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giving it up

melbas2
Posts: 108
Joined: Aug 2010

I'm done y'all. now they want to start trestments all over. I can' do it. Good luck to you all, Melodie

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lizdeli
Posts: 521
Joined: Jul 2009

Melodie
What do you mean treatment all over again? Please stay on the forum and let us help you through whatever is happening.
Hugs,
Liz

melbas2
Posts: 108
Joined: Aug 2010

3 weeks ago my onc was talking about a possible remmission. Then on Fri, she told my counts were all over the place again. So they want to do the whole Atgam treatment again. That means 6 days in the hosp with 5 8 hour infusions of the horsey juice, the cyclosporine horse pills the weekly lab. I had a blood transfusion today. They gave me 4 units as opposed to the normal 2. It took them 2 hours to find a vein that's still accessible. I've have PICC lines 3 times in the past. They get irritatig after swhile, when everything is going cool and I need no needles except for lab. Does anyone have a port and is it more advantageous the a PICC? I know it goes under the skin, so how does it prevent pain for iv's an such? they still have to get thru the skin, right. Help!! Melodie

duckyann
Posts: 162
Joined: Jun 2009

I have a port and have had it for over 2 years now. Yes they still have to enter the skin with the needle but it is much better than being stuck all over the place. It is a little pinch and then it is gone. They still take blood from my port for blood tests. I am actually happy that this is what my doctor recommended at the beginning.

Nancy

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z
Posts: 1251
Joined: May 2009

I have a port since 4-18-09 and will keep it until 4-18-12, and have it removed after my next colonoscopy. Kill 2 birds with 1 stone while under anesteshia. I have it flushed every 3 months. Although they recommend every 6 weeks. I have no problems with it, and forget its there. When they use it, 1st they put on lidocane (freeze spray) and then inset the needle, no big deal at all. I wish you well, and you must continue to treat yourself and get better. You have to be here for your children and grand children. Lori

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sephie
Posts: 521
Joined: Apr 2009

please talk to us. we are here to help. understand the tiredness of all of this. let us know what you mean by tx all over again. hugs sephie

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sandysp
Posts: 752
Joined: May 2011

No matter what you decide. We want to hear from you.

sissy310
Posts: 300
Joined: May 2010

Hey Melodie - I agree with everyone on the forum...hang in there...come in here to vent. I know it is getting frustrating going to all these doctors and getting infusions and just feeling like, when will it end? I have to go back for a retake mammogram tomorrow and maybe an ultrasound. I've gotten to the point now where I almost expect a call back after having a pap or an ultrasound and just think, okay, at least they are keeping up with things and being diligent. I'd rather have that than not know. I keep thinking after all these xrays, ultrasounds, radiation and such I should be glowing by now. Do not get discouraged. I find when I feel like that I come in here and vent or express my fears or emotions. Keep us posted and come in here. Do not give up! Hugs, Marilyne

suzynanny
Posts: 36
Joined: Jun 2011

big big hugs Melba.

SueRelays
Posts: 489
Joined: Dec 2009

OK Melba!! There must be a reason I popped on here today.....guess it's to give you a little kick to get you going again!!!

I'm not bragging :)....but I have had 3 diagnosis of a primary cancer. Went through anal...then a secondary (non smoking) lung, then found out the anal spread to my liver, so had 1/2 of it removed. THIS YEAR.....Breast Cancer!!! It is a tireless beast, hellbent on tiring us....but don't let it Melba! We are soooo much stronger and better than this.
Trust me, I know ALL to well how depleting it can be. I was so hoping to enjoy this summer and NOT think about cancer....but for some reason it was just not meant to be. Next Year???
As much as i HATE all of it, I will do it and win, because I LOVE life way too much to let something as small as a cell get the best of me :)!!

Come on Melba.....I know you are strong....I know you are tired......but strength trumps...you will get through this with all the support and love here.....let everyone help you. I believe there is strength in numbers, and there are so many that can relate and help.

tramoo2
Posts: 9
Joined: Jul 2011

your post to melba bought tears to my eyes......yes i thought that i could get away with
not thinking about my cancer this summer......i was given a negative diagnosis but still was suggested to under go surgery to remove a lymph node..... the lymph node was the size of a cherry??????what kind of node is that size? my cancer started out as rectal and moved to my lung(non smoking) and the node was in my chest/breast.

do you ever feel that when you talk to people about your condition that they really are thinking that you are going to die????

