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fluid on lungs?


rinksgal

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I haven't had time to write on here lately, although I have taken the time to read a few post. With Darrell now on his 2nd week of radiation and has his first round of chemo done. (6 days of cisplatin and vp16)

There has been so much stuff going on, I feel as if I haven't had the time to breath!! We live on a farm and have hogs,(sows, baby piglets, turkey, chickens, and goats not to mention a pregnant cat, and 1 dog and 1 new puppy which is in the picture, Darrell has always wanted a chihuahua, so I encouraged him to get one. It brings smiles to our faces when nothing else would have!! Hes spoiled rotten too!!!! I feel like sometimes I'm the only one doing anything!! His kids are 20, and 18, and pretty much worthless when it comes to helping! But I'm surviving!! I know it sounds like I'm whinning!

Anyways Darrell has done pretty good!! Hes been really tired and as he puts it blah feeling. No engery!! This weekend he developed a new fever which spiked up to 102.7.. We didn't know who to call, we tried about 4 different phone numbers and we got no one.. We now know what to do if it gets over 104.5 they gave us a number to call and also told us to go to the ER if it happens again. He started with a new fever tonight, so far only 101.1 So we are watching it... Hes started coughing up stuff, which they said he would. I guess I should start at the beginning. We kept being told different things. The oncologist called last Thursday on our cell phone and told us he was negative for lymphona, and told us he had 3 tumors and told us their sizes, he's a foreigner so it was hard for Darrell to understand him on the phone. He also mention the place on his liver again, and said he has fluid on his lungs. Darrell asked him twice through out the conversation if he thought the treatment was gonna take care of it. and the doctor responded both times with the same answer saying that we will just continue the treatment as planned. By him not giving Darrell a direct answer, he took this to mean that it wasn't looking good! So for that next 3 days he was so depressed and no matter what I did or said I couldn't even get a smile on his face. Plus then he ran fever all weekend and started coughing up stuff.

Today we saw the radiation oncologist, and he had said that there was several lymphnodes involved. So we weren't sure if the tumors were separate from the lymphnodes or what. So we asked the Radiation Oncologist today and now we know the 3 tumors are in his lymphnodes. and that he doesn't have separate tumors outside of them in the chest. But he also told us that he has a place on his liver that they are watching. It being 1.5cm x 1.2cm. We know from his original ct scan the "spot" he had before surgery was 7mm.(with them saying it was "JUST a cyst" So if its any cm at all wouldn't that mean it had grown? I don't understand why they don't give you straight answers. I told him that Darrell feels like if it is in his liver that he feels like he doesn't have a chance at all, and he said, "well, it is bad to be in the liver" and left it at that, except for saying in a couple weeks or so they will check everything again. I'm afraid to pinpoint them down too much, due to the fact when Darrell hears bad stuff he gets so depressed, and I believe he needs to stay positive in order to beat this thing!!! The radiation oncologist told us if we have "ANY" questions at all, just ask to see him even if we weren't suppose to see him that day! We both really like him!!

I guess one of my main questions is this...The radiation oncologist mentioned that he had fluid in his lungs and they didn't know if it was malignant. What would that mean???? I was gonna question him about this, but he was talking and I didn't want to interupt, and then it slipped my mind because he started talking about the liver...Darrell brought this up at home. I thought maybe I'd heard him wrong, but Darrell heard the same thing. Can the fluid itself be cancerous???? Next time he coughs stuff up they want him to look at it to see what color etc.... he hasn't before. I know I have rattled on and on and I don't even know if I make much sense anymore. I'm holding myself together better without crying everyday, I guess my own medicine has kicked in!! For a while I thought I was gonna lose it!!! Thanks for listening to me babble!! But would appreciate any information anyone could give me on the fluid on his lungs. Thanks!!

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Sorry to hear about your troubles. Demand to know exactly what type of tumor he has, even if they have to send the biopsy to mayo or somewhere more advanced than they are. I hope the drugs he is on arte working too!! The fluid on the lungs cannot itself be cancerous. What it means is if there are any cancer cells in the fluid, that the tumor has progressed to that area. This is not uncommon, because the usual reason lung cancer and other cancr patents end up with fluid on the lung(s), is because there is a tumor blocking or obstructing one of the pulmonary ducts. They call fluid on the lungs a pleural effusion, nd if it gets too bad, they will drain it in the hospital with a machine called a 'pleura vac'. After they drain the fluid they test it for cancer cells.

