Linda P. Where are you?
Comments
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Yes, Linda we are...lindaprocopio said:You guys sure you want the blow-by-blow on this? Here goes:
I can't believe how quickly things are rushing along, and hope to have everything settle down soon. I had a hospital bed delivered yesterday, which seem SO dramatic as I have no trouble making the stairs or getting around. But it is so difficult to arrange stacks of pillows so my legs stay raised, plus more for my upper body if the acid (not bad yet) seems to be rising up, plus small pillows to provide support for my lower back and my ascites belly. I think the bed will help and I plan to make it up with a beautiful comforter and lots of pretty pillows and NOT to stay in bed all the time. But it sure makes a statement that someone here is seriously ill here.
The ascites fluid is already coming back, but they said it could drained with paracentesis early next week if it gets worse. Getting that drained makes me feel better than any of the ga-zillion pills I take daily, which I think are causing a lot of of discomfort. They have me taking Zofran twice daily, and Senecot (stool spofteners/laxitive) every morning and before bed, and I have been trying it their way, on a schedule, but can't imagine taking the Oxicodone every hour (5 mg) and only take that when the pain gets bad, before I go out to do anything, qand at night to help me sleep. But added to that are 3 water pills daily and 3 potassium supplements to go with them. I have an itchy rash all over my torso, so also take benedryl before bed and have some kind of potion that gets mixed with water to take orally also if it gets bad. With hopice coming in twice weekly, and my boys and DIL all on FMLA this week, it's like a full-time job to stay on top of all of this stuff and still reassure all my family & friends that constantly phone and come over to spend time with me. My family (not my husband, but the others) all seem to think my body could shut down any time. They even want to move up Thanksgiving. I have no intention of dying within the next 3 weeks!
But it is a possibility and I try to spend some time each day in spiritual thought and in preparation for the end. It seems surreal, but I've read enough about liver failure to know that very soon (when I can no longer eat or keep anything down) I need to have my head and heart and beliefs in order.
Since my liver started to fail in earnest it has become a real challenge to not just curl up in bed and give up. But I am determined to fight this last lag of the journey. As nauseating as food is to me now, I am forcing myself to drink 4 cans of Replete daily. And yesterday Vic and I joined friends at Longhorn Steak House where I was able to get down about 1/3 for my filet and half my mashed potatoes. (I will slice the leftover steak up thin today and snack on it during the day.) Jake, Audie, & grandkids came over with a big dinner for Vic and I tonight, and I picked at some of that, curling up later with each of the grandkids in my new hospital bed to watch TV. It was so sweet to snuggle up to them, but so heartbreaking to see them cling to me and kiss me so many times, blinking back their tears. I must look pretty bad; they are clearly worried. But the people I know that died of cancer similar to mine stopped EATING at the end, something I’m trying so hard not to do. But I understand now why couldn’t eat, when it makes me feel so awful. But I will fight on in this way and try and get out and do something every day until I can’t. I still haven’t given up the tiny flame of hope that the good parts of my liver will step up and pick up the load.
I continue to make plans to do things. My 9-year olf grandson is playing in the Super Bowl of midget football Sunday at B uckness University, and I hope to feel good enough to go. My son Eric is coming in Sunday and staying half the week. (He's an attorney and I can't imagine how this is impacting his practice and his firm as he is a partner.) The early part of the week I hope I am getting paracentesis again. My brother, who I haven't seen in 2 years, is flying in from Little Rock and will be here Friday, so that will be wonderful. And one of my dear friends is coming over Thursday to make her famous Matzo Ball soup for me, joined by 3 other girlfriends who are bringing other goodies.
So even in this possibly final battle, I am surrounded by love and support. Blessed. If you piled all of the many many blessings of my life on a scale, and set 'cancer' on the other half of the scale, my blessings would still far outweigh the hard days. That's so very true.
blessed. You are brave and bring to the forefront that no one leaves this planet alive, but blessings do surround us.
