Deb's Story
With thanks to Deb for sharing her womb cancer story to help raise awareness.
Friday June 5th 2015 is set to become a happy anniversary. It's the date I was discharged from gynae-oncology after a womb (endometrial / uterine) cancer diagnosis five years ago.
My cancer 'journey' began very simply. A spot of blood here and there. Before the start of a period. After a period had ended. Between periods. I was 50 and thought it must be my age. Hormone changes. That I was heading for menopause. Never in my wildest dreams did I think I was heading for a womb cancer diagnosis. There again, I'd never heard of womb cancer before June 22nd 2010.
As it turned out, I was young to have womb cancer. But not as young as some of the women I've since come to know.
The spotting became bleeding. Pale pink. My periods, though still regular, became heavier. Gradually the spotting, pale bleeding and heavy periods became one until it was impossible to know what was happening when. At a blood test I was asked for the date of my last period.
"I don't know," I replied, "I've been bleeding almost constantly for the last four months, that's why I'm having this blood test."
Back ache. Low abdominal pain. Pain down the back of my thighs. Soon I could barely walk. I shuffled along like an old woman. Think Julie Walters as Mrs. Overall, except this wasn't funny.
My GP put me on synthetic progesterone to stem the bleeding. "No more than ten days," he warned, because of the risk of blood clots. The bleeding cleared. What I'd thought was pale bleeding soon showed itself to be fluid leaking from my womb. The pale pink had been diluted blood.
The fluid looked greenish and had a flat, dead smell. A smell that was with me constantly. I became paranoid that others could smell it too. I kept my distance.
The tumour emerged April 16th 2010. I went into 'labour' after hours of backache. No bundle of joy followed. The tumour remained attached inside the womb cavity, growing through the cervical canal. I was 'in labour' until the tumour was removed June 3rd. The relief was immense. The alien was gone. I was pain-free.
On June 22nd 2010 I was told I had womb cancer. I didn't fit the risk factors. "It was random," said the CNS. "Your CNS will now be your rock for the next five years," said the Consultant. I didn't want a rock, I wanted answers. None were forthcoming. I'd need a hysterectomy and then radiotherapy.
Six weeks later I was admitted to Barts for the hysterectomy. I was angry with my body. It had let me down. I wanted the cancer gone but I didn't want surgery and I definitely didn't want surgical menopause. "You look nervous," said the Senior Radiologist, a master of understatement. I gave him the permission he wanted to use my case for teaching and research.
"The operation was a success," said the doctor the following day, beaming. "I want to get out of here," came my terse reply. The doctor's tone became serious. "We're running a further study into the effectiveness of chemotherapy in treating endometrial cancer and..."
"I've been told I can return to my local hospital for any treatment." I'd cut her off and her face fell. "You must be tired," she observed, "You'll have visitors soon, I'll leave you to rest."
"Chemotherapy?" came my voice in my head, "Things must be worse than they thought. Sh*t!"
I put on a smile for my visitors.
The following morning brought good news. I could go home. I was elated. I was also inflated. I looked at least six months pregnant but what the hell, I could go home.
Home where the sofa was lower. Home where my bed was lower. Everything was an effort but it was good to be back.
That evening I lay on my bed with my daughter beside me. We watched films together. And I laughed. Everything was suddenly very funny. My daughter groaned at my 'jokes'. Then I felt a twinge. Something felt different. "I must have been laughing too much," I thought. Note to self: no more laughing. I thought nothing more of it.
Two weeks later I got ready to go to lunch with friends. They were due to pick me up in a couple of hours so I sat and checked my emails. Suddenly a dampness registered. "I can't just have wet myself," I thought incredulously.
I checked. I was bleeding. Quite a lot. Heavy period a lot. I padded myself up and rang my CNS.
"Come to the hospital, tell them we're expecting you on the ward." I phoned my mother and she drove me there.
We went to reception. I explained to the first receptionist. She told me to see the receptionist next to her. I explained to the second receptionist. She handed me a slip of paper with the word 'Major' written on it and told me to join the triage queue. I waited behind a pregnant woman and her husband while they gave me funny looks. The nurse was in and out. Slowly. And then my brother-in-law joined us. The nurse knew him. "What are you doing here?" she asked him. He quickly explained. "Are you the patient?" she asked Mum. "No, she is," said my mother, pointing at me. The triage nurse turned, took one look at my face and decided, "You'd better come in."
I began to feel strange. I suddenly began to feel sick. I asked for a bowl. "I need a blood pressure reading..." replied the nurse. Mum handed me a cardboard kidney dish. "Would now be a good time to panic?" I asked quietly. The nurse told me to lay on the couch.
"Sorry, I've got blood on your chair," I pointed out. The nurse looked at me, looked at the chair and hurried out of the triage room. She returned with a wheelchair. "Sorry, I've got blood on your sheet," I pointed out. The nurse dumped it into the wheelchair, helped me in and ran to resus as fast as she could, pulling the wheelchair behind her. "You can't come past this point, you'll have to wait in the relatives' room," and I saw the doors close on my mother and brother-in-law.
From there it was all hands on deck - or all hands on Deb. A blood vessel had opened. I was bleeding out. A nurse in a red uniform introduced herself. "I work with all the bleeding patients," she told me. I guffawed. I was in my very own Carry On film. The nurse in the red uniform gave me an odd look.
The CNS had also joined me. She heard all about my apologies for the blood. "You can't get the patients these days!" she quipped. She told me I was remarkably calm, but the enormity of the situation didn't hit me until I was home where, once I realised, I grew increasingly paranoid over several weeks that I'd bleed to death. For now, in resus, they wanted me to keep talking. "I think I laughed too much," I offered by way of explanation. "I'd like to know what was that funny," muttered a nurse as she left the cubicle.
I was kept in for observation overnight. I couldn't sleep so spent part of the night texting my daughter. No mean feat with my now blurred eyesight. I'd caught sight of the colour of my blood-devoid face and lips a few hours earlier in the lift mirror as I was wheeled down for an ultrasound scan. I hadn't realised I looked that bad. But there was good news. No clots in the pelvis. No need for a further op. Look for the positives.
The following day was my two week post-op assessment. My surgeon appeared on the ward to give me the results from the hysterectomy. The surgery had been a success. The cancer had been early stage. No further treatment was necessary. No radiotherapy. No chemotherapy. Hallelujah. "But in this game we never say never," continued my surgeon. Oh...
So here I am in 2015. No longer a womb cancer patient. I now know:
- women younger than I am aren't taken seriously about heavy or intermenstrual bleeding
- women are told they're too young to have womb cancer
- women are told they're fine because their smear test result was negative
- smear tests aren't currently designed to pick up womb cancer
- there's no screening programme for womb cancer
- there has never been an official campaign to raise awareness of womb cancer.
I'm grateful that my GP took me seriously. And I'm lucky - not to mention relieved - that I am now a womb cancer survivor.
