Had to come on & ask for prayers & support.
I got a phone call this evening, my sister in Florida has been diagnosed with cancer (lung). I am heart broken & just feel sick & helpless.
After digesting the news I was so angry at this CP. I wanted to hop on a flight & head down to just be there. I realized I cant do that. Cant help myself some days. I felt full of rage. I lost my sister-in-law last Jan & could not see her due to this & shoulder surgery when she was sick.
My sister is the sister of my heart, you know the one who always says "I love you" no matter what. I am so upset.
I am not allowing these doctors to drag thier feet any longer. The cost is to high. My sister will under go a biopsy monday & was told something must be started now or she has 1yr. I think they will start Chemo asap & she is of course so afraid & in pain. She does not want to take any narcotics, I told her to take what ever they will give her for the pain & dont suffer, it wont help her to suffer, it will only make her worse & weaker.
I will not go with out seeing her. I will have to get control some how of this pain in order to do that. I am afraid if I need surgery the recovery time will take time away from that & am afraid to wait. I am devastated.
I am so sick of this pain holding me back from who I am. I am just feeling like I want to throw up all evening between this pain & the news. It has been one thing after another lately & I have faith but boy am I tired, just tired.
I know you all understand & just cant seem to explain it to my husband.
Please pray for my sister who is such loving women. Pray for me that I can be there for her. No one else knows in the family yet & her husband I think needs my support just as bad. I can hear it in their voices, just hear it.
I feel so helpless being in another state.
I pray these doctors dont drag their feet. Thank you all in advance for your prayers & thank you for allowing me to vent. God bless, Sammy
Oh Sammy honey, I am so sorry. You certainly have been thru the wringer lately. Gosh, I wish I could come over and give you a hug and eat a box of chocolates with you so we would feel a little better.
Maybe going to FLA is not such a bad thing. There is supposedly some big surgical center in the area for the spine. It would be a fantastic place for a second opinion. They do surgeries using the least invasive method. I believe it is in Tampa.
I think you are doing the right thing and actually want to commend you for realizing that you need to take care of yourself and medical needs before you can take care of your sister. Please know that I am here for you my friend anytime you need to chat.
Thanks ladies, I am up early & really never slept. Cant seem to get passed all this or digest I guess is the word. Nightmares when I did sleep & chest pain everytime I woke up.
I am pretty upset, angry at this all. I am tired of all of this pain & how it has changed my life. For the first time in along time I feel like just climbing in the bed & staying there but what will that solve? Miss my parents
something awful right now . They have passed on & I have never stopped missing them, more then ever at this time. I want to lay my head on their shoulders & cry over the injustice of life right now, you know. Sometimes it does not matter how old you are you want the comfort only parents can give. I have faith & have to remind myself to stay strong but it is getting to be to much so I will have to pull it together with the help of god.
I will have to tell the rest of the family today after speaking to her this morning if that is what her wishes are.
The only good thing to come out of this news, if you want to call it a good thing, is I am ready to tackle these doctors & push as much as I can. No more sitting back & waiting for things to get worse. The MRI mentions looking further into some of what was there & that is exactly what I want done,asap.
Prayers are what I need. god bless, Sammy
I am so sorry mate, family is so important. I know I am so privileged to still have my parents. And my brother is so good to me, I don't know what I would do without them. I hope things go well for your sister, but don't forget yourself, don't over do it. You know what happens to us when we get to stressed. See you, Allan.
25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.
god sammy,i am so very sorry about this latest blow. the thing you have to remember right now is that they have come so very far in treating certain types of cancer and having quality of life as well(when they caught this also matters ALOT). the big "C" has taken every single person from my hubbys side of the family over the years,and i miss them all soo very much. but things they can do now are much better than they used to be. try and keep thinking positive,which i know right now for you is not an easy task. you need to take a good hard look at what you CAN do for your sister and not what you cannot. and then do those things that are within your power. just don;t dwell on the things that are going to keep bringing you down hon. you just cannot afford to go there right now. you do have to take care of yourself first or you wont be able to this for anyone else,you know what i mean?
