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Last rad day. What happens? Machine breaks. No Joke.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Good Friday has been horrible. This was the day when I was to BE DONE with all the rads, which would complete my treatment altogether. But I may need to wait until Monday.

I'm tired 'cause of chemo, so I'm going for a nap.

Best,

Mick

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Surprised they didn't just blow this last one off, Mick. The science is not so exact, I don't think, that they know exactly how many treatments, how much dosage, you need. I missed two of my 35 scheduled, in fact, and they did not extend the torture, I mean the rads.

In any event, one more day, maybe. Hang in there.

Take care,

Joe

fbcuthguy
Posts: 15
Joined: Feb 2010

Mick-
Mine broke on Monday which changed my end date from Good Friday. On Tuesday, they put me on "break" til next week to let the radiation burns heal. So, I've got 5 more to go. Glad to hear you got your PEG. Nutrition & hydration are good!

Rob

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

Sorry to hear that, I know how you feel as we all want our last treatment day to be just that our last treatment day so we can start healing. You are close Mick the finish line is only a few steps away.

Thanks care my firend

D Lewis's picture
D Lewis
Posts: 1544
Joined: Jan 2010

Hang in there, Mick. You're almost to the finish line. My thoughts are with you.

Deb

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Use the time to recover a little, Mick. I was too sick for the rads in weeks #5 and 6, had two days the rad machine was down, and it all extended my treatment awhile. Thing is, my 35 became only 34, with the last 3 rads being partials (5 places instead of 20), so they altered my treatment towards the end. Use the time and Easter to recover as best you can, Mick, then let the last of it happen. It is what you gotta do, Mick, so just go with the flow. You're almost there.

Believe

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Yea, I know a little bout it. Today was 12 straight days in a row and it feels like my head has been put in a turkey fryer. Hang in there.

Steve

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Happened to me Mick but they fixed it while I was on the table, took about two hours, it was a computer glitch. They do change the locations of the rads close to the end. the doc told me that the last 7 sessions were tumor location specific, the tumor was undetectable with 2 weeks to go but the last rads, although in not so many places, was the most intense. I came up clear at my last ct scan and MRI and videostrobe too. Next up is another video and then a pet scan in September. I finished treatment last June. Denis

handl1983
Posts: 37
Joined: Mar 2010

Hi Mick!
This also happened to my husband. We counted each day and put a slash through each one on the calendar. On his next to last day, the machine broke half way through his treatment. Not only did they give him an extra day for it- they added in 2 more to boot!! I dont think I have ever seen him so defeated!! He got through it, but it really stunk!! Hang in there Mick!!! Our thoughts and prayers are with you- been there, done that----Herb and Lori

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

I hope all goes well Mick and that Monday will be your last treatment

Take care

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

I am so sorry!!
You just want it to end when it is supposed to!
I practically had March 9 tatooed on my forehead.
Hope everything works out for you on Monday.
Congratulations
Stacey

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

WTG Mick, hopefully today was your last, either way, now that you've gone through the rest, I'm sure you can handle another day or so. I had to miss two days during mine due to the reaction with the Amifostine, so they extended me two additional days.

I can relate how glad you are to be finished. Just remember that you still have a few weeks of residual after effects, so don't let it get you down.

It can be somewhat anti-climatic in a way. You've had so much attention the last several months and now that you are finished it just seems really strange. All of a sudden no one is seeing you on a daily basis.

It takes a while to get back to your new "normal" but now you are on your way, every day is a day closer and a day past the treatments you have been enduring.

It's probably taken me close to ten months for my blood work and everything ot get back into the normal ranges, and I'm just starting to feel good and have most of my energy back that I had prior to treatment.

It's been a rough road for you and your body and takes time to flush all of that stuff out of you.

Glad that you have made it through and will keep you in my thoughts for good scans and great check-ups from here on out.

John

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

Congratulations Mick- LAST day,hope all went well..
John- when did you finish rads? Do you think the amifostine helped?
(I have nothing to compare it to--curious how you see it)

What can you eat now?
My rads were over 3/9, Had improvement for a week then plateaued with increased pain down the throat, can't see if it is thrush which somehow I have avoided...

