Any suggestions to help me get through this? Encouraging words?

RogerRN43 · November 2011

It's the calm before the storm.
I've done 9 rads out of 35. My next Cisplatin is next Wed, hopefully no hiccups this time, will be on Zantac and Lorgactyl on top of the usual anti-nausea cocktail the first 3 days.

I'm losing my taste and trying to eat is a chore, but I do it, and I'm drinking supplements in between and running a can through the tube for practice every day, trying to bulk up a bit if you will before I may very well be using the tube exclusively, though I'll do my very best to swallow throughout.

I have visions of heavy mucus, sleepless nights, mouth sores, swallowing difficulties, throat shutting down, as rads move on. I feel so so far away from tasting and eating again, months and months from now, the uncertainty of how long I'll need my stomach tube, whether it might be permanent, whether I'll need throat dilations. Of course my primary concern is melting away the 2 small grape size nodes in my left neck and eradicating all of this nonsense. The nodes have always bugged me. I finally asked my Nurse Practitioner today who is always on the latest, and she told me the risk of "spillage" and releasing cells is why the research today indicates neck dissections should not occur before chemorad, and she thinks the chemorad will more than likely dissolve the nodes down to nothing but maybe some scar tissue. Then a more minor dissection post is an if.

I was feeling pretty crappy after my tonsillectomy a month ago, could barely eat from pain, no chemorad start date at the time, sleeping lots and staying in bed, thought I might be depressed, was given an anti-depressant. I took it for 3 days and stopped, didn't like what I was reading for side effects and thought I was starting to get them, probably power of suggestion, nothing else. Funny thing is, I am not having clinical signs of depression since then, not for several weeks. I'm basically upbeat, positive, I am fixing things around the house, going out to see friends, spending quality time with my family, keeping busy, etc. (took apart my dryer today, need a new thermal fuse... saved a repairman coming!).

But those visions I mentioned above are like vultures circling above my head.

What do I do? Deal with it as it comes? They seem inevitable consequences as rad moves on. I guess I'm mildly scared and apprehensive about it and next spring can't come any faster. I don't even know how I'll be then.

I must say, with every uncertainty, as I experience it, it's not as bad as I thought it would be, but surely I won't feel that way with every obstacle I surpass? Or will I?

How did you it? How did you survive through treatment and recovery?

Sorry, that was a long read.

sweetblood22 · November 2011

Sometimes, i don't know how i did it.
You asked, "What do I do? Deal with it as it comes?" Yes, that is exactly what you should do. You are very prepared. I know I wasn't, and that made it a bit harder for me in some respects.

I just managed to put one foot in front of the other and plow through somehow. I don't know how, to be honest. It was hard with no care giver. Especially when I was very ill. But, I did it, and if I can get through that, you can too!

Lean on friends and family when you need to. Lean on us and vent, when you need to. If you are a person of faith, lean on your religion or spirituality, and if you think you cannot take one more step, take two, just to show 'em you still are fiesty.

Deal with it as it comes, because, it might not even come.

You can do this, Roger!

Hal61 · November 2011

sweetblood22 said:
Sometimes, i don't know how i did it.
You asked, "What do I do? Deal with it as it comes?" Yes, that is exactly what you should do. You are very prepared. I know I wasn't, and that made it a bit harder for me in some respects.

I just managed to put one foot in front of the other and plow through somehow. I don't know how, to be honest. It was hard with no care giver. Especially when I was very ill. But, I did it, and if I can get through that, you can too!

Lean on friends and family when you need to. Lean on us and vent, when you need to. If you are a person of faith, lean on your religion or spirituality, and if you think you cannot take one more step, take two, just to show 'em you still are fiesty.

Deal with it as it comes, because, it might not even come.

You can do this, Roger!

Right Sweet
So true Sweet. I didn't have all the complicatios I read posted on the board, most people don't. Didn't have mouth sores or peeling skin. No use getting amped up for things that don't happen.

Hal

Hal61 · November 2011

Sounds about right
Hi Roger, you'll do fine. You can't really prepare ahead of time for it, exactly, and that causes a lot of anxiety for folks who are good planners. You're just getting into the meat of the issue. I did most of my care on my own, because I live alone and don't have family near. A great lady friend went with me on a few occasions, but mainly I was happy enough not to have anyhone around to complain to. I had 35 rads and Cisplatin three times, and a lot of those days and nights were like an out-of-body experience for me, like I was hardly there--painkillers are partly to blame for that mystical time.

I remember watching the awesome mucous pour forever into the drain in my kitchen at 4 in the morning. For me, it just got too weird to worry about a good part of the time, and that was good thing. Others have other ways, but for me a lot of it was Twilight Zone time. I was on the tube for several months. Just keep drinking water every day. I never lost the ability to swallow.

best to you, Hal

NJR · November 2011

How to deal
I will tell you the single most important thing that I learned from a very bad Cisplatin/Radiation course. Never, Ever, under any circumstance let the pain get ahead of your pain meds and never let yourself get dehydrated. If either of those things happen, a crappy day is going to become many times worse.

