Tips for getting through radiation...

j4mie
j4mie Member Posts: 218
in Head and Neck Cancer #1

Hi everyone. My name is Jamie, and I am the caregiver of Pat, my husband of twenty yearsSmile Pat was diagnosed with tonsil cancer in late August 2013. He had a complete tonsilectomy, removal of 29 lymph nodes, and a bit of muscle behind the tonsil area on August 6th. He has healed from the surgery for the most part, but we are gearing up to start a seven week course of radiation therepy. Radiation has been suggusted due to the size of the lymph node at the time of removal (3.5) I am wondering if there are any things that I can do/buy that will help him get through this? I know it is going to be challenging for him, and I would like to help in any way I can to make things even the slightest bit easier...

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    so many things come to mind

    Jamie, welcome to the forum. You will learn quickly as the the treatments progress but here are a few ideas to get you fighting ready.

    Start off cultivating a good relationship with the nurses/staff. They have lots of wisdom and access that you don't even know exist. Will prove invaluable.

     

    Buy some Aquaphor cream from a walgreens to be ready for the coming radiation burns. Prescription stuff is available down the road and guess who will help you with that.

     

    Make sure he eats everythging in sight until he no longer can. Diet be damned. 

    Buy him some oversize colorful crazy print shirts while he still feels like shopping.

    Try  at the very least to attend some/all of the appointments with him and watch one from the viewing room.

    make him go when the day comes that he wouldn't go if left up to him.

    Best regards in your journey! 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Welcome Jaime & Pat...

    Actually if you search the SuperThread (first post pinned to this froum), it should have several references to comfort items and recommended lists to give you an idea.

    I myself also had the seven weeks of chemo and radiation, along with nine weeks of other chemo..., back in 2009, clean and clear since...

    But just as a quick heads up during the rads sessions...

    Wear comfy clothes, shorts, slip off shoes, music CD, etc...

    Music was for me an excellent way of monitoring my time there... It's usually a round a 10 - 15 minutes sessio...3 - 5 songs.

    Again, welcome...

    John

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    prepare for rads

    j4mie,

    Welcome to the H&N forum, sorry you are both here.

    You may want to check out the superthread located at the top of the opening page.  It is full of information and has a list of must have items prior to starting rads and chemo.  You want to be over prepared, never tough it out always be ready for the long week-end.

    We all learned tricks for treatments and side effects of said treatments.  Has he had his mask made yet?  There are tips for chemo, rads and for home.   Just in general rads are progressive in difficulty, for me I had a nice recliner and blanket and slept most afternoons.  When the mouth, throat and neck soreness set in, I used magic mouth wash.  We all learn what works best and with our hints and suggestions we will leave no stones unturned.

    It can be a tough go, but he will do fine, I did and I am not brave (just determined)

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    The best thing about this

    forum is that a person can get multiple ideas....if one doesn't work, then there's a bunch more to chose from.  I bought the Aquafor, but it was too greasy for me....like putting vasoline on your neck.  I used Calendula cream (from the health food store), and Aloe 99 that the Rad Dr. gave me...I started it right away.

    Also....ask the Radiologist about Mugard.  It protects the mouth from getting sores....it worked great for me and several others on here (no sores at all during radiation).

    Food....eat a lot now!!  Gain weight, as it's surely to come off down the road.  By the time I was 1/2 done, I was drinking a gallon of milk every other day....4% milk gave me nutrition (calories), hydration, and the illusion that I had spit in my mouth for a while.  It was also something I could actually taste.

    During rads....hydration and nutrition are the keys for healing....as much of both as humanly possible.

    Stick around and ask questions as he goes through treatment....there's always someone here to answer.

  • j4mie
    j4mie Member Posts: 218
    #6
    Thank you!

    Thank you all for your replies! As I'm sure you know, this is a pretty overwhelming time for the two of us...You have given me some good ideas, and also a new list of questions to talk to the radiation oncologist about tomorrow at Pat's CT Simulation. I'm sure as the days go by I will be back with more questions, or maybe for a simple a pep talk to help me, help Pat, keep moving forward...Thank you again!

