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luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Hello all, I have been petty much non existent from the boards lately. There was a run recently of people having some setbacks and for some reason I have been having trouble with accepting the good as well as the bad. (weakness on my part) I should be in there helping the new comers. I just passed my 90 day mark from post treatment and feel OK. Last week I tagged along with my wife on a business trip to naples Fl. and it sure beat the foot of snow and ice here in St. Louis. I acheived some firsts while there. Air Travel and eating out at several resturants and actually being able to stay up past 9pm to name a few. I go for my first PET scan on the 21st and am starting to get a little pre occupied with this. "it is what it is" and do not know why I let it consume me so much. I have been back to work full time since the first week of December and that feels good, although for some reason The "gung ho" in me is not there. Lastly, hs anyone experienced a level of depression or anxiety just being around the house. For example, the weather was so bad here M-W of this week I was forced to stay couped up in my home. I have a lazy Boy chair that I literally slept in the first 4 months because I had to sleep sitting up. When I see that chair now, That is all I see, the 4 months of darkeness. Television shows and commercials that ran during the day when I was at home trigger a reminder of how sick and depressed I was. All I did was tube feed and sleep those days and I am back at work today and have not tube fed once, all nutrition by mouth today. Seems like all I can handle with being around the house is evenings after work when I felt productive that day. Does any of this make sense to anyone out there?? Does needing to get away from the boards when they have helped so much make any sense??

Enough wining, it is good to read all of your posts today.

Best to everyone

Mike

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hey Mike,
I understand everything you said. I had to rent a little cottage on the coast to get away from my home and all the "energy" it seemed to hold of diagnosis through treatment. It was strange; I felt pretty good (all things considered) all through treatment but just a few days after, things started getting dark and it was difficult to hold it together. What really helped was getting away for a couple weeks and just letting it all fall apart with the peace and beauty and stillness of the Northern California coast to kinda create a container that it felt safe to release in. Fortunately I had no internet or phone service so I was forced to occupy myself with either reading, yoga or walking on the beach. It's hard to accurately measure how healing that time was for me. In fact it was so healing that I gave my girlfriend/caregiver 2 weeks out there also and we traded places just 2 days ago. I am now back in town and she is out getting the peace and healing she so needs and deserves. Since I have been back the apartment feels different. It still reminds me of cancer but doesn't effect me the same. I had the same experience with this board as you describe also. I think maybe we just need breaks from anything to do with cancer once in awhile. Thanks for sharing what's going on with you. It helped me to read it and understand more of what's going on with me. Cancer free prayers for you.

Bob

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Bob, thanks for your reply. My little getaway to Florida definite helped me. It is sometimes comforting to know there are many others going through the same thing. Kind of makes me feel less crazy.

Ther little hiatus helped and I feel ready to move forward again.

BEST!!

Mike

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Man Mike...I can't believe that you visited Florida without giving me a heads up and having the opportunity to meet face to face...LOL.

Hopefully the weather treated you right, an Naples is very nice with some great beaches...

Best Always,
John

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

The wather was a bit cool to me. low to mid 60's and very windy. But allot better than 8 deg. with a foot of snow on the ground.

Mike

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Glad that you are getting back to doing normal everyday things and that you are settling into your new normal. I could see why looking at that chair would cause you a little anxiety, just the same as hanging around here could cause you anxiety. You know what you went thru and you'd be terrified to go through it again and you don't really like the reminder of it all. Sounds pretty normal to me. Maybe once you have your first PET and get a good result you may relax a little.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

