Connie needs your help & Support
To all my friends on this network,
I do not come around as often as I did when Connie was really sick although as most of you know this disease always keeps a person on edge even when the scans come back clean. Connie has been out of treatment since 2011 and she had her feeding tube taken out in early 2012. We really could not ask for everything to go any better than they did. We thank God everyday, also the doctors at MD Anderson are the best and also we thank the survivors & caregivers here for All the help and answers to all our questions over the years. Connie has a scan coming up on 3/31/14 in just a few days. Today she woke up with a sore or blemish on her chin and panic sets in immediately. Hopefully, it's just a blemish and nothing more but it did get us to talking about the fact that although things have gone well so far the fear of cancer never leaves. Connie's life is very different now than it was before treatment. We pretty much visit the same restaurants over and over because Connie cannot eat anything spicy, not even a little bit. She cannot eat bread and has to drink a lot when eating. The fear of choking limits what she attempts to eat. She has lost her sister (ovarian) and mother (lung never smoked) to cancer and basicly the topic to this posts is FEAR! Connie has some symptoms that cause her to worry. (1)She cannot regulate her heat and gets cold even when it's not cold. (2) She gets night sweats to the point her pajamas are damp. (3) She is very emotional and has a hard time controlling her emotions (4) She forgets a lot of things most people take for granted. (5) She worries all the time about this disease recurring (6) Although she never had back pain before treatment, the chemotherapy treatments caused her to have chronic back pain that to this day she still takes pain killers so she can function pain free. (7) We argue much more than before due to these problems and really don't know how to control the anger. There ar more issues but I can't think of all of them right now. Connie was granted disability (compassionate allowance) due to the severity of her cancer and having medicaid, which after 2 years changes to medicare was a blessing. This month, she had a evaluation which caused her to lose all government assistance. We are not mad about losing this help and really owe a debt to the US government for all the help and care they provided. Now she is afraid of not being able to see her doctors at MD Anderson after her medicare is cancelled in April. I have been checking into Obamacare as a result of this cancellation and although it is available for people with pre-existing conditions, it is somewhat expensive. I am writing this post to see if anyone else is going through these symptoms or have in the past and have any advice that might be beneficial to us. Also if some of you have already signed up for Obamacare, I could use some advice on that too.
(Connie) This is the first time I have written on this site Homer usually is the one.Not that I don't want to, I just end up backspacing WAY to much.I have a hard time complaining about things that bother me because they seem so minor to other peoples problems.I do have alot of emotiomal problems.I seem to cry alot.I get very scared of it coming back.What would we do.Could we go through it again.Of course you would do what ever it takes to have another day,another hour,another minute together.We have been married for 30 years and I PRAY we have many more.I always wonder does it ever stop,do you ever stop worrying,do you ever stop being afraid.I try to keep busy doing things to keep my mind off of it,and it does help.Homer was right,it does make you feel better talking to you guys.Doctors know things from the books we know things from inside.Thanks for listening. With Love, Homer and Connie
Comments
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Yes
I agree with John, have you had thyroid checked. Some of the things you list sound like thyroid issues. I am constantly worrying about recurrance, unfortunately I have had many, hopefully done. I had a clean MRI last week so no anxiety until June! How are you sleeping? I still have problems sleeping. Never really feel rested. Are you able to get out and get some fresh air. Sometimes taking a walk helps. Hopefully you will be getting better daily.
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Welcome Connie...
The fear seems to always stay in you a little, and is easily rekindled with just the minimal symptoms..
You try to not let it consume you, and I feel over time it does get easier, but not to the point that you ever were before cancer.
As for somethings you have going on, do they monitor your thyroid levels, specifically TSH and Free T-4 levels in your blood work... The coldness and a few other things could be a thyroid going south which isn't uncommon with radiation...., and easily treated.
Anyways....
My thoughts and prayers, and good vibes for your upcoming scans...