Cisplatin, 5fu and something else along with 33 trips to Radiation might have kept me alive, but morphine, Fentanyl and Saline IV let me survive them!

Seriously, not everyone has a bad time of it. In fact, my reaction was the opposite of most others I know of. Radiation was the easy part.

longtermsurvivor · November 2011

It may not go this way
My first radiation treatment was in 1998. 35 sessions at 200 rads/fraction. I tolerated this just fine. No pain, no mouth sores. Just tired, low apetite and dry mouth. I worked full time, making adjustments in the rest of my scheduleto get around the tiredness. And the days went by, one after the other, until I was done. It took a long time to completely get over the radiation side-effects. But then, since my cancer was cured, I had a long time to get over the treatments.

Deal with today. Tomorrow will take care of itself. Best to you.

Hondo · November 2011

Hi Roger

I am like sweet, I just don’t know really how I did it, I just did and both times at that. I keep looking forward and focused on being better and all this behind me I guess. On the nodes in the neck I just had one on the right side and did not have it removed. It went away with the rad and chemo, you can still see it a little if I show it to you but it is just scar tissue now.

As you know we all deal with the depression at one point or the other. I find just having my wife close to me and holding me does more then any pill, the only side affects is love. On your visions being a nurse you deal with people everyday so you know what to expect. To me I make it a matter of prayer and ask God everyday for the strength to make one more day by his grace, then I give Him the wheel and sit in the passenger seat while he drive my life.

Remember all the Family and friend who are pulling for you and Love you. You will make it my friend and Spring is just around the corner.

PS: Also thanks for your help as I am doing a lot better now

Praying for you
Hondo

RogerRN43 · November 2011

Thank you
I keep forgetting that not everyone experiences ALL the possible side effects that I have grouped together in my head.
I guess I have always been a good planner and this is working against me... I can only plan to a certain extent and I won't know until I get the symptoms or not.

And I have to keep my thought process that I myself said and what you have confirmed, "Deal with it as it comes".

A small part of me still deals with the reality of it all. The first half of 2011, I was carefree, life was great, my parents are old and I thought I would age like them, without a serious disease, at least not at the age of 43. I still grapple with "why me?", then I rationalize with the DNA science of it all and the failure of my own genetics against whatever virus or environmental agent caused this in me that they were not exposed to.

Oh well, we can't change the past, we don't if tomorrow brings good fortune or not. I keep reminding myself there are very unfortunate people in this world and I should be grateful of my life. To take this as an opportunity to forgive, to love better, to enjoy life to the fullest when I get well.

I just wish the treatment didn't have to be like this with the modern science we have.
I can't remember who said it on this board but I agree, in 10-15 years when gene therapy and injecting modified viruses becomes more perfected, they will be like "what did they used to do for H&N cancer patients?"

The key here is "when I get well", that new normal that I will live with in less than a year, the hope of NED in 2, maybe 5 years. There I go again, looking ahead, worrying about ahead, when I should be taking it as it comes day by day.

One thing, you guys are great. I often feel better whether reading my replies or other threads.
Thank you

KTeacher · November 2011

You are so prepared
Roger, you are so prepared. Hopefully you will not have to deal with everything on the list. Last year when I went through this for the first time I did not know about this site. I was so glad to find it during the after burn (post radiation). I never needed the feeding tube, my sister was the only one that thought it might be a possibility, she had a friend go through this. I did do much better this go around. Radiation was a little lower, throat not the mouth and throat. It was no picnic but I knew what to ask for when something came up.
You are probably a very good nurse but you will be a great nurse with wonderful empathy when you get through this. You will be a blessing to your future patients and a wonderful resource.

sweetblood22 · November 2011

Side effects.
"I keep forgetting that not everyone experiences ALL the possible side effects that I have grouped together in my head."

That is why I hesitate to tell people my story, because I had most of the side effects, and they were severe. But I also have the added complication of Fanconi Anemia, which just makes it harder.

I think it is important to be prepared for the worst, but focus on getting through it in the best possible way. I have to try very hard to see the glass as "half full".

keep_the_faith · November 2011

One Day At A Time
Roger,

Being new to this website, I can tell you that I have learned more from everyone here than at my Head & Neck Cancer Support Group. Take one day at a time. I set goals but they didn't work out as I've had setbacks. Healing takes a long time so be patient. Yes, you will face many challenges, but you'll get through it as we did. We're all here to support you through these trying times.

