Cervical Cancer Resources/Communities

I didn’t have any local support groups when I was diagnosed with cervical cancer, so I got the support I needed in online communities. Here is a list that I found to be most helpful, and will hopefully be of use to you as well.

The Teal Ladies: A closed Facebook group that offers support and information for women dealing with gynecological cancers

Teals the Deal: A foundation a foundation for gynecological cancer awareness’s, education and support

 

The National Foundation for Women’s Cancer: Raise public awareness of ways to prevent, detect and optimally treat gynecologic cancers; Provide education about gynecologic cancers and the importance of seeking care first from a gynecologic oncologist if a gynecologic cancer is suspected or diagnosed; Support promising, innovative gynecologic cancer research and train a cadre of clinicians/scientists to participate in clinically relevant research.

Cervivor: While everyone experiences cancer as an individual, we want to help survivors bring their collective wisdom together to create a community of advocates.

I highly recommend you check them out!

xoxo Jennie

Well Woman Visits

It's very easy to be confused at the difference between a pelvic exam and a Pap smear, and when each should take place. A well woman visit is an annual exam that consists of a pelvic exam, but not necessarily a Pap smear. Pap smears used to be given annually, but studies shown that that actually was more harmful than helpful.

So what is the difference between Pap smear and well woman visit? Well woman exams consist of much more than just a pelvic exam. A well woman exam cover a range of issues pertaining to women’s health issue, such as; breast exams, STI testing, dispense birth control prescription, and a more detailed examination for women who have had total hysterectomies, but are having symptoms possibly related to cancer.

So what exactly is pelvic exam? A pelvic exam is when your gynecologist inserts a gloved finger into your vagina, while pressing down on your lower abdomen. There are several reasons for this:

• It can give a warning that a woman's uterus is starting to prolapse, meaning that the muscles holding it in place have weakened and it is slipping out of place and down towards the vagina. This can happen after pregnancies, so it can affect both younger and older women.
• If a woman's organs seem stuck together that could be a sign of endometriosis. Findings on the exam might prompt a doctor to ask whether the woman is having pain during intercourse.
• In younger women, the exam can offer doctors a chance to teach women about their bodies.

Those opposed feel that a pelvic exam isn’t a good indicator of uterine cancer. Dr. Jennifer Potter, director of the Women's Health Center at Beth Israel Deaconess Medical Center and an associate professor of medicine at the Harvard Medical School. Dr. Potter says that “Beyond the discomfort caused by the exam, there are more dangerous downsides, Potter. For example, when doctors find something that feels amiss, women may get further diagnostics including surgeries they wouldn't 

Many women follow their well woman exam schedule to the letter, which is important because cancerous symptoms can show up between scheduled Pap smears, and the well woman visit gives you the opportunity to discuss any concerns you might have with your doctor. I would say that for that reason alone, the well woman visit is important.

xoxo Jennie

Losing Someone You Love

It is never easy when someone you love dies. It is especially difficult to watch them suffer a protracted illness, such as cancer. But if you are a member of the cancer community, chances are you have lost at least one person that you love.

Those of you who have read this blog before know that I lost a very dear friend not too long ago. I met Melissa through a support group on Facebook for women with cervical cancer, and we immediately hit it off. We developed a friendship outside of the group. I was there the night she married her long time fiancé, Ed, and it was one of the most joyous occasions of my life. We spoke almost daily, sometimes in the middle of the night when either of us needed a good cry. We laughed together, loved each other deeply. She was the sister I never had.

Melissa never reached her goal of being NED. Her cancer metastasized, until her body couldn’t take it any more. On November 17, Melissa won her battle in this life, and moved on to a better place. She is now my guardian angel, watching over me.

I have seen too many women die, young women, from this disease. Since a lot of the symptoms for cervical cancer are so ambiguous, it doesn’t immediately cross doctor’s minds until it is too late.

The death of a loved one is devastating. Watching someone you love is absolute torture. And cancer is a bitch. You can do every treatment recommended and available to you, and for some it just doesn’t work. The cancer keeps growing and growing.

When Melissa died, I didn’t want to get close to anyone going through cancer. I didn’t want to hurt like that again. But there are people that I have come to love who are still sick, and despite my fear, I have found myself caring for them deeply. I pray every day that they will go into remission, but I know that even if I lose them too, I won’t regret it. Even though I lost Melissa, I never for a second have regretted my friendship with her. She brought so much joy into my life, and I know that these other women do too.

When you lose a loved one, the best thing that you can do is honoring them by remembering them. Do something special in their honor. Yes, there will be grief. There will be times when the thought of their death will hit you like a wrecking ball. But when you truly love someone, they are never gone from your heart.

xoxo Jennie

Guest Blog Post - Jeff

Today's guest post is by my amazing husband, Jeff, and what it was like for him when I was diagnosed with cervical cancer. He says he isn't good at expressing his feelings, but his writing brought tears to my eyes. Thank you baby, for being courageous enough to share what things were like from your point of view.

Jennie has been asking me to write a post about my initial feeling after getting the diagnosis she had cervical cancer. As most males, I’m not too keen about sharing my feelings, but after putting it off as long as I could, I think I finally have my thoughts put together on the subject.

