Well, as I am laying down in bed so tired from the stinking radaition it just hit me. I am not going to wake up from this nightmare. I feel like such a cry baby. I do not know how i am going to handle all this. The mucuos is horrible and I do not want to eat anything, but I know i need to. I am cold all the time. I HATE THIS STUFF!!!!!

Angelia,

Please keep in mind that this is not for the rest of your life but really a very short 7 week period of discomfort. You can do it. You must do it. You do need to force yourself to eat and drink each and every day as you will only make matters much much worse if you don't. Ninety percent of us on this website went thru concurrent chemo/rad and we were not/are not super humans. We all felt like crap and we all bitched but looking back it's just a distant memory. I have always said that the mental aspect of our cancer is half the battle so don't give in to the dark side so to speak.

Oh BTW WE ALL HATED THIS STUFF. lol

Angalia,

You can make it. I came home every day and lay down until I had enough sleep. You will wake up from this and you will feel much better but you have a rough road ahead.

I am now 5 1/2 weeks out of treatment and feeling much better. I still have issues, but I�m much better now.

I have an electric blanket to keep me warm and a bottle of water at my side while I watch my son sledding out front in the first snow of the year.

Kelly

Angelia, I feel bad that you are already having a hard time. David is right, we all hate it. I wish I could trade places with you. Looking back, yes it was awful. But it is something that right now should be relatively easy. Its worth a few bad weeks to have a lifetime.

Radiation accumulates in your body. It will unfortunately get progressively worse. At this point, since you are still able to eat, enjoy it. Most of us started feeling the effects after about the 4 or 5 week mark.

Im sorry that you feel so bad already. Time to get that positive thinking going!!!! Believe it or not, thats what keeps me going. Take it day by day.

I will keep saying my prayers for you.

Angelia,

I've shared this once before, however I don't do it often as I have a reputation to uphold and I can't have people questioning my badassness.

Before cancer I was this athletic, muscular guy that enjoyed wrestling/grappling, kajukenbo, boxing etc...and in these sports you have to develop an increased mental fortitude to block out pain and push through exhaustion to be successful. Even through all of my bravado and the mental image of myself, I still sat at the end of my bed crying because i didn't want to finish my last week of radiaiton and final round of chemo.

Dear, it's natural to feel this way, trust me when I say that you can get through it. One day, one treatment, one breath at a time.

Keep your head in the game, you can do this.

Eric

You guys are always awesome. I know that it is just a short time in all life. The past few days I did have a positive attitude, but today has not been one of those days. I will joining my family for dinner and will make myself eat, but I do not want to get out of bed. Did any of you have to take antidepressants? I often think about asking the Dr. for them, but I am already taking so much meds that I hate to get more. I know that I can vent here and you all know what I am going through because you have been there. Thanks.

Angelia

It's hard indeed. sometimes we get so tired and its seems so hard, that in the dark recesses of our mind, we wonder if it is even worth it to keep living. But then the realization that yes, life is worth it, our family wants us, and that giving up is not optimal creeps back. Hang in there and vent all you want here.
Charm

Angelia,

Many on these boards have used or recommend antidepressants. Some people don't. I'm of the mentality that you should use anything necessary to keep you into the fight.

heck if you were in a state for it I'd say use medicinal marijuanna, vaporized of course to avoid releasing carcinogens. MJ has been known to raise spirits, increase appetite, settle nausea, decrease anxiety and of course the pain management.

Do whatever you need to do to get yourself mentally in this fight, be it liquid courage or anything else for that matter.

Good luck girl, keep your chin up

Eric

Angelia,

I hated IT also, but got through using these three rules:
1. Take one day at a time
2. I was not going to feel like this forever
3. Do what needs to be done to get through

I tried to not to think of what I was going through, I know it is hard, but you will make it, we all did!

You are in my prayers!

WFC

Angelia....try not to think of the end yet just take it one day at time. You are strong and a positive person and it's ok to not feel positive all the time...it's human. As far as an antidepressant I would ask about it. I take them and am currently weening off with no problems. When I started them it made a HUGE difference. I would definitly ask about them. If it makes this journey easier for you that is important.