You'll be just fine.

patricke · November 2011

MAKIN IT THROUGH
After 11 years I sometimes wonder how I made it through. I had stage 4 BOT and had the radical disection before radiation. I didn't have to go through chemo, but the radiation in the dungeon will always stand out as some of the least fun I've ever had. Some days will most deffinitely be better than others, count on it. As others have said, utilize all of the family and friend support that is available; this forum is obviously great. I used then and continue to use now a lot of self-talk during the most challenging times. My favorite mantra is "I can do this (whatever this may be at the time)" for today, this hour, minute, second, nanosecond, usually repeated multiple times. I suggest not over thinking what may happen regarding side effects, etc.; you have plenty of resources to help you handle the issues as they appear. There were times that I didn't think that my life could return to any semblance of normal, but in "time," and that is the key word/factor, it did. As Sweet said, "you just have to put one foot in front of the other and keep moving forward."

Patrick

Hondo · November 2011

RogerRN43 said:
Thank you
I keep forgetting that not everyone experiences ALL the possible side effects that I have grouped together in my head.
I guess I have always been a good planner and this is working against me... I can only plan to a certain extent and I won't know until I get the symptoms or not.

And I have to keep my thought process that I myself said and what you have confirmed, "Deal with it as it comes".

A small part of me still deals with the reality of it all. The first half of 2011, I was carefree, life was great, my parents are old and I thought I would age like them, without a serious disease, at least not at the age of 43. I still grapple with "why me?", then I rationalize with the DNA science of it all and the failure of my own genetics against whatever virus or environmental agent caused this in me that they were not exposed to.

Oh well, we can't change the past, we don't if tomorrow brings good fortune or not. I keep reminding myself there are very unfortunate people in this world and I should be grateful of my life. To take this as an opportunity to forgive, to love better, to enjoy life to the fullest when I get well.

I just wish the treatment didn't have to be like this with the modern science we have.
I can't remember who said it on this board but I agree, in 10-15 years when gene therapy and injecting modified viruses becomes more perfected, they will be like "what did they used to do for H&N cancer patients?"

The key here is "when I get well", that new normal that I will live with in less than a year, the hope of NED in 2, maybe 5 years. There I go again, looking ahead, worrying about ahead, when I should be taking it as it comes day by day.

One thing, you guys are great. I often feel better whether reading my replies or other threads.
Thank you

Hi Roger

Yes there are a lot of side effects and I believe I have just about 90% of them sometimes. But all in all even with being treated twice and all the side effects I can still work full time. Not in the previous position I was in as a Technical Manager but in a little less stressful job as a Maintenance Supervisor, God is still so good.

All in all with the good and bad days it is still so good to be alive.

╠╣ONDO

Skiffin16 · November 2011

Roger - It Is What It Will Be...It Is What You Make It....
Like mentioned, you may not get a lot of the things you are having anxiety over.

But if you do, you'll deal with it....you being in the medical field yourself I'm sure have seen patients go through all kinds of ordeals that you don't understand.

Bottom line is you deal with what comes your way. You fight, you concentrate on surviving, for yourself, your family and daughter...you do whatever.

It's not about how things taste, or enjoyment from eating or drinking at this point, it's about surviving..basic instinct, you must consume calories and nutrition and water/fluids.

You must get those inside you to help your body fight and to keep the mental strength to keep doing it over and over again.

Just think of the big picture...yes, the 35 plus days suck, but what's 35 days out of your lifetime?

How long did it take you for your studies in medicine...if you were ever in the service, boot camp was probably longer, and tougher....

You deal, you do whatever you need to do to mentally and physically get you through it.

Then, hopefully...you'll have many, many years to celebrate with your wife, your daughter, and your family.

Thoughts and Prayers,
John

Hal61 · November 2011

KTeacher said:
You are so prepared
Roger, you are so prepared. Hopefully you will not have to deal with everything on the list. Last year when I went through this for the first time I did not know about this site. I was so glad to find it during the after burn (post radiation). I never needed the feeding tube, my sister was the only one that thought it might be a possibility, she had a friend go through this. I did do much better this go around. Radiation was a little lower, throat not the mouth and throat. It was no picnic but I knew what to ask for when something came up.
You are probably a very good nurse but you will be a great nurse with wonderful empathy when you get through this. You will be a blessing to your future patients and a wonderful resource.

Sharp point
You're so right KT. I can imagine Roger back at work, dealing with a person who has had cancer treatment saying to him, "Unless you've been through it, it's hard to explain." As has often been said one way or another, all the docs should experience the maladies they treat for a bit. I know my radiation techs hoth had to do two weeks under the mask as part of their training. All the oncs should have to experience radiation, surgery, and chemo for a time before they are certified. We'd have lot less complaints about Doctors' attitudes I bet.

best, Hal

Any suggestions to help me get through this? Encouraging words?

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