I hope they figure out what's going on.....

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Rinksgal-

Sorry to hear of your on-going worries. I'm glad that at least the meds for you have kicked in a bit; I think it sounds as if you are coping VERY well with all the work, pressures, and concers. Bless you.

Just a thought...you might take a notepad and pen with you to appointments with your questions listed and a space left to record answers. This also helps to be able to jot down points you want to discuss that come in the course of the meeting with the onc or radiologist. A tape recorder is another good tool. I always ask for my specialist's chart notes a day or two after the appointment, when they have had time to transcribe them. That way I can read what the doctor has written and make note of any things I need to have further clarified.

Hang in there, baby! All the animals sound like a lot of work, but they also sound like LIFE!!!!

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When I looked up pleural effusion online it says its in the lining between the lung and whatever. His is in the lung, is this possibly still pleural effusion???? I'm so confused....If it is why didn't they mention this? I have read other post about this previously, but I don't remember much about it. I will search the site now for information on others with pleural effusion. How does the fluid get on the lung to start with. I know adenocarcinoma is a mucous related cancer. I just don't understand all of this.. I get so aggervated!!! Hell 2 months ago we thought they got it all, and they said no treatment needed and hes a very lucky man and now with in a month he runs fever again and we find out its back and in his lymphnodes... Not to mention he had a 7mm "spot" on his liver,in the original ct scan.(which the report reccomended a mri, which no one did) now its bigger but they still act like they are just gonna watch it. I just don't get it. would they treat their own family member in the same way????? or would they do all test possible even if insurance wants you to follow a certain route??? Is it all about money???????????? To HeLL with all of them!! I'm so fu**ing mad at the moment!!! I just don't get it!!! If it was there within 6 weeks after surgery and all 9 lymphnodes they checked were negative for cancer how can this be happening now??? I read online that it can travel through your blood stream too, and I asked his oncologist about that, he said yea, but its not likely to spread that way with his lymphnodes being clean...but nothing is 100% with medicine!! Well no shi_, because apparently Darrells must have been there or we wouldn't be going through all of this shi_ now!!!!!!!!!!! I'm sorry I sound so angry but I am!!!!!! hell a month ago they acted like nothing to worry about and now its in his lymphnodes and possibly in his liver, which they of course are watching!!!!!!!!! Hell I wonder am I gonna lose this man that I love so damn much or does he have a chance to beat this horrible disease!!!!!!!!!!!!! I hate the word cancer more than I've ever hated anything in my whole entire life!!!!!!!!!!!!!!! :evil::evil: My whole life will be destroyed if I lose him!!! I will have nothing left!!!!! My own kids are grown and have their own lifes, what will I have left!! Don't get me wrong I'm not counting on him dying!! I will fight with everything I have in me and then some, but I just don't get it!!! So tell me if hes got this pleural effusion, how bad is it?? I NEED to know??? So if it means its spread to his chest outside of the lymphnodes then its just a matter of time till there are tumors there too??? Is that what your saying Johnathon??? You say progressed to that area, don't be nice, tell me do you mean tumors could start growing in that area?? If so I NEED to know!! Or with chemo will this prevent this from happening? and How often does chemo not work, or radiation not work??? I mean by now I know he has an agressive type cancer.. Its very fast growing!! We have decided that poorly differentiated meant a hell of lot more than we realized!!! Hes had a bad feeling all along about this, even when they said no treatment needed!! What a fu**ing joke!!! I'm sorry for the provantity, hopefully this site bleaps it all out!!! I just don't feel that I can express my anger in any other way. I hope I don't offend anyone on here!!!

