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jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Jim has recently statrted experiencing pain and wakness in left hip when standing after sitting. Does anyone know if this could be a sign that the cancer has spread to the bone? The pain in his left lung has intensified as well. His energy is gewtting less as well. On the plus side, his weight has finally reached normal.

Thanks for any help you can give. Debbie

 

 

 

 

phrannie51's picture
phrannie51
Posts: 3622
Joined: Mar 2012

Everybody here gets that "uh oh" thought when they feel pings, pangs, and unexplained pain....stuff that in our pasts we attributed to old age, or normal everyday wear and tear....hips are especially notorious for handing out grief as we age.  Just saying it's difficult not to jump to conclusions, but without a scan it's hard to know what's going on. 

p

Ladylacy
Posts: 463
Joined: Apr 2012

I know that my husband has been having pain in his leg and limps.  I too have wonder about his cancer spreading to his bones but he will not have a CT scan because he doesn't want to know.  It is hard to even get him to go to the doctor since he declined further treatment.  His energy level is low one day and better the next.  He was diagnosed with a reoccurrence at the cervial of his esophagus and spread to his right lung in February.  He gets out of breath when doing certain things, but doesn't have any problems breathing when just sitting or sleeping.

Sharon

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Sharon, Jim refuses anymore scans as he refuses any more treatment as well. I guess if I really thought about it I probably do not want to know either.  Just hate this sitting on pins and needles waiting for the next symptom. I hate thinking he will suffer. I hate this beast!

Debbie

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Debbie,

Kate posted she canceled her Dr's appointment and now I read that Jim refuses scans. Does he refuse to see his doctors as well? Even with one who is on pallative care or none at all, wouldn't regular checks to monitor the progress of the cancer be prudent? Wouldn't exams and drugs be necessary to help ease symptoms and pain as the disease progresses? 

I share your concern and sentiments and if it were me, for the sake of my loved ones and myself, I would want to know what's going on. 

"T"

Ladylacy
Posts: 463
Joined: Apr 2012

I wonder if you really would want to know in you were in their shoes.  It is a hard decision and as caregivers we must honor their wishes.  I don't know about Debbie's husband but mine is stubborn and I think the older men get the worse they are.  Sorry but true.  The only drugs once you decide no more treatments would be pain medication and our doctor just calls the prescription in but once they go to a stronger pain medication, I will have to pick it up from the office and thankfully it is only 5 minutes from the house.  And when we decide the time is right, hospice will be called in.  When my husband refused further treatment, our H&N specialist said then to call him if we need anything.  And the oncologist that we were using at the cancer center, basically washed his hands of my husband.  Never was happy with him.  Our local oncologist and primary care are now who we are in touch with.

Sharon

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Sharon,

It's a difficult subject to discuss. When I've breached the subject with Marcia, she refuses to even discuss it. I've come to respect that and keep my thoughts to myself concerning it. In my heart I know what I would do if presented with the situation of pallitive care. As a victim of this horrid disease, the thought has occupied my mind more than I will admit to anyone. What pains me the most is what Marcia and my family would go through should fate take me on that path. 

I totally agree about stubborness. I was stubborn before all of this and I'm moreso now. Even during treatment, I fought some aspects tooth and nail until I was too weak to fight anymore (getting my PEG was one of them). I was so weak by the time I rang the bell that I just couldn't argue anymore. My team refused to release me until I got it. It was either that or hospitalization. I wanted to go home more so there you go. 

However, what I cannot do is put myself in your shoes or the shoes of any caregiver or family member. I see first hand what this has done to Marcia. I know how my behavior and seeing me get so sick has affected her and it pains me greatly. I know she was doing everything in her power to help me yet in the cloud that I existed in, I often didn't think before speaking or acting. The reactions of my children, family and friends play much into my thought process as well. My Mom, bless her heart, can barely speak with me as it pains her to hear my voice or know I am hurting. Marcia calls her on a regular basis and fills her in (buffered of course concerning details). The same with my Father. He has gone through some serious health issues (all happening at the same time I was going through treatment) and I hate to tell him the whole truth as I hear the pain in his voice when I do. 

So for me?... It's interesting. Having faced my demise several times in the last five years has given me a different perspective. While I'm stressing a bit concerning my upcoming scan, I'm not in a panic mode, nor do I freak with every ache and pain I now feel (and there are lots of them!). My PCP put it like this... Surviving has become my MO. By all means, I shouldn't even be here based on what happened to me.... 1st heart attack in '07 at 47, three blocked arteries (main coronary artery at 95+%), triple bypass... 2nd heart attack last October and 99% blockage, three stents and now cancer. I do know this, there's a reason God has kept me on this Earth. I've not quite figured it out yet but I have a sense of peace I haven't had before.