John
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I like it when
John says "we're all scared, but we can't let it consume us".....it's a reminder to me to not let the thoughts...the "what if's" over whelm me. I doubt I have had 10 straight minutes in the last 2 years that cancer didn't enter my mind in one degree or another. My worst times are the 2 or 3 weeks before scans.....where I'll aquire a half dozen symptoms that seem to magically disappear after the scan is over....so I KNOW my head is doing me in. I have a few tricks.....one is deep breathing (yoga style), it relaxes and you can't think about cancer if you're concentrating on breathing. I also do self talk.....remind myself I don't have cancer at this minute, so I might as well get moving on what I'm doing this day. You've passed the two year critical time....the majority of Drs. will tell you that recurrances fall dramatically two years after treatment.....take that and run with it!!!
Have you had an xray of your back? The hard part about being older is than many things that we'd attrubute to aging if we'd never had cancer we now go "uh oh"....and wonder and fret is this it?? I can tell you that if my back had hurt for two years to the point of taking pain meds, I'd want to know what is.....it's not cancer.....is it arthritus?? The eating what we can eat, dragging a bottle of water with us wherever we go, waking up to our tongues stuck to the top of our mouths....are all things we just learn to live with.....all things considered, are probably better than needing two knee replacements (to me, anyway
....) What about anti-anxiety meds? It's not like they are forever.....but they'd help you get anxiety under control in order to learn other tricks before getting sucked into the black hole of fear. As for regulating your own heat....well, my thyroid already has been going down hill.....and they keep upping the meds.....I'm still cold, and I'll be dressing the same way in June as I am today.....the whole neighborhood gave me thumbs up and a Whoop last year when I finally wore short sleeves (in July)....LOL. Do get a blood test tho, and make sure your thyroid is doing what it should.
p
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HI You twoKTeacher said:Yes
I agree with John, have you had thyroid checked. Some of the things you list sound like thyroid issues. I am constantly worrying about recurrance, unfortunately I have had many, hopefully done. I had a clean MRI last week so no anxiety until June! How are you sleeping? I still have problems sleeping. Never really feel rested. Are you able to get out and get some fresh air. Sometimes taking a walk helps. Hopefully you will be getting better daily.
Hi, First off, the thyroid thing is right on the mark, I went through some of the stuff Connie is going through, cold, sweats, depression etc. I also got constipated and gained some weight, doctor took blood and I was down with hypothyroidism. I am now OK as I started to take Synthroid, it took a while to get the right dosage. Fear, Apart from the natural fear of cancer, who does not fear that devil? The fear could, along with the anger and other symptoms be attributed to PTSD. I had larynx cancer in 2009, lung in 2012 and prostate now. I also had some minor skin cancer. I am doing well on all fronts, lungs clear, prostate under watchful waiting, the thing that really bothered me was the emotional stuff, I too was hard to get along with, my wife said I had undergone a personality disorder. Finally went to a shrink and was painfully diagnosed with Post Traumatic Stress Disorder, therapy is ongoing and seem much better now. talk to your doctor and get help from a Therapist that specializes in PTSD. Hope you sort it out and good luck with your next scan. Denis
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Welcome
Connie, my 1 year anniversary of the Dr telling me I needed a cat scan and MRI is tomorrow. That was the day my life really changed as did everyone's on this site. I'm always feeling my neck for something and get a little anxious before each doctor appointment. Some nights I do sweat ( I may of done that before), I started taking Lexipro at the end of my treatment and am still taking it as I think it helps. I've been married to my wife for 32 years and really cherish every moment with her and my children, especially after how they all rose to the challenge this past year. I also have some nerve damage but nothing that slows me down or something I can't live with. I also still can't eat spicy food ( and I LOVED IT) and frequent the same restaurants (I know I did that before). I sometimes get choked on bread or whatever. Our paths are very similar.
as far as the emotional challenges, you've been through an awful lot the past few years so some of that is to be expected. You might talk to your Dr about how your feeling and if you aren't taking an anti depressant you might want to see it helps. It definitely helped me. When I look back at how far I've come in a year and overall how good I feel now, even with a few little side effects, it's pretty amazing. i'm sure you've come a very long way for the the lows of how you felt at the bottom in 2011. We all have a lot to be thankful for.