Captain11
Posts: 88
Joined: Apr 2011

Hey, Melba, please don't get discouraged... if there is one thing I know, miracles do happen... please don't give up... God loves a fighter... we are all fighting, and not just for ourselves, but for our loved ones, AND our family of survivors on this post, right here and now... I had a port put in my right side of my chest and went through my first rounds of chemo, etc. My port got infected, and was taken out, but since my cancer spread to the lymph nodes and abdominal area, (can't recall the medical term) I had another oport put in my left side and went through the next 6 months of treatments... The port does not hurt. I don't even take the freeze stuff the nurse puts on it, just take a deep breath when they get ready to put the needle in, and it is done. It hurts less than a blood draw... All of us here feel the same... you can get through this... Please keep us posted. I hope you can somehow ease your anxiety.. God bless you. We are all praying for you.

melbas2
Posts: 108
Joined: Aug 2010

I know...it was a self pity moment.I have so much to live for, sometimes I just wonder why it's so hard. I am now having to go back to the hemmy surgeon, I have diarehha constantly. I use the wipes, the desitin, the pads, the lidocan, and I've already thrown away 4 pairs of underwear in the past hour and 1/2. I can't go too far if I don't know where the restroom is.It's demeaning and embarrassing. Will I need more surgery? Wouldn't it be better knowing that sitting here daily shitting all over my self? Absolutely...it's just getting up the couage to find out. So I'm making my appt first thing in the am. I did have Merry Maids start today, and the stress relief of knowing my my house is clean was well worth. So prayers for the surgeon...My grandaughter will b 2 in 2 weeks and I will be there. Thanks, Melodie

Captain11
Posts: 88
Joined: Apr 2011

Good girl... Keep a positive attitude... you have the right to have a self-pity moment... thanks for making the appt... Yeah, I have to be around a bathroom too, or at least know where they are when I go to the store, or visiting... Thank god, I have 2 bathrooms in my home. I don't know whether you will need more surgery ... but, the dr will tell you that at your appt. Once you get through the treatments, etc, you will be able to regulate your diet and the diarhea should stop... Are you taking the imodium???? If not, get yourself some, and take it right at the onset of the diarhea and for each time you have it... I think you can take only up to 8 a day, but, I rarely have to take more than 2 a day. BeKeep your mind focused on your granddaughter... try to calm down... you can get through this... we are all here to support you. Keep us posted. God bless.

melbas2
Posts: 108
Joined: Aug 2010

OKAY!!! I will fight some more. Like I said, I'm going to both docs tomorrow, and something is gonna happen. If it'a more treatments, more surgery, whatever. But this time I'm asking for pain pills. I am not superwoman...I'm just trying to survive cancer. And without all of you, I'd be a mess. god b less you all. Melodie

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mp327
Posts: 2855
Joined: Jan 2010

I've been out of town and am just catching up here. I'm so sorry you are getting so discouraged. It's understandable, but please, please do not give up! I know you are seeing the doctor tomorrow, so I hope you'll be able to get another plan of attack underway for your issues. I am sending you positive thoughts and prayers and hope you'll let us know what you find out.

duckyann
Posts: 162
Joined: Jun 2009

Melodie,

Just a note to let you know I am thinking about you and hope that the docs have a plan that will get you through this and better. Take care and let us know.

Nancy

Captain11
Posts: 88
Joined: Apr 2011

Melodie, thanks... keep up the fight... Ask for the pain meds... take the immodium... remember pain meds can make you constipated so be careful with that... drink more water to offset the constipation... drink more water to stay hydrated. I am hopeful that the drs will come up with a great plan for you. Keep us posted. Try to calm down... We are all praying for you... God bless

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sandysp
Posts: 752
Joined: May 2011

I realize how much we need each other now. I **** the bed last night. Had a sudden hard pain that woke me up and it was too late. I'm not even started with my treatments yet. I am dreading the diarreha you describe but at least I won't feel alone in it when that starts. I pray you are at the end of the tunnel and there really is light and not a train at the end of it. Hugs!

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z
Posts: 1251
Joined: May 2009

You just had surgery, and I wonder if the bowels are getting back into shape by eliminating as they are suppose to, albeit too fast. I know your on pain meds and that will constipate, so its better not to be constipated, but a happy medium is better. I wish you well. Lori

melbas2
Posts: 108
Joined: Aug 2010

No, my surgery was just over a year ago, and I've never taken pain meds. I went to both my appts today, and my onc wanted to wait a couple more weeks till my platelets come back up, I'm tired of waiting. So my next appt was with my doc who did the hemmy surgery back in May of 2010, and I told him I can't do this anymore. After my exam, he agreed that the waiting game didn't seem to be helping, physically or mentally, so he called my onc and they decided to do the port on Wed. He said the way my plates fluctuate, they may never get high enough. So I go in on Tues for plates and lab and then Wed i go in fir the port surgery. Then it's gonna be back to the hosp for anothre 6 nighter for the Atgam treatments. No guarentees that the results will be any different than in May, but at least we're gonna DO something. It's the waiting and not knowing that discourages me most. So please, prayers for early next week and hope that this time we find some answers. Again...couldn't have come this far without y'all. Happy 4th, stay safe, I eill post after the surgery and let y'all know what...if any...progress we're making. God bless. Melodie

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z
Posts: 1251
Joined: May 2009

Hello Melodie, the surgery post was to Sandy.