Thanks
stacey

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Hi Stacey,

I finished last year June 18th. Like you I don't have much to compare it to since I did have the injections. I had to skip the last few though because I was getting high fevers.

I never had thrush, and I never had the thick ropey mucous I've heard of. It has taken up until a month ago maybe that I've started feeling good. I still have residual scarring or whatever I feel at times down in my throat, but all scans and scopes are clean. They said I'll have those residuals for awhile.

I have went through the really dry mouth at times, especially night and during the winter when using the heat in the house.

But, this last month or so, I can actually form saliva at will, it's clear and not white and foamy...LOL.

I can eat toast and most anything without sipping water constantly. I can eat a slice of toast with no water until I finish.

I can eat anything, just most doesn't taste as good as before or as intense, but I can taste most all flavors and definitely survive off of the taste that I have.

Some things used to lose their taste after a bite or two, that has passed. But there are things that just don't taste as good as before. I can't taste a lot of sweet things that I used to, but a few things I can, it's just trial and error, then trying again a few months later.

Anyways, I can eat anything that I want and I don't have a problem with swallowing anything. Some things do still require a washing down, but you'll figure those out.

I still have a little bottle of water with me in the car, but I don't have to have it when going into the store or other places like I once did.

Hoping you make great progress in the future also, it just takes time as I've heard on here, and now have experienced myself.

God Bless,
John

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

I hope it is all over with your last treatment being today, now comes the healing part it might be a little slow but every day you will feel a little better.

Take care my friend

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

I remember your apprehension about the treatments and all the questions you had. Now you are *****ing about the machine breaking down.(broke down on me 3 times) I mean this in a most wonderful way realizing that you are frustrated. But my God you are alive and for allintents and purposes done. Congratuations, anger can be a very useful emotion. I'm proud of you Mick!

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

In the end the rad onco said "the machine is still down and I think you've had enough". So ended my treatments. Still 6 days out from last chemo and feeling tired. The mucous is still bad and I stay u all night hacking it all out so can catch catnaps during the day.

I got a suction unit that helps clear the mouth of mucous but the stuff lining the throat is the problem. No way to get it ut other than hacking, even with the machine.

I can tell that the radiation mouth sores are better but I am too impatient. They are like 1000 paper cuts. One by itself is tolerable, but when they cluster along with the thrush make it almost intolerable.

Dr says a couple more weeks of this is likely.

Frustratingly,

Mick

D Lewis's picture
D Lewis
Posts: 1544
Joined: Jan 2010

Mick;

It is so good to hear from you. Congratulations are definitely in order. You have completed your treatments. Now, keep up the hard work healing.

Deb (Hump Day this Thursday: 2 of 3 Chemo's done, 19 of 38 Rads done)

ps: You know, I was kind of wondering exactly how you were using that suction unit to clear the mucous from your throat. Somehow, with our famous gag reflex, I couldn't picture you shoving that thing down your throat.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Mick- kinda sorry to hear your rads have ended pre-maturely. Thing is, though, I was scheduled for 35, but only went thru 31 full H&N @ 20 places/session, and it ended with 3 more partials @ only 5 places/session. So, they did adjust my rads so that I got less than I was originally supposed to get.

Glad to hear it's over, Mick. Will still take awhile, but keep a positive outlook and the recovery will happen. I tell y'all I returned to work a month after my last rad, which I did in fact do, but I was still on an Ensure diet. Does take awhile. Be patient. The worst is over, my friend.

kcass

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

Glad treatment is over for you!!
Stacey

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Kent. That's the problem. Even with the PEG I'm still losing a but of weight, but not as much as I was. Swallowing is almost there, but right now all feeding/drinking is with the PEG. I am depressed and I look for change daily and it just doesn't happen, so it's a bit of a cycle. I don't sleep well at night due to the mucus so I tend to cay nap during the day.

I am so skinny! I am sure I have lost muscle mass. Also with the depression I have thoughts of "do I still have cancer?" This is crazy making. living moment-to-moment is very hard and I feel so isolated from my family and friends. All I an do is spit, gag, hack, eat with the PEG, and sleep.