I'm so tired of being nice and listening to people witch about stuff that doesn't matter!! I WISH I had their worries!!!!!!!!! I'm not losing it, but I'm getting so damn angry!!! I hate seeing what this stupid disease is doing to the man I love!!! and I feel so dang helpless!!! Theres nothing I can do to make him feel better!!! Theres nothing I can do to make it all go away!! I wish to god I had that power!!! I would wipe this horrible disease from everyones life!!!!!!!!! I don't want to lose him, and I don't want and I won't give up!!! CAN HE BEAT THIS??????????????? I'm scared of that answer!!! I wonder in mind if he doesn't win, how long will he have? 6 months, 3 years, 5 years!! Hell his oldest son will be a senior this year, will he make it to see him graduate??? Darrells own dad died when he was 19 and he doesn't want the same thing to happen to his own kids!! But does anyone know the answer to this??? I doubt it.. Can they really tell us whats gonna happen??? I know they can't because everyone responds differently to treatments, and whos to know how darrell will respond to his? I wish I knew the answers to all of my crazy questions and I know I"m babbling again, but I have to get this anger off of my chest or I will expode!!! Again I am sorry for my crazy actions on here, but I know all of you understand and there probably isn't anyone I know that would understand everything I'm feeling!!!! Sorry!!!!

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I just read on a site on the internet that the symptoms of pleural effusion are:

shortness of breath

chest pain

hiccups

cough

rapid breathing

well Darrell has all of them except rapid breathing, and I haven't noticed this, and he hasn't complained about this.... I thought about telling him what I read on here about maybe it meaning he has pleural effusion, but decided against it... I want him to stay possitive... and I"m afraid now that hes back to not being so depressed that if I mention what you guys told me that it will make him take another nose dive...I just don't understand why the doctor didn't mention this to us as being a possibility??

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Boy, I sure can understand your being angry. I'd be the same way in your shoes. Tiny's suggestion of taking a note pad or recorder is a great idea. I do that and ask for all the pathology reports, scan results, lab test reports and anything else I can get my hands on. You never know what will come in handy and it's better to read these when your home and can look up terms and come up with your list of questions for the next doc visit. It's all very confusing and we don't have medical degrees...although I think I on my way to earning one!! Your doctors should be willing to take the time to explain the things you want to know. Tim doesn't seem to absorb everything at a visit and is always surprised when I bring something up the doc said. Sometimes I think he hears what he can deal with and blocks the rest out. Maybe it's easier in small chunks.

Keep your chin up. This is an impossible thing to deal with. We all just muddle our way through with the help of each other.

Annie

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Its so hard I know. My dad has fluid also. I think we have a need to learn all we can about this monster that grows inside our loved ones. I get so overwhelmed because it is so confusing. If the doctors cant figure it out how can we. I think sometimes we need to take a break from researching, then maybe go back when we are refreshed and can concentrate better, thats what I do and it seems to help. My dad was recently in the hospital, you would not believe all the different opinions we heard in there. Different doctors would come in and tell my dad different things, its crazy I know. Try to hang in there. If it helps you to vent here then by all means VENT.

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I, too, understand your being angry. First at the disease, and second at the docs who aren't telling you what you need to know. You are doing all the right things: seeking out the facts, and taking care of your beloved. I'd also suggest a second - independent - opinion. This means not the same hospital, not the same group of docs. Current practice is to give chemo after surgery; it's been shown superior, even when the surgeon believes "they got it all." (A phrase I personally despise.) :evil:

As far as pleural effusion: The lungs are lined by two layers of tissue called the pleura. Normally, they adhere tightly together, separated only by a thin layer of lubricating fluid. It is this adherence that keeps the lungs expanded normally. Inflammation, as from a tumor, can cause fluid to collect between the pleura, impairing breathing. Tumor-related inflammation can also cause the same process inside the lung itself. Symptoms are virtually identical. To further complicate matters, many other processes can cause these symptoms, such as pneumonia. So it sounds like Darrell needs a thorough work-up to sort out the cause of his symptoms. Treatment, of course, is very different if it's cancer than if it's pneumonia.

Tell his docs that they are giving you conflicting and unclear information. Be blunt. Ask what factors are leading them to think one way or another. Tell them you want them to talk to each other and come to a consensus about his diagnosis & treatment. They do want to do their best for Darrell, no doubt, but they may need to be reminded of the patient's perspective. You can do it! Your anger contains lots of energy - use it!

Best wishes to you, Darrell and and all the lovely creatures!

