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Bowel Cancer: “Cancer doesn’t define you. You define you.”

30 Jan 2020

When UK Carenity member Karen Elizabeth was diagnosed with stage-3 bowel cancer, she was in a state of shock and denial. But she decided to fight the disease and do all she can to obtain her dreams.

Bowel Cancer: “Cancer doesn’t define you. You define you.”

Karen

Hello, thank you for agreeing to speak with us. Could you tell us a little about yourself?

I am Karen Elizabeth, a fabulous, friendly, feisty, follower of magical unicorns, moonbeams, and funny female. I am nearly 50 years of age. I am a mature 3rd-year undergraduate Sociology student going into her final semester at Coventry University. I do student union radio, on Phoenix-Radio, where I have my own mid-week 'The Kazzie Bazzie Radio Show.'  

I was born and bred in Birmingham (UK) and spent 30 years in Travel and Tourism, in this country and abroad.

I never met Mr Right, live in hope! I live with my parents, and I have a younger sister. My hobbies include: The arts, eating out with my family and friends, history, photography and video making. My dream career would be to go into radio/TV broadcasting and journalism. 

We have a family history of cancer, and it always tends to be bowel cancer. I have lost friends to bowel cancer too, and this frightens me, will I eventually die from it?  

What condition are you living with?

Stage-3 bowel cancer, post-surgery, secondary cancer in my lymph nodes, and a benign brain tumour. I have ocular myasthenia too. Whilst on the operating theatre, to remove the bowel, rectum, anus, and make a hole for the colostomy bag, they had to remove cancer from my vagina, to stop it from spreading. I will be having vaginal reconstruction work done in the summer, after chemotherapy.  

When did your initial symptoms appear?

About a year ago, I noticed blood in my poo, then it started to get worse, blood clotting, then no control over my bowels, or bladder towards the end. The pain in my tummy started to get worse, and they realised that besides the tumour in my rectum and bowel, I had a hernia too. I was so ashamed and embarrassed; I had to wear big pads, big knickers and change myself frequently. I am a woman in her late 40's, yet I felt like an old woman in her late 80's, early 90's.  

How were you diagnosed?

It was a bit long-winded. In Jan 2019, I went to the GP. He said I had piles, after another month, another GP said it could be Crohn’s disease. However, he would send me to the nearest hospital for tests. In March 2019, the doctor informed me that it was a tumour and that it could be benign or cancerous, but it had to go away for tests.

When the results came in, the doctor told me and my dad I had stage-3 bowel cancer, and I would need to get radiotherapy, surgery and to wear a colostomy bag for the rest of my life, and possibly chemotherapy. At this stage I just wanted the ground to swallow me up whole. April 24th 2019, a day that changed my life forever, nothing was ever the same again. So Karen's Cancer Journey began. 

What treatments were you prescribed?

·       Codeine phosphate for the pain

·       Radiotherapy

·       Morphine in hospital

·       XELOX chemotherapy drugs, by tablet and intravenous 

I can’t remember the others. Drips and drains…I take the medications in three weekly cycles, over 6 months. Then review. 

I have never tried alternative therapies, something I would consider, but I don't where to begin.

How did you and your family react to the diagnosis?

Complete shock and disbelief. I was only 48 and only 4 years after my full hysterectomy. Here I was back again in hospital. Only a different department: consultants, surgeons, doctors and nurses. 

I was in denial: “This is not really happening to me, I will wake up soon, and would have been a very bad nightmare.”  

Lots of panicking “I am too young to die! I haven't finished my degree yet. I haven't found Mr Right, and just starting off on my media career.” Followed by: “What have I done to deserve this? I don't smoke, do drugs, drink, never slept around, WHY ME? Why is God punishing me, he must really hate me, and want me dead.” 

Then, “Cancer does not define Karen. Karen defines Karen. And this crappy cancer, that has come at the most inconvenient time of my life, will not destroy me, nor my Uni and media dreams. I am a beautiful, brave, strong and intelligent Cancer Warrior!”  

My family, like myself, was in denial, disbelief and shock. Together as a family we became closer and formed a stronger united bond. 

How is your relationship with your physicians?

Very good. My GP, my consultant, the surgeons and the oncologist have all been very kind and supportive. They have been fatherly towards me, held my hand when I got upset, and I got a big hug out of them when I left hospital. They admire my positive approach, not giving up, no matter what obstacles come my way, and the things I have to overcome.  

Chemotherapy is the very last thing I wanted, however, the health care professionals I’m in contact with want me to get well again and pursue my media dreams, and raise public awareness of bowel cancer in people under 50.

How are you doing now?

I am ok. Facing 6 months of chemotherapy ahead. I’m glad my bowels and bladder are working as normally as they can under the circumstances. I’m still pursuing my degree and working on my dissertation, and final exams. I graduate in July 2020. I’m looking at media jobs and Masters in media courses, and media graduate schemes. 

SERENDIPITY - I love that word. Just accept what is meant to be will be.

And I am making each day count: each day is a precious gift from God. 

I have a blog on Facebook. 'Karen's Cancer Journey'. I share my cancer story and raise public awareness about living with cancer. It's well-received, and I hope it educates people, and if I only help one person, who is going through what I am/have been through, then I know it did the job. 

What advice would you give to someone who’s just been diagnosed?

1) Don't be afraid to let your emotions out and grieve the person you once were before cancer.

2) Talk to family and friends, about what you are feeling.

3) Always be honest with people about what you are going through - raising public awareness about your type of cancer, what radiotherapy/ chemotherapy is really like, recovering from surgery, wearing a colostomy bag, etc. It's about educating others and changing their mindset.

4) Cancer does not define you. You define you. Rise above the stigma, sadness and shame of being diagnosed with cancer. Remember you are a lot braver, smarter and stronger than you think.

5) Have lots of meetups with your family and friends, go out for meals, cook for dinner parties, drink the wine. Share photograph albums, memories, and have a good laugh about the good old days.  

6) You will lose friends, potential boyfriends, and family members may become distant, and people will cross the road to avoid speaking to you. Some may even spread rumours; “Does that person really have cancer?” Just ignore them, block them, and delete them. You don't need people like that, concentrate on those who truly care and love you for just being you.  

7) Keep a blog or vlog on social media and share your cancer journey – it’s very therapeutic to express how you are feeling. And it’s nice to see how far you have come when you start to feel well again.  

avatar Michael Barnes

Author: Michael Barnes, Community Manager UK

Michael is the Carenity UK Community Manager. With a background in marketing and copywriting, he is committed to putting his writing skills to work to make Carenity a safe and welcoming community for patients and caregivers.

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