A good friend stopped by today and all I could do was weep when I saw him. He said, "I promise it wont be like this for very much longer." Man, this is hard.

Mick

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

H Mick,

Glad your out and also I feel the s#@t you are going through. I found Fliuimucil to help break up the mucus. Also the Anti-depression meds will give you a solid sleep (Remeron, Rivotril Seroquel ++). Your Doctor will know.

This is probably the worst of it you are in now, and it will be a s slow climb out but hang there man, you will get through this and look back from a much better place.

Scam

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Just keep hangin Mick, you're through the worst of it. It's just gonna stick with you for a few more weeks, but more than likely not get any worse than you've endured the last few weeks already. The good thing is that you aren't getting zapped any more. So now you are actually healing, your brain just doesn't know it yet. Even though our body is healing, it takes a lot out of you for that healing to progress.

Soon you'll start feeling a little less pain each day. Eventually you'll start feeling a little better, but it's just a slow process. Everyone here that's been where you are now has gone through the same similar pain, anxiety, frustration and impatient feelings. Unfortunately like the rest of the road you have just traveled, only time will resolve it, there are no short cuts.

I can only offer to stay positive, keep focused and realize that you and your body have just went through a battle, time to heal now.

John

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

I know they are all variations on a theme, but it is true.
I am just a month ahead of you, mucous is much better. Even just "a pinch" a medical term to be sure, of antidepressants may be helpful.
I am not patient either and have not made as much progress as I would have liked.
My throat is still really sore, but taste has improved quite a bit.
Hang in there, get some sleep if you can.
Is it spring like where you live..That could be helpful.
Stacey

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Stacey, I responded to your questions a few entries above.

Speaking of Spring, all of this Oak pollen is playing havoc on my sinus and head. Headaches, hoarsenss, stuffy...can't wait until my black truck doesn't have a yellow crust of pollen on it every morning.

Mick, I had Percocets that I'd crush up in a little water. They seemed to knock the edge off of any pain that I had. I also usually would crush one up before bed and it helped me to get at least a few solid hours of sleep.

Even before this ordeal I was lucky to sleep more than 5 - 6 hours uninterrupted. Sometime during treatment and even now, I'm lucky to sleep 2 hours straight. I'm usually up if nothing else to take a sip of water and go to the rest room from the water that I drink during the day/night.

I need a lot less water as for sips throughout the day than previously, but I still drink a lot of water flushing my system and staying hydrated.

Anyways, like I said, when I was having so much pain during the period you are in right now Mick, the Percocets helped me knock the edge off of the pain for a few hours usually.

John

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi John. Thanks for the advice. Ativan work for me for sleep, but I don't take it every night, maybe I should.

Best,

Mick

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Mick, I think sleep is a big ingredient. I've been sleeping well because I've worked with my doc to take what I need to get me there. My schedule is a mess, stay up late, but I get about 8 hours before I'm through. I take a time-release Ambien, and two ativan when I go to bed, again, this is with the doctor's understanding, may not be the correct combo for you. If I wake up five or six hours later, I take one more ambien and go back to sleep. I think getting enough sleep helps with the depression also . . . at least I don't get depressed when I'm asleep. Too, you're throat is going to start feeling better, less and less paper cuts, and that too was a big help for me in terms of feeling less bummed and sleeping easier.

best, Hal

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Just read an article yesterday on how there is virtually no platform in place for care of cancer survivors written by a clinical Doctor who found this to her horror upon completing treatment for breast cancer. I think it was in the Livestrong newsletter yesterday. If you have a hip replacement there is tons of rehab, not for us. The cancer mantra is seek and you shall find. Be silent and you will suffer.

Mick If I remember right you are some sort of a therapist. So now is the time to heal thy self. The doctors have done what they do. Now you must advocate for whatever addtional care you need. If' its depression then ask for medication and please make an appointment with an oncology pyychologist. If its lymphedema then seek out a massage therapist. If it's a nutrition issue then get hooked up with a nutritionist. Swallowing, hearing, dental, whatever it is, you must now take the lead. Now is the time to be vocal about any isuue that comes up. There is a whole line of cancer patients behind you. Soon you will be just one more who went through treatment.