i miss my dad sooo much. when he passed last year,i felt completley lost and did not have that shoulder anymore to just lean on,so i do know what you are saying about just wanting to cry on dads or moms shoulder,be held close and them take all the bad things away. my dad used to be able to do that for me,always. but you are not alone sweetie. you have people right there who love you and care about you who you CAN lean on and their shoulders will work just fine if you need to have a good cry too.
once you know more about just what it is for certain that your sister is dealing with,it will be a bit easier to adjust and move thru everything with her,even if you cannot be there physically,she will and can feel your love in many other ways. my hubbys niece(his brother also died from cancer right after my sons liver Tx) just went thru a double mastectomy for a very invasive breast cancer and she is going strong. it amazes me sometimes at the level of the human spirit and getting thru the things we just have to. things will be okay sammy. whatever this turns out to be,you just have to try and look at any and all positives for her and for you too hon. this is all in gods hands. what happens will happen and you have to turn it over to him hon. don't make your sisters situation your responsibility is what i am trying to really say here hon. you can be there for her in many many different ways. if you can actually get down there then go. if not,don't dwell on it,i am sure she understands things at your end. you can only do what you have the capascity to do ya know? just take things one day at a time.
i will say a prayer for her hon and for you. i am doing that alot these days. my dads brother,i found out two days ago,also has lung cancer too. what a world. just do what you need to do and the rest will take care of itself. support is the most important thing for anyone going thru anything,and that you can do for your sister hon. just be there in whatever ways you can. that one thing will help her the most. take care sammy,i really am so sorry for all the hits sweetie,but we are here for YOU too,and don;t forget that,K? sending gigantic monsterous hugs to you sammy,but very gentle. marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Sammy darlin,I am so, so sorry. I know this is probably small consolation, but I really do understand how you feel right now.* It's so strange, how things in our lives seem to be so similar right now. With the loss of my S-I-L last year and now my brother's cancer diagnosis.......*I know you want to be there with her right now, but you are right in taking care of your own health as best as you can, before you try to help anyone else. Kind of like the way they tell you to put your oxygen mask on first, on a plane, before you can assist anyone else. Believe me, she knows how much you love her, and she knows you will be there for her in whatever way you can right now. It may not seem like it's enough, but trust me, it is. Even when it seems like this can't be part of a bigger plan, for whatever reason, I believe it is. We can't always control what life throws at us. No matter how much we want to.
I wish I could say the right words to make this better, but I can't. All I can say is that I love ya girl, and I'm here for you for whatever I can do. You are in my thoughts and prayers, as always. And your sister and her family as well.
Please take care of yourself and keep posting and venting when/if you need to. I'm sending lots of warm, gentle hugs your way, as well as prayers. God Bless you and bring you peace. Hugs, CMP/MM
I am new to this community but identify (somewhat) with just your personal plight. My dad passed away young and he was my rock. I am going to be 30 in December and have similar pain issues. I can't hardly take care of myself. I can't even imagine how difficult it would be to be stuck while something like this is happening. I will say one thing though, and it may be tough to hear... do what your sister would want you to do...
I am so sorry that this has happened to your family and there is not one thing I can say that will help you along... but know that we are all there for you (even if virtually) and send you and your sister and your family big cyber hugs!!! Big cyber prayers too! <3
My brother has asked me to keep his cancer a secret from our sisters as they are not speaking due to a fight right before our mom died....and I'm in the middle. I'm really the only family he has. Support is so important. I hope you make it down to Florida with no increase in pain. Explain to your doctors just how important this is and make them help you!
Good luck. Will keep you and your sister in my prayers.~Mush
undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
Thank you all, & welcome Mag.
Wow, we all really do have alot on our plates.
Honestly I feel like my life is becoming a life time movie event,lol.
Every week it is something. I have been getting to the point I will start to shake when a new problem or worry arises, I mean really shake. Cant even hold pen or think straight. I told myself to calm down & put these worries into gods hands. He knows best.