When I was first diagnosed with ovarian cancer, I queried my GYN/ONC, Dr. Pikaart if I were going to die. He pondered my question carefully as I had not yet been his patient for a long time, and he answered poignantly "yes, none of us leaves here alive." I have long appreciated his answer and used my time to reflect upon my life. Like Linda, I feel blessed. I am sure this post may cause some to be uncomfortable with my statement. That is okay. I shall only explain why I feel the way I do about overcoming the suffering that cancer brings to one's life, and the joy that overcomes the burdens when one realizes the gift we are given.
Many day's I read an article or see a news report where a person's life ends unexpectedly. Did that person have time to prepare for their life after death on this Earth? Did that individual get to tell their loved ones how grateful they are to be a part of their lives? Did he or she get to reflect upon all the joy that God granted during his or her life? How about that last hug from a grandchild, such as Linda's, or seeing a sibling that has not been seen for several years due to long distances of travel? How about that tender caress from a family member when one is not feeling well?
We, as sufferer's of this brutal ovarian cancer, do get all of the above and then some. We constantly meet new and wonderful people that had it not been for cancer, would probably have never entered our lives. It is difficult to hurt, I know that. I, like many of you spent three separate occasions admitted to the hospital after my surgery. I know the food isn't so great and the beds not so comfortable, but the medical staff are there to comfort us and try to make us feel better. It is my belief that God feels our pain, he cries when we cry and if we ask him in fervent heartfelt prayer, he can take away our pain and give us a burden no greater than we can handle.
Granted, I wish none of us had to suffer with this awful disease. But, we still are blessed. We have a chance to right our wrongs, thank those dear to us, ask for forgiveness and know that with the acceptance of our Savior, Jesus Christ, life does not end. We are promised a new and better life when we leave this Earth. We will no longer be ill and we will feel no pain. My mind cannot completely comprehend the future, but that is where faith becomes important.
Linda, I love you. Your heart is in the right place. You are a joy and inspiration and one day I plan to meet you in heaven. (I must say, I hope we have a great deal more time on this Earth, to reach more souls for Him.) Peace be with you, my teal warrior sister and may God take away all your fears and pain.0 -
Betty you are rightdjinco said:Yes, Linda we are...
blessed. You are brave and bring to the forefront that no one leaves this planet alive, but blessings do surround us.
When I was first diagnosed with ovarian cancer, I queried my GYN/ONC, Dr. Pikaart if I were going to die. He pondered my question carefully as I had not yet been his patient for a long time, and he answered poignantly "yes, none of us leaves here alive." I have long appreciated his answer and used my time to reflect upon my life. Like Linda, I feel blessed. I am sure this post may cause some to be uncomfortable with my statement. That is okay. I shall only explain why I feel the way I do about overcoming the suffering that cancer brings to one's life, and the joy that overcomes the burdens when one realizes the gift we are given.
Many day's I read an article or see a news report where a person's life ends unexpectedly. Did that person have time to prepare for their life after death on this Earth? Did that individual get to tell their loved ones how grateful they are to be a part of their lives? Did he or she get to reflect upon all the joy that God granted during his or her life? How about that last hug from a grandchild, such as Linda's, or seeing a sibling that has not been seen for several years due to long distances of travel? How about that tender caress from a family member when one is not feeling well?
We, as sufferer's of this brutal ovarian cancer, do get all of the above and then some. We constantly meet new and wonderful people that had it not been for cancer, would probably have never entered our lives. It is difficult to hurt, I know that. I, like many of you spent three separate occasions admitted to the hospital after my surgery. I know the food isn't so great and the beds not so comfortable, but the medical staff are there to comfort us and try to make us feel better. It is my belief that God feels our pain, he cries when we cry and if we ask him in fervent heartfelt prayer, he can take away our pain and give us a burden no greater than we can handle.
Granted, I wish none of us had to suffer with this awful disease. But, we still are blessed. We have a chance to right our wrongs, thank those dear to us, ask for forgiveness and know that with the acceptance of our Savior, Jesus Christ, life does not end. We are promised a new and better life when we leave this Earth. We will no longer be ill and we will feel no pain. My mind cannot completely comprehend the future, but that is where faith becomes important.
