My Life, A Chair, and “All that Jazz”
by Laney Cummings

My name is Elaine (Laney) Cummings, and I’m in my forties. I live in a small village in Durham County, England. Some people say I’ve changed over this last year. I KNOW I’ve changed. I hope I’ve changed for the better. I believe anyone having the life experience I’ve had recently would change, too.

My metamorphosis started last summer. I noticed my right nipple was itching a lot … I didn’t think it was anything bad…just an itchy nipple. August 13, 2000, I reached over my desk for a pen. OUCH!!! … a stabbing pain in my breast like no other!!! When I felt my breast I could feel a substantial lump. There had been no lump the night before when I’d done my breast self exam. I got really scared.

The next two weeks included a mixture of doctor and nurse blunders, a misdiagnosis, and terrible fear and pain. I would not wish that on anyone. That’s why I am campaigning for something to be done in England about the misdiagnosis the most aggressive, most fatal breast cancer. My sister played the hugest role in getting me diagnosed quickly, and for that I owe her my life.

The day after I found the lump, I went to the doctor. Within a few days my breast was swollen and very painful, and oddly, I could no longer feel a lump. The doctor sent me to the hospital, thinking I had a breast abscess. That would be scary enough, but what transpired was off the scale of scariness. I had ultrasound, a mammogram, and two needle aspirations. The first aspiration got us nowhere, but the second one gave a “suspicious” reading. I was scheduled for a biopsy an hour later … getting the feel of the panic around me? The biopsy was totally necessary to get the diagnosis right.

A few agonizing days later, the doctors huddled around my bed to tell me the devastating news every woman dreads…breast cancer … but not the usual breast cancer … Inflammatory Breast Cancer (IBC). My surgeon, oncologist, and breast nurse who are caring for me are among the finest, and I pray for them constantly.

I had never heard of this IBC “thingy,” nor was I aware that there were different types of breast cancer. While I was hurried along a treatment path, I was too scared to find out why everyone was so panicked about this diagnosis. After 5 rounds of chemotherapy, I dared to look for information about IBC, and it hit me harder than a brick on the head!! I was dumbstruck, reeling, and fearful.

On one of my worst chemo days, I felt dreadful and was sure I wouldn’t live to see another summer. I was sitting alone in the house and crying. I don’t like others to see me cry. I think if I stay positive, they will too. However, this day was different. This was a black day. This was the day I stared Death right in the face and spat at it! Across the room, my eyes fixed on the armchair my son sits in (upside down like Mork) to watch TV. I thought, “You chair! You will have my son in your lap when I’m not here. My husband will fluff your cushions when I am no longer here for him to comfort. I hate you!! You’ll be here on this planet when I am NOT!! I hate YOU!! At that instant, I kicked seven sorts of stuffing out of that chair … all my fears, anguish, misgivings, the raw emotion of this disease … all of it came out. When I sat exhausted, I felt better. I thought, “I can fight this; it’s not going to be as hard as trying to fight that chair! I’ll be here to see that chair on the scrap heap! I’ll happily set that chair on fire!!”

I truly believe that chair episode had a purpose. It made me stand up to my failings, face my fears, and strengthen my resolve to do my best to survive! My treatment, although grueling and unpleasant, saved my life. As recently as 10 years ago, the survival rate was only 2% for 5 years. *gasp* Thankfully, today the survival rate is estimated to be 40%, and I believe that if we educate the public to be aware of the symptoms we can make the survival rate even better.

I searched the internet for help in my quest for knowledge about IBC and came upon a truly wonderful email support list set up by Pete Bevin and the IBC Research Foundation founded by Owen Johnson. I don’t know if I would have the determination to make my mark like I am doing without them and my IBC “sisters.” My husband has been a tower of strength and support, and although I always knew he loved me, he’s proven his love beyond my wildest expectations. I believe our love for each other has grown through this disease. May 2002 will be our Silver Wedding Anniversary, and I hope we will be spending it in New Orleans.

I have written a brochure to help inform women in England that there is a breast cancer that does not have a lump. Every day counts with IBC, and there is urgent need for people to be aware of its symptoms and treatments. I have written to the Prime Minister, all the Health Ministers, and am currently gathering a petition for a mandate to be added to the protocol for Breast Examinations in General Practitioners’ Surgeries whereby: “If a woman presents with mastitis symptoms and does NOT respond significantly to the antibiotic treatment within 5 days, then she should be immediately referred to a breast specialist for a biopsy with the utmost urgency.” I don’t believe this mandate is too much to ask. It could and WILL save lives! If you are a citizen of England, email me your support for this mandate. Put “Mandate Support” as the subject.

Story Submitted 2001