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Hi. This is my first post here.

I have Stage IIIB adenocarcinoma, and it was the fluid on my lung that sent me to the doctor in the first place, though I didn't know what it was at the time. Severe shortness of breath and a non-productive cough for about a month led my doctor to send me for an X-ray one afternoon. Doc called back that same day, said my X-ray showed "complete white-out of my right lung"!, and told me to go to the nearest emergency room for immediate evaluation.

Long story short, I was in the hospital for three days. The first full day they did a thoracentesis (removing more than 3.5 liters of fluid through my back) and some fluid was sent to pathology. It was determined to be a "malignant pleural effusion." I had another X-ray and a chest CT scan immediately after procedure. After the fluid was removed, I felt great. Problem is it took only about a week for the fluid to begin to accumulate again.

I'll be happy to give you the total blow-by-blow, but let me stick with the fluid issue. The first thing my oncologist ordered for me was a surgical procedure called "pleurectomy," or removal of my right pleura. Turns out one of the top thoracic surgical groups in the country is here in central NJ, and they did the procedure using "VATS", or Video Assisted Thoracic Surgery. Four small incisions were made in my front and back chest area, where a video camera and surgical tools were inserted. The surgeons perform the operation viewing your internal chest through a video display. The whole thing took about an hour.

I was in the hospital for three days, while a chest tube drained the incision. I was given plenty of painkillers, which did the trick, and I used them for a couple of weeks. The doctors all said that without the surgery, I'd have had a chest tube permanently, which is no fun. The surgery was completely successful, and my symptoms are gone.

I've just finished my first complete cycle of chemo (Taxol/Carboplatin, 3 times every 3 weeks), and I'm scheduled for a CT scan next week to evaluate the results of the chemo thus far.

I hope this helps anyone dealing with pleural effusion.

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Barbara...

Your story is indentical to my husbands. One day he had shortness of breath and we went to the emergency room where they diagnosed it as pneumonia and gave him an anit-biotic. When it had not cleared up, I took him to my Dr. and she immediately sent him for a Chest X-ray and from there we went directly to the emergency room. It was the day after christmas and of course the pulmonoligist was away, so they kept him over night and the next day they did the thorancentisis and drained 2 1/2 liters of Fluid...they tested the fluid and to our shock (he had never been sick a day in his life) it was malignant. His symptoms immediately resolved and we went to see the oncologist that Friday. She immediately set him up for a VATS Pleurodecis..they once again drained the fluid and blew in talc to seal the two linings of the lung together..he has had no problem with breathing since. He did not have his pleura removed..wish someone would have done this for him. He has had 6 rounds of Carbo/Taxol, which shrunk the tumor and his lung re-expanded 100%, but after the 4th treatment they found mets to one vertebrae and a lymph node under his arm and one in his abdomen. Tim just had 6 of 10 rads to his vertebrae today..4 more to go and he started Iressa on 7/10. From what I can feel..the lymph node under his arm has gone done..praying that it is just not my wishful thinking that is making me feel that...Other than extreme fatigue and a bit of diarrhea, he is doing ok....

I know the feeling of wanting to make it all go away all to well....I want to fix it and I can't and I do not want to lose my husband. We have been married 16 years this September and I want to be able to celebrate our 25th ! We have not had enough time together....

Hang in there....and never ever give up !

Kathy

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Hi Rinksgal,

Each person's body is different than anothers when dealing with cancer.

the only way to know what is going on inside Darrell is one of two things as i see it:

1. Call your radiation onc because you both seem to like dealing with him and ask him all your questions, - - from your LIST. He has all of Darrell's reports in his files. If he says he can't answer all your questions, ask him who can and contact that Dr to find out these answers. If you cannot understand the dr because of a language problem, talk to his associate if he has one.. I assume Darrell has given permission for the drs to talk with you....if not, you need to get him to sign for that.

2. If you still are not satisfied, find a new dr for a second opinion and do it fast. Cancer can't wait. The sooner the action is taken the better are one's chances.

We can all guess what it might be, but hey, don't go by that. Go by the medical records....