Linda, I love you. Your heart is in the right place. You are a joy and inspiration and one day I plan to meet you in heaven. (I must say, I hope we have a great deal more time on this Earth, to reach more souls for Him.) Peace be with you, my teal warrior sister and may God take away all your fears and pain.
Betty, You are so right. I was telling one of my best friends the other day of how blessed I am to be able to tell my family and friends that I love them. So many have been taken so quickly in life that they never get the chance or think they have all the time in the world and never take the opportunity.
And of all the people we have met along this journey that would have never crossed our paths. I am so thankful for all of you my teal sisters. We all came looking for this site. I for one am so thankful I found it. I want to thank all of you for sharing your thoughts and telling us how YOU each feel. We were all drawn here for a reason...to help each other...and believe me...you all have helped me. Thank you. And dear sweet Linda, you just don't realize how you have helped me. So glad that you entered my life.
I look forward to seeing you all in heaven. I can just see it now when I get there and look around, I will just follow the sea of teal. Gosh I know it will be beautiful.
God bless all of you.
Linda0 -
Monday update: rough weekend, but getting ascites drained TODAY!lulu1010 said:Linda
You are such a dear! This just isnt fair! My heart just aches for you and your family and yet you are holding it all together and making the best of things.
I do agree about the blessings. I think of this often. I have received so many blessings as a result of this horrible disease but it is such a high price to pay.
You are doing terrifically and there is no doubt in my mind that you will be at the Thanksgiving table.
When I was first diagnosed I had been ill for quite a while and I had gotten to the point of near obstruction, lots of pain and unable to eat or drink. They gave me a Fentanyl patch which I changed every three days and it worked great. My pain was relieved and I had "breakthrough" pain med if I did have any pain. It was great to not have to be popping pain meds all day and nite. I am not sure why they did not offer this to you but you could ask.
I pray things settle down for you and you have a wonderful week with you family and friends.
Linda
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))0 -
Please don't feel your postslindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
are bringing us down about our own illnesses. I don't know what to think about my own prognosis except that it's a crap shoot. I am fine right now but no one knows. I just try to take each day as it comes. I don't want to get bogged down by what might happen. It is hard to see a sister down. I had just remarked to my mom a couple of weeks ago that everyone on the board was doing okay. I hope you feel better after your procedure today. By the way it sounds like your husband knows how to take care of business. Good for him.
Karen0 -
Paracentesis and leakinglindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
Linda,
So sorry to hear your weekend was so miserable. Carrying around a lot of fluid is torture. If your symptoms get really uncomfortable, you can go to the emergency room and have a paracentesis. I did that many, many times. If you continue to need paracenteis frequently, you may want to ask your doctor about having a catheter installed. With that, you can drain it yourself, and you don't have to let things build up before having the procedure. Also, if your paracentesis site is leaking, you can put a pressure bandage on it, and that will stop it very quickly. I used a Kotex pad with serile gauze against the site and taped it down really tight. This will not allow drainage from the hole and will allow it to heal.
I hope things improve soon.
Take care,
Kate0 -
The Pain Patches..lindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
Hopefully by the time you read this, the paracentesis will be over and the patches will have come. My husband had breakthrough bone pain and started out with 25 mg. patches and is now up to 75 mg. (new one every three days)- he takes the oxycodone when he feels the slightest bit of soreness and is still able to work as long as he stays ahead of the pain.
A couple of weeks ago it (the pain) went way off track and he was prescribed 2mg. dilaudid tabs. He took one @ 6 pm and was in the o-zone about 40 minutes later. He's going to use those only if really needed and if he's waking at night with on-coming pain. I really didn't know dilaudid was in pill form, but I do know that he does space out - which is OK compared to being so uncomfortable.
I hope you are comfortable today and that the swelling goes down. I have a walker that I used for the same issue a couple of years ago- it does help with the leg support when moving about.
I plan to make my Thanksgiving and Christmas sugar cookies this week and stick them in the freezer without the icing. That's one thing I'd like to keep in the house just as a foodie surprise if ever and when....
