re: now crazy and confused!

janet54
0 Recommendations

Great advice to my replies in dazed & confused and my thanks. I have a pet/ct scan scheduled for 11-26 and I now am tired,weary and pissed!! My onocologist came back from his vacation that I'm sure I paid for. No call,no nothing,a partner at the cancer center set my scan up. I hope they finally will know something,I want to know what this unrelenting pain is,I had nerve damage but had blocks,they burned them with phenol.This pain is nothing like that,in fact that pain is gone.I am having a hard time trying to 2nd guess this current crap.What are they NOT saying.My pain doc told me that the site that lit up was the pleural wall,my now gone tumor was situated at that spot,he seems to think I have something like pleurisy but the pain is more severe in my back,at my shoulder blade or in my case "angel wing" LOL.... a straight shot,front to back.Does imfammation show up on a pet as hot spots? The doc that set the scan up said there may be no need for a biopsy. I have tried to get in with a few oncs in my area but they want me to wait to long for an appt. I live alone,have no family really that can help me with this and it gets more difficult as time passes and I feel the heaviness in the "lit up" area and the pain is becoming so draining.I have 2 options should scar tissue be the cause-surgery or a morphine pump.It seems all I do is stay inside,cry alot and sometimes wonder if it's worth it. Honestly this pain is bad,I barely can get groceries.I don't go online much anymore and do feel stupid about my situation when I see so many others in far more ill-health than me. I am so grateful for all of the wonderful,caring people here. I wish I had the money to fly everyone of us somewhere so we could all have a wonderful party.......heh,gotta have something to think about.Being alone is very hard and when health issues come its hard to even think.Oh well,I will let you know what happens,if anything after the scans.
Love to all, Janet

12 replies

mariannebreathes

I have never had surgery but I have the same type of pain (radiation damage, they tell me) . But the real reason I am writing is because it sounds like you need a hug. (((((((((((((((hugs)))))))))))) No matter how many people we have / or don't have around us, this illness can be very isolating.
warmest wishes and heartfelt prayers,
Marianne

Munker

I am almost 3 months post op (upper right lobectomy) and have more pain now than i did 2 months ago. Sure is frustrating but Doc tells me it is going to take up to six months to feel "normal" again. I too was told that i did not need chemo by 2 docs but now i getting a little worried. I guess we are lucky but the pain is definitely draining . It must be really difficult living alone and going through this but we are always here to support you. I live with my husband and youngest son and I don't get much compassion. they all expect me to go 100 miles per hour like nothing ever happened!

lyaeger

Yes, inflammation can show up on PETs. I had '8-10' tumors supposedly in my right lung. In my case, when they finally went in and did surgery over 95% of what was showing up on the scans (CT and PET) was inflammation and dead tissue. It is really frustrating for me because now I don't believe what the scans and radiologist say.

Linda

PattyLynn

RJ posted a discussion regarding a cancer pain trial that he is to be a part of. I believe he said it was in MD. I do not know where you are located but you may want to contact him.

Do you have a hot tub or whirlpool you can use? The hot tub seems to help my muscles relax some and the pain becomes "duller". Good luck!

Pat

Khari

Janet,

Pain is such an awful thing--my husband will get unexplained (and as a result untreatable) pain in his neck and shoulders. Probably not related to the lc, but it makes for a bad day when no pain med will touch it.

Just wanted to let you know that I am praying for your pain to ease off and your day to brighten up.

Khari

1lung

I feel your pain!! I to have alot of pain 1 1/2 years after surgery!! I am married but I too feel lonely when it comes to pain and very depressed. I regret saying it but I told my husband a month ago if I knew it would have been this bad I would have died then had the surgery and I have meant that many times! I try to think more positive but it is so hard no one around me can relate and when they try it is soo off with no comparison.
I go to my pain specialist monthly. I have extreme nerve pain in my left arm and left rib area all around to my back. I also have some wing pain from where my insision starts but nothing like yours. I also have alot of pain around my left rib where the rib was removed to take out my lung and clear of my chest wall. I just found out the reason it craps so bad and has pain from the front to the back was because my muscle that is a big not has no nerve in it due from surgery. He said it is like having a unoperative hernia, and since the cramp cannot send out wave lengths through the nerve of pain it all happens in one spot and is very painful!! Any chance this could be what you have a muscle without a nerve or a dead nerve?? I am glad to know, for now I was told to keep my ribs wrapped in ace bandage and this is the third day and it has helped alot!!!
Stay strong it has to get better!! I know it is hard and I also have alot of side effects from my pain medicines I am on and have withdrawls at times when I go to long and it is a hard road!! People assume we do so well now that we have had the surgery and they have no idea what its like to try to make it through the day!!
Keep praying that is what I am doing!!