I am so glad your getting the drs to treat you, and I know the port will be an improvement, as I have a port, then they won't be damaging your veins anymore. I hope that the atgam tx will help this time and fix you. I wish you well, and good for you in being proactive in your care. Lori

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mp327
Posts: 2855
Joined: Jan 2010

Hang in there, Melodie. You asked for prayers and you've got them! Please let us know how it goes.

sissy310
Posts: 300
Joined: May 2010

Hi Melodie...My heart breaks hearing how much you have to go through with all this and I know how tiring it is to see doctors and have tests done and be poked and prodded. When you feel discouraged or down or want to stop and give up, come in here and vent. If nothing else, you will have many who will pick you up and listen and help you get the strength you need to push forward. Keep us posted on the surgery and blood work. Hugs, Marilyne

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sandysp
Posts: 752
Joined: May 2011

Do they tell you why your platelets are low?

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sandysp
Posts: 752
Joined: May 2011

You have been an inspiration to me. We are all rooting for you so deeply. I am so glad you have a port. My doctor said that pain management is all part of healing management. If you don't take pain pills then your system is more stressed and it is harder for you to heal. Don't worry about getting addicted or anything right now. When your cancer is gone you are going to want to be rid of everything that reminds you of it. We are lucky to live in an age where we have access to pain medicine. You are in my prayers big time.

patacz
Posts: 64
Joined: Sep 2010

I was so concerned when I read your first mail, then I got to this and found out you've decided to keep fighting, what a relief, thank you. Yes, it is hard, and you are not alone, you should see my appt schedule, it seems like doctors offices, tests, etc. are my life now. But I am still grateful to be alive. Don’t despair, keep the faith and God will give you strength? I am sending you best wishes for good results on your appt. Happy 4th!

melbas2
Posts: 108
Joined: Aug 2010

Hey Y'all. Finally some action going on. Since my platelets never get high enugh, I went in for an infusion yesterday, which was twice the normal time. Then I went in for the port today, they did lab, and my doc told me my plates were 108,000!! They never gotten higher than a 30 since I started all this. So the surgery was on. They did blow out another vein trying to get the IV in, but they finally got me hooked up. They had told told me they were going to put it in my left shoulder, apparently had problems so it's in my right. so far, no problem except for normal after surgery soreness, Then my surgeon took advantage of the fact that I was passed out and examined my bottom, too. He found a large hole inside mye that was collecting feces...yuck...that was preventing baths or creams to get that far inside to promote healing. So he cleaned it out, put a couple of stitches in and already my butt feels better that it has since before May 2010. So my hopes are lifted again, and my attitude is back to positive. Thanks for pulling me thru my funk. God bless, Melodie

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mp327
Posts: 2855
Joined: Jan 2010

I'm so very glad to hear that all went well with your port placement! Also, I'm so glad your surgeon took a look at things down under and found the source of some of your problems. It's great that you are feeling better and I hope things will just get better and better for you! Please keep us posted and take care!

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z
Posts: 1251
Joined: May 2009

I am so glad you have your port, as I have a port also, now you won't be going through all that pain to reach a vein. Wow, it sounds like you had a fistula, an opening where you shouldn't have one. No wonder you have been in such pain, now maybe you will start healing. I hope this is the beginning to healing and wellness for you. One day at a time. I wish you well. Lori

Captain11
Posts: 88
Joined: Apr 2011

Hi. Melodie... Thank God you are getting some relief, not just physically, but in the strength to keep fighting... Talk about the power of prayer!!!! I am so glad for you and your good news... This is good news... And I am glad about the port... you will find that not getting jabbed in the arm, etc all the time is a BIG help. Take care, rest easy. Keep up the good attitude. Try to laugh, it really does help... Keep us posted. God bless.