I found that my mom had made little ' stuffing/dressing' cups with cranberries and froze individual packects in foil just before Christmaas. It was a nice surprise to find and sort of comforting to eat her 'dressing' after she had passed - sort of shared a little of her presence with us during the holidays. Hope you and your grandson can cut out some cookies this week too. Loves - ellen0 -
Your Postslindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
It is an honor for you to share this phase of your life with us. I hope you have some good days coming with the draining and new pain meds coming. Keep up posted...the good, bad and ugly.
Big Hugs (((LINDA)))
Susan0 -
What a weekend you have had...lindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
Sorry you were so discomforted....Hoping the paracentesis and pain patches help.
I have been on the Fentanyl patches before...and they worked great, but I tend to get nauseaous on multiple doses of pain meds...so watch for the nausea.
Happy you can watch the DVD of the big game...
How is the eating going??
Hang in...Lau0 -
Linda, I hope the fluid getsTiggersDoBounce said:What a weekend you have had...
Sorry you were so discomforted....Hoping the paracentesis and pain patches help.
I have been on the Fentanyl patches before...and they worked great, but I tend to get nauseaous on multiple doses of pain meds...so watch for the nausea.
Happy you can watch the DVD of the big game...
How is the eating going??
Hang in...Lau
Linda, I hope the fluid gets drained that you will feel better. I do not think your posts drag us down. We are all greatful that you are being open and honest with us. Just remember that "Everyman has the same fate, but he does not know the hour." You are so brave and inspirational.0 -
Linda, your postslindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
Hi Linda,
I had to respond to your query about my own prognosis. I had a rough weekend more emotionally than physically and so when I read your weekend post I didn't respond because it did impact me and I recoiled as I don't want to be in your position any time soon. I hate pain and fear I have barely lived my life and am not ready for it to be over. Still, by sharing this time with us you are teaching me something over all of these virtual miles. I can only hope that your expressing yourself in the posts helps you in some way.
Meanwhile, I hope that you are more comfortable after the draining and that the patches arrived.
Your lovely face is my thoughts night and day. Please know that you are helping women by telling us what is useful in one's last months.
May this evening be better and tomorrow glorious.
Zarka0 -
Linda hope you are more comfortable this eveningzarkapopovic said:Linda, your posts
Hi Linda,
I had to respond to your query about my own prognosis. I had a rough weekend more emotionally than physically and so when I read your weekend post I didn't respond because it did impact me and I recoiled as I don't want to be in your position any time soon. I hate pain and fear I have barely lived my life and am not ready for it to be over. Still, by sharing this time with us you are teaching me something over all of these virtual miles. I can only hope that your expressing yourself in the posts helps you in some way.
Meanwhile, I hope that you are more comfortable after the draining and that the patches arrived.
Your lovely face is my thoughts night and day. Please know that you are helping women by telling us what is useful in one's last months.
May this evening be better and tomorrow glorious.
Zarka
Sorry you had a miserable weekend. Hope you got the fluid drained and are much more comfortable. Sorry that the fluid built up so fast. Hope you got the pain patch and you will not need to take so many pills, as they are so hard on your stomach. Enjoy that DVD with Jackey. Glad you will get to enjoy the game with him. Wishing you peace and comfort. You remain in my prayers.0 -
LindaRo10 said:Linda hope you are more comfortable this evening
Sorry you had a miserable weekend. Hope you got the fluid drained and are much more comfortable. Sorry that the fluid built up so fast. Hope you got the pain patch and you will not need to take so many pills, as they are so hard on your stomach. Enjoy that DVD with Jackey. Glad you will get to enjoy the game with him. Wishing you peace and comfort. You remain in my prayers.
Your messages are definitely not making me feel more pessimistic about my own prognosis. I feel honored and grateful that you are sharing your journey with us. None of us know how much time we have on this Earth. I just try to live each day to its fullest and be the best I can be each day, just as you've done and are doing. I hope and pray that you are resting more comfortably now.
