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Just need to talk

Ayishah29
Posts: 3
Joined: Oct 2003

I've been a registered user since October 2003 when I was first diagnosed, but I always just visit the site, look around for a few minutes, and then I leave because I feel out of place. I don't really think of myself as a "survivor". I don't feel like I've survived anything. I feel like I'm living outside of my old self. I'm still angry about having had to go through this whole ordeal. I had an abnormal pap while I was pregnant with my son, I had the pap done in March 2002, but my ob/gyn didn't catch the abnormal results until July 2002, so she did another one just to be safe. That one came back as severe dysplasia also. After telling me I definitely didn't have cancer, I was sent to an gyn/onc who did a colposcopy and told me that a biopsy wasn't necessary at the time because I was 7 mos pregnant, and he didn't want to risk pre-term labor. I was to have the biopsy in January 2003, 2 mos after I delivered my son. I went back to my ob/gyn and she did another pap which came back normal. She told me that sometimes pregnancy causes abnormal readings, and that I should have another in 6 months. Of course, I forgot about the pap smear and only went in for birth control visits. Through all this time, I'm still in lots of pain. I couldn't have sex, and if I stood for more than 10 mins at a time, I felt tremendous pain and pressure in the ab area. In September 2003, I went in for another birth control visit, and my ob/gyn told me I was overdue for a pap. I had it done that day and the next day she called and said I needed to have a biopsy immediately. She called me a few days later and asked me to come in for the results. Cancer. She told me that in January, the lab she uses mis-reported those pap results; so I had actually been walking around with cervical cancer for 9 months before it was detected. The only thing was that at my age (29), radiation wasn't an option because of the long-term effects. So, I had a hysterectomy in December. It's been 3 mos, and I'm still not sure how I should feel. Whenever I bring up my feelings and what I'm going through with friends and family, I always hear how fortunate I am to have been able to have my son. I am truly grateful for my son. My love for him increased tenfold after I was diagnosed, and I didn't think it was possible for me to love him more than I already did. I still feel like a vital part of me is missing. I'm moody and so depressed at times, I won't even shower or get dressed for days at a time. The one thing I have that keeps me going is my son. But, when he's not home with me, or asleep; I have nothing else to focus on. How do I keep the foggy moods from taking over? Do I even have a right to feel this way?

grannyfranny
Posts: 42
Joined: Jan 2004

Ayishah, I'm so sorry that you're feeling bad. You've been through a lot. It's no wonder that you're angry and depressed, and you have every right to feel the way you do - good heavens, you didn't CHOOSE to be miserable, any more than you chose to have cancer. (If anyone tells you "You shouldn't feel that way," please sock them someplace painful and tell them it's from me.)

I'm not an expert, but I do know that it's common for cancer patients to get depressed, it's common for post-op patients to get depressed, and it's common for mothers of infants to get depressed. It's normal. It's also common for depressed people to feel guilty about being depressed, and then we feel guilty about feeling guilty. I say "we" because I myself am depressive.

All of this is normal, but it's also miserable - so the question is, what can we do to help ourselves? I certainly can't prescribe for you, so I'll just tell you a little of my own story. Last June 30, after five days' shortness of breath (SOB for short), I developed chest pains and was admitted to the ICU of the local hospital. I got oxygen and an anticoagulant, was hooked up to monitors, and had a whole lot of tests; the docs found that I had a pulmonary embolism (lung clot) resulting from a deep-vein thrombosis (clot) or DVT in my right leg. I had a filter implanted, if that's the word, in the inferior vena cava (a big vein in my middle) to keep any more clot fragments from getting from my leg to my lungs or heart. Cool. Except that the DVT apparently had been caused by a tumor in my uterus and cervix. Just when I was feeling incredibly relieved and lucky to be alive, I got the cancer diagnosis. Home on oxygen, delay so I could recover from the embolism, self-administered injections in my belly fat - lots of fun all around - and finally, August 19, a radical hysterectomy. There was an 85% chance that I was safe from a recurrence in the pelvic region, and I could further improve the odds by having radiation. Everyone told me how lucky I was.

I was also deeply depressed. I got up and about, took walks, looked at the autumn leaves - and thought, "How lucky these people are, to have such beautiful leaves. How lucky they are to have the gorgeous deep-blue sky. How lucky they are to have ducks and swans and adorable children and loving spouses." How lucky THESE PEOPLE are. I wasn't in the middle of this beautiful world, I was looking at it from the outside, as if it were a scene in a snow globe.

Here's what helped: I had the radiation and got that out of the way. I already had a physical therapist, so I got her to work on the after-affects of the surgery. I was already on anti-depressants, but they weren't doing the job, so a started seeing a psychiatrist from time to time to find the right medication and dose. I also started seeing a psychologist to talk through things. (It just happens that the clinic I go to assigns the client one of each, with the psychiatrist supervising the psychologist.) And I went with my husband to the annual meeting/convention/whatever you want to call it of a group he belongs to - they're all Viet Nam veteran clergy or nuns, of all things, and oh boy, do they understand trauma! They hugged me, reassured me, gave thanks that I was still alive, and - maybe the most important part - told their own stories. Then we all prayed for each other and for other survivors of trauma. With them, I was inside, looking around me, instead of outside, looking in.

Ayisha, I hope you can find people who will listen to you and also share their own stories with you. I hope, too, that you will see an internist (if you haven't already) to make sure that you're physically healthy and that you will talk to her or him about your depression. Even though it's probably temporary and situational, there's no good reason for you to go on suffering. If the first doc brushes you off, try another one. Ask a nurse or a pharmacist to recommend someone - they know all the bad stuff about doctors! A good internist should also be able to advise you about physical therapy for pain or scar tissue, or counseling, or medication to help you get back on your emotional feet.

I hope I haven't blabbed you into a coma. Your message really touched me. I'll be watching this discussion board to see how you are. You ARE a survivor, all of us here are - we've all been broken and messed about to one extent or another. If we hadn't been, we wouldn't be survivors; we'd just be inexperienced.

Ayishah29
Posts: 3
Joined: Oct 2003

Fanny, thank you for responding, your kind words and the wonderful advice. I felt kind of silly posting, but I am relieved to know that there is at least one other person who has felt what I'm feeling. I'm really trying to hang in there, and I realize that I may need some outside help.

grannyfranny
Posts: 42
Joined: Jan 2004

Hey, that's Franny, not Fanny! Watch it, youngster!

grannyfranny
Posts: 42
Joined: Jan 2004

How are you doing, Ayishah? And how's that beautiful 16-month-old of yours? Have you talked with one of your doctors about how you've been feeling?

I was wondering if you sew, knit, or crochet. Since your life is pretty well centered on your son right now, maybe you'd enjoy making something for him. (Something big, so he won't outgrow it before you finish!) Or you could take him the library and check out some books to read to him at home, or maybe a book of lullabies to sing to him. Doing any of these things, you would be paying attention to his needs while you still got a little variety in your own life.

Hang in there!

london
Posts: 1
Joined: Mar 2004

Ayishah,

I just read your posting and I am still sobbing only because I feel the same way. I am going on 4 years since I have had my surgery and its been a long 4 years by myself with no support. So to hear the the way you have been feeling, bridged so many feeling and emotions that I have privately delt with for years...

I would really like to chat with you further and share more with you. I too really need to talk.

My e-mail is london@pacifier.com

Thank you for writing and sharing how you are feeling.

Sincerely,

Katherine

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