Lastly, our bodies get better in increments of months and years not days and weeks. It is very frustrating and can cause much depression. Every thing you are experiencing is perfectly normal. The phrase you will learn to hate and later appreciate is, "The new Normal"

I want you just to make it to your next follow-up appointment because after that things will get better. Moving forward with extreme uncertainty will be the hardest thing you have ever done, one foot in front of the other, one bump in the road at a time my friend. As the new "Spring" rises out of the grips of winter because the winter must let go, you will rise out of the grips of "Cancer" because it too must let go! Standing still for a time is "OK" but no backward progress and eventually only Forward is permitted!

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Wish we could post links here, but in the interim:

Julie Silver shares her story, about how she survived cancer and then survived treatment.

My then 3-year old daughter told me, "Mommy, you don't look pretty anymore." She was right. I was 38 years old and in the middle of chemotherapy for breast cancer. I didn't have any hair, including eyebrows and eyelashes. My skin had lost its usual coloring. I was in pain much of the time, and it showed on my face and in the way that I carried myself.

My daughter's six words were more than about beauty, though. They told the story of a child whose mother was gravely ill—fighting for her life and becoming sicker and sicker by the treatments designed to help her live.

"I'm a physician, and I knew I had to heal myself before I could heal others."

When I was finished with the acute cancer treatment, my wonderful oncologist encouraged me to go back to work. I'm a physician, and I knew I had to heal myself before I could heal others. It wasn't yet time for me to return to work. As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest.

It wasn't until I was the patient that I realized that oncology rehab barely existed at all. At the time, I was too sick to do anything about it, but I made a pledge that when I was well enough, I would help other cancer survivors heal as well as possible. I would take the words that are so often told to cancer survivors "you need to accept a new normal" and encourage them to not accept a new normal too soon. Instead I would encourage them to insist on receiving well-coordinated oncology rehabilitation care, and to heal as well as possible—whether their cancer was cured, in remission or they are living with cancer as a chronic condition.

"As a rehabilitation doctor, I realized that I needed the kind of rehab that is offered to many people who face serious injuries and illnesses like stroke or cardiac arrest."

I began by looking at the research in cancer rehabilitation, and wrote a book for survivors called After Cancer Treatment: Heal Faster, Better, Stronger(Johns Hopkins Press). Next, I began to educate my healthcare colleagues about the need for oncology rehabilitation to become the new "standard of care." I gave medical talks at Grand Rounds in hospitals all over the United States, wrote articles in medical journals and took every opportunity to share the many stories of cancer survivors who were suffering far more than they needed to.

One story I like to tell is about the woman who approached me at a community cancer event in the Ozarks. She handed me a picture of herself that was taken after her final chemotherapy treatment. In the photo, she is bald and wearing a pink graduation cap and gown that she made to celebrate the end of her cancer therapy. This woman said to me, "I graduated more than one year ago, and I still don't feel well. I don't know what to do. How can I heal?"

I had trouble finding anyone in healthcare, or in the cancer survivorship community, that encouraged cancer survivors to find ways heal on their own. But when I compared groups, such as the six million stroke survivors in the United States, most of whom will receive some rehabilitation if they have impairments, to the more than 12 million cancer survivors who are generally left to their own devices to heal, people instantaneously understood that we need to address this major deficit in the cancer care continuum.

But understanding the need and addressing it are two different things. There are many barriers to overcome when it comes to insuring that cancer survivors receive the kind of comprehensive and well-integrated rehabilitation services that so many others who are ill or injured receive. There are few healthcare providers who have had sufficient training and experience in oncology rehabilitation medicine, and while insurance companies generally reimburse for this care, rehabilitation professionals typically don't have much experience with how to code and bill for office or therapy visits.

So, the next step was finding a fast and effective way to train healthcare providers in how to provide oncology rehabilitation services. To do this, I founded a company called Oncology Rehab Partners. The goal of this company is to advance survivorship care by training healthcare providers in how to deliver comprehensive oncology rehabilitation services. Hospitals can utilize existing resources (including clinical personnel) and quickly and expertly develop a STAR (survivorship training and rehabilitation) program. With online training that complements their extensive clinical care experience, physicians/physician assistants, oncology nurses/nurse practitioners and physical/occupational/speech therapists can all become STAR Clinician Certified once they've taken a comprehensive course and demonstrated competence by passing a series of tests.

