I think that this is the worst time, sorry you are in the thick of it and things may seem to get worse but stay strong and stay positive, things will get better.

Yeah now I have blisters. My dr is getting after me because I now have lost 2 and 1/2 pounds in one week. I have about 15 blisters in my mouth. They gave me a magic mouth wash that is supposed to numb for ten minutes to eat but I am not finding this helpful. They want me to get a feeding tube(peg) my husband just keeps telling me to eat but he doesn't understand how bad it hurts like you all do. I am debating the feeding tube I am thinking it maybe easier with the kids, because they are not the most patient while I try to get food in me. Also I currently have no one assisting me with my kids.

Hi Mum

get the PEG!!!if you have so many bisters in your mouth,and are loosing weight then its a must.Its not a big procedure,and you can still eat when you can.Nutrition and hydration are the key to success in this treatment and recovery plan,so don't delay.

liz

Using soluable aspirin can numb the mouth temporarily. Hold the liquid in your mouth for a while and then spit it out. It may help for eating depending how bad your mouth is but dont swallow it and you might want to check with your dr that it's ok for you to it as everyone is different. Hagg.

Hi! Mum,
I think I have said it before "GE THE PEG FITTED", the proceedure is easy(nothing is perfect?) and the abilty to swallow food even down a tube is a lot better than losing excessive weight and having to be fed in hospital when you don't have the strength eat, you can still at times try to eat with the tube in place and you will find that you get used to the PEG food, I had mine for 4 months and I won't lie to you I didn't like it BUT it sure was a good thing to have at the time. So stop thinking about it and get it fitted(Please remember I can only give you my opinion and it is not medical advice for that you need to see you GP)
Love Trev

hi mum

im really feeling for you at this time i know exactly how you feel when you say your husband keeps telling you to eat, he loves you but doesnt understand the pain you are in. However the advice here is right. Get the PEG it will make you feel a bit better and it will stop the "nagging" from those around you to keep eating! I didnt have a PEG but i did have an "NG" tube which is pushed up your nose and down to your stomach, it looks awful but it saved my life, no exaggerating. I didnt want it and fought it for as long as i could, pretending that "i'd be ok" it was just my pride talking. I thought i could fight it all on my own, but it's nothing to be ashamed of and it really helped me phsically and mentally! I ended up with it in for a couple of months and was quite sad to see it go! I worried about what people thought about it seeing this yellow tube hanging out of my nose but you get on with it and actually nobody minds at all! I even went to a wedding with it in!

Whether it is a PEG or an NG my advice would be to get something sooner rather than later. I actually told my hospital they should put PEGs or NGs in everyone before they start treatment as a precaution iam so in favour of them! By the time i decided i needed to have one i was really too weak and was not really in a fit state to know what i was doing. Dont leave it any longer, it will help you. You have enough to cope with, without worrying about how much you can eat. good luck you are doing great.

hi mum

sorry i also meant to say try and get some help with the kids, i know it isn't easy but you will need someone to help you with them x

Hi Mum
I was very upset when I read your post. You poor thing, you shouldn't have to be dealing with this stuff. Like bianconeri, I think that PEGs should be mandatory.
There is so much suffering associated with this damn disease I don't know why it isn't part of the protocol to fit the PEG at the outset and therefore prevent unnecessary distress.
Are you being open with your husband about how much pain you're experiencing. He might be dying inside to see you suffering but is bouying you along because you seem to him to be doing OK and he doesn't want to let the team down. There is no room for heroics in this situation and you must be totally frank, open and honest with those around you. Speaking from a carer's perspective I can say how heartbreaking it is to see your loved one suffering however you don't want to drag them down by showing your own feelings. Everything really needs to be laid open on the table so everyone involved knows just where they stand, what expectations there are and also, everyone's limitations.
I really feel for you. This bloody disease and it's effects makes me so mad. Do you have someone who could care for the kids for you? A family member who could take them to give you and your husband time to get through this together? A friend? BE KIND TO YOURSELF, Mum. You are in the midst of a battle right now, allow your body all it needs to deal with the blows.
It is always such a comfort to know we have the love and support of everyone on this board, I hope it helps you too to know that we are thinking of you down here at the bottom of the world.
Onwards and upwards
Love
Deborah

