I have been diagnosed with tonsil and lymth node cancer i have been told the worse that is going to happen with radiation and i am scared and really have no one to talk to about it, i start my radiation this coming monday 10th December and was wondering if anyone has had this and the radiation and if it is as bad as they say it is i am also having chemo once a week, i am going to Peter Mac in melbourne which i know is the best i guess i need someone to talk to if you have had this and can talk to me that would be nice.
9 Comments
Super Contributor
Hiya Radiation can get tough but it is doable and there are things you can do to help yourself. Stay in close touch with your cancer nurse. Start salt water soaks straight away, don't wait for the skin to show any signs of being burnt. Oral hugiene eg salt and bicarb mouth wash. Eat as well as you can and seek help if you cannot, it is important to maintain weight so that your mask does not become too big and also it helps you to get through and with the fatigue. Experiment with food and keep an eye out for soft food recipes that are easy to eat. I had radiotherapy and didn't have to take any pain killers. My skin suffered the most despite treating it from the outset, but I have very sensitive neck skin anyway. I managed to eat all the way through with some weight loss but nothing too drastic. I was lucky and there are others that go through far worse. I don't think you can really tell from the outset, just deal with the affects as and when they happen. There are ways of helping - refer back to the cancer nurse bit. I wish you luck and just think day 1 is one day over and done with. Julie
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Occasional Contributor
Hi there Radiation can get tough, but you will get through it. Like Julie said it is very important to maintain your weight so your mask doesn't get too big. I found I was getting mouth ulcers from the combination of radiation and chemotherapy at the same time and I found Sambucol Lozenges that contained Black Elderberry, zinc and vitamin c the best in helping with that problem. You can get them at the chemist for around $10. Start taking them before chemo and for about a week afterwards. Panadol Rapid are also good for your throat if it gets sore. If you find difficulty with swallowing ask for a small spray bottle that you can fill with water and just spray directly into your mouth. Good luck with your journey. I know it is hard but you will find the nursing staff in the oncology wards are wonderful.
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Thank you for your advise on the throat lozengers i will keep them in mind and for the panadol, my doctor has given me equivilent to panadol forte but long lasting they last for 12 hours i take them now and they take the edge off the pain i am getting even before treatment which also worrys me but my oncoligy doctor says is normal and as far as weight loss goes i dont mind looseing some weight as i have plenty to loose but i do understand about the mask part.
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Thank you julie for your response and i hope my pain level will be minimal but will take each day at a time and i know the nurses are wonderfull and i plan on eating all the way through but still scares me. Salt water soaks you speak of what are they i have not heard of them, and i cant tolerate salt water in my mouth whether in health or not and not even when swimming in the sea which i dont do for that reason so i will get a good mouth wash. Abs
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Super Contributor
Hey abs Do whatever it is you need to do. So if you can't do salt water find an alternative as you have already said you will do. Throughout your treatment you will find eggs wonderful. I used to make omellettes all the time and put veges in there aswell. You might want to think of a way to get some carbs into you aswell and soups are a good way with that and / or pasta. You will know what is best for you. :) THere are all sorts of sprays you can get to help with any pain you might get. Salt water soaks are just saline water. I used to make up a litre to one point five litre a day and keep it in the fridge. Then I would take two clean flannels and soak them in some saline water and then slightly wring them out and place on the area where I was being irradiated. It helped me tremendously even though my skin was a mess at the end. I honestly thought it would be that bad at the beginning or at the very least half way through. We were all scared before we started treatment and I was scared during it also and found it quite difficult to overcome hurdles. I didn't have anyone I could talk to about the treatment, so I hope that you find this site some help to you. All the best. Julie
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Frequent Contributor
Have you thought about contacting Cancer Connect? Just call the Help Line 131120, and ask to be transferred to the connect team. They take your details then match you up with a volunteer that has had the same cancer/treatment as yourself and contact is by phone from that volunteer and is confidential. I am one of these volunteers, but not for your cancer.It is easier talking to someone over the phone sometimes than talking face to face.
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Frequent Contributor
Have you thought about contacting Cancer Connect? Just call the Help Line 131120, and ask to be transferred to the connect team. They take your details then match you up with a volunteer that has had the same cancer/treatment as yourself and contact is by phone from that volunteer and is confidential. I am one of these volunteers, but not for your cancer.It is easier talking to someone over the phone sometimes than talking face to face.
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I am 2 weeks ahead of you, having now had 17 radiotherapy visits for laryngeal cancer. I got through the first 2 weeks with no pain or impacts. BUT over the weekend after the pain in my throat rapidly worsened, and for the last week swallowing has been very painful. I am now on 3 pain management routines, a skin patch that lasts for 72 hours, soluable panadol 3-4 times a day and liquid morphine, which so far I have only taken at night. Night time is the worst, my throat dries out and when I wake swallowing is incredibly painful. Then some water moistens it a little, but I have been missing out on lots of sleep. I even tried a steamer in the room to see of that would help, but it doesnt. I have a week of treatments to go and figure it will continue to get worse. I think I will start taking the morphine more often, although it does make me feel a little weird. I am still eating ok, I like my eating! I just choose foods I love, like ice cream (which is very soothing)but dont normally eat too much. My skin has held up well, I put sorbolene on 3-4 times a day. I would be interested to hear from others on how they managed the effects of RT on the neck. How is it going for you now?
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Hi David Thank you for your post, always good to get other tips on things, i am going to have my 10th radiation tomorrow, i have had 2 chemos as well i am starting to get a sore throat and tongue but not bad enough to not eat (hell will freeze over before i stop eating), i had a sore throat before treatment then last week, week 1, the pain went now it is back and probably hear to stay, i have all the morphien and others ready and waiting, i also found listerne alcohol free good for temp relief and also warm drinks better than cold and cold milk is good seems to put a linning on things for a little while. I have put the sorbolene on and decided to use it all over the face and magic cream is getting rid of some wrinkles so i am happy about that. I hope things are not going to get to bad for you in the coming weeks keep in touch and let me know who you go, where you getting treated i am at peter Mac abs
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