  • Hummingbird3
    Hummingbird3 Member Posts: 67
    #7
    j4mie said:

    Thank you!

    Thank you all for your replies! As I'm sure you know, this is a pretty overwhelming time for the two of us...You have given me some good ideas, and also a new list of questions to talk to the radiation oncologist about tomorrow at Pat's CT Simulation. I'm sure as the days go by I will be back with more questions, or maybe for a simple a pep talk to help me, help Pat, keep moving forward...Thank you again!

    Hi Jamie...first I want to

    Hi Jamie...first I want to let you know there is such a wealth of information on here and beautifully people to help you get thought this.  Your not alone and YOU and Your Husband will get through this!!!

    i finished my rt treatments almost three weeks advise from my personal experience I will share what helped me.  It's certainly not cookie cutter and we all reasons so differently to these treatments but in so many ways the same.  I bought a gArden bag, one with alot of pockets,  stocked it with all my products for skin and oral care and I kept it with me everywhere I Went along with water bottles on my car. First, I saw my dentist for a prerad exam and cleaning.  My daily regimen from a week out from treatments I started th Biotene products, toothpaste, gels and rinses. I did this In the mornings after each meal and at bedtime.  Once treatments started I used the Mugard daily, kept the mouth sores at bay.  I also had to start the magic mouth wash due to gum sensitivity about week three.  My treatments werE In the morning..I would swish the Mugard in my mouth just before the treatments. I flossed at night and wore the fluoride trays my dentist made.  About week 4-5 my gums were super sensitive so I would wear trAys about 3o minutes before bedtime after I cleaned and ...use then Mugard to coat my mouth.  I also used lip/mouth moisturizer by Sage called Mouthette.  I had gotten this after my original surgery so I requested more from my hospital pharmacy and it helps with burning sensation around th my mouth.  In reference to the Mugard...i found out about it on here...it is hard to get from what I understand, I asked about from the post on here and since I started using it my Cancer Center started carrying it.   I kept all these products along with my skin care products in my baG.  For skin I used thE Aquphora, aloe Vera gel (100% only) nothing with alcohol for skin.  I'm sure you've been given instructions and products recommend by your doc.  I applied my skin care all throughout the day.  

    please be sure and talk to your doctor about any over the counter products you try If they did not recommend.  one other thing I did for tissue healng that I learned from this link are L-Glutamine. I took 1tsp daily in the mornings.  I would put in aloe Vera gel I drank that was recommended by my RT doctor,  I was able to find one that was tasteless at the Vitamin shoppe.

    I experienced very minimum side effects overall. I was able to keep working throughoutl. I'm a personal trainer and do work from home which I am grateful.  I typiclally work 4-5 hours most days.  this did allow me to be able to modify some Things for my schedule and just for me.  I know this may not be an option for many.   I did journal during my treatments.  It was about week two for me when the mouth seem to start being irritated.  I would just bump up the rinses as needed.  Getting lots of rest was a new normal me.   but I learn to embrace it.  Lots of fluids and eating lots of protein for tissue healing and spinach.  I did a lot protein shakes when I could seems to eat or chew.  I was able to keep my Calories in check for the post part.  Got creative on the shakes :-) scrambled eggs yogurts and peanut butter were a new go to.  I will say fatigue was one of my biggest symptoms so rest rest rest will be good for him And you!  Sneak in those naps if you can. Take care of YOU too!

    I realize this is a lot of info....sorry If its a lot at once.  I'm sure I left something's off possibly, so please feel free to ask away as you encounter things.  There is a wealth of information on here And everyone is so compassionate.  

    Praying for you both.  Hang in there and keep the faith!  

    Blessings

    Christie 

  • Roar
    Roar Member Posts: 269 Member
    #8
    Eat Eat Eat

    your hubby is about to go on the best diet in the world - try to have him put on as much weight as possible - enjoy your most favorite foods as he will probably lose taste for a period of time. every pound he puts on now will help towards the end of treatment. let him enjoy his fovorite wine and foods. Pack in all those calories while he can. start stock piling ensure - its a tough battle but very doable. As treatment progresses the doctors have stuff that will eliminate pain for a brief period to take in calories_ i think the magic nimber was something like 2000 calories a day minimum  - I lost almost 40 pounds and just norrowly missed having to get a feeding tube put in. I was lucky that i was 20LBS overweight.