When I was first pregnant with my 2nd son and feeling just awful all day, my older son was 2. All he did was watch Toy Story...over and over again, while I propped myself between two pillows to hold my body up, because all I wanted to do was lie down and be miserable...because I had to at least appear as an interested attentive parent to a 2 year old. My youngest son is now 13 and I still get nauseous when I see the original Toy Story. I also ate blueberry pie when I was a kid and got sick...cannot stand the sight of blueberry pie. Why our brain makes these strong associations resulting in aversions I do not know. Some sort of survival instinct would be my guess.
I would imagine the cabin fever factor we all have with the weather this winter adds to the difficulty. Mark had his treatment during the summer, so he could be outside a lot. Now that the weather is cold he has some issues that he did not have so much when the weather was better. He wears two scarves to protect his neck.
You may want to get rid of the chair, in some sort of "I have survived" celebration. A burning ceremony maybe. If you were once attached to the chair, it doesn't sound like that attachment exists anymore. Mark had clothing that he associted with his treatment...he tossed them. Also all medicine bottles had to go (they are actually hidden in my closet) with all the left over medical stuff.
90 days post treatment is a huge milestone. The PET causes anxiety no matter how far out. Mark is approaching his second, and ironically I break out with mouth ulcers as it approaches. Mark is at the 6 month post treatment phase and doing really well with his new normal. What I have become aware of is cancer is a chronic condition. We think about it every day, we talk about it in some form every day, the side effects of its treatment affect Mark every day, whether I am on the boards or not (and I have taken breaks too...more of a dabbler now).
That was kind of a long winded post...just want you to know it is great to hear from you...and you seem like you are going through very normal post treatment stuff.
My best to you and your family...toss the chair,
Kim :)

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Kim and all,

I had to discard all of the scented soaps, shampoos, and moisturizing products I used during treatments. They bring on terrible flashbacks. I can't stand to use them. Just as an experiment, when I was at the hairdresser's yesterday, I sniffed the really nice shampoo she prescribed for my treatment hair, and I almost lost it.

The really cute little sweatsuit outfits I bought to wear to all my treatments - gone. I pretty much had to strip my closet of all my cancer clothes, including the outer wear. No way I was going to walk out the door in that stuff. Ever again.

We all do what we have to, to move on. Fortunately, I still love my beautiful house. Even the recliner chair. And I never got sick of the family.

Deb

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Hi Kim, nice to hear from you. I thought I was the only one in the world who felt this way. Man, was I wrong!!

I do not have any attachments to the chair as I purchased it two days before I had my surgeries. If I continue to struggle with it, I will donate it to a charity. I see little reminders all around my house that trigger the past. I have a safe full of Oxycodone liquid and Fentanyl Patches that I ended up not needing. I need to get rid of those, as they remind me of all of the pain I was in. You are right about the "C" being a chronic condition. Even when we show up NED and the ENT gives you the "high five" it still sits on your shoulder each day. I may try some counseling, but I just do not see how anyone can truly put this out of their minds permanently.

Glad to hear Mark and you are doing well. Stay warm as I too no longer can function like I used to in cold weather. Hopefully that will past, because unless I move way south, winters will always be here where I live.

BEST!!

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Nice to hear from you sweets and hope you are getting along fine. Nice to know I am not the only one that has felt this way with all of the daily reminders that can trigger bad thoughts. I will most definitely feel better after the first PET as I prob. think about the upcoming scan several times per day. Even a stupid commercial from facilities advertising MRI services triggers wierd thoughts.

take care and my best to you

Mike

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

Great to hear of your progress, and you're back to work. I went back a month after the last rad, and it was good therapy for me. This board also helped with the therapy, so you might wanna hang around a little more. Everyone's different, though. Can see how someone might wanna just leave all the C memories in their dust, and being here kinda takes on back to the H&N experience.

As for the PS/CT- the first one is no sweat, and is typically only warranted to "establish a baseline" by which the PS/CT tests down the road can be compared. Too soon for any real C to show, Mike. Has happened, but about 95+% of the time anything that does show is later proven to have been a false Positive. Only know of one who had something real show, and their C team of Drs. clearly had been in error- misjudged the C and where it had already spread to. You'll be fine. It's down the road where the chances increase that it's back.

Just north of you and Greg in the Quad Cities, we got our #2, all-time, snowstorm, but not the ice your area got. And, in spite of the millenia-old summer conflict between Chicago and St.Louis, which some say dates back to the BC Greek era(!), followed by the young Abraham Lincoln in the Illinois Legislature proposing to have Illinois declare war on St.Louis for, as he put it, "humility to someday come in the friendly confines up north;" and, when his bill failed to get passed, he said to heck with it and ran for President, with the campaign slogan, "Hey, I declard war on St.Louis," which a few Chicago historians suspect got him the President job. And, he woulda continued his outrage by having the US declare war on St.Louis, but the Civil War got in the way! Betcha didn't know that. Uh...anyway, hopes and Prayers that you keep moving forward, Mike.

kcass

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Very interesting bit of history between Chi Town and the Lou. I do not need to tell you about cold weather living in the Quad Cities. BRRRRRR!!

