With the new and fantastic ‘all for eve’ range recently launching at lookfantastic.com and its strong emphasis on raising awareness of gynaecological cancer, I immediately thought of this amazing friend I met during Uni: Rachel Bennett. Rachel (or Rei, as she likes to be called) is a photographer from Derby who, to me, was just the cool girl next door until I found out she was way more than that. She’s a fighter, a survivor and an inspiration. Rachel was diagnosed with cervical cancer some years ago when she was only 21 years-old, and that’s when her struggle against a messy healthcare system and the terrible cancer started.
In this interview, Rei explains how the whole process went from day one and where she is at the moment, as well as giving our readers an all-you-need-to-know crash course on cervical cancer.
CARIN: How did you find out you had cervical cancer and what was your immediate reaction?
REI: I was experiencing bleeding during sex for about 8 months before I got the courage to visit my GP. Having never really been seriously ill before, nor gone for an STI test, I was needless to say rather embarrassed and hesitant at the thought of a stranger exploring my nether regions. Upon the visit, my GP said it shouldn’t be much to worry about as I was too young for cancer. However, she sent me for what’s called a colposcopy (where they look at your cervix under a microscope) at the hospital. Results came back and it showed I had pre-cancerous cells (the cells that are picked up on smear tests). Again, the doctor reassured me saying I was too young for them to have turned cancerous, but just in case he wanted to remove them. This operation (a loop cone biopsy) took place under general anaesthetic, and I was able to leave hospital the same day.
However, when they tested said removed cells, they discovered I in fact did have cervical cancer – stage 1b1. Too early for chemotherapy, but too late to have no surgery, I was told I’d need my pelvic lymph nodes removing, followed by my cervix. I felt useless, even disgusting for having a cancer of a place so personal. The fear of death was quickly removed by my surgeon, who said it was early enough to be stopped. The biggest threat was to that of my fertility. I was informed that if my cancer had spread at all I would need a hysterectomy and chemotherapy – meaning no children. Being only 21 years old, I hadn’t even thought about children, and there I was facing a threat of having the chance taken away from me!
Luckily once my cervix was removed they saw there had been no spread, so I kept my fertility. However, I have lost the ability to give birth naturally (I will need to have a caesarian) and the chance of me becoming pregnant has been reduced. Chances of miscarriage and premature birth have also been radically increased.
CARIN: How do you feel about the way the government profiles gynaecological cancers? Is it still not treated as the major issue it is?
REI: I know I was incredibly lucky in that my GP sent me straight to hospital to be seen by an expert, however through meeting other sufferers on the Jo’s Trust website (the UK’s first cervical cancer charity) I discovered that by law GPs are actually told to turn away all women under 25, regardless of whether or not they are symptomatic of pre-cancerous cells (bleeding during/after intercourse, abnormal discharge). And the government have no intention of changing the smear testing age to allow for these women either. I was lucky enough to be invited to give a speech at the medical panel meet where they decided what their official advice would be to the government on this issue, and unfortunately even with my story they still insisted we weren’t worth saving. I know too many women under 25 who have lost their chance to have children, and even passed away because we have no right to be screened, and it just doesn’t seem fair! Why should we be punished simply because of when we were born? It’s seems crazy as well that it’s the women who haven’t had a chance to live yet, nor to reproduce, that are being left out.
The government’s excuse for not screening women under 25, is that it could do more harm than good. From being at the medical panel I can certainly see their point as they showed us that the loop cone biopsy I had (which most women with large amounts of pre-cancerous cells will have to remove the chance of it developing into cancer) can cause premature births later in life. However, these women are giving birth a week early on majority, not months. This in most cases would not affect the health of the baby, so I believe the risk is worth it. And after all, it’s the woman’s decision, not the government’s. Take my case for example: like most women my age we are immediately presumed to not have cancer. I was given the choice to choose between the possible chance of a mildly premature baby in the far future, OR removing my chance at having my found pre-cancerous cells turn into cancer. I chose the later after hearing the facts, and that resulting in my cancer actually being discovered. Had I not been given that decision, I would either be certainly infertile or dead right now. It was my choice to make, not the government’s.
CARIN: What have you been doing to raise awareness?
REI: In a bid to change their mind on this law, we’ve tried rallying, we’ve tried petitions, we’ve tried using the media, and we’ve tried telling our stories to anyone who will hear. However, with their medical evidence on premature birth rates on those who have had the loop cone biopsy, we have no hope. So now, we’re trying to create medical proof of our own – showing that the amount of women affected is far greater than what they’re quoting us.
On top of this, I have just launched a new cervical cancer campaign called Cancer25 (webstite under construction) with fellow artist Joel Buckland. The aim is to focus on women between the ages of 18-25 (those too old for the HPV vaccine and too young for smear tests) and tell them about the causes, symptoms and preventions of cervical cancer. I wasn’t told anything about cervical cancer in school, and I’ve found that’s the same for most of our generation. What I want is to re-educate these women and hopefully give them the courage I didn’t have to go to their GP if they are symptomatic, and demand to be seen. Too many women under 25 have died because their GP insisted there wasn’t anything to worry about and they believed them.
The campaign features five high-fashion posters which will each mention a fact important to the education of cervical cancer. We are starting out by placing the posters around Derbyshire, and if successful we’ll take it nationwide.
CARIN: What advice can you give to other young women out there who aren’t even aware of the disease?
REI: Let’s start with the facts: Cervical cancer is caused by HPV (Human papillomavirus) and is transmitted through genital contact (so you don’t have to have sex to catch it, and condoms do not always prevent it spreading). Four out of five people get this virus at some point in their lives, and most get rid of it within a year. With a few of the strains, a tiny percentage of women are unable to get rid of it themselves, and this then turns into pre-cancerous cells. These are labelled as CIN 1, 2 or 3 depending on the quantity of cells (1 being boderline, 2 being moderate, 3 being severe). If you have severe amounts, chances are that the hospital will suggest removal. This is incredibly common, women just aren’t talking about it! Pre-cancerous cells are also what is detected in a smear test, so it’s incredibly important that if you’re allowed one, you attend!!
When it comes to cervical cancer itself, the symptoms include:
– Abnormal bleeding: after or during sexual intercourse, or between periods
– Post menopausal bleeding, if you are not on HRT or have stopped it for six weeks
– Unusual and/or unpleasant vaginal discharge
– Discomfort or pain during sex
– Lower back pain
If you are experiencing any or all of these symptoms or are concerned about any new symptom you should make an appointment to see your GP as soon as possible. Remember, these symptoms can be associated with many other conditions that are not cancer related so don’t panic!
You are the only person who is responsible for your own health, remember that. Regardless of what a GP says, you know your own body, and if you think something is wrong, there’s no harm in exploring that. It’s your right to live, so fight for it!
I hope this testimony from Rei inspires you as much as it inspires me. I can only hope that we get to a point where our society doesn’t turn its back on gynaelogical cancer and finally realizes that it truly is a reality that we should no longer see as unusual.
Over and out,
To check Rei’s cervical cancer campaign, have a browse through www.cancer25.co.uk (still under construction, so watch that space!)
For Jo’s Trust, the UK’s first cervical cancer charity: http://www.jostrust.org.uk/
For the ‘all for eve’ range: http://www.lookfantastic.com/beauty/all-for-eve