When you feel this way look at your adorable children and husband and remember you have a reason to fight. I'm sure that will give you the push you need:)

Hi Angelia,
Sorry you feels so down. This is the worst treatment. Everyone has given you some great ideas, I can only echo them. I was realy against taking pain meds ( in my old hippi days I would have jumped at the chance!) I did start taking morphine , maybe in my 4th week, maybe 5th. It did help, stopprd the pain, helped me sleep. I was affraid it would be difficult to stop and I would get hooked. By the end of treatment I had both fental patches and morephine.It only took about a month to get off the drugs and I honestly can say needed them. The two biggest side effects were I could not read, too spacey and got quite constipated.

Hang in there, we are all pulling for you

Steve

Re the medical pot. I was given some Marinol (sp?) which I was told was pot in a pill. $20 each BTW. I was excited even though I felt like crap. I thought OK a little buzz, the munchies, the feel good, that's just what I needed!!! WRONG....they did none of those things so if they offer it to you say NO THANKS unless they give you some freebies to try first.

David,

Marinol is synthetic thc, not medical marijuana...totally different. It's like asking for real mayo and getting miracle whip...yuck

I didn't need any antidepressants but I did take a lot of pain meds. When I was in the hospital for 9 or 10 days for severe dehydration the morphine was a welcoming friend. When I first went in the hospital and they asked me how my pain was from 1 to 10--I would say 4 or 5, in no time, I learned 9's worked well for me...LOL.

Hi Angelia,
I think the depression is very normal for what we have to go through with this lousy cancer. I, too, became very depressed and am still taking antidepressants and anti-anxiety meds, they are SO helpful and nothing to be ashamed of! Please ask for what you need, both in terms of the depression and the pain - I don't think I could have made it without the narcotics, I am so thankful I was "doped up" for much of the treatment!

Chin up, you can do it?
Lucinda

DavidCPA

I'm with EricS on this. Marinol is a pathetic substitute for medical marijuana. Of course smoking is veboten for us oral cancer patients, but the Volcano vaporizer is one alternative albeit controversial. As a full disclaimer, I have to share that when my little brother was dying of AIDS related illness, medical marijuana at San Francisco General Hospital, it made a major difference in the quality of his final two weeks of life. It was such an astonishing difference for someone I loved that I cannot be objective in my evaluation.
Not that Angelia needs this, but I am struck about how all cancer forums tiptoe around this issue.
charm

Oops, meant to hit !, not ?

Chin up!! You can do it!!

I know I can do this. Here is it 3:00 AM and I woke up this morning to horrible throat pain. I have only had one week of treatment. This is not sounding very well. It hurts to swallow and just plain hurts. It happened overnight also. Anyway, I thanks for all your encouragment. I see my Dr. on Tuesday so I think I will be asking for some pain meds. I do have darvocet, but I want something stronger so I can sleep through this whole thing.

Angelia

Welcome to the early early early bird club. I had almost forgotten how I would wake up every night during TX between 1 or 4 am to take more Pain medicine. Even after TX, rather than toss & turn in bed, I'd just get up to read or else write in my journal for a couple of hours, then try and sleep on the couch.
It was a milestone of recovery when I could sleep thru the night. Too bad, I had not discovered OCF the first time around. When the cancer came back, and the difficulty in sleeping returned (this time from choking on mucous), at least I could post on OCF those pre dawn hours.
You can do this, we all have and there's no reason why you won't also. Still it is so hard, but trust us, it does pass.
charm

Yes Angelia,

the early morning club or for me the never sleep club. One of many side effects of pain medication is restlessness and insomnia, more prominent as your tolerance grows as well. Usually I'd see Charm, Cookey and I online...good company really. If you are still feeling quite a bit of pain you may want to ask your dr for other options, fentanyl being the strongest.

Charm you did make a good point in the fact that most posters on this site tip toe around the medical marijuana options. I don't understand the taboo anymore really. I never did illegal drugs or drink in school due to athletics and even after competing was over for me I stuck to alcohol and had a negative view of marijuana.

Even a year after diagnosed with stage 4 cancer and all the way through tx and surgery I'd declined to try it, mostly out of ignorance yet I'd never "smoked" anyhing before and certainly wasn't going to start. Then my oldest brother, a chronic pain patient, introduced me to a vaporizer.

I had left my breakthrough meds at home and was experiencing pain and nausea...low and behold the vaporized "authentic" thc (not the marinol crap)eased my pain, settled my stomach, put me in a good mood, made me sleepy and extremely hungry. Um hello? Why the hell wasn't I allowed to have this during rads/chemo?