I have been through cancer a lot and i can tell you this, - - it is sneaky. I have been dealing with it as a caregiver, since 1971 and it hasn't changed much. one day its here, the next it looks to be gone, the next it's back, and then gone again, and etc. Drs are still trying to learn from patients how cancer works. What treatments help which type of person and what doesn't. It is all trial and error until they come up with What is the Real Cause of Cancer and how it goes through one's body so fast and not through anothers so quickly, how some meds work for some and not others.....

Yesterday, my Buddy started a new chemo for the liver mets that showed up a few weeks or so ago. I cannot get mad or upset because this happened. I know only to well, being through it so many times, that this is how cancer works. We can only hope that the chemo's, Iressa's, radiation's or whatever else there is, takes hold one day and our loved ones start to mend. If not, then we help all we can to make them as comfortable as possible and not worry about ourself, for we will make it through.....it does not do any good getting upset as you are right now. we cannot think properly when we are out of control. We MUST stay in control.......level headed at all times....tears can flow, but the mind must be thinking straight...God Bless

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I want to thank all of you for your information!! This site is so helpful to me and I'm sure to many others in my situation!! We went today again for his radiation treatment, He had me ask his nurse while he was getting radiation to see if we could get a copy of his most recent ct scan that they did a week and a half ago.. I got so mad at that nurse I could have choked her until her eyes popped out. I didn't let her know this of course!! But she said she couldn't release that information to us without the doctors say. Because I have no way of knowing if hes talked to you guys about the results. I told her he did so just yesterday. But she continued her little speech about legal stuff!! and how she has to get permission from the doctor and only then can she give us a copy of it. She said he was in a meeting at that moment. Plus we really needed to go up to a different floor and sign something stating we wanted his medical records, etc.... and if we wanted them sent to a different doctor then she would fax them for us. She was a real witch! She also informed me that she couldn't give them to me anyways!! :evil::evil: I told her well thats not a problem because he is here, he just wanted me to take care of it for him while he was getting treatment!! I ended up telling her fine then you get permission from the doctor and then tomorrow when we are here we will pick it up.. So anyways thats whats suppose to happen! I told her before I walked away that, this is sad, aren't we already going through enough without having to fight people just to get a "copy" of his written report of the ct scan, his own personal records of his body!! I walked away in tears!!! I told Darrell about it as we walked out of there! He wasn't very happy about it either, but told me it wouldn't do any good to get upset!! I've never had any problem with getting stuff for him from anywhere we've been! Most people have had him sign a paper putting a list of names of people that any of his information can be given to!! But the nurse's at the james says he has to give me power of attorney before they can do that!! I think this is a bunch of crap!! I told them like he wants to do that, why can't they just give us a paper for him to sign like everyone else!! Don't people only give power of attorney to someone if they can no longer take care of their selves??

You know it is sad we are already going through so much stuff!! Like we need somewhere else to go or something else to bother with!! I think they try to make our lives more miserable!!! I am there with him every single day!!! We drive an hour to get there and an hour to get back home!! he feels like crap and they want him to do more. When all they have to do is make a dang copy of ""HIS" ct report!!

Sorry I know I "VENT" alot on here, and I realize it does no good to get angry, but sometimes its so hard!! I guess I'm angry at the disease and that they can't do more than they do for people with lung cancer!! and then the doctors, I know they are only human, but sometimes I think they are all alike in some ways, Its just a job they do everyday of their lives. I'd like to think they are in it because they have compassion and want to make peoples lives better! Maybe most of them are!! its just hard watching someone you love be so miserable!! I appreciate all the information on the pleural effusion, and I plan to ask them about that fluid at the next doctors visit...

Thanks!!

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It's the law that Darrell can get a copy of ALL his reports. There might be a small fee if his file is really huge. I was told about a fee, but they didn't charge me. They also didn't send me my complete file! Every time I saw a doc I asked for a copy of whatever had been done (except fot the ongoing radiation---don't even know if they have daily reports. I wouldn't think so). At the Cancer Center where I was treated all reports are put into the computer that all drs. access. I had my oncologist print out the report by my surgeon that I had never seen! (Surgery was Feb 2002!!!)

You & Darrell need as much knowledge as possible to fight this monster.