    Good luck

    Ralph

  • peggylulu
    peggylulu Member Posts: 375
    #9
    About the only thing I can

    About the only thing I can add , and no one mentions it on here , but My Onc. told me to eat/drink everything at room temp . I also was told to use aquaphor Ointment on my neck 2 x a day starting the date Rads were started( be sure to use it after treatment and wash it off before treatments) , yes it is very greasy but I didn't get any blisters or much of a burn . You can buy it over the counter anywhere they have a Pharmacy . Good luck with treatments, hopefully he won't have very many side effects if he does be sure and report them to the Doctor or the Rad Tecks.

  • j4mie
    j4mie Member Posts: 218
    #10
    Wow! This is all great information!

    Thank you again everyone, as I'm sure you all know having been through this, it is so comforting to know that we have support. There is a boatload of useful information you all have given me that is sure to help us make it through this. We had to postpone the CT Simulation and the start of radiation, but it looks like we will be starting mid next week. This means I have a few more days to get out and stockpile anything I haven't got yet...

  • chrystal01
    chrystal01 Member Posts: 3
    #11
    hi jamie

    hi jamie, sorry this post is late i have seen a wealth of very good information on here for you but just wanted to add in my experiances as a carer also, firstly anything to do with the mouth and throat like most of them have said good dental hygiene is essential , what you dont want is any infection getting to any part of that body being treated, i personally looked for a good mouth wash with an anti bacterial added to it , like corsodyl, i found that one for my partner did exactly what we wanted it to do, keep the germs out, he never got one blister or complained of any mouth problems whilst he was going through both radio and chemo therapy, secondly i requested a stomach feeding tube for my partner as his cancer was in the larynx, and with his weight being so poor at the time i could provide the nutrition he needed when either his throat swelled or when he just was not hungry that proved to be a blessing for us, but even without a stomach tube there is plenty of nutritional drinks you can get for your partner that will provide all the essentional vitamins and minerals that he needs in order to fight that cancer off, i also swear by holland and barretts whey protein , people see that as a body building formular for people who attend the gym, though that is very true but it can also be used for people to bulk on the pounds and its a great fast acting supplement , the bodys main building block is protein , your tissues and cells need protein in order to repair it self, i personally found that product fantastic , i was also told by my partners consultant not to let him have normal coffee or tea because he will get dehydrated  but to give him decaffanated instead, plenty of water also, keep those cells hydrated and remember the body is made up mostly of water ,so the more the merrier,  i also found lemon and ginger tea a great solution  to easing off the sickness but you can get anti sickness meds over the counter in the chemist just make sure they dont react with his treatment or other meds he might or might not take, i dont no if this would help but my partner was told to chew on chewing gum to get those glands working , even when the treatment ends your partner still might be feeling a little poorly from the treatment , try and make him keep his nutrition up to date thats really important , his body wont be able to fight back without a little help from food , and he may be get tierd and irritable through or after his treatment thats completly normal thats where you will have to take the reins and keep him fighting on , i wish you and your partner all the best throughout and after this long battle but stay positive and look after yourself, i no how hard it is but the feeling of winning is priceless  x

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #12
    First off...

    wishing him and you the very best!!

     

    Hydrate.  Eat a LOT now and enjoy every pound :).  Rest often, when he feels tired...have him nap.  Take immaculate care of his teeth, brush, floss and rinse often.  Take care of his skin.  I used Noxema skin care (wash and lotion) and while my face did get red, I never burned and barely had any peeling or discomfort.  If he has to have a PEG, keep it clean and use it often.  It truly was no big deal to get one inserted, to use it, or to have it removed,I promise!!  Ask a lot of questions and don't be afraid to ask.  The doctors know their stuff, but if you question something or don't understand..stop them and ask.  As tough as treatment can be, know that it does end, and he CAN get through it.  The peple on this site were amazingly helpful to me and I honestly give them credit for getting me through my toughest time. Stay in touch!!

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