A drug, whose side effects are a blessing for cancer patients? Surely not!?! I've joined MPP.org (marijuana policy project) to help push medical marijuana laws in my state. I find it funny that our Dr's can push heavy opiods, benzo's, anti-anxiety/antidepressants, Ambien and a slew of other drugs with nasty side effects, yet vaporized (no carcinogens) marijuana is taboo. Blows me away.

Angelia, ask for the antidepressants. You are going through a tough ordeal/nightmare and you need all the help you can get. They won't make you dance but can help take the edge off and maybe give you a little more energy to deal with this. Unfortunately, they don't work right away.
Also, ask about ativan to take the edge off the anxiety. Small doses work wonders.
One day at a time and just keep looking at your little boys.
Nancy

You guys are so amazing. As I sit crying my eyes out cause I feel like crap, you can still make me smile. My husband and my little boys are what keep me going. I do not to tell you all a funny about my 5 year old. We were at church last Wednesday night and I went to pick up the boys from their Bible Study and Andrew yelled as loud as he could "My mommy has a tube in her belly." I still smile when I think about that. They are so innocent and young I love them to pieces. I think what hurts the most is knowing that these boys are going to have to watch mommy go through this.

Angelia,
I would think that darvocet is not nearly strong enough for the kind of throat pain caused by radiation. I was put on a fentanyl patch and stayed on fentanyl patches for a while even after radiation was over. There is no need to sit around in pain and I suggest that you speak to your doctors about it.
Also, I know that you have heard it before, but, for me, once I could no longer swallow, the feeding tube was a lifesaver.

I became very depressed once the radiation treatments ended, not during them when I was busy going to the hospital twice a day.
The social worker at MDACC turned me on to free cancer counseling offered by a local group called Cancer Cares. I met with a psychologist only once, but the social worker also recommended a men's cancer support group, which I attended once a week for a while. (Unfortunately, most men's group seem to be populated by mostly prostate cancer guys and most women's groups consist of mostly breast cancer patients, but it still was comforting even though no one else had the same issues as I : swallowing.)
Anyway, as time passed by and I started taking a nice 2 mile walk every day and keeping a little busy by running a couple of errands every day or stopping by the office, and in a couple of weeks, my outlook started to really improve. Once you can see a little light and realize that you really do have a future, things get sunnier. I did not take anti-depressants but I would have taken them in a second if I thought that I needed them.
I wish that the medical marijuana movement had progressed more when I was in treatment in 2002...I would have been all over it.

Take care and good luck.

Danny G.

Angelia,

I've found that my boys, 5 & 9, who were 3 & 7 when I was diagnosed, have been extremely resiliant. My oldest, who is naturally more sensative then my youngest, did have a hard time with the diagnosis.

A year before I was diagnosed, his great grandma, who he was very close to, died of cancer. The hardest thing I've ever done was tell him I had cancer. I looked across from his big brown eyes, filled with tears as he said, "Daddy, I don't want you to die!"

We got him into counceling and have been very upfront and honest with him through the whole process. In fact, last week when I got back home from another facial surgery, fresh with nasty scars and swelling, he looked at me and said "Dad, you are so brave. I'm proud of you." What a kid.

As I've said before, use it to see you through the really tough times, and if you need a little chemical assistance, don't you dare feel bad about it. Do what you need to do for you to get through this.

Eric

WOW, our stories could almost match. My boys are 7 and 5. About one year before my initial diagnosis their great grandmother also died of cancer. I do not believe I ever told the boys that she had cancer, but did tell them that she was sick. My 7 year old is doing better, but has been internalizing everything. My 5 year old just loves life, and not much ever phases him.
Eric, I tried to send you a PM, but it said you were not accepting them.

Angelia....I know what you mean about crying and the people here making you smile. And man...being up that early/late however you look at it really stinks. I was up all night on Thursday and it was terrible. Lucky for me WendyG was on because she is on the other side of the world!! We will be here everyday, every moment you need something. There are tons of people here who care about you and are rooting for you.