My husband may have a job oppurtnity & I am praying it comes through that will open the door to help with all my other problems. I can get surgery with out so much stress, try to get to my sister, & just breath easier.
So that is at the top of my prayer requests for now along with my sisters health.
I am trying to stay calm here. Got the news that I needed surgery today. I explained or tried to between sobbing to the surgeon about my sister & he said he understands but would like to set it up so I can get it done before the first of the year. I am really unsure on to try to go before surgery.
I will ask my PM next week what he thinks & tell him how important it is to me. This also depends on my husbands job, although he did say he will find away to send me, bless him.
I am scared if I wait I wont get to see her,or she will get to sick. I am just scared. I have called her daily & will call her husband tommorrow to try to talk to him as she is worried about him.
Everything is so much harder when you have CP, just cant jump up & go.
I am resenting it & really angry at the doctors who put me off. In fact angry is not the word. Do not misunderstand, I dont pity myself, I am down right livid at what this has cost me. My sister in law passed last year & although we spent hours on the phone I never made it to see her. She passed after a surgery & I was planning on going after my shoulder recovery, so this is like a reoccuring nightmare. What to do?
I was so bad today that I realized that if I dont have better pain control I will not be of any good to her at all. I refuse to burden her family so we will see what my PM says. This is hard. I told her about these boards & all of you. I am going to introduce her to these boards if I can. I think it will be good for her to gain knowledge & support. Like about meds. she is afraid of narcotics like I was & I dont want her to suffer, it breaks my heart to think she is in pain out of fear of meds.
You all understand, I cant walk out my door & find the love & kindness that you all give to me, you are so very dear to me.
All of you, CMP I am so sorry about your brother, we sure have alot in common at the present dont we? We will have to hold hands through it all, Just like Marica & Sky have done for me in the past. I understand & hope your taking care of yoursefl, you to have a full plate, I am here for you.
I phoned my other sister today, they are not speaking (women), she is pretty upset & said she will call her & be there for her if she needs her. She lives in Florida to. Thank god she will try to help her if needed.
I have to say I am over loaded & this is my only place I can vent. So I will say sorry in advance for being a pain in the butt at times.
As always god bless you all, You as always are my saving grace. Sammy
I am so sorry for yor bad news but on the other hand listen to this story. My mom's friend was diagnoised in November 2007 of lung cancer. She had a portion of the lung removed, had chemo and radiation. She is doing very well right now. She goes to the dr. every 2 months for testing etc. The treatment worked but she went through hell and back during it. I will say a prayer for your sister and hope she has the same luck as my mom's friend.
lami L4-5, ACDF C5-6-7, post. lami-foraminotomy c6-7, staph infect. revision acdf c4-5-6-7 new c4-5 2004. STILL IN PAIN 24/7
Oh Sammy, I jusst saw this post - bless your heart -you are one that knows the Lord will see you through this - take care of yourself because thesse are the times that things flare up - I will be praying for you and your family daily
Thank you all so much. I am exhausted & am tired of it all to be honest.
With out faith I have nothing, I realize that but I am ashamed of my mood lately. I dont feel like me at all right now. My life feels like its in limbo & I am just going through the motions. My marriage is suffering & to be honest I am so tired of being the dependable, strong one I dont have the energy to care much. That sounds terrable but its true. This is the only place I feel I can say that but sometimes I just cant take it all. My husband has always depended on me for everything & never the other way around when the going gets tough he cant handle it & I just am to darn tired anymore to deal with it all. I cant sleep, cant think, cant do much between pain & worry. I am the only one working right now & I need this surgery, I so want to see my sister, I just am not wanting to deal with anything right now. I honestly believe its over load. I spent the day just crying & angry at myself for doing it. Crying out of pure frustration. I dont know whats normal anymore, my life, my marriage, everything. Even my daughter told me today that I am the strong one & always pretty much manage to handle things on my own, because I have had to, but I think I have had it. She says because I do it all & keep trying , that everyone is used to it & she realizes that it comes down to taking advantage but I have allowed it.
