Amy's Cancer Survival Story

Despite presenting to medical professionals with a number of ovarian cancer symptoms, Amy waited many months for a diagnosis. Here she talks about her struggle for answers, the power of positivity and why – ultimately – it was hope that helped her through…

I think it’s the missed opportunities that hurt the most. For me, an earlier diagnosis could have saved me months and months of pain and confusion. Now my life has changed so much since my diagnosis – but I don’t let cancer shape my life; I shape my life around cancer.

I was poorly for a long time before my diagnosis. I first went to my GP because my husband and I were trying for children. I was having trouble falling pregnant and my doctor referred me for fertility tests. At the time, I was weeing a lot and having very painful periods. A scan revealed an ovulation cyst and I was referred to a urologist for bladder symptoms. By the following year I was becoming increasingly tired and I started to lose weight. I’d been born with a heart condition, so I started to think perhaps my symptoms were related to that. I see a cardiologist every year and I decided to mention my problems to them. It was suggested my symptoms could be stress related because I was studying at the time.

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Zowie's Cancer Story

Just over a year ago, Zowie was diagnosed with stage IV ovarian cancer. The 28-year-old mother of two spent over three months in hospital undergoing a full hysterectomy, colostomy and three rounds of chemotherapy. Zowie recently returned to work, ran a 10k in her underwear to help raise money for Target Ovarian Cancer, and will be joining us at our Run for Mum event...

Running in my underwear was about me celebrating my body. I wanted to show that I’m unashamed of my scars and proud of my strength.

In June 2017, I noticed my belly button had turned purple. I went to the doctors in September, and was initially told it was probably a hernia. I waited six weeks for a scan, only to find out it wasn’t a hernia, and that I would need further testing. I had a CT scan in January, and from there it snowballed; I had an ultrasound, another CT scan, several blood tests and a biopsy.

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Recurrent Ovarian Cancer

My name is Mandy. I have recurrent ovarian cancer and it’s been more than five years since my diagnosis. This is my story…

I would say things began in late 2013, but like many women with ovarian cancer, I’d been experiencing symptoms before that. And like many women, I put them down to the onset of the menopause. One of them slightly worried me: a bloated tummy. But I wasn’t worried enough to take time off work and go to the GP. I promised myself I would go in the Christmas holidays.

Before I could get to the GP, things went sideways. I went to work feeling fine but developed extreme tummy pain. At my local walk in clinic I was diagnosed with a large hernia and given paracetamol. I went home but the pain only got worse, so I went to my GP. She was brilliant. The following day I had a CT scan and two hours later a lovely man came into my room and introduced himself as a gynae-oncology consultant. I was operated on quickly, and on Christmas Eve we learned that I had advanced, high grade serous ovarian cancer. At this point I knew very little about ovarian cancer and I used websites like Target Ovarian Cancer’s to fill in the gaps. I started six cycles of chemotherapy, which was very hard and there were times when I wanted to stop, but I stuck with it.

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Unusual Symptoms

Not everyone has the textbook symptoms of ovarian cancer…just ask Ann-Marie. Here she talks about her unusual route to diagnosis, the fear of the unknown and why, when it comes to ovarian cancer, knowing your body is just as important as knowing the symptoms.

Coming to terms with my diagnosis was really hard. They didn’t know what it was at first – either ovarian cancer or lymphoma. The fear of the unknown was really difficult because I didn’t know what would happen to me.

My symptoms began fairly innocuously. I was going out for the day when I felt pain in my leg. A few weeks later my leg had swollen up and I was having a lot of discomfort. At first I thought it might be my coil, but when I went to the Family Planning Clinic they said it was fine, so I wasn’t too worried.

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Diane's Cancer Survivor Story

Diane, 40, was diagnosed with ovarian cancer in 2012. Frustrated by the delays she experienced in being diagnosed, she is passionate about speaking out to make sure other women do not suffer the same issues. Diane lives with her teenage son in Walthamstow, London.

I knew something was wrong with me, I didn’t feel well at all. I had pain in my abdomen and groin, I lost my appetite and struggled to eat. I was being sick, had bowel problems and lower back pain.

At the end of April 2012, when my right leg started swelling, I went to my GP who immediately sent me to A&E. I was misdiagnosed with having a superficial blood clot in my vein, after having a CT scan and ultrasound. I was admitted to hospital for eight days, I had very high blood pressure, my blood count was very low, and was treated with Caelyx, to thin out my blood. The doctors then discharged me, even though my leg was bigger than when I’d gone in, saying I should go home and “put my feet up”. I was distraught, and said I didn’t feel I was ready to go home and still didn’t feel well. I went back to my GP the next day, who was very annoyed, and she sent me back to the hospital with a letter saying that I should be referred to a different consultant.