sissy310
Posts: 300
Joined: May 2010

Wow. Fantastic news that he found that issue in your bottom. Maybe that was much of the problem you were having with pain and such. Thank God he found this. Maybe now you can heal there. I don't know what the normal is for platlets - what is the normal number? It seemed that you jumped markedly which is good correct? Was it because of the infusion or is your level starting to go up? Whatever the situation, hopefully all will get better. Keep up the positive attitude, that is half the battle. Hugs, Marilyne

suzynanny
Posts: 36
Joined: Jun 2011

melodie so glad you are getting some positive things now. Stay strong.

melbas2
Posts: 108
Joined: Aug 2010

Normal count is 150...mine would run 10 to 30. So whatever they did, it worked. Yesterday I couldn't move my arm at all, today a little better. But going to the bathroom without screaming...AWESOME. So my positive attitude is back. Thanks for all your support. Melodie

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mp327
Posts: 2855
Joined: Jan 2010

I'm so glad to hear this Melodie!

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nonichol
Posts: 114
Joined: Jul 2010

Melodie,
I haven't been online for awhile. I am glad you have some of thse issues taken are of. Hang in there, sounds like things will finally be improving for you.
Norma

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I just wanted to say hi and tell you it's good to see you on here. I hope all is well.

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nonichol
Posts: 114
Joined: Jul 2010

Martha,
You are sweet. All is well with me.
Norma

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Thanks and yay that you are doing well! Hugs!

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sandysp
Posts: 752
Joined: May 2011

I hate to hear you were screaming in the bathroom. Thank God you got the help you needed. Great going! This information is liable to help someone (maybe me since my platelets are low also) so I am so glad you posted. You not only did good for yourself but for all of us here by throwing up your hands on this board and then coming back and fighting again.

patacz
Posts: 64
Joined: Sep 2010

Wonderful news about your surgery and port, you'll like it. They will no longer damage your veins. I love your new attitude of hope. Hugs!

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

Miracles do happen. So happy for you. How was the birthday party for your two year old granddaughter?

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Worden4
Posts: 24
Joined: Jun 2009

Melbas, I also blaze through the underwear, and have diarrhea a lot of the time. I also still bleed if I am not careful with what I eat, I have a hard time getting around, etc. It does feel at times like why even bother but then I look at my grown children still finding firsts in their lives, and my husband and I think how can I quit? The pain on some days is still unbearable. I just recently found these new pads I ordered and am going to try. Hopefully it will save more of my underwear. If they work I will let you know. We all have our days of NO MORE, but our souls know we will still try. Best of luck.

micki24
Posts: 1
Joined: Jul 2011

HI
you do not know me, but I will tell you to fight for your life, if you are NOT comfortable with the anwsers you get from anyone, then you keep looking until you find what you feel it right for you, only you can fight for your life, doctors will fight for you until they decide that your life is not worth saving... only you can fight to live. Get all your test results, get copies of all their findings, fight for your life, I am so sorry that your are going there this, I took care of my mom for over 19 years, and in the last three months of her life, her doctors gave up on her, I would of gave my life for my mom, but she taught me to be strong. Cancer sucks big time, but cancer is the biggest money maker for the companiies, the stockholders, the government and all the poltitics.

Health care is bullshit, yes they will give you the basic tests but no test will be prescriped for you that costly

z's picture
z
Posts: 1251
Joined: May 2009

Hello Micki, I am so sorry for the loss of your mom. There are other discussion boards, such as emotional support, and care givers that other posters would probably like to discuss with you what you have gone through. I wish you well.