As LongTermSurvivor had in his background info, we need to live and not let the fact we had cancer dictate our life. We've all been give another chance and no one knows how long any of us have but we're still here and appreciate every day more than we did before all the crap. Lean on Homer and your family, try a few new things as I guarantee that almost any restaurant has something you can enjoy (with some water). Relax and smell the roses:)
all the best,
Keith
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hi, i agree with the others,
hi, i agree with the others, i don't think the fear of cancer returning ever leaves us 100%, we just learn to live with it and push the thots aside when possible. eating can be hard. i had 35 rads 8/09 and neck dissection and laryngectomy 2/12 and i still have trouble eating some foods. i have to say tho, since surgery, i love spicy foods, never liked it before. i have the most trouble eating salad. it often gets stuck in my throat and sometimes refuses to go into my stomach and just seems to linger at the back of my throat for a while. my caregiver also told me that the 2/12 surgery had changed my personality for the worse. he said before i was a kind and caring person and after surgery i became hard and non caring. i know i did suffer awful with depression and perhaps i did come across very mean but i saw the doc and got on meds to help me with the depression. the meds have helped a lot! i haven't been told for quite some time that i'm hard and non caring, so that says to me that its working. my memory is very bad and has been since rads. there is about 1.5 - 2 yrs since rads that i have no memory of at all and i forget a lot of things too. i'm 57 so age may play a small part but i really believe rads has a lot to do with it. she needs to stop worrying all the time about the cancer or the cancer wins. if she allows it to rob her of life, then why did she fight to win that battle? if she isn't living, she didn't win! she should probably see the doc about meds to see if they can help her. she really needs to talk to someone to let them know that she spends too much time worrying about cancer. many people suffer depression after being told they have cancer and especially after the hard fight to get rid of it. meds may be able to help her get back to living. i hope she will consider talking to her doc. praying things will get better for her and you. i would hate to see cancer also rob you of your marriage. please let us know how things work out. we will be here for you both.
God bless you,
dj
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thinking about it
Homer & Connie,
The fear of cancer reoccurrence is unavoidable once you’ve had it (and have the side effects to remind you). You just manage the feeling the best you can whether through breathing, exercise, therapy or meds. As long as I don’t dwell on the negative, I am not too bad.
I just returned from Ruby Tuesday where I had a Smoke House Burger & fries with 2 large glasses of water and 1 ice tea. Everyone in the restaurant finished their meals before I did, but slow and steady wins the race (or the meal).
I fought being tired and now feel somewhat better as the doctor tries to figure out my Thyroid meds. I wanted to move to Florida and get warm, but I manage with an electric blanket.
If it does help, more time under your belt is supposed to be a plus.
Good luck on the appointment.
Matt
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what works for me ...
I always, everyday, spend time thinking about how great today is. Whether it be sunny or rainy, I will make note and enjoy the coolness of the rain or the warmth cast on my skin from the sun. The trick for me to always stay up is I ask myself if this was my last day, my last moments, am I feeling and thinking about life as it is or being scared and freaked out and upset wondering about what "might" be.
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Welcome Connie
Homer and Connie:
Welcome Connie! I can't speak about your symptoms as I can only speak from caregiver standpoint; but wanted to reply as Homer's replies to my posts have been so encouraging and uplifting. I agree that the fear of the return of the beast never leaves 100% even for caregivers. I'm dealing with that right now with my best friend of 58 years as her husband's cancer has returned and has mets to brain. I'm leaving to go spend the weekend with them in their new house. Their house burned this time last year and she lost her 95 year old father in the fire and Steve (her husband was in the middle of his rad. and chemo tx!) But Praise the Lord they rebuilt and now in their new house. Cancer does put a strain on your marriage. In my case Charlie was wonderful and I was the basketcase! If he ever was depressed I never knew it. And at his service his brother when he spoke said, "Charlie was one for whom the glass was always half full - NEVER half empty" That is so true. I even found Life is Good t-shirts with that on it so of course I bought them! Try to remain as optimistic as you can and keep a sense of humor. Praying that scan will be clean and God bless to both of you! We are always here for you both.