Kelly0 -
Once...sometimes twiceRo10 said:Linda hope you are more comfortable this evening
Sorry you had a miserable weekend. Hope you got the fluid drained and are much more comfortable. Sorry that the fluid built up so fast. Hope you got the pain patch and you will not need to take so many pills, as they are so hard on your stomach. Enjoy that DVD with Jackey. Glad you will get to enjoy the game with him. Wishing you peace and comfort. You remain in my prayers.
Once..sometimes twice a day I visit this site. I quietly read the posts...sometimes laughing, sometimes crying and sometimes filled with hope. I rarely post,I think all of you are so wonderful and when I need a answer to something concerning this devil called OC someone is always quick to reply and I thank you all for that. Linda my hope and prayer for you is to get some relief from the pain this demon causes. I also pray for you to have some nights of some deep restful sleep. I pray God will see you through these days ahead. I read this and wanted to share it with you.
On the fringe is where I find myself
Somewhere in the mesh of life and death
Each breath the result of an ever present fight
Truth is life has descended to little else
Every day I hurt, this pain too joins others
Today another function my body can't perform
With family and friends visiting each day
The truth is most always I feel alone
On the fringe is where I find myself
It's hard to believe this has become of me
Friends mask smiles, but tear tracks are apparent
They inquire, but don't really want to know
Faith tells me loved ones wait with open arms
And for that I believe my heart rejoices
But my eyes see loved ones that don't comprehend
So I continue to fight - not for me, but for them
On the fringe is where I find myself
Coming to terms with my sins from the past
I've made my peace with the Almighty
I value each remaining moment, good and bad
And when the inevitable happens, someday before long
You should know that my time hasn't been in vain
Know that faith matters most in the thick of the storm
Find love and be happy until this fringe is your own
God bless you Linda0 -
God Bless you Linda!! you are amazing ladyangiedryden said:Once...sometimes twice
Once..sometimes twice a day I visit this site. I quietly read the posts...sometimes laughing, sometimes crying and sometimes filled with hope. I rarely post,I think all of you are so wonderful and when I need a answer to something concerning this devil called OC someone is always quick to reply and I thank you all for that. Linda my hope and prayer for you is to get some relief from the pain this demon causes. I also pray for you to have some nights of some deep restful sleep. I pray God will see you through these days ahead. I read this and wanted to share it with you.
On the fringe is where I find myself
Somewhere in the mesh of life and death
Each breath the result of an ever present fight
Truth is life has descended to little else
Every day I hurt, this pain too joins others
Today another function my body can't perform
With family and friends visiting each day
The truth is most always I feel alone
On the fringe is where I find myself
It's hard to believe this has become of me
Friends mask smiles, but tear tracks are apparent
They inquire, but don't really want to know
Faith tells me loved ones wait with open arms
And for that I believe my heart rejoices
But my eyes see loved ones that don't comprehend
So I continue to fight - not for me, but for them
On the fringe is where I find myself
Coming to terms with my sins from the past
I've made my peace with the Almighty
I value each remaining moment, good and bad
And when the inevitable happens, someday before long
You should know that my time hasn't been in vain
Know that faith matters most in the thick of the storm
Find love and be happy until this fringe is your own
God bless you Linda
Linda you are my inspiration. Thank you for sharing your thoughts with us! You are on my mind and i am praying for you. Praying so you will be comfortable and at ease.
God Bless You!!
hugs
Victoria0 -
Dear Linda, you are indeed my HERO!lindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
I have always believed that as mothers, we never stop being teachers and guides for our children and grandchildren. The grace and strength that you are exhibiting to your family will stay with them through any adversities that they may encounter throughout their lives. Thank you so much for encluding us in your "family".
I'm hoping to hear to hear that Mr. Fedex arrived with your pain relief and the paracentesis made you more comfortable!
((((HUGS))) Maria0 -
Hi Linda,Mwee said:Dear Linda, you are indeed my HERO!
I have always believed that as mothers, we never stop being teachers and guides for our children and grandchildren. The grace and strength that you are exhibiting to your family will stay with them through any adversities that they may encounter throughout their lives. Thank you so much for encluding us in your "family".
