You may well need that feeding tube that is being placed... You will be weak and may feel quite sick... Life will be "on hold" for a while. But, the good news is... Once the "hell" days are over... healing begins... recovery will have its ups and downs too... but, hey... it's recovery (which means the treatments are o-v-e-r). The end result MUST be remission... That's what you totally expect, look towards every single day, and will take nothing less than... and that's what I wish for you with all my heart. Life will begin to return after you have been declared in remission. By the way... Do you mind my asking in what stage your cancer has been discovered? Please know that there are some practical tips and "how-to's" that people on this website (including myself) can share throughout your treatment period that can be quite beneficial as you manage side effects and mentally-physically fight your cancer. If you do not feel well enough to be online... Relay your questions to a friend or family member and have them post messages on your behalf. You may be surprised how much help is right here on this website. I wish I'd known about it before/during, rather than after Danny's ordeal. Harry, please feel free to share with me your thoughts, fears, questions... anything that is on your mind. I want to help. Once you get through the weeks/months ahead... it is ENTIRELY likely that BETTER DAYS ARE A'COMING! Please know YOU ARE NOT ALONE and FOCUS ON THE FINISH-LINE! I look forward to the days that you will be posting notes on this message board to help others endure the ordeal that you have come through with flying colors! Keep your beautiful outlook to the best of your ability. God bless you!!! From my heart, Melanie |
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Hi Harry, How you doing? have you had your PEG in yet? I expect you've been trawling through the web looking for more and more info and frightening yourself silly - I know I did. Everyones cancer and treatment seems to be different doesn't it. Anyway just wanted to let you know that I've been hinking of you and wishing you well. Best regards Rosie |
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Hi Rosie
How very kind of you to reply. Are you the same Rosie as on the DIPEx site? It means such a lot just to know others that have suffered/are suffering with a similar problem are thinking of you. Yes, I've done the searching bit and frightened myself silly, but then, I did find this and the DIPEx site, so that's a very good thing. I've now got my PEG in thank you and so far so good. First rotation on Fri, now there's something to look forward to!! Chemo/Radiotherapy starts first week of June daily for 7 weeks. How sre you now? If you are the same lady I know you are quite a bit ahead of me, so I really hope you are well on the way to recovery. Please keep in touch. Kind regards Harry Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Hi Vinod
Thank you for your post and the Patient Stories link. It is very reassuring to know others have been where you are and have got through it. Thank you for finding the time. Kind regards Harry Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Hey Melanie
Thank you so very much for your wonderful reply! What a truly compassionate, caring lady you are. Your post has really cheered me up, thank you. I am trying to keep a good sense of humour about the whole thing. I just know I am going to beat it, so why should I feel badly about things? Yes, I know there are lots of bad days to come, but I can take all they throw at me because I know its necessary to beat this thing. So it's a case of "Short term pain, long term gain" as far as I'm concerned. As far as I can ascertain my cancer is stage 3 - they don't really tell you over here, but looking at some of the notes that's where it would seem to be. I am so very pleased that your Danny has made and continues to make such wonderful progress. I also shoot shotgun. Occasionally I shoot clays, but mainly I shoot game and vermin. I will look forward to the season starting in September, by when I will be well on the way to recovery. Melanie, a huge thank you for your thoughts and advice. I prey that Danny continues to go from strength to strength . With someone like you backing him, how can he fail? Please keep in touch. My home email is harry@17alders.freeserve.co.uk. Bless you both. Harry Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Dear Harry,
It was great to log on and see your post. We were hoping to hear something from you today. You will be a very busy man starting the first week of June with your treatments and it may be difficult for you to stay in touch. But I do sincerely hope that we will know how you are faring from time to time. You will DEFINITELY be back into the shotgun sports when all this is over and done with. That's something you can focus your thoughts upon and look towards... along with any other activities you enjoy. Danny missed one hunting season during his illness... (He had completed all his treatments several months prior, but still was not quite physically up to the challenges of hunting by that point.) He resumed hunting this past Fall and returned to the sporting clays events this Spring. He is a happy boy!  Harry, when you tell me "I am going to beat this thing"... I TOTALLY BELIEVE YOU! Is there someone who will help you through the upcoming weeks/months? Do you know how you will be receiving your chemo yet? Some people go back and forth to a clinic for chemo treatments... while others (like Danny) get chemo around the clock (as a patient in the hospital). Danny had four separate weeks of chemo at various intervals during (and after) his radiation treatment period. You may contact me by email too. [mhylton@hughes.net] As a freelance news article writer, I'm on my computer all day and check email often. Since you will soon be knee-deep in appointments and taking care of yourself, I'll let you decide when to touch base by email and just wait to hear from you (rather than initiating contact myself not knowing your schedule or how you're feeling on any given day). Look forward to staying in touch and helping you whenever I can. Stay strong! Melanie |
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Hi Harry!
Hope your treatment is going well. I am sure you must feel pretty dreadful by now. I am just about to start chemo and radio together -not looking forward to it! Have you started to use your peg yet? I'm just off to see if my mask fits and to go on simulator.Speak soon Anne |
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Hi Harry
Yes I'm the same Rosie as on the Dipex site! I really get around these days! Im now nearly one year on from initial dignosis, and feeling pretty good. I was talking to some friends yesterday and they were all saying how well I had done, how hard it must have been etc etc. but somehow when you look back it doesn't seem all that bad. Yes there were days when I was so tired I couldn't hold a thought in my head but they soon passed. The only effects I am left with are a slight speech defect and inability to eat large amounts of food at once - I never was a big eater anyway but I need to regain about 8lbs in weight and that seems like a mountain to me!! Anyway, I just wanted to let you know that this time next year all this will be behind you. Take care, sleep a lot and keep whacking the ensure down the tube!! Keep in touch Best regards Rosie |
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Hello Anne
I hope you pick up this post. My sincere apologies for not having replied to you. Regret I have been suffering a bit during recuperation and my PC contracted a virus that deleted all of Outlook Express. Have only just got back online and managed to salvage some stuff, thankfully your post!! I hope all is going well. Where are you with your treatment now and how are you? If you prefer, please drop me a line to my email adress harry@17alders.freeserve.co.uk as I keep in touch with most of the other Forum members like this. Hope it is all going as well for you as it can and remember YOU ARE GOING TO BEAT IT, no question. Please feel free to ask anything you think I might be able to help with. Keep strong, my thoughts are with you. Very best wishes Harry Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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Hello Harry, mine of a right Tonsil, base of tongue, neck resection, rad treatment etc.Well I am still here and doing well, can now drink beer, wine too acid, not up to curry standard. Lived on rice pudding for quite time. It is not a question of beating it, bearing up to the pain, when you are spitting razor blades. When the Doc asked me how I felt I said, it's as though I have a golf ball studded with spikes stuffed down my throat. Two years on and I am doing great, so if I can make it you can.Big Bear Healing Hugs Garance |
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Hi Garance
Thank you for the contact. Really nice to hear from someone who has been there, done it and getting on with life! I'm just coming out of the lethargy, albeit very slowly!! Thanks again. Best wishes. Harry Yesterday's history, tomorrow's a mystery, today is a gift, that's why it's called the present. |
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The Mouth Cancer Foundation Online Support Group Mouth Cancer Forums Members Forums Introduce Yourself New Tonsil Cancer member!