Jan (Basketcase)
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T (fishmanpa) wrote a long
post today about scanxiety....and anxiety in general......maybe read it? Some ideas in how to counteract it.....and for me, knowing I'm not alone always helps
.p
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I just wanted to thank everyone
To Everyone, I just wanted to say thank you for all the kind comments. I think everyone gets down every once in a while. Connie is definitely going to have her doctor check out her thyroid. Hopefully we will get it figured out. I knew where to come for good advice. I have always kept everyone here in my heart for everything ya'll have done for Connie and I. You know when you think you got it bad, all you got to do is come on here and read a few posts to know their are lots of people here that have it a lot worse. So our problems are small compared to others. I hope everyone is doing well and I will pray for the ones that are going through tough times. Someday, I hope we could get together for a reunion, it would be nice meeting everyone in person. I realize that is next to impossible but one can always dream. I really have missed everyone here.
With Love, Homer & Connie
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another pushconnieprice1 said:I just wanted to thank everyone
To Everyone, I just wanted to say thank you for all the kind comments. I think everyone gets down every once in a while. Connie is definitely going to have her doctor check out her thyroid. Hopefully we will get it figured out. I knew where to come for good advice. I have always kept everyone here in my heart for everything ya'll have done for Connie and I. You know when you think you got it bad, all you got to do is come on here and read a few posts to know their are lots of people here that have it a lot worse. So our problems are small compared to others. I hope everyone is doing well and I will pray for the ones that are going through tough times. Someday, I hope we could get together for a reunion, it would be nice meeting everyone in person. I realize that is next to impossible but one can always dream. I really have missed everyone here.
With Love, Homer & Connie
For following up on the thyroid as well as trying to get the benefits re-instated. Jim was able to get his put back in place - he is not able to work due to pain issues and the medication needed to control the pain as well the fact he could not perform his job. Please re-apply and engage an attorney if you need to.
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Connie and Homer, congrats
Connie and Homer, congrats for 30 years. Jim and I just celebrated 30 years too. Happy you are getting thyroid checked. I have heard it said that after head and neck treatment it isn't if your thyroid goes south, it is when.
Jim has had some of the same symptoms since treatment. Some were addressed when he went on thyroid meds, some were not. The crying easily was one. He was on anti depressants for awhile but quit taking them when he was ablr to fish again. He lives to fish. Maybe if you could find something you really like to do and make sure you make the time to do it will help. Jim would get up every mornibg at 5am fish until 9 or 10, then he would be tired the rest of the day. But this kept him positive, happy and gave exercise. He now is unable to physically go fishing but dreams about it all the time.
As for the fear. Yes it is always there, even for the caregiver. Coming to this site and expressing the fear and reading replies helps a lot. Jim has a great fear of choking. he will not even swallow liquilds now for fear of choking. Never removed PEG so he does everything through tube.
I pray for you both and wish you blessings.
Debbie
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Dear Connie & Homer
the fears and what ifs ,you go through ,are pretty normal, I am right now in the midst of getting my thyroid checked...I've had a blood test, Tues, I take a pill at 10:30 pm and go to the lab at 7:30 am, for another blood test, then on Thurs will have an ultasound. I'll let you know..anyway, I'm a pretty laid back person but I take an anti-depressive pill every day..
Just remember, we've all been there, done that..and we're her to listen and encourage..never be afraid or embarrassed to ask for some help..keep the faith and walk in peace
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Sending my bestGrandmax4 said:Dear Connie & Homer
the fears and what ifs ,you go through ,are pretty normal, I am right now in the midst of getting my thyroid checked...I've had a blood test, Tues, I take a pill at 10:30 pm and go to the lab at 7:30 am, for another blood test, then on Thurs will have an ultasound. I'll let you know..anyway, I'm a pretty laid back person but I take an anti-depressive pill every day..