I get more support here then I do from my own husband & family, I am not sure that is a good thing, or if its normal. We will see, maybe tommorrow will be better. Sammy
I'm so sorry you are having such a miserable time. I'll say a special prayer for you. I know it's awful to want to go to help someone and not be able to get there. Hang in there, I know for me even if I only have a few minutes to log on here from work at lunchtime it really helps. People don't realize what it is to live in pain 24/7 until they have experienced it themselves. It's not that they don't care, because I know they do, but like a lot of things until you've been there it's hard to understand.
My heart goes out to you and your sister. I know how hard this is to leave far away from your family, I go through same thing. Especially you feel how hard this is when something like this happens.
Regarding your flight... I had such a fear of flying with all my problems as you know. Honestly it's not that bad as I thought. I had to do what I had to do to visit my very sick parents because the thought of them going without me seeing them was unberable. I have my wheel chair, did not have to wait in lines long plus due to a lots of hardware in my spine (I have a letter from my surgeon) I di not have to go through metal detectors. They gave me a person who took my wheel chair through every terminal which was a big help to my husband who took care about laggage. Every airline has their own wheel chairs too, just ask them.
For me a big problem to sit still for a long time with my feet down. I managed between walking a little, laying on my hubby's lap a little... we talking 26 hours flights all together and 4 hours in between waiting for connection flight in Europe. All 4 hours I was laying on a couch in a waiting area.
Flying to Florida is much easier and not that bad. I am not saying it's easy, nothing is easy if you leave on PK 24/7, plus I am on chemo therapy and a lots of other medications.
But it feels sweetie, so much better after you done it. I know how hard to leave with CP, but also I know how hard to leave with guilt. So see what you can do. I have a sister and I know what this means.
Best of luck to you, honey and I wish all what you pray for will come true.
I will add your sister to my prayers...
They do miracles now and nobody can put a date on how long she will last... nobody knows. I hope she has as much wheel power as you do and this keeps us alive and helps us to go through ups and downs...
Oh Sammie - your family relies on you because you are resourceful, capable, kind, and loving - they are not taking advantage of you - they are just following your lead -that is what being the matriarch means and I bet you are the best - reading your posts tells us how great you are
I bet you raised them right and they will rise to the challenge if you tell them you need them to take over some of their own responsibilities - just throw it out there to them and you may get a big surprise
I was reading through this thread and it felt almost too familiar. I know we've discussed this long ago, but you and I are a lot alike in many ways. We are both incurable caregivers. I know exactly what you are going through. It's a strange feeling when you suddenly realize that you are the one who needs the care. I have been struggling with this myself lately so I finally sat my family down the other night (at my psych doc's insistance) and explained that I am not as strong as they think I am. I'm all out of strength at the moment. Honestly, the look of sheer panic and confusion on my husband and daughter's faces almost made me retract what I had said, but I bit my lip and kept on talking.
I felt a bit guilty at first and strangely enough, a little weak. Years of telling myself that I had to hold everyone else together made me forget that I am not made of stone and I can fall to pieces just like everyone else. I have been grinning through the pain for so many years that I've forgotten who I am. And it's time for you and me to find ourselves again. It's time to let everyone else take care of us for a change. It means letting go of the control and remembering that instead of asking everyone what they need, I have to let people know what it is that I need. Trust me honey, that is not an easy thing for me to do. But I'm learning. And much to my surprise, they are stepping up to the plate. I feel horrible that I ever thought that they wouldn't or couldn't. Shame on me for not giving them the credit, let alone the chance, to show me how much they love me.
This is a process, Sammy. And I won't lie and say that it is remotely easy. But, if I am going to make it through all of this, I have to try. If it's OK with you, I'd love the company along the way. Give your family the chance, hon. Let them know that this time, you need them. If I can do it, so can you.
I'm not sure that I'll be able to post every day, but I promise that I will be here when I can. And if you reach out your hand, I'll grab it as soon as I see it. Maybe together, we can reach the other side of this. You and your family are forever in my heart and in my prayers. God Bless sweetie, CMP/MM