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Cheryl's Story: Ovarian Cancer

Cheryl Lampasona was 21 years old when she was diagnosed with a rare type of ovarian cancer that only 12 other people in the world have had. In virtually uncharted territory, it was unclear if she would be able to have children or what the treatment would be. Her doctor, Diane Contreras and the team at the Katz Institute for Women's Health, treated Cheryl, and now Cheryl has two beautiful children. Watch her story.

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Survivors tell their story

The Teal Quilt: Ovarian Cancer Survivors Tell Their Stories"

Ovarian Cancer Amazing Miracle Story-How a Mother and Daughter saved each other

Tell Every Amazing Lady About Ovarian Cancer, Louisa M. McGregor Ovarian Cancer Foundation also known as T.E.A.L. has a mission to promote public awareness and education of the signs, symptoms and risk factors of Ovarian Cancer, while providing support to survivors and raising funds for research in order to find the cure for Ovarian Cancer.

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These days I can not think about cancer at all.

It doesn't just come up in conversation when you're 22 - 'hey by the way a few months ago I had cancer'.
"For months afterwards it was all anyone ever wanted to talk to me about." says Lisa Arthurs

Lisa wanted to talk about going to the UK to study abroad - not cancer. She knew everyone was looking out for her but at the time it was the last thing she wanted. "I'd never had to deal with anything like that before in my life." says Lisa.

She didn't want to - She wanted to be Lisa again, she struggled to know how to tell people. "It doesn't just come up in conversation when you're 22 - 'hey by the way a few months ago I had cancer'." says Lisa. When she had a follow up appointment in the UK she opened up to one of her friends and asked her to come to her appointments with her. She wishes she could have accepted that kind of help earlier. "I think it's important to let people in. It might be scary but in the end you need people around you. I have had the difficult task of considering if and when I share this part of my life with new friends and partners." But the best thing she learned from finally letting other people into her life is that everyone just wants the best for her. "No one is going to judge me." says Lisa.

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...It turns out I had a borderline stage one ovarian tumour the size of a rugby ball.

It all started when I noticed a lump developing.
Julie Makin has been following Ovarian Cancer Action’s activity since she was diagnosed in April 2010 with an ovarian mass. It all started when she noticed a lump developing on the right side of her stomach. In a short time her bowel movements became so regular she became practically incontinent. And she had to urinate at lease 10 times a night. "The worst part was falling asleep at just after 6pm, which was not normal at all for me." says Julie.

"My stomach started to swell and I changed from a dress size 12 to looking nine month’s pregnant. I went to my GP who did an ultrasound and then referred me to my local hospital where they did another ultrasound." says Julie It felt like they didn’t know what to do. She had an MRI scan at a different hospital and her oncologist told her that they had to get this “thing” out and quick.
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Life was Separated

Cathy’s Cancer Survivor Story:
After I got over the initial shock of my diagnosis, after I recovered from my surgery, after chemotherapy was in my rearview mirror, something miraculous happened. I began getting on with my life. But I was forever changed, and in many ways, that was a good thing. For one, after my ordeal, I appreciated more, especially the little things.

But my life was separated into distinct two parts—before breast cancer and after breast cancer. I settled into a new normal. I was able to make peace with my scar, and see it as a badge of courage, as defiantly beautiful—it meant I was still alive. Maybe you will choose to mark your transition with something significant. A trip, a special purchase or perhaps a tattoo, like I did a year after my last chemo infusion. The cherry blossom branch that caresses my war wound is symbolic of my springtime diagnosis. To me, it signifies rebirth and hope.

I began attending SHARE meetings a few weeks after my mastectomy at the suggestion of Renee, a BC sister in my yoga class. Facilitators Marjorie, Agnes and the women in the ongoing group held my hand through my body rejecting the tissue expander (and emergency surgery to remove it), through my dread of chemotherapy, through my fatigue, baldness and my struggle with steroids. With their encouragement, I began to feel that maybe, just maybe, I would get through this.

When I came out at the other end of the tunnel, a strange thing happened. While I still went to SHARE meetings for a supportive "fix," my role slowly evolved. Somehow, I had transitioned and now I was a mentor for women newly diagnosed. Friends down the block and across the Atlantic in the Netherlands and the UK began asking me to talk to women who'd just received life-altering news. Sometimes it was exhausting. Sometimes it gave me flashbacks. But I was always willing to reach out to them. I felt it was my duty as a survivor.

