Feeling alone - Looking for help

debbie_from_cincinnati
debbie_from_cincinnati Member Posts: 14
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
In 2001 I was told by my gynocologist that cancerous cells were present in a recent papsmear. After a year of small proceedures and tests he decided a radical hysterectomy was my only other option. Last October the cancer had returned. This time since there is nothing for the cells to attach themselves to, they are clinging to the walls of my vagina and the cancer is simply being termed gynocological cancer. In January of this year (08) I began a piggy back treatment of radiation and chemo. I am currently on round 2. My doctor feels we may need to go 2 more rounds before I will be cleared. I have a blood condition known as aplastic anemia which causes my blood to not reproduce healthy red and white cells so being dealt such a severe treatment causes my body to really take a beating. They need to proceed with great caution. Because of that, we may need to repeat treatment time and time again before all of the cancer can be eliminated. The first time all of this happened, it was very quick. Once it was determined to be serious they took action, I healed and repeatedly had check ups to make sure I was ok. This time is much different.

I have a loving husband who is also a terrific dad to our two children (11 and 13). But he is not at all supportive emotionally for me. He cringes when I discuss my symptoms or pain, and he'd rather I stay in my room until the reaction subsides. I cry a lot in my bathroom behind a locked door. My children are being shielded as much as possible. This is too heavy a burden for them to bear. My mother and father are gone and my in-laws, though their hearts are in the right spot, I believe they feel there is an invisible barrier there that they shouldn't penetrate. At work, when I'm able to work, I do my very best to be strong and stay busy so that at least there my mind and total focus is not on me being sick.

I've lost my hair, my body is broken, I suffer from frightening bouts of depression and am looking for some support. I've tried a group setting but felt too vulnerable. It wasn't for me. I'm hopeful I can find some help here.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    My uterine cancer (UPSC) was discovered during a routine PAP
    My heart goes out to you. And let me also say that in your photo, bald or not, you look beuatiful. I'm 55 and have always been one of those people who eats right, goes to the gym 6 days a week, never been overweight, non-smoker, never sick, blah blah blah. Then overnight, the whole world turns upside down. With no symptoms at all, I go in for my annual PAP test last July, and BLAM! After a series of small biopsies and D&C, they find traces of some kind of rare cancer (UPSC) in a tiny polyp they cut from my uterous. UPSC doesn't clump up into tumors, but instead floats about microscopically wreaking havoc, resistant to treatment, and yet AGGRESSIVE treatment is my only chance for survival. I had my radical hysterectomy 2 weeks ago and have 2 weeks grace to heal up before we jump full force into the radiation/chemo that will eat up the next 6 months of my life. The pathology from the hysterectomy showed that the cancer had penetrated into the outer-half of the uterine wall and into 1 fallopian tube (all cut out now), and was in 1 of the 25 lymph nodes they cut out along with the hysterectomy. This all seems like a bad dream that I need to wake up from. I already miss ME, and I've only just begun this battle. I just want to be who I used to be, and worry that it may not ever happen. I hate seeing the worry on my grown children's faces and even my little granchildren are so strange around me already. My husband will need therapy; he's a wreak. Did you ever get your pathology report to read from your hysterectomy? That gives you so much good information to use when doing your own research.
  • debbie_from_cincinnati
    debbie_from_cincinnati Member Posts: 14
    #3
    I love you
    Oh honey. I read your comment and just cried. Your scenerio is exactly like mine. I too am resisten to treatment, but also reaks havoc. I know you are going through a very painful recovery. I remember it vivadly. The pain was unreal. And the mental strain...give me a break. I hope you have good support. Being someong that came here looking for it, I can tell you how important it is to have the ones you love there, open to what is happening and offering you their heartfelt support. I can tell you that I am here and I love your soul for what you are experiencing. It is excruciating. But you know what? We are strong women and we can do ANYTHING! I am here.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #4
    debbie_from_cincinnati said:

    I love you
    Oh honey. I read your comment and just cried. Your scenerio is exactly like mine. I too am resisten to treatment, but also reaks havoc. I know you are going through a very painful recovery. I remember it vivadly. The pain was unreal. And the mental strain...give me a break. I hope you have good support. Being someong that came here looking for it, I can tell you how important it is to have the ones you love there, open to what is happening and offering you their heartfelt support. I can tell you that I am here and I love your soul for what you are experiencing. It is excruciating. But you know what? We are strong women and we can do ANYTHING! I am here.