I just hope I can offer that peace to those around me.

"T"

  

 

 

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

T, he continues to see the oncologist, we are just in between check ups. Jim also has pain meds but is very sensitive to all pain meds so only uses if the pain gets unbearable. To him quality of life is more important than length of life and I will honor his wishes. I still pray for a miracle but also for him to not suffer. I thank you for your support and prayers. Debbie

Ladylacy
Posts: 463
Joined: Apr 2012

I hate this beast also.  I hate seeing a once strong man who was able to do anything now having trouble doing simple things.  Yes he is 76 but up until all this started 3 years ago, he loved the outdoors, camping, building birdhouses and selling them, yard work and traveling.  Now he only works in the yard when he feels like it, won't ask for help from our sons, won't tell me how he feels, can only get nutrition thru a feeding tube which probably needs to be changed but don't want anyone going down his throat and esophagus since there is a large tumor at the cervical of his esophagus going down his esophagus.  Since he is a laryngectomy this doesn't affect his breathing and so far the lung cancer doesn't either. 

When friends ask me to meet them for lunch, I won't do it because I don't want to leave him alone for any longer than necessary.  Each day I think is this going to be the day that we need to call in hospice.  Thankfully, his pain level isn't too bad -- at least that he tells me.  He does have pain medication but only takes half the dose he is allowed because he said he doesn't want anyone to think he is addicted to them and the pain medication is not as strong as a lot of pain medication.  Funny to a point but then again not so funny.  I tell him to take his pain medication and not worry about others think.

Sharon

 

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Innocent

katenorwood
Posts: 1808
Joined: May 2012

Alot of the above posts hit home for me.  I started this journey wanting to know everything that my DX entailed.  First because it's my body.....second because it is sooo rare and not much on info. or advice on tx's for mets.  I think we need to step back, and re-evaluate why we started to fight in the beginning, and how far we said we would go....for instance tx's that would lessen our quality of life.  Boy I'm tired some days of the fight....and I'm frustrated that I'm tired and worn down.  But after listening and learning from others....I've changed my thinking.  I have accepted some things I can't change, but decided to continue to explore my options.  I have been in the position of being a caregiver to a cancer patient....(my Mom) and having to make the doctors admit to her that the tx's she was suffering through wouldn't save her life, that they were pallitive.  It broke my heart....but I stood shoulder to shoulder with my parents and gave Mom what she wanted and needed throughout her transitioning.  Maybe that's why I'm kinda in limbo myself.....it was only one yr. out from my Mom's passing that I was dx'd with adcc.  I know we give our families (caregivers) almost more than they can handle...and we break your hearts with some of our decissions.  I wish I could answer your question on more mets.....but only an onc. could do this.  One thing I did learn from my Mother, was not to look at her failing little body day to day.  But to see her....and her strenghth, and love.  It helped her tremendously to know I saw HER... NOT her cancer.   I don't know if this explanation helps a bit ?  Know my prayers and thoughts are with you and Jim.  Hugs sent !  Katie  

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Thanks Katie, I agree with a lot you are saying. I tend to want to know everything but Jim doesn't. Sometimes I ask the oncologist a question Jim doesn't want to know. He is more a I would just rather live my life and not know. I am honoring his wishes to not seek other treatment. He has chosen quality over quantity. All of a sudden he has started having pain in his right lung as well. It seems as if everything has started speeding up and I am scared. Debbie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I had two instances of extreme increase in pain:

1) The first was that a tumor impinged on a nerve. The tumor was shrunk with a week of pinpoint radiation. And the pain was releived. (The tumor is on one of my ribs and it impinged on a nerver.)

2) The second case is apparantly an infection. Besides the pain, I was running a 101.5 fever. I am currently taking antibiotics. Although it is too early to say for certain, I think the antibiotics are taking care of both the fever and the extra pain.

So, I guess the increase in pain levels can have many sources. I know that's not very helpful. Rick.