I was honored when SHARE asked me to participate in their "Side by Side" program, where cancer survivors are matched with classrooms of medical students and teach them, through personal eperience, how to best communicate difficult diagnoses with future patients. So far, I've gone to the New York Medical College in Valhalla twice, and I think I've gained as much from it as I have hopefully given.

When SHARE was looking for volunteers to offer insight about what not to say to a cancer patient for an NBC segment: I jumped at the opportunity. This led to an interview on a Women's Radio Network program on the same topic. In both cases, I welcomed the chance to tell more people about SHARE. They've been such a big part of my healing journey and I was finally able to pay it forward.I don't mind being a breast cancer "go-to girl," even for strangers. When I noticed on Facebook that the wife of a guitarist whose work I admire was recently diagnosed, I joined "Melissa's Healing Hope," her online blog. I tried to write encouraging comments after each post. One day, there was an email from Melissa with the subject line: "When does the worry stop?" I responded as honestly as I could. I told Melissa that I don't think you ever stop worrying about recurrence but after a while, worrying takes a backseat to living.

A couple of months later, there was a telephone call from my cousin Elaine, asking third-person questions about breast cancer. I originally thought she was inquiring for a work colleague until I realized she was talking about herself. "I found a lump..." Elaine began. I listened. She asked. I answered. I was there when she couldn't sleep, IMing at midnight. I was there when she came out of recovery after her lumpectomy. I was there, texting her during chemo infusions. And I'm still there.

At this past SHARE holiday celebration, Gina, who's wrestling with chemo and lymphodema, told me, "Seeing you at meetings is such an inspiration." I was so moved I couldn't speak. After all, I was just muddling through like everyone else. Just forging ahead because what other choice do we have? But then I realized that maybe I was the light at the end of the tunnel for someone currently in treatment.

At this point my life, I'm not quite sure where I belong. It's not so easy diving back into the workforce after cutting back my workload to give myself a chance to heal. As a result, my assignments have dwindled. But post-diagnosis, I try not to stress over things like this. Nothing quite pulls the rug out from under you like the words, "You have breast cancer." Everything else is small potatoes in comparison. But maybe I have a different mission now, instead of writing about the onboarding process for Fortune 500 companies. Maybe paying it forward is a bigger mission.

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Lump on her Birthday

I found the lump on my birthday, October 25th, 2014. It wasn't a happy 43rd. August 2014 I had my routine mammogram and a week later the letter from the hospital arrived; everything was "normal." Apparently, I have dense tissue in my breasts so the mammogram didn't detect the lump. (Ladies, if you have dense tissue in your breasts – ask your radiologist - don't stop at just a mammogram!) As soon as I felt it, I knew the mass didn't belong in my body; fear enveloped me.

A mammogram, an ultrasound, an MRI, a chest and abdomen CT scan, a bone scan and a few biopsies later, I received the diagnosis of triple negative breast cancer, stage three. Triple negative means my cancer is not fueled by any hormones: estrogen receptors, progesterone receptors or human epidermal growth factor receptor 2 (HER2); it is fast growing and has a higher percentage of reoccurring in other parts of my body.

The thread throughout my cancer diagnosis was fear. It gripped me tightly in its hands and whirled me around until I was dizzy and exhausted. I felt alone in my terror; friends and family would try and ease the pain by saying "There's a cure!" "Breast cancer is the best kind of cancer to have!" and "You'll be fine, my sister/cousin/hairdresser had it and she survived!" I politely nodded my head, thinking to myself, "You're not God, you don't know if I will be that small percentage of women that die from breast cancer – it happens!" I was being realistic. I wanted my fear to be acknowledged; I longed to be heard, and held, not patronized.

The steps I took that got me through my cancer diagnosis and treatment:

I clearly asked for what I wanted, whether it was lentil soup, a foot massage, silently being held on the couch or phone calls from friends; I didn't assume people knew what I wanted.

I was my own health advocate, making the necessary phone calls to my insurance and doctors: I scheduled many appointments, second and sometimes third opinions.

I accepted offers from friends, family and acquaintances for accompaniment to appointments; if no one offered, I asked. Even if it was a simple test I could clearly go to by myself, I needed their company to distract me from my catastrophic thinking.