Thank you guys so much for your input. I think it would be easier on myself to get the PEG my husband can still make his cookies and cream shakes but I can use the PEG to make sure I get enough nutrition. I really don't have a lot of family to help with the kids. My mom is gone and so is my husband's dad. His mom works but helps when she can and the same for my aunt. I am going to discuss it with my husband. I am just worried about my youngest pulling it. He is only 14 months old.

oh and I still have 4 weeks of radiation treatment to go. I wanted to go on vacation in around 2 months but I don't know. At this point I don't even know if I will be going back to work.

hi mom

stay positive you are doing great. i was no where near this website at your stage i was far too tired and hopeless! Even the fact you are able to post messages here is testament to your strength of character. You will get back to work and things will get better.

It will take some time though and you have a hard journey to travel but you will see it through. Dont push yopurself too hard if you dont make your goals just stick in, dig deep, and the day will come when each day feels a little better than the last.
we're all thinking of you.
gordon

Dear Mom of two...
I read your post and felt I had to respond to it. Its a differnt case that I cannot eat or drink orally anymore. However, when I had just finished my radiation, my doctor advised xylocain spray.I used to spray it just befofre eating or drinking anything. It was really fantastic as it made eating or drinking really smooth - no pain and you get all the taste.
However, this is just a suggestion and I could be wrong.
Regards,
Ananth

hi mom
how well i remember the stage that you are in now.you poor lady you must feel so down and it was bad enough for me but i did not have children to look after,you must also be worn out as the radiotherapy takes it out of you.i was given some sachets of a gel but i cannot remember the name of them.they coat the blisters but i still could not eat because i had no desire too.if you can have the peg fitted then i strongly advise you to go for it.i hated people staring at me when i had the ng tube but the peg hides nicely under the clothes.i have my feed going in overnight while i am asleep so it does not interfere with my day to day life.i found at your stage that i could not manage to eat anything at all so the peg was invaluable,now i can eat a little but the peg makes sure i get enough calories and also the feed contains all the vitamins you need.good luck with your treatment and keep us informed of your progress.love shirl xxx

You poor thing! I can't imagine how difficult it must be to cope with tghis horrendous treatment while having to look after young children. I totally agree with Deb and others about getting a PEG fitted. My partner did not have one but he was very overweight when he started treatment and most of the treatment was directed to one side of his neck which means he may have had a relatively easy time of it ....'ha ha'. Even though he was able to swallow ready break and weetabix throughout, he felt so nauseous from chemo and radio that he didn't want to eat and was only taking in about 1300-1700 cals per day for about 4 weeks. He lost 2 stone during the 6.5 weeks of treatment. This made me incredibly anxious and I was constantly urging/nagging him to eat which caused quite a lot of friction although we still managed to laugh. It is terribly difficult seeing someone you love not able to eat and the fact that water made him puke meant he wasn't drinking as much as he should have been, although he found milk more manageable. A few patients seem to have had similar experiences with water.

As per energy levels and plans after treatment - He was definitely very tired for some time after and we did not really venture out and about for about 6 weeks after treatment ended. 12 weeks on, he seems very much back to normal and is eating just about everything except curries. Sleeping is a bit of a problem because of his dry mouth. Yesterday he was talking about how ill he felt at your stage in the treatment and how difficult it is to remember that now - just goes to show that although you have a way to go, you will recover and in a few months time this will probably seem like a bad dream.

I hope you can get someone to help with your children over the next few weeks or so and that you do get a PEG fitted.

Good luck we will all be thinking of you.
Cathy

Well all is good. 11 more radiation treatments to go. Still no PEG. I am eating the best I can. Had a virus last week so I had an entire day of not eating. But my dr is in aw of me. My neck is only red and most of the sores in my mouth are gone.