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Rick, it is helpful to know that other things can cause these pains. Case in point, the nodule that is causing pluerisy on his left lung. I guess each pain Jim gets scares me and reminds me the cancer is still there and growing. I see the deteoration in energy and I become sad and start thinking, "What am I going to do without him?" My sister, who had a stroke on Easter, used to be my sounding board since she lost her husband to lung cancer. Now she is not as clear mentally so I have no one to share my fears and tears with anymore. I guess I just needed to shed some concerns and get some encouragement. Thanks for "listening"   Debbie 

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

anything for you, but hopefully send you some comfort.  Reading your words puts a lump in my throat and tears in my eyes.  You all are in my prayers and miracles DO and CAN happen.  You will always have people here to "listen".  Always. 

tesa's picture
tesa
Posts: 120
Joined: Feb 2011

Debbie,

I lost my mom to this evil disease in early 2012.  During the course of her illness you often gave me encouraging words on this board. I know about the loneliness when you have no one to talk to.  Sometimes I think I'm losing my mind, I so miss my mother. I'll message you my number if you ever need to talk. I'll listen and talk as long as you need, because I know about the fear and the unbearable pain. Life is sometimes just so very sad.

I will keep praying for Jim.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

It's hard for me to respond sometimes when I see posts as these....

I feel so deeply for everyone here, you are family... It always tears a piece from me.

But I do want you to know that you both are in my Thoughts and Prayers and will continue to be....

John

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Thanks John everyone on this board is fsmily to me too. I would not be able to survive without everyone.

Blessings, Debbie

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

No matter if you are the actual warrior or caregiver.  I watched my dad die of acute Leukemia ...layed up in bed the last week looking a holy mess and telling me he was ready to go.  The efforts he made valiantly to stay alive for four months when he was given 30 days make me wonder if they were more for my mother than him.

 

My brother died of a brain tumor. Fortunately for him (he says) since he had no kids and only his wife he was okay to go.  Two brain sugeries left him not able to talk or engage in conversations hardly at all..he was there 100% alert, just could not hear or speak words in correct order to engage.  He also could not read (which he loved to do with his theology books).  He loved to take pictures and create things on his computer...could not do that either after the 2nd surgery.  Given only a 4% survial rate after 4 years, he declined further treatment.

 

Then there is me, stage III BOT cancer ....I had to watch my five beautiful children stare at me each time they saw me (many of you may remember I stayed in a 19foot RV on the premises of my cancer center since I lived 110 miles away in a small town. My wife and 14 year old daughter would trade off and come down and ensure I was fed through a tube, made it up to my rad treatments, give me medicine and just in general watch me "go through heck".  I had some pretty bad burns, horrible rash and lost 70lbs even with a peg tube.  I remember one night after treatments I was in bad shape, ran a 102 fever, shaking all over ...barely made it back to the bathroom. My wife was at work and my daughter was in a full out panic....I was soooo tired, soooo exhausted from not just the treatments but the pain of having put my kids and wife what I was putting them through ....that night after my daughter called mom "to get home quick" I remember her helping me get back to the bed from the bathroom...she got me all tucked in, crawled up in bed next to me assuring me mom was on her way and rubbing my head ...then out of nowhere this huge sigh came from my daughter and I heard her say under her breath "I just need you to be well Daddy, I just need you to be well".  They say a picture is worth a thousand words, well that sigh from my daughter spoke a thousand words.  I just remember not being able to comfort her I was so sick and to tell her all will be okay ...all I could do was whisper a prayer to the Lord (which I did from my gut) and asked Him "no matter what happens to me, please, please take care of my family" .....I believe He heard my prayer.  Flash foward today and I'm cutting 6-8 cords of wood, hunting, spending wonderfully precious time with my kids ages 2-14 and my wonderful wife ....

 

I told my daughter, no matter how I die and no matter how I go, I will always fight like mad and pray like mad to stay with you, mom and your brothers.  You all are my inspriation, and no matter if I go like my dad /brother did or if I am blessed enough to die in my sleep at a ripe old age, none of that matters because the love we have shared and the fun times we have had, the life we have lived has been special and NO DIESEASE and NO ACCIDENT no matter how ugly will ever fade out that beautiful life we lived together.  I promised her I would do all I can to stay around as long as I can, but that everyday we have we now realize is pure gold and a bonus and let's not forget that and to be thankful to the Lord  :)  We can only die for so long and then (we believe this in our family) we are in the presence of the Lord until we see our family again one day.

 

I peronally plan on living to 101 ...I joke often to my wife and boys that if I ever see the end coming, I will just go out hunting in the woods and "not come back" ...they all laugh ...and more importantly I pray for so many on here for their pain, fears, sickness, frets and troubles.  I pray for healing, but also peace and comfort no matter the path.  Tonight I whispered a prayer "Please Lord grant my online family on CSN healing, more time, but if their time is coming to a close, no suffering and a peace that passes all understanding" .....I care about all of you

 

Tim

Wife: Jennifer

Children:  Georgia 14, Kohle 12, West 9, Jace 6, Raylan Dennis 3 (named after my older and only  brother Dennis who died the same year as my dad, 2011, both from cancer)  

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