I got a copy of every medical report, scan, test, x-ray, etc. that was done to me. I made sure I understood what was happening, asking my doctor questions along the way.

I kept a diary of all of my appointments; what was done, where, and who was the ordering doctor.

During chemo, I relied heavily on the nurses – they provide all the caring and a wealth of knowledge and tips.

I threw cancer parties: I'm the kind of person that needs support from my friends, so I made it happen.

I wore my natural looking wig when I wanted, and replaced it with hats towards the end; the wig was annoying. I did have fun at one point and bought an array of different colored wigs: I felt like a rock star when I wore them and got many compliments.

I posted on Facebook (that's my way of communicating to many people, but there's also that I encouraged phone calls and visits, and then I received them - that made me happy.

I made sure to get out every day, whether to run an errand, have a meal with a friend or see a movie with one, getting out and hearing people talk about their lives was refreshing.

I watched a lot of television, which is unnatural for me. It took my mind off of myself, and during chemo, it helped me to relax; I stuck to comedy and romance.

I watched Kris Carr's Crazy Sexy Cancer movie. It scared me, but it also made me feel like I am not alone.

I spoke to other survivors I knew and met up with them for coffee. When I felt overwhelmed, I took a break.

I made my cancer accessible: I answered people's questions about my health and diagnosis then I'd change the subject.

I bought several breast cancer books and flipped through them, with a friend, when I had a specific question; reading them alone was too scary.

I joined Facebook groups for triple negative breast cancer and the likes, and when I got overwhelmed or scared, I stopped reading the posts.

I limited googling information about my type of cancer.

I brought the same friend with me to each important appointment; she took notes and learned the breast cancer vocabulary alongside me. I turned to her during my decision-making process.

I called a cancer support hotline in New York City, SHARE, and spoke at length to a survivor on the phone. I was relieved - I finally felt heard, understood and supported! I keep in close contact with SHARE and still go to their cancer support groups.

Cancer support groups are monumental in my recovery: I learn a lot from the facilitators and the survivors, and I can speak my mind in a safe environment, where I am unconditionally loved and understood.

I was afraid to attend support groups for fear of hearing horror stories. When I was ready, I gave it a try. I listened to each woman and learned, reminding myself that every woman is different and her story will not necessarily be mine.

I attended breast cancer support groups in various different locations, and only returned to those that have a well-trained facilitator; some are too big or disorganized.

I found a local, reputable hospital that offers free classes to cancer patients and attended their weekly Mindful Meditation class, Stress Management class, Art Therapy class and Chi Gong class. I could relate to the people and I benefitted from learning techniques to relax my body and mind.

I attended weekly therapy sessions with my therapist, sometimes more than once a week.

I spoke to the oncology social worker at my hospital as often as needed.

I saw a psychiatrist and got on anti-depressants and anti-anxiety pills; at first I felt ashamed, but once the pills took effect, I was relieved.

I cried when I felt like it – for me, it came out all at once when I arrived home from the hospital, post-mastectomy: a breakdown.

I visited a holistic healer weekly, the energy healing was nurturing. I yearned for healing hands on my body, not those that poked or prodded me.

I got massages or facials regularly. At the time, someone was helping me financially, but massage and Reiki can be found free for cancer patients at your hospital.

I rested when I was tired, sleeping as much as needed, guilt-free.

I accepted help and asked for it when wanted (not just needed.)

I aimed to walk an hour a day; it felt therapeutic to breathe fresh air and circulate the blood in my body.

I drank a lot of Fiji water.

I ate healthy- lots of protein, greens and fruit, limited sugar and dairy intake.

I posted on Facebook that I wanted soup, and got containers of delicious homemade soups delivered to my door for weeks!

I learned which family, friends and acquaintances are there for me and which aren't. I was shocked in both good and bad ways, accepting the results.

I did a lot of journaling.

I created a cancer fashion blog, and blog regularly.

I'm now giving back and reaching out to women who are being diagnosed.

I surround my self with positive affirmations.

I rid myself of toxic people and environments.

When I want to do something and hear a doubting voice in my head, I take action anyway! Today, I go for it. I don't know what tomorrow will bring, so I make the most of today.
More stories here.

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Thursday, October 21, 2021

Why Me?

God does not care.
God does not love me.
Something is wrong with me because God allowed this to happen to me.
I’m not going to talk to God any more because it doesn’t do any good.
I deserve to be depressed.

Finding hope in Jesus can strengthen us through times of difficulty and despair even when darkness seems to surround us.
Find hope now

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