    Thanks so much for responding!
    When I read your post initially, it sounded like you may have had undiagnosed UPSC. No one posting on this site seems to have my same cancer; your description sounded closest to mine. And I had to shop around 2 months to find an oncologist/pathologist who could put a name to the 'abnormal cells suspicious of of endometrial carcinoma.' I am in that grace period (the last one for a LONG time, I'm afraid!) where my surgery was 2 weeks ago and the horrible digestive/gas pains are now over and I feel almost sort-of normal. I have been given 2 weeks to heal before my radiation starts, and I am going out each day for lunches with my friends, and am working hard to train my staff to cover for me at work for the next 6 months. (I have my own business: www.procopiofundraising.com .... So my treatment is complicated by the fact that I need my BUSINESS to also survive my cancer.) I know that the next 6 months are going to be horrible and the most important 6 months of my life. My ongologist is planning a VERY aggressive schedule of radiation and chemo. I have a lot of close family supporting me, but right now my family and friends are at that "You're gonna be FINE! You'll sail right through this!" stage of encouragement/denial. No one ever says "You poor thing are about to go through a God-awful horrible time." Instead, it's all "I know how brave you are, how strong; you'll suck it up and be FINE!" You know that country song?: "call me Cleopatra 'coz I'm the Queen of de-Nile"! HA!
  • heidiandcyron
    heidiandcyron Member Posts: 2
    #5
    Appreciating you
    I appreciate your post. I have stage 4 metastatic Endometrial Cancer. My husband is also an incredible person but doesn't know how to be in touch with my journey although he tries. When I talk with cancer people I always tell them to allow themselves "cry time". We all need it. It's healty. But limit it. Don't let it swallow you up. Give yourself "laugh time", "praise time", and "fight time" also. I hope your faith will increase. You are not alone. Hold your head up high. Bald is beautiful. When you go to radiation and chemo you will find it can be awesome to talk with people in cancer journeys. You, just by sharing your story, can touch other's lives. You've touched mine. I hope you will get a sense of how "impacting" you are as you share your life. Maybe your husband is like mine. He is scared. He is afraid of what will happen to me in the future. He doesn't want to lose me. He thinks he is helping me by denying what is apparent to me. It's because he loves me. So I accept that he is dealing with my cancer in his way. I find it easier to talk with a small circle of people that can relate. I pray you will find people whom will help you fight and validate you. I pray you will get support. Don't give up. Laugh, love, be strong and enjoy your children. I know they need to be shielded form the harshness but don't sheild them from you. They need you. You need them. I wish you the best.
  • debbie_from_cincinnati
    debbie_from_cincinnati Member Posts: 14
    #6
    heidiandcyron said:

    Appreciating you
    I appreciate your post. I have stage 4 metastatic Endometrial Cancer. My husband is also an incredible person but doesn't know how to be in touch with my journey although he tries. When I talk with cancer people I always tell them to allow themselves "cry time". We all need it. It's healty. But limit it. Don't let it swallow you up. Give yourself "laugh time", "praise time", and "fight time" also. I hope your faith will increase. You are not alone. Hold your head up high. Bald is beautiful. When you go to radiation and chemo you will find it can be awesome to talk with people in cancer journeys. You, just by sharing your story, can touch other's lives. You've touched mine. I hope you will get a sense of how "impacting" you are as you share your life. Maybe your husband is like mine. He is scared. He is afraid of what will happen to me in the future. He doesn't want to lose me. He thinks he is helping me by denying what is apparent to me. It's because he loves me. So I accept that he is dealing with my cancer in his way. I find it easier to talk with a small circle of people that can relate. I pray you will find people whom will help you fight and validate you. I pray you will get support. Don't give up. Laugh, love, be strong and enjoy your children. I know they need to be shielded form the harshness but don't sheild them from you. They need you. You need them. I wish you the best.

    You are right...
    I know our husband's hearts are in the right spot but he has been my rock for as long as I can remember (we are celebrating 15 years of marriage and 19 years of being together tomorrow) and right now I need him more than ever and he is shutting down. It is so hard.

    I find this site so incredibly helpful that I am feeling better with every post. Thanks for your supportive words and inspiration to keep on fighting.

    Smile today!
  • Kooper
    Kooper Member Posts: 2
    #7
    Hey hang in there it does
    Hey hang in there it does get better. I was first diagnosed in 1997 with cervical cancer, had a hysterectomy, 2007 the cancer came back! Had chemo and radiation at the same time, was clear for 6 months, the cancer again returned. In April of 2008, had a pelvic exteneration, was in the hospital for 2 months, was then home and have been back in since for anorexia, but now 6 months later life is ok! Take the pain meds, keep the bags from leaking and live life to the fullest! I am here just to chat it you need it
  • pjba11
    pjba11 Member Posts: 188
    #8
    debbie_from_cincinnati said:

    You are right...
    I know our husband's hearts are in the right spot but he has been my rock for as long as I can remember (we are celebrating 15 years of marriage and 19 years of being together tomorrow) and right now I need him more than ever and he is shutting down. It is so hard.

    I find this site so incredibly helpful that I am feeling better with every post. Thanks for your supportive words and inspiration to keep on fighting.

    Smile today!

    USPC Grade 3 Stage 1C
    mine was USPC grade 3 stage 1C. Diag. 2 yrs ago. How are you doing now? Would like to hear what is happening? You have been in my prayers. Thanks.
  • baymare
    baymare Member Posts: 5
    #9
    Feeling alone
    Dear Debbie,
    I don't know what to say to you right now that would be a comfort... except that I've felt the same. I'm a single mom; I don't know how I'd handle this with a partner. It's complicated enough.
    Do you have any girl friends? Even though they can't know what you're going thru, they can sometimes listen as you unload... and on good days, they can drag you out of the house & distract you into doing something "normal", ( ie. a movie, lunch, anything )
    I was told by a social worker - who I called while having a meltdown of hysterical tears - that I wasn't "getting upset". That I was in a constant state of BEING upset by the cancer, etc. , so everything feels like too much and puts me over the edge. Enter Xanax.
    I'm a long-time AA member & not at all into "better living thru chemistry" ( ha! except for chemo?! ) but the anti-anxiety medicine has helped me to maintain a modicum of balance. That means I don't cry when the toast burns or break crockery when I'm put on hold by the doctor's office.
    I wish I could knock on your bathroom door, that you'd let me in. I could sit on the edge of the tub and listen. Probably use a roll of tp, both of us crying it out!

    I wish you comfort and rest. I'll pray for you ( today I'm not too p.o'd with God to pray )

    Hang in. Hold on. And keep reaching out till you get what you need.
    Mare

Discussion Boards