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ecmb709's Message Board Messages

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My husband underwent chemo and radiation three years ago and is still experiencing very dry mouth to the extent that it interrupts his sleep, speech, etc.  Prescription medication is approximately $100.00 a month (after insurance)  and may or may not help according to the doctor. 

Has anyone tried "Salivasure" lozenges with any success?  Thanks for your replies.

Well, just to update everyone here - my husband had a CT scan of his lungs and they came back CLEAR!  Now I can sleep. 

Several months ago, a radiologist noted a "shadow" on a previous x-ray.  My husband's oncologist said he was not concerned about the report but did order up the CT scan.  But  waiting for the test day.   And  waiting to be called into the room for the scan.  Then going to the doctor's office and waiting to talk to him.  And then finally,  waiting for the phone call that the radiologist noted that the CT scan was clear.  The waiting is nerve-wracking. 

I just want to add to all who read this to not panic, if possible.  When the doctor wants to do follow-up testing because something doesn't look quite right, try your best to not imagine every horrible thing that it could be.  Easier said than done, I know.

 

Dave,

Thanks so much for your encouraging and spirt-filled words!  I know that everything you said is true.  

ecmb

He had the nodes removed.  In later surgery, tonsils were removed because, supposedly, cancer can be lurking, and often is, behind the tonsils.  So as an extra precaution, the tonsils were taken out.

Yes, he received radiation and chemotherapy - very grueling.  Primary was never found.  

Two and a half years ago, my husband was diagnosed with squamous cell carcinoma in neck lymph nodes.  They were removed and he has been following up with his oncologist regularly and having PET scans as ordered.  PET scans have all been clear.

Four months ago, a routine chest xray showed a small spot on his lung.   My husband found this out at his routine check up this week.   The oncologist is now ordering up a CAT scan of his lungs to check this out.  My guess (hope) is that the oncologist is not overly concerned otherwise he would have ordered up the CAT scan four months ago when the original chest xray was taken.  But I don't know. 

As an aside, my husband has been to his regular doctor because he has had some respiratory issues.  I think he may have bronchitis or even early pneumonia. 

Is a spot on a lung always indicative of cancer?

I just want to add that when I am most paralyzed with fear, this website has been a place for me to find support and comfort.  I am a spiritual person, but sometimes I need to hear the words of other people who are going through similar experiences. 

 

Sean, I'm so sorry to read what you've been going through.  I think this is so much harder to deal with when a family includes young children.  All  children are hurt but it is most confusing for young children.  My youngest (12) does not talk about it.  She is strangely quiet but I know how very smart she is so she probably is trying to keep this out of her life by not talking about it.  The older children verbalize more but they also have more outlets - careers, grad school, college and jobs to take them away from this situation, at least for a time.

 To add anything, I will say that our family situation HAS IMPROVED.  So please, everyone, take courage and have hope.  What has helped is that we, each of us in the family, from time to time, have mentioned the situation to my husband.  I don't think he realized how his anger was affecting everyone.    Flaring up over some little insignificant thing was not normal behavior for my husband.  It was really unnerving and upsetting. 

 The fear - well it will never be gone.  But that is life.  One day at a time.

 Marie 

 

On 6/11/2008 NipyHam wrote:

Wow, how ironic that your question of just a few weeks ago is the same condition (situation) I am interested in.    

 We, as I am sure you as well, want a home filled with love, understanding, compassion and support but when we are dealing with a situation that we have before US, that recipe is off-kilter.

Bless you & your family!

Sean


 

 

On 6/11/2008 NipyHam wrote:

Wow, how ironic that your question of just a few weeks ago is the same condition (situation) I am interested in.  However, I noticed that with over 70 replies, very little suggestions or advise. I will be looking into the 4th Angel program.

My wife was diagnosed with breast cancer in Jan. '07 exactly 1 week before her birthday & 3 days before we were to leave on vacation. Obviously this situation never comes at an opportune time but we (together with our 2 young boys) faced the situation with the mindset that we would get thru this together. We went thru the surgeries, chemo, radiation and all the side effects already mentioned.  Now, approximately 8 month's since her last procedure, her moods have changed DRAMATICALLY!  My wife always enjoyed life, was always thinking of taking care of others (she's an RN) and overall a REALLY NICE PERSON!  Now, it seams that she is almost confrontational over the smallest things and a trait of rudeness that she never had before. The littlest things will have her snapping back at me or the boys (8 & 12) over something that otherwise would have gone un-noticed before.  One example of the rudeness I spoke of was when she blatantly interupted a conversation that was directed to her & I and she just asked the boys if they wanted a drink. I know this sounds minor but this was totally out of character for her.