I am indeed nervous about the PET and realize it will be more of a benchmark for the future, but being able to at least hear NED will elevate me mentally to the next level.

Due to the agressive nature of my cancer, my ENT seems to think I will most likely have a re occurrance sometime in the future. I hope to prove him wrong!!

I appreciate your reply.

BEST!!!

Mike

sue5749
Posts: 170
Joined: Dec 2010

My husband is still in the ICU Been 2 days now he had a trac put in because he stopped breathing while he was having a port put in. He found out he has throat cancer over 3 months ago. He can't talk. He cannot talk to his kids on the phone. They are so worried about him! The swelling is so bad that the docters said he cannot take anymore treatments for awhile. I set there holding his hand in ICU, It is just so awful! I went out Christmas and bought him a new recliner because he had to sleep sitting up too. It is so quite here, him not being here, can't sleep here nor there. Come home and try to get a few hours rest then back in the morning. Not complaining just feel so much like I am in a fog? It's horrible, just horrible to see your husband suffering like this! Can't eat, drink, swollow, now can't even talk!!! How much can a person take?

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

Hard to answer that question, except that the Lord doesn't give one more than they can handle, if they want to handle it. Your husband's in battle, now. I do hope they've opted to help him with strong pain meds- I was on Morphine for 4 of 5 consecutive weeks. Make sure the Drs. do their job by helping him with the pain all they can. Hopefully, he just has to get past this part of the rough road, then the body will be able to do more in recovering. You just gotta be strong, Sue. Bottom-line. You got a job to do in staying strong and loving for your husband. That's what he needs from you, now.

Been awhile, but A BECKON CALL TO ALL for hopes and Prayers for Sue's husband, and for Sue. Times like this, when the road gets the roughest for one of us, is when we gather as one in Prayer, Sue. I Pray for your husband in the ICU, and for you- to believe the Lord is with you two, and you'll be all right.

Believe

kcass

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Sue, sorry to hear that your husband is in the middle of some trying times. I am confident with you by his side, he will come through the other side just fine. Please try to find some time for yourself as you have the additional load of being the caregiver also.

Gotta love those recliners. I purchased mine two days before I had my two surgeries. It saved my life, but all I see with my chair is me lying in it debillitated.

Hang in there, you will perservere.

Mike

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

You sound a little like me. I think we all go through depression during or after treatment at some point. I do pretty good at handling it untill I see someone sick that is why I don’t like going to the hospitals or anything. While I was at the Mayo Clinic in AZ in November there was a young boy there and a lady coming out of the building and for some reason I don’t know why I started crying, all my wife could do was to hold me still I stopped. Then she asked what made me so sad, I told her it was the look on that young mans and lady face, I know that look because I wore it for a long time.

You might do well to get rid of the lazy boy chair or paint it another color, switch things around so they don’t look the same. My wife did that for me and it sure made thing a little better.

I also take some of my work home to keep me busy and now I have my shop in the back yard but it been to cold for me to do anything in it. Find a hobby something you like or always wanted to do and do it, it helps.

Take care my friend
Hondo

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

Hi Mike, yes I think we all need to step back from the board once in a while. Cancer is just so overwelming, seems every TV commercial is about treatment, perhaps I should turn "Bonanaza" off. Kimba has got something there with it being a chronic condition. I am thankful however when folks return. There are some oldtimers here who post sporadically but still keep a hand in it, for them I'm grateful. It's inspiring when a 5-10-15 survivor has anything to say and take a lesson from them as well. I'm 18 months out and still feel as you do sometimes. One foot in front of the other Mike.

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

I am always eager to read and speak with others who have beaten this over the long haul. Does not seem to be allot of people on this site with serious longevity. Are there other sites? I am really reluctant to leave this site as it was such a real help to me.