I'm hoping to hear to hear that Mr. Fedex arrived with your pain relief and the paracentesis made you more comfortable!
((((HUGS))) Maria
I'm another who thanks you for your honesty and bravery and for sharing your time with us. You are the ultimate teacher in grace and courage.
Sending you lots of love. I hope your pain is relieved and you are enjoying the embrace of loved ones!!!
(((HUGS))) Mary Ann0 -
Linda you are an amazing womandaisy366 said:Hi Linda,
I'm another who thanks you for your honesty and bravery and for sharing your time with us. You are the ultimate teacher in grace and courage.
Sending you lots of love. I hope your pain is relieved and you are enjoying the embrace of loved ones!!!
(((HUGS))) Mary Ann
I have just spent 20 minutes reading all of your posts. I am so touched and up-lifted by your extremely brave and courageous attitude I feel quite humbled. You are an amazing inspiring woman who has the strength to share her journey with others travelling along the same road.
I also thank you for being so honest about your pain and discomfort. It has actually helped me to think about the progression of this vile disease and enabled me to know what to expect for myself.
God bless you Linda and I hope you continue to enjoy your family.
Lots of love Tina xxxxxx0 -
Angieangiedryden said:Once...sometimes twice
Once..sometimes twice a day I visit this site. I quietly read the posts...sometimes laughing, sometimes crying and sometimes filled with hope. I rarely post,I think all of you are so wonderful and when I need a answer to something concerning this devil called OC someone is always quick to reply and I thank you all for that. Linda my hope and prayer for you is to get some relief from the pain this demon causes. I also pray for you to have some nights of some deep restful sleep. I pray God will see you through these days ahead. I read this and wanted to share it with you.
On the fringe is where I find myself
Somewhere in the mesh of life and death
Each breath the result of an ever present fight
Truth is life has descended to little else
Every day I hurt, this pain too joins others
Today another function my body can't perform
With family and friends visiting each day
The truth is most always I feel alone
On the fringe is where I find myself
It's hard to believe this has become of me
Friends mask smiles, but tear tracks are apparent
They inquire, but don't really want to know
Faith tells me loved ones wait with open arms
And for that I believe my heart rejoices
But my eyes see loved ones that don't comprehend
So I continue to fight - not for me, but for them
On the fringe is where I find myself
Coming to terms with my sins from the past
I've made my peace with the Almighty
I value each remaining moment, good and bad
And when the inevitable happens, someday before long
You should know that my time hasn't been in vain
Know that faith matters most in the thick of the storm
Find love and be happy until this fringe is your own
God bless you Linda
What an amazing passage....it had to have been written by another sister of ours...
Thanks for sharing...Laurie0 -
Angieangiedryden said:Once...sometimes twice
Once..sometimes twice a day I visit this site. I quietly read the posts...sometimes laughing, sometimes crying and sometimes filled with hope. I rarely post,I think all of you are so wonderful and when I need a answer to something concerning this devil called OC someone is always quick to reply and I thank you all for that. Linda my hope and prayer for you is to get some relief from the pain this demon causes. I also pray for you to have some nights of some deep restful sleep. I pray God will see you through these days ahead. I read this and wanted to share it with you.
On the fringe is where I find myself
Somewhere in the mesh of life and death
Each breath the result of an ever present fight
Truth is life has descended to little else
Every day I hurt, this pain too joins others
Today another function my body can't perform
With family and friends visiting each day
The truth is most always I feel alone
On the fringe is where I find myself
It's hard to believe this has become of me
Friends mask smiles, but tear tracks are apparent
They inquire, but don't really want to know
Faith tells me loved ones wait with open arms
And for that I believe my heart rejoices
But my eyes see loved ones that don't comprehend
So I continue to fight - not for me, but for them
On the fringe is where I find myself
Coming to terms with my sins from the past
I've made my peace with the Almighty
I value each remaining moment, good and bad
And when the inevitable happens, someday before long
You should know that my time hasn't been in vain
Know that faith matters most in the thick of the storm
Find love and be happy until this fringe is your own
God bless you Linda
What an amazing passage....it had to have been written by another sister of ours...