I have a friend of mine that warned me that his wife went thru dramatic changes when she was diagnosed with breast cancer over 10 years ago and he is still in an unhappy relationship.  I'm with you, I want the person that I married back!  We can't change certain things that happen to us in life (my wife has had cancer & I have had 3 major surgeries) but you can't dwell on these things. I am in pain pretty much 24/7 but I try be as friendly as I can to my friends, family & business associated.  If I interpret your initial posting and subsequent postings correctly, you are saying your husband's personality has changed.  That is what I feel I am dealing with.  I don't think my wife (and possibly not your husband) is constantly thinking about their condition, their mortality or wanting any special treatment - it's more like a different person then the one we knew before. 

I am hoping that someone (patient / caregiver / Doctor) will reply to us with direct advise (like 4th Angel) so that we can pursue multiple avenues in HELPING our loved ones.  Are there proven "over-the-counter" supplements that could help with this situation; is it counceling for the patient &/or the caregiver; is this something we should talk to the surgeon or oncologist about, etc.   We, as I am sure you as well, want a home filled with love, understanding, compassion and support but when we are dealing with a situation that we have before US, that recipe is off-kilter.

Bless you & your family!

Sean


Thank you, Sean.  I am so sorry that you are experiencing the challenges that you've described.  I have prayed for you and your family.  If someone could just assure us, and others in our situation, that within a certain time frame our loved ones would be more like themselves, personality-wise, we could deal with this much better.   I'm not asking for any miracles here, just a little reassurance that there may be some semblance of normalcy that will reenter our lives.  It would be so much better for our children.

Best of luck to you and God bless you and your family.

 Marie

 

On 6/3/2008 rollman wrote:

 

...... You as well as your children and husband will need time and space to recover from all what you have been going through. Some will recover faster than others and probably the styles of handling the experience will be different for everyone, thus try to keep an open mind and communication open, also find things that will make you, your husband and kids laugh.  Fun stuff that even for a minute will make all you forget about cancer and share a good laugh. Things will get better and as the time passes and you look backward into it and you will find that you did just great and that your care taking instinct did just wonderful, although right now you might not  believe so. Bess of luck to you and your family.  God bless you...

Sandra 

PD - WOW!!! six? you are a trooper... 

Thank you for sharing your thoughts.  It gives me a lot of comfort to know that someone understands.   When a family member faces cancer, the caretaker keeps  many thoughts to him- or herself.  I don't want to upset others more than they already are.   Even now, nearly six months post-treatment, I know my children are concerned.  They see that their dad is tired or not as diplomatic in his dealings with people and it affects them.  This is difficult for me.  I worry about my husband.  I worry about how he feels every day.  I worry about the future.  I worry about our children who do all handle this situation differently.  Most don't verbalize their concern and this also concerns me.   We keep our videos (VHS and DVDs) in the basement.  I went through them and brought many of the comedies upstairs thinking laughter is some kind of medicine.  Don't know if it's the best but it's better than nothing.   Thanks for your reply.

 

 

On 6/2/2008 2ndChance wrote:

Wow - you've both captured it beautifully if that is an appropriate way to state it.  It's that thought of lack of control.  What I learned after going thru a mastectomy and chemo is that I never had control in the first place - it was all an illusion.  I just go with the flow and continue to live my life around the tests and doctors.  Thankfully I am 3 years out but there's not a day goes by that I don't think about it.  I too had a strong support unit and my coworkers were very understanding at first.  But I think what people need to realize is that once treatment is over, you're not the same person and never will be.  So maybe an awareness of this by everyone affected by it would help tremendously.  We don't want sympathy or pity, we just want people to realize that things have changed. 

 

One thing you said is something that I have given much thought to.  It's that lack of control.  And you followed with a statement that you never had control in the first place.  I think this is true for everyone in every circumstance.  We don't have control but we have become comfortable living our lives in such a way that we feel we have control.  When that goes, we feel like the wind has been knocked out of us. - like we can hardly breathe/

You said you were three years out and that gives me much hope.  When the diagnosis of cancer is first made, every worst thought goes through your head.  Every imaginable symptom and horrible end result is replayed over and over in your mind.  So when you say that you are three years out, I know that there is hope.  But I know that you have worried every day throughout those three years.

Now, about your last comment which is the original question I have.  Do you feel that your change in mood is the direct result of the anti-cancer drugs administered to you or the result of your dealing emotionally with the diagnosis of this disease?  I think it must be both and probably varies from person to person. 

 

 

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About ecmb709

Caregiver
Head and Neck Cancer
After Treatment

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