Mike

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Hondo,

I know that look. we all do. I cried when I saw a picture of Michael Douglas during the time he was undergoing treatment. I recognized the expression from my own face.

deb

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Hondo, I am exactly as you described. I can spout tears at the drop of a dime. Maybe I should become an actor??

My wife is the Manager of Trauma Services at a Level 1 Children's Hospital in St. Louis, and when I stop in and see her for lunch, I can see a sick child in a red wagon with all of the IV lines and no hair and I just cry. I also realize I have it a whole lot better than these little ones who have just started their lives.

I only seem to get "wierded out" at home if I am there during the week day when I could be at work. At home in the evening or on a weekend I seem to be OK. I know I do not like to be at home alone as I was for most of the 4 mos. as my wife had to get back to work. As far as the chair goes, I purchased it two days before I had my surgeries, so I do not have any sentimental attachment to it. I might be better off donating it to a charity if it continues to bother me.

I was hesitant to post this thread as I felt a little embarrassed and was confident no one else would share any of my issues. Boy was I wrong, it will be interesting to see how many more replies I get to this thread.

My wife and I will need to find something to do as our kids are now in college. That will surely help just to have something fun to do outside of the house.

Take care and stay warm. I cannot do the cold weather anymore since this all happened. I hope it is temporary as winters will not go away here in St. Louis.

BEST to you and the family.

Mike

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

You all make me feel so normal as I sit here reading and crying, picturing the young guy Hondo saw and the children Mike sees. I was always told "stop crying, you look like a girl" as a child and I have held the tears in for 39 years and now they just pour out every day. Of course they only pour out of my right eye as cancer destroyed the tear ducts in my left early on but it still feels pretty good. Thank you all.

Bob

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Real men with a heart and a conscience do cry. I have found that I am not nearly as abrasive as I used to be before "C". I seem to pay more attention to my surroundings and other people.

I can always be worse I have quickly realized.

Mike

hawk711's picture
hawk711
Posts: 532
Joined: Jan 2010

Hi Mike, Bob, Kim, Kent et al.
I have not been on line for awhile either, so thought I'd get my 2 cents in too. This board helps a lot of people who just found out they are sick, in the middle of the fight, or are post treatment by several months. I still come here to lift my spirits and try to raise others. I have always been an emotional guy, but lately I too drop a tear at a TV show, or a sad story on the news. I think that we all know how fragile life is now and we have strong feelings for others in similar situations, and it comes out.
I got a NED reading last month and felt a 100 lb weight lifted off my back, but I still have the PEG and can't eat much yet, so I have a daily reminder of what the disease has done to me.
I just try to remember how bad it was during treatment and how much better I am now, even though I have a ways to go, I am much, much better.
Let's all say a prayer for each other today sometime: to lift the spirits of all of us no matter where we are in the struggle, early, during or post treatment. Let's remember that a day is only 24 hours long and then a new day starts. Let's try to make our mission to make this day a good one, and if it's not, we get another chance tomorrow to make it a good one.
My best to each one of you,
Steve

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I'm two years and four months out. When I was in treatment at Johns Hopkins (about a two-hour drive from my home) my wife and I rented a condo in Baltimore so we wouldn't have to travel.
It came fully furnished, including kitchen stuff.
When I finished treatment and we moved back home, we inadvertently took one of their dish towels with us. We use it at home, and to this day when I look at it my stomach sometimes does a flip-flop.
So no, you're not weird. Either that, or both of us are.

--Jim in Delaware

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Great to hear you're doing better. For me, it is some of the food from during treatment. Pudding, I don't believe I'll ever want to eat that stuff again. It would probably taste ok, but just seeing some at a deli counter turns my stomach a tad.

Perhaps as some folks get past treatment and begin feeling better and better, they tend to drift away from this board. Not entirely maybe, but they don't log in every day as when they were going through treatment. It's probably a natural progression as they begin to reclaim their lives. Cheers

Jimbo

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

I agree with the logging on. When I am really busy at work, the site just seems to slip my mind. I may also just read some posts and not chime in. I feel more comfortable logging on in the AM at work for a few minutes and that is it for the day. I have gotten away from spending time on the site when I can be spending time with my wife when we are at home.

BEST!!

MIke

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