sassygma

Hey there .... i had right lower lobectomy back in march of 06 ... i have found a pretty good pain medication regimen that seems to work most of the time, i did one time withdraw myself, started having incredibly bad headaches and was going to the hospital just to have an x-ray of my lung for my onc apptmt, wound up in the er .... they found 2 brain mets. needless to say, i went back on my meds, and researched gamma knife surgery which i ultimately had and my tumors are shrinking away.

anyhow, what i have done over the course of this path is the meds, massage therapy and acquatic therapy!!! does it completely releive my pain? no! does it make it manageable, yes! i am divorced and live with my 25 yr old son, his 19 month old son, and awful 23 yr old g/f .... sometimes i'd rather live alone i think (i'll take the baby tho)

so, i try and tell myself, one foot in front of the other, one day at a time .... the pain i know i'm feeling, will pass .... and probably come back and some days i'll just lay in bed and cry .... and that's ok too. no more than two days tho, looking at trouble if i do that too much.

good luck to you and happy thanksgiving blessings

mary

EddieSD

Hey Lungsters;

I am not experiencing much pain. But I read quite a few of us feel alone and isolated... and get depressed...

I don't think anyone but we in it know what it feels like...

BIG GROUP HUG TO EVERYONE

Chemo Boy Eddie

BIRDY

Hi Janet, I just don't have the words to make you feel better but I sure do get where you are comming from.
I will be carrying you around with me in my heart today. I plan to go out to the flea market so bundle up !. Take care and please know that you are my Buddie...BIRDY

Ramona

I understand about being alone. It is a lonely journey. This site does often help.
Do rule out shingles. I had that and it felt like being stabbed in the back. Came all the way around to the front following the nerve path. I had only a slight rash. Sometimes there is no rash and then it is hard to diagnose. A lot of infor on the net on shingles. At least it is somewhat treatable.
Accupunture is recognized as helpful for pain. Costs about $50 per session, less than most things. My sessions last one hour. I go weekly. Should you want to try it, find one that is good and treats those dx with cancer.
I started with dx at a local hospital. Got pissed and switched to Cedars Sanai. Geographicly it is a hardship. It was the one best thing I did to go to a major cancer center with an onc whose specialty is lung cancer.

barbaray

Janet--

Yes, sometimes the isolation can hurt almost as much as the physical pain.

I am 77 years old and I too live alone. A great many of my friends and acquaintances have passed on, and I find it's not easy to make new friends with whom to have at least a tiny bit in common.

With age, in a youth-oriented society we become invisible. Not worth knowing. Oh dear, I don't want to hold a pity party here, but there is more than an element of truth in what I just wrote.

I don't really have any advice for you about the pain--but I can say I'm sorry and hope someone else on this wonderful site will have something more helpful than that. I'm just sure that'll be the case!

I'm having a scan on Nov. 26th also, so I'll hope for the best in both our cases.
Warmest regards and hopes for pain relief from

Barbaray

mitziger

Yes, I am just over 3 months post-op and I was told, I would have pain in different parts of my chest for months and it would move around and sometimes feel it all over it.. They were going to remove upper left lobe but felt like if they did that and the nodules on the right were cancer that would just be worthless...So at the last minute they decided on (left side wedge resection). Pain is worse when I take the chemo and I don't know why that is. Even before surgery pet scan and ct both thought it was inflammation...........Inflammation can definitely show up on pet scan. I thought i was taking treatment for nothing after my surgery and before chemo. I had had nothing but antibiotics and several places that lit up before, now had shrunk and looked even more like inflammation or granulomatous disease or fungal infection. Both the pet scan and the ct scan radiologists put on their report. Highly unlikely to be malignancy as inflammation was shrinking and what appeared to be something before looked like scar tissue. Even old pneumonia spots can light up. I didn't have near as much uptake as before and they only removed two nodules, one with cancer and one without. They gave me chemo as the doctors were not sure whether the nodules on the right were malignant or not and wanted to make sure no cancer cells got into blood stream.. I will not have pet until after dec 1, I am anxious and I am scared also. Do have a husband who is very good, when I don't feel good he tells me to rest. His first wife died of brain cancer and my first hubby died of lung cancer back in 77, we met 10 yrs later. I hope your pain eases up Janet, will keep you in my prayers. Yes it is no time to be alone but I have sat at my computer with tears streaming wondering what comes next and how will I handle it. Hubby is good but no one can know what you are going through and what is in your mind. God Bless all and keep your chin up

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