Just remember, we've all been there, done that..and we're her to listen and encourage..never be afraid or embarrassed to ask for some help..keep the faith and walk in peace
Connie and Homer
As always, sending you some positive vibes and hoping everything gets better for 2 of my old friends on here!
My best being sent your way!
Greg
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Homer,
I can relate to a lot of what you said Connies symptoms were, I had many of those and was diagnosed with post traumatic stress syndrome, I had bad night sweats, couldn't concentrate or remember things, always have that nagging doubt, ....you might want to look into professional help along these lines, I know just being diagnosed was kind of an AhHa moment, and I have progressed since then with medication, and time.
Jim
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Greg 53Greg53 said:Sending my best
Connie and Homer
As always, sending you some positive vibes and hoping everything gets better for 2 of my old friends on here!
My best being sent your way!
Greg
Greg, Good to see you are doing well. For a guy I never met in person, I do consider you a dear friend. Always positive, Always something nice to say, Just one really nice guy. When I grow up I want to be just like you!
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I was diagnosed with a brain
I was diagnosed with a brain tumor at the age of 12 in 1996 and not supposed to make It.
- I have noticed a lot of the symptoms that you mentioned I still suffer from to this day good night sweats I get cold very easily and one time cold it is really hard for me to get warm again the anger is another thing I have been taking Prozac for it since 1996 often on
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wow, cuttie, i'm so you wereCuttieConnie said:I was diagnosed with a brain
I was diagnosed with a brain tumor at the age of 12 in 1996 and not supposed to make It.
- I have noticed a lot of the symptoms that you mentioned I still suffer from to this day good night sweats I get cold very easily and one time cold it is really hard for me to get warm again the anger is another thing I have been taking Prozac for it since 1996 often on
wow, cuttie, i'm so you were so sick at such an early age. was it cancer? what tx did you have? have you been cancer free since 96? i hope you are well and living life as well as can be expected after cancer. i know the side effects of tx changes our lives forever but we learn to accept our new life and go on. but i also understand the anger. i still get angry at my new way of life sometimes and it has been 2 yrs and 3 months for me, but who's counting, right? like you tho, i do my best to live life and not let cancer rob me of anything more than it already has. i won't let it and i hope you wont' either.
God bless you, CuttieConnie.
dj
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Homer and Conniedebbiejeanne said:wow, cuttie, i'm so you were
wow, cuttie, i'm so you were so sick at such an early age. was it cancer? what tx did you have? have you been cancer free since 96? i hope you are well and living life as well as can be expected after cancer. i know the side effects of tx changes our lives forever but we learn to accept our new life and go on. but i also understand the anger. i still get angry at my new way of life sometimes and it has been 2 yrs and 3 months for me, but who's counting, right? like you tho, i do my best to live life and not let cancer rob me of anything more than it already has. i won't let it and i hope you wont' either.
God bless you, CuttieConnie.
dj
Is menopause a consideration? I am 2 years post tx from my original rads and chemo and I am still adding foods to my "can do" list so don't give up hope there. I am eating things today that I couldn't eat just a month ago. Like Matt, I'm the last one at the table. After my initial tx, when the ugly thoughts would try to creep in, I told myself that I better live today like these were the good old days, just in case it turned out that way. Unfortunately, I have had 2 recurrances but continue to fight the fight. I don't let the thoughts consume me too much...well, sometimes I need the help of a little xanax. Homer, I get irritable with my spouse, who has been the best caregiver I could ever hope for and I love him dearly. I don't know why I do that. He remains patient and understanding, I don't know how but I am certainly thankful. I can tell, you have the same type of heart to help Connie through the difficult times. Connie, try to be positive. If the cancer returns you can tackle it then but don't give it your precious time now. Enjoy life to the best of your ability.
God bless you both,
Candi
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