My daughter is now 10 years old. Her memories of my cancer have faded. If she sees an old photograph of me during treatment, she sometimes will ask, "Mom, who is that?" My response, "That is a woman who refused to accept a new normal before healing as well as possible."

Julie Silver, MD is an assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation. She is the author of many award-winning books including What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (American Cancer Society). Dr. Silver is the founder of Oncology Rehab Partners, a healthcare company dedicated to advancing survivorship care with oncology rehabilitation.
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Fire34
Posts: 353
Joined: Feb 2010

Mick
I was also glad mine was over. I was about like you for at least the first month. sleepless nights, the ambien helped a little. The worst for me was the dry mouth/mucous. I used the salt/baking soda combo which helped. I had my body clock mixed up for that first month if not longer and napped during the day like you. I also lost a lot of muscle mass and have worked my rear off to try and get some back. I do not know if the weight I lost(30 lbs) I want to gain it all back. Hang in there as others have said, it will get better. Best Wishes
Dave

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

We all know how frustrating it can be, Mick. My recovery was quick, in comparison to most, but even with me it did take some time. The Vicodin did help in more ways than just the pain, Mick. I consider myself lucky in regards to my recovery. Took me several months to start gaining my weight back, which was fulfilled some 8-months after the last rad. You gotta keep the calorie intake happening: you got the PEG, so use it. I even supplemented with a 4.0 Jevity when I had graduated to an Ensure diet, post-treatment. Find what you need to keep the nutritional input going. My first food was pancakes w/Log Cabin, and lots of cold butter. Just cause the major part of the battle is over- does not mean the battle is over. Your body is still dealing with it all, and that's gonna continue for awhile. The best you can do is the good-calorie thing.

As for the other thing- we all have to deal with it. Hits every one of us. For me, knowing what I been thru, and what the others I come into contact have not had to go thru= kinda gives me an attitude of, shall we say, greater strength. Everyone you come into contact with has had life easier than you over the past year, Mick. They're living on fat easy-street. You, like we all have been, are a soldier returning from front-line battle with an enemy more ominous than just some punk kid with a gun that's hoping to get lucky with a shot. That punk kid did get lucky, and you took a major hit, but you were still able to fight back and send the kid and his buddies running for the hills. You're a war hero, Mick, as are we all. Of course, that punk kid is really the Spectre in disguise, and far from a punk kid. We all know that, and that's what makes the battle all the more important to win. I'm 17-months, but the dark clouds are still within view out on the periphery. Takes awhile for the dust of battle to settle, Mick, and I'm not sure it ever will. But, for you- know that at your stage the C is reeling from taking a major hit from you and your med team. The C is on the canvas, and might be down for a count that lasts for years. It ain't gotta hope of getting back up to resume the fight until the count of- what? That's the question we all face, Mick. Hawvet and Hondo, and Janymac, Jim and Joe, and ratface- they are proof that the ref's gonna be heard to say the number "7," and be thinking in terms of years. The C's taken a major hit, Mick. At best, it's an insignificant couple of cells still within you. Too soon for the C to be anything but that. The task at hand is not the C- it's the treatment recovery, which is all up to you. It's entirely your game, now. The Drs. take backstage to you, now. You've survived what they, and the C, did to you. It's time to heal. Will take time, but it will happen if you let it, as you will.

Your experience has been good for all of us.

Believe

kcass

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I dont think I have read anything in a long time, regarding the "C" or the experience,
that portrayed it as vividly accurate for you all as you just did Kent. Even those of us who havent been drafted in this war of wars could get a significant understanding of your analogy and be encouraged for you.

thank you.........

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I just read about this Dr. and ordered her book
Super Healing. Im interested in what she has to
say. Im so glad that someone has started the ball
rolling on a specific protocol for the after effects
or rehab of the cancer patient.

thanks for posting!!

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