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hi Melodie,

I understand your frustration and somethings wanting to give up. You are though I am sure, alot stronger then you think. I feel these challenges and crosses we have to bear, are a true test we are given to see, how our inner strength can endure and handle things. Let me say, I have had breast cancer, and anal cancer 2 primary cancers, 3 yrs apart from each other. I have a chronic nasal and middle ear passages, damage, thanks to the doctors, where i can only breathe about 30%, most times, i do mouth breathing. I suffer pain and pressure from it, all over my head, and neck, it effects my TMJ and, sometimes, radiated down my back and shoulders. Also, I have now been diagnosed with high BP and Diabetes. I have severe edema, and vascular and lymphatic problems, from the radiation they did to the OUTSIDE, PELVIC ORGANS, when they did the anal cancer, as a precausion, for fear of the lymph nodes being effected. I never had cancer in the pelvic organs. Now, they found a cyst, or mass, measuring 9cm, they do not know how to get up there, because the rads caused, scar tissue. Can't get a uterine biopsy, and I can never have a pap. They can't use estrogen to open things or try to, because, I had estrogen related breast cancer. I have gained alot of weight, ALOT, from being housebound, to do, hip and leg pain, and, symptoms of peripheral neuropathy, and im fighting with the weight now too. I have anxiety from all this. In the interum of going through all this, my dad died and a few of my uncles. One of my doctors said, if I don't lose the fluid in my legs, I stand a chance of losing my legs. I am on a water pill over 1 year now 80mgs.
I am not a big eater, I do not use salt. Alot of this, is from treatments, even the high BP and sugar levels have gone nuts, because of the water retention and more. I am not looking for pity Melodie, because I am not that way. I just merely want you to read, the things others go through, not making less of your concerns...but hopefully, reading about me, can give you more strength, for you to move forward and FIGHT FIGHT FIGHT, because, I am sure and believe, you can do it. I got tough and said, I am not going to let alll this, ruin my life. I am going to stay on top of things and try my best, to FIGHT, because I still have my mom and people who care about me and I care about myself and this board and wonderful people on it, of which you are one. I am not denying that the road is not a hard one, it is a tough battle, no matter what we are facing but, when you hang in there, and show your health issues who is boss, you will come out on top, and feel so good for, giving it all you got, and coming out on TOP. It is a good feeling. Not saying it is easy, but with the help of this board and the great people on it...and your INNER strength, and the grace of God, I am telling you....YOU CAN MAKE IT, IT IS POSSIBLE...and we will be here for you to help you.
GOD BLESS YOU and May he ALWAYS WATCH OVER YOU AND GIVE YOU STRENGTH TO FACE WHATEVER COMES YOUR WAY....LOVE YA, NINA~

melbas2
Posts: 108
Joined: Aug 2010

Wow, Nina...you have gone thru so much. Now I seriously feel like a big baby whiner. I will keep u in my thoughts and prayers, and I will stop whining about what HAS happened and Thank god for what hasn't. Thank you, Melodie

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

I am so glad we have this board to just vent about our health and the system, etc. It helps me to read what others are going through. I read psalm 38 as part of my morning devotionals and wept like crazy. But it's good to cry sometimes. It's just what we need to stop holding everything in. I am glad I read this as it is moving me out of myself. It is scary to read these things because I think "will this be me also", but it's out of my control. I just have to keep going to my treatments and report the symptoms to hopefully get a better understanding of this changing body. And keep meditating, praying and moving this body when possible. God bless you all.

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Don't anyone feel guilty because you have anal cancer. One of the first things my husband told me after I was diagnosed was 'It's not your fault you got cancer.' Thank you husband - I needed that so bad. I HAD been feeling guilty. I did something. I smoked too much, I drank too much, I had too many partners - it was my fault I had cancer.

No, he said, it is not your fault you got cancer.

My brain still thinks maybe it is. I drank and smoked my way through my 20s and 30s. I had several relationships. Maybe it WAS my fault.

But many folks who didn't drink, didn't smoke, and had fewer partners than me have this HPV virus and will never get anal cancer. And many folks who did MORE than me have this HPV virus and will never get anal cancer. My oncologist told me that half the population of the United States has HPV; it's only in a very small percentage of people that it turns to cancer. It's the 'why' of this that's unknown. Why do some people get it and others don't? The doctors don't know and neither do we.

I do know this - God is not punishing us with anal cancer because we sinned. We all sin at one time or another. If we didn't we wouldn't be human. God would never use cancer as a punishment. If anything, it is a chance to renew your faith and talk to God more openly.

Whatever your religion, or if you have none, remember, 'It is not your fault you got cancer.'

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

I was in my psychiatrist's office with the CT Scan and the Biopsy Report showing Invasive Squamous Cell Cancer and she said "How do you feel?" And I said after a moment, "Apologetic" and she said APOLOGETIC!!! But I still feel apologetic a lot. My husband is trying to be helpful but occasionally, because I am sensitive, I still feel apologetic. It's part of me. Is this a "girl" thing? I think the rate of hpv might be higher. I've come forth about my illness to EVERYONE (that's the kind of girl I am). And everyone has admitted to having hpv after I have mentioned that this virus is what caused the cancer. I am on a bandwagon (or will be when I am half assed well again) that girls AND BOYS need this hpv vaccine. I know all vaccines are complicated but I'm not sure there aren't others out there with undiagnosed squamous cell cancers. I was lucky I passed blood in time. That's the way I feel.

Captain11
Posts: 88
Joined: Apr 2011

Hi, Nina, Haven't seen you posting in a while. I was worried about you. You have been through so much, and I know your fight has been tough. Thank you for sharing your experiences; we are all learning things from them. I hope in some way we help you, too. Keep fighting and don't give up hope. I am sure the docs will find a way to get you the tests/scopes/scans you need. Keep us posted. God bless.

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