Most of you probably know Jennie’s history, but I had been on her about finding the cause of her pelvic pain for some time. I was not prepared at all for finding out it was cancer. Initially I was quite terrified hearing the words cancer, but in trying to be a protector and fixer, I decided I would not be a burden to her by showing her how scared I really was. I thought everyone else around her seemed to be crying and scared, so I needed to be the strong one and get us through this. Obviously looking back on this now that was not what Jennie needed from me. After lots of couple’s therapy, I came to the realization that she thought I didn’t care, but nothing was further from the truth. She was going through enough as it was and I didn’t want to add to her emotional stress.

I had lots of other emotions, like anger and helplessness. I like to fix things, and this was one thing I could not fix, as much as I wanted to. Anger came from the hopeless feelings of why this was happening to her and us.

When Jennie got sick I was terrified of losing her, but decided the best thing for me to do was to be strong and say everything is going to be fine. I was trying to be as positive as possible. The cancer still scares me, but I'm very hopeful everything is taken care of and want to continue to believe that.

After Jennie’s hysterectomy, her doctor said things went very well, and he was feeling pretty good about her long term well being. I was obviously relieved and grateful that things worked out like they did. Every day that passes and there is no recurrence I feel a little better that she has beaten this thing. Personally I’m hugely proud of how she has handled everything.

For all men that think they need to be strong for your partner, my advice is this: Know that she is so much more stronger than you ever imagined. It’s OK to be scared with her; that is not weakness it’s loving support.

The Caregiver Role

Cancer is a very taxing disease, and the treatment is even more so. Surgery leaves you in pain, and unable to do the things you normally do. Radiation leaves you exhausted. Chemotherapy makes you tired and nauseous. Even something as seemingly easy as going to a doctor’s appointment is difficult to do on your own.

This is where caregivers come in. You might have one, you might have several. But they are all critically important to your illness and treatment.

Cancer patients need at least one caregiver, especially those who are in advanced states of the disease. A caregiver is someone, usually a friend, husband, or boyfriend, who takes care of us when we are too sick to manage on our own. This can include taking the patient to treatment and doctors appointments, all the way up to helping the patient do things like change their colostomy bag. it is hard work all the way around.

I was lucky. I had both my husband and my mother to take care of me. My mom went to my early appointments to write down what Dr. L said, and ask questions (I was still in too much shock to ask important, intelligent questions, let alone remember the answers).

My ex-husband stepped up to the plate when I had surgery by keeping my son over nigh after my hospitalization. He also helped me talk to our son about my cancer, and what it meant. Together we were able to reassure our son that I was in good hands, and that my doctors we sure I would be ok.

When I had surgery, my husband, my mom and my son where there in the waiting room. My mom wound up walking my son around to distract him because he was very worried. But everything went fine, and he was relieved.

I spent one night in the hospital, and my mom stayed with me. I was in a lot of pain, so she spent a good deal of time in my room with me, or helping me walk the halls, even though there was a sleeping area for family members. And after my surgery, she stayed with us at home for a week to help out.

My husband was a huge help during my recovery. He took care of our kids, brought me food, took care of our dogs, and just generally made sure that I was as ok and comfortable as possible. He brought me my pain medication, and made me tons of grilled cheese sandwiches, because I didn’t have much of an appetite.

For another take on being a caregiver, check out this post on cervivor.com from my friend Erica’s husband!

http://cervivor.org/honoring-cervical-cancer-caregivers/

xoxo Jennie

Guest Blog Post - Reilly

Today is a very special post from my amazing son, Reilly. When I was diagnosed with cervical cancer, he was 11 - a very difficult age to even begin to understand what cancer means, especially when it was his mom who was sick. I am so thankful for his support and his bravery. He really was my rock during my illness and recovery.

When I found out that my mom was diagnosed with cancer, I didn’t know how to respond. I was in shock, definitely, but I couldn’t respond. She then told me it probably wasn’t going to kill her, that helped but she said probably and that just, raced through my mind. She told me she was going to have her surgery, and that would take out the cancer and that I was welcome to come to the hospital for support. When the day came for the surgery I didn’t really know what to do. It wasn’t long until she came out of the operating room, alive and cancer-free. The next day she had to tell me there was a small chance of it coming back, but nothing to worry about. The way my mom persevered in this scary time really made her a trooper. I am proud to say my mom is 18 months cancer-free and she plans to keep it that way.

Cancer Is A Family Disease

When a family member is diagnosed with cancer, they are not the only one affected. All of that person’s family members and friends go through cancer right along with the patient.

 

When I was diagnosed with cervical cancer, my family went through it right along with me. My mother and my husband took care of me. My ex-husband spent more time with our son because I wasn’t able to do the usual mom things. My son needed reassurance that I was going to be ok. My friends reached out with offers to help in any way that they could.

Cancer is a life threatening disease, and it is scary as hell. Your loved ones are terrified that they are going to lose you. They want to do something, anything to make this go away. And they can’t.

My husband spent time alone crying because he was terrified that I was going to die. My son cried in my arms at the thought of losing me. And my mother cried with me at the injustice of it all.

Cancer rocks a family to its very core. There is so much helplessness. There is so much that is unknown. And family members feel that they have to be strong for their sick loved one.

Fortunately, there are ways for family members to deal with their feelings. There is therapy. There are support groups, for adults as well as children.

Cancer is very taxing on family members. They are left to fill the void that the patient is unable to do. Things like housework, taking sole care of the children, and also taking care of their sick loved one. It is all very difficult.

Hopefully those family members seek help. A loved one having cancer is too much of a burden to shoulder on one’s own.

xoxo Jennie