Thanks for sharing...Laurie0 -
Linda, in no way are yourlindaprocopio said:Monday update: rough weekend, but getting ascites drained TODAY!
It always seems like I have the most pain and trouble over the weekend when support is the most spotty. I have been working hard this morning to get an untrasound parsentesis ordered for this afternoon and after my husband got on the phone (gulp!) thay have me set up for 2 PM today! I'm so filled up with ascites fluid that I don't know what to do with myself.
I'm supposed to keep my legs elevated as they swell up with edema into tree trunks if I sit normally even an hour, to the point where it's hard to bend my knees. But I can't seem to find a way to elevate my legs, work around my belly pressure, and not get a back ache from the fluids migrating to my back when I am reclined or even sitting back with this ascites belly. The swelling is enough that it pushed open my incision from the paracentesis I had last Tuesday, and that has been weeping a clear fluid for 3 days now. It is like a vicious cycle to get all of these new meds in balance. The Oxicodones made me so nausiated, and the Sofran anti-nausea pills make me so constipated. I'm taking miralax every morning, and 3 stool softener/laxative pills every morning and evening. I know once I get the ascites drained off again that this will help with the constipation and nausea more than enything. & I understand that the Fentanyl patches have constipation as a side affct 60% less than Oxicodone and the other opitates, so try to remember that if you (God forbid!) find yourself in a chronic pain situation. (Thanks so much, Linda, for the good feedback on the Fentanyl! It should arrive Fed-Ex today at 3, they say.) Those were ordered for me over the weekend (didn't get them yet) and I'm hoping they will be key in cutting back on some of these other drugs. The hospital bed gives me another tool I can use to support all this fluid and keep my legs up, but I try and spend most of the day NOT in bed, and I got a raised toilet for those infrequent times when I have leg cramps too bad to get down on a low toilet (only needed this twice so far.) Good to get the 'hardware' early on, I guess I'm saying.
I had to skip my grandson's playoff game yesterday. I just couldn't imagine how I could sit on the bleachers with this back ache, or how I'm walk back to my car once my legs swelled up from hanging down. He was totally sweet about it and called me from the field to let me know they'd won (Undefeated 10/0 seaeson!). Everyone takes hundreds of photos and they always do a DVD, so Jakey will need to come over and curl up on my 'barcolounger' (i.e. hospital bed) with me and give me the play-by-play. So that's okay; more in keeping with what I can actually do without lots of consequences anyway. Hope to be feeling MUCH better and less whiny after my paracentesis today at 2, & the Fentanyl arriving at 3!
Is there a chance my messages and posts are making you more pessimistic about your own prognosis? Please keep hope alive and fight on. I remember how I reacted to each loss on the Ovarian Cancer Board; each loss emotionally setting me back for some time. I am so grateful for the information they bravely shared, as it is helping me tremendously at this time. But it did still rock my world each time. Maybe you could just make yourself a 'cut-and-paste' document of anything helpful I've said and read it if you ever do enter hospice. ((((hugs))))
Linda, in no way are your post making me any more pessimistic about my prognosis. I have already been called the most pessimistic...I call realist person around. In a way you are infusing me with optimism.
Death and taxes are the only guaranteed things in life. I echo others in saying that at least in this we get to say our goodbyes. We get to be surrounded by love. That makes any pessimism I have dull. Regardless of length of life....I have learned from you and the rest of the Teal sisters how to live with this constant fear.
A good part of the fear is the unknown. You are clearing the path and showing us what may come. When I first posted here, I wrote that I was going to war. And this place was/is my support. This place, filled with women in the same war, was where I was going to come to, when I could not talk to my family or other loved ones. This is where I was going to ask questions I was scared to voice outside. Never did I imagine this support to be filled with so much love. Never did I imagine a group so tightly knit.
I think about you daily. I say prayers for you and your family...for all of us. Thank you so much for helping me deal with my fear of the unknown. Thank you for sharing this. This is priceless. You are priceless.0
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