I'm sorry your throat hurts...are you still swallowing? I know that is important. I always found the pain meds put me to sleep. I could sleep FOREVER. I think I slept for a month straight after my last surgery...lol Ask your doc about different meds until something works for you. I would imagine you can't see a therapist during treatment...just too much talking. However, I highly suggest looking into in after your treatment. I can't tell you how much it helped me. I'm actually going back to mine b/c I've been having some depression issues too. Always remember you are not alone in this.

I love the story about your son....kids are so funny. They just say what they are thinking and he thinks your PEG is cool!! I'm sure that will stay in your memory bank:)

I'm all for medical marijuana. It's probably one of the best drugs out there and I think since they are starting to use it in the medical community hopefully we will start seeing more of it.

Charm...I'm sorry to hear about your brother...that is sad. I'm happy they made him comfortable.

Suzanne,
I do see a psychologist, been seeing one since June. If nothing else it is nice to have someone to talk to on a weekly basis that is on the outside of the whole situation and can help me make sense of it all.

Howdy all,

I'm ending week six tomorrow. My last IMRT tx is Dec 15th. I sleep okay, have mild/moderate fatigue, I haven't used any pain meds yet (percocet and Magic mouthwash). I've lost about 10 pounds since the start (at 178 now) although I think it's mostly muscle shrinkage as I still have a little bit of a pouch.

I have really forced myself (stubborn german that I am) to stay hydrated and Carnation VHC fed. I've also kept my mouth very clean, brushing often, fluoride trays, VERY CAREFUL floss every few days, salt/baking soda water gargle 3-5 times a day which helps my throat when it starts barking at me.

I make myself walk every day for about 20-30 minutes. Before each Rad tx (this is where I go off the reservation) I was slowly eating organic honey and sloshing it around my mouth 15 min before and after radiation. This until the 4th week when the honey stung my throat so bad it brought me shaking to my knees.

Also picked up zen meditation although I am still only working on observing my breathing (concentration technique).

I'm posting this for two reasons:

1) A statistical data point. Maybe this provides insight or a clue for others. I went to a 2nd opinion Otolaryngologist in DC and she was shocked at how well I was handling tx. She reassured me--looking at the rad marks on my head and neck--that the treatment field looks great.

I asked her is it something that I was doing that maybe others can learn from, she said "Quite frankly, no, it's luck." I'm posting what I've done anyway in case it helps others.

2) So that new C-fighters who are reviewing these posts can know that they may not necessarily have too horrible a time.

DavidCPA was invaluable in letting me know that about 20% of people going through tx may not suffer too badly. Thanks to him, I DID brace myself for the worst. I also determined to try to do everything to make the crapstorm hit me as late in tx as possible.

Not that it's a picnic. I DO have mucositis back near the R tonsil area. No taste sense, sore neck, skin peeling on my neck a little, church bell sized tinitis in my ears, partial (very high-end as of now) hearing loss.

I hope this helps in some way.

That's good to hear Angelia...I'm happy you have someone to talk to:)

Howdy Joel

I'm with your ENT that you were lucky. Good for you. It is important that posters see the wide spectrum of suffering from Cancer TX, ranging from annoying to devastating. Expecting the BEST but preparing for the WORST is a good strategy. Congratulations on your progress.
PS. I couldn't help but notice you opted for the PEG three weeks into treatment, so that indicates to me that it could not have been as easy as it sounds. I'd say more but that's a sensitive subject here on OCF.
Charm

Joel,

Sounds GREAT and lets hope the next month goes as well. It doesn't even sound like you found the tunnel most of us struggle through. You must have had a better guide than we did. Keep up the good work.

Charm,
When I was on Cisplatin I was told the best time to get a PEG in would be the middle of the third week. Any later and it could be complicated. I opted to have it put in right then as I was expecting the tough road to hit that next week (week four). I used the PEG out of curiosity just into the fifth week.

Although I want to think it was all the due diligence that made things easier (hoping that there was a way for all by following some process), I trust my doctor(s) when they just shake their head and say it's just luck.

And you're right too, in that if David hadn't prepared me for planning on the worst case scenario (and given me info one what I'd be experiencing-dry mouth, lost taste etc.), this would have been much MUCH more stressful as things started happening.

Still, I wish some way could be found that could help EVERYONE going through this to be able to get through it easier. It's just frustrating to think that Tx hasn't really changed in 20 years.

I feel like my doctors at Kaiser just treat the patients as cars in a drive-thru.