I had found on the web that chemo after surgery (especially when chemo preceded surgery) was NOT recommended, that studies had shown no benefit. To me that made NO sense. I was going to demand that I get chemo, but my onc was one step ahead of me and scheduled 2 treatments. Researchers have since said the earlier studies were flawed and now they recommend chemo after surgery.

I get tired of hearing about flawed studies. It has been stated that routine chest xrays for smoking patients does not change mortality statistics. Does that make any sense? No it doesn't! Look on this forum and see how many people have been diagnosed w/an early case of LC just because they had an xray looking for some other medical problem and discovered that they had LC! Now, I'm told that those earlier studies are flawed!!!!! Duh!!!!! And they now are doing further studies (and wasting the limited funds for LC looking at something that anyone with a half functioning brain wll acknowledge as a given!!!!)

Boy, I cannot fault you for getting pissed! Now, calm down and do your homework and fight for Darrell!!!

JudyB

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Hello Rinksgal,

I used to be a gov worker and I know where that nurse is coming from. With all the new laws now, the employee has to watch his/her steps. Even though you want to help a patient with the info you have right in front of you, you just can't. She was right as far as not being able to give out that info without the dr's approval probably. That may be one of their company rules, - - and her job would be on the line... but now with the new rules in place, by your s/o putting you on the list at each medical establishment, there should be no problem.

Some employees aren't very tackful at times.i grant you that. But it sometimes is a two way street.

Sounds like you will know more today....hang in and keep the blood pressure down on yourself.....he needs you.....

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Norme, I know I'm getting all worked up over stuff I shouldn't be, but today Darrell asked for them, well guess what? That nurse forgot to do her job, and of course the Doctor was in another meeting. Well another nurse informed us that we wouldn't be able to understand the report anyway with our lack of knowledge. That kind of upset Darrell and he told her well what we don't know we research till we do understand!! But anyways the other nurse apolizged and told us she personaly will take it up on herself and have the report for us tomorrow, She said she was sorry the nurse from yesterday didn't take care of it. Darrell asked her point blank, does the report say something he didn't tell us and doesn't want us to know, but she explained that that wasn't the case and she was sorry if it made us think so, but then explained as you said about the laws and rules, but damn this is getting old.. Ya know.. So we'll see if they have them tomorrow... And we have been nothing but nice to them, except for a couple of statements after their rude remarks, like we are stupid. I even told the nurse today that we didn't want to be a pain, and I hoped we were coming across that way. She said she understood completely!! Thanks for your in put..it is appreciated!!

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Let me apologize up front for the alphabet soup I'm about to throw your way - but knowing it should help. There is a new law in effect (as of April 14, 2003) called HIPAA, or the Health Information Portability and Accountability Act. HIPAA places strict penalties on health care providers who give information to anyone without the patient's written permission. In the language of HIPAA, your name, diagnosis, tests, address, phone etc. are called PHI, or protected health information. You should have received a "Notice of Privacy Practices" (NPP) that describes how the hospital handles PHI. The law requires that the NPP tell you how to go about getting a copy of the medical record, how to request changes to the medical record, and many other things. Read the NPP, even though it looks like just another of the thousands of papers you've signed along the way. If you need a new copy of the NPP, ask. They should be readily available in all departments.

As far as the physician approval piece, it's probably the hospital's policy, but it is definitely not the law. Usually hospitals put in these policies to protect themselves from the perceived risk of patients reading things in their charts and not understanding them. (A famous misinterpretation is: "Patient is S.O.B.," which does not mean the physician dislikes the patient. :) ) Norme is right that the nurse might get reprimanded if she defies policy.

Bottom line: Darrell and you have every right to see the test reports, and to get copies for your files. You may need to send in a new request each time he has a scan, sees a new doctor, etc., but it will be worth it.

Stick with it! You'll both make it! - Teresa

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See, there is always someone on this board who knows the exact answer. This sure is a great place....

P.S. sure hope you got Darrell's papers today....it's Sat and i don't think he will be in any meetings. I probably would of had his meeting interuped. Oh sure, norme......

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I like the way you think Norme. Darrell actually said when we left that he considered telling them that, or waiting till the meeting was over, but he just wanted to get home...

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