Joel

As for wishing there was a way to help everyone going thru TX to get through it easier, SO SAY WE ALL. You might find this draft OCF document worthwhile reading: OCF: Getting thru it to appreciate just how lucky you have been. Sounds like you will be in the Holiday spirit. Thanks for reminding me that it's not always so difficult for everyone as we see a lot of worst case scenarios here.
I was lucky also to be able to continue to work full time during my entire first TX due to a secure laptop, a virtual private network for email, Blackbery, home fax, and phone conferences.
I scheduled all my radiation TX for close of business. It really helped financially as well as emotionally.

My God Charm,

You are a true warrior! I can't believe how much strength you had going through the first Tx (and even more so after). Your courage has really helped me to get through this so far.

I don't know HOW you were able to focus through the Tx.

I looked at the document over a month ago however I was so overwhelmed with documents from my MO, ENT and RO, and books from friends that I only skimmed it. I'm going to go through it again as I need to think about life after Tx.

Joel

Thank you for the kind words. It is a good point that the worse does not necessarily need to happen. If this next month has you still so strong, consider opening your own thread: maybe entitled: It hit me not so much or something like that to give hope to the newbies. I feel a little guilty hijacking Angelia's thread like this but it is important to give the OCF newbies HOPE. Sandy St also sailed through her radiation and I think that your message is a valuable one for people to hear.
Charm

Don't feel bad about hijakcing my thread. If that is the worst that is done, so be it. I am actually doing a little better emotionally right now. I felt really good this past weekend, and was doing well up until today. I can not wait for the weekend to get another little bit of a break. I do know everyone's experience is different. When I was talking about it hitting me, I was talking about the emotions of having cancer, not the treatment itself.

I'm so glad to hear that the past weekend was good for you.

I found that having things to look forward to was very helpful for me in looking past the day-to-day. For example, each weekend I look forward to heading to my girlfriend's house. Without knowing I have weekends coming with her, I'd be down in the dumps.

I'm also so glad for you that you have your two charming boys and husband. Revel in their love and care for you.

Also, even though others have said it, it's true. I'm only a rookie among these fine people here but we do root for you (and each other) to have the best of luck!

I read an old proverb, maybe from here, that said:
"Joy shared is joy doubled. Trouble shared is trouble halved."

The weather here is so darn cold and this time of year is always hard. Would be surprised if you weren't feeling something.

A day at a time is all we can do and the Drs should help you get through the rough patches. Lte them know about the bad days.

"The squeeky wheel gets the grease"
Sometimes we try to hard not to squeek.

Margaret

I will be squeaking today. Woke up this morning and my throat hurts something terrible. Hurts to swallow, and my head hurts.

So glad to hear you are feeling a bit better Angelia. Steve and I also loved the weekends during his tx. Gave us a break, a rest and some time to just spend together. Enjoy your time with your family because that will become the most precious thing of all. Steve was also another one that got through tx pretty good. If it wasn't for his peg problems that is. It still wasn't an easy road by far but much better than we or his doctor's expected. Keep smiling girl and stay positive.

Wendy

I think my better days are over. It did not last long. I did get to go to a Christmas party last night and was able to eat some. I awoke this morning to horrible throat pain and head pain. UGH

It often seems like 1 step forward and 10 steps back but you will get there in the end. I hope your treatment goes as fast as Steve's did. Seemed like no time to get to half way and then from there it went really fast. We set up a calendar of the days and would mark them off after tx each day. Our first goal was half way and it was all coloured and big lettering so it was noticeable. Thinking of you Angelia.

Angelia,
I hope that you have a great weekend (all things considered)! I also found (and still do find) myself thankful for the respite.

Joel

Hi Angelia...Just wanted to you know I'm still thinking about you. I've been sick as a dog and have been off for a couple of days.

Glad to hear you made it to a Christmas party...I hope you had fun. I always felt better when I was around other people. It made me remember there are other things going on in the world and that helped.

Angelia, I bet you were doing things at the party that your body isn't used to doing anymore. I hope witrhin a couple of days you are back to the happy lady that went to the party. Good Luck mam. Jim

I have had a rough day, but I am doing okay. I skipped out on church this morning because I had family in town. I am now wishing i would have gone. I am going to get through this, and hopefully with flying colors.

You will get through this!!! Time.... Keeping you in my thoughts and prayers. Take care.

Nancy T