By Rachel Stevens
There is always a date for someone who is living with cancer.
Mine is 31st of January 2013, the day I was diagnosed with grade 3 (fast growing) stage 3 (advanced) breast cancer, a week before my 35th birthday.
Overnight my life went from healthy, independent woman managing a large communications team and enjoying everything London had to offer, to endless hospital appointments and anxious waiting rooms, heavily dependent on the medical profession for survival and on my family and friends for support.
But despite the shock, fear and anxiety that comes with a diagnosis like this, I was clear from the very beginning that I would do everything I could to fight this disease.
All I wanted was to be given a chance to get well. I was too young to be told there was nothing they could do.
Fortunately, the cancer hadn’t spread and I learned that I would need 8 rounds of what the doctors called “the gold standard” chemotherapy treatment. In other words “super toxic”. So, I knew I was in for a difficult time.
But it was tougher going than I had even imagined.
Lord Saatchi’s description of the treatment for cancer as “medieval” is spot on. I wouldn’t wish it on my worst enemy.
There are the well-known side effects as the indiscriminating chemotherapy seeks out dividing cells; the healthy ones as well as the unhealthy ones. You lose your hair along with the tumour cells and gradually you transmogrify into an alien life form, without any eyebrows or eyelashes.
But there is a whole gamut of other less well known side effects.
After each treatment I would spend 7 – 10 days in bed or confined to the sofa, without any energy to read or see anyone. How often have most healthy people spent this much time in bed with a one-off illness, let alone 8 times in 6 months?
Then there is the nausea; the fine line that you constantly tread between painful constipation and diarrhoea; the mouth ulcers, the dry skin, the bone pain, the stomach injections to boost your white blood cells, the black fingernails, the potential infertility, the hot flushes, the list could go on…
People kept telling me that I was very brave in the way that I approached my treatment, but I didn’t really see it that way. I saw it as a beacon of hope. Hope that once through this nightmare, I might be able to live a lot more life afterwards.
But however determined you are; chemotherapy wears you down.
By the end of 8 rounds of treatment I felt more like a 90 year old than someone in my mid 30’s. I had so little energy that even walking up the road to the local shop felt like a marathon. I was exhausted.
The full toxicity of the chemo was really brought home to me when I was in the hospital for my fourth treatment. A nurse hooked me up as usual, but on this occasion she failed to properly attach the IV into the line in my arm. After about 25 minutes another nurse noticed that the bright red chemotherapy fluid was leaking all over the floor and sounded the alert.
Suddenly, all the nurses on the ward rushed in my direction, pulling on plastic overalls and gloves as they ran. I was told to stay still and not move as all the other patients in the surrounding area were carefully moved away.
I thought this all seemed a little over the top until the nurse explained that if the drugs come into contact with your skin they can cause very serious burns.
Fortunately, I was fine and escaped unharmed. But this is how toxic the chemotherapy drugs are; they literally burn your skin.
And to my horror, they were going inside me.
I am not the first person in my family to undergo this barbaric treatment. My mum was diagnosed at the age of 21 with non-Hodgkin’s lymphoma and told that without treatment she had just 3 months to live.
It’s thanks to medical innovation back in the 60s that my mum took part in the first trials for chemotherapy and radiotherapy that saved her life. The treatment has been refined and improved since then, but as I went to each hospital visit and watched as the highly toxic drugs entered my blood stream, I was struck by how little had really changed since she went through it more than 4 decades ago.
She wasn’t prescribed steroids to stop the nausea, so she would spend days being violently sick after each chemo treatment and was often hospitalised. Clever ultrasound devices and PICC lines weren’t available, so she would have to sit and endure endless painful attempts as nurses tried to find veins.
And she didn’t have the luxury of getting used to her hair falling out over a period of a few months like I did. She found that it all fell out into the sink one day.
While what I went through was considerably easier than what she endured, it is of note that the basic treatment hasn’t really changed all that much in 4 decades.
My elation at finishing my own chemo was short-lived when my surgeon raised the possibility that they might consider giving me some more.
It appeared that the first set of chemotherapy drugs had worked dramatically better on me than the second set and the surgeon thought we should consider the possibility as it had worked so well.
I found myself in the middle of a conversation between the surgeon and the oncologist. The surgeon wanted to think outside of the box and go with what was working for me; the oncologist was less keen as this would have been outside the recommended standard guidelines.
My initial reaction was to feel devastated. I didn’t know how I could face anymore of the dreaded drugs. But then the overwhelming desire and determination kicked back in again.
At that stage they thought that my cancer didn’t respond to the hormone drugs like Tamoxifen, the drug that stops breast cancer returning. So chemotherapy was my silver bullet.
Despite the dread of facing more chemo, I found myself on the side of the surgeon. To hell with the guidelines, I wanted this thing gone from me, forever.
As it turned out the problem resolved itself after the tumour was taken out and analysed in a lab. It had responded much better than they thought and it was responsive to the hormone drugs, so thankfully I no longer needed to think outside of the box.
But had I not found myself in this position, I would have wanted the doctors to think laterally and personalised the treatment to my cancer. If one drug was clearly working when very few other options were open to me, I would have wanted more of it, even if it was outside the standard guidelines.
No one wants to hear that the drugs aren’t working when you have cancer and that they won’t, or can’t, try anything else. You want to know that you have given it everything.
So that is why I support the Saatchi Bill.
I am deeply grateful for the advances in medical science that I have benefited from this year, but I don’t want children born today to have to go through the same treatments my mum and I have had to endure 40 years from now.
And if, God forbid, the cancer returns in the future, I want to be able to say to my doctor ‘can you do anything?’ And with every fibre of my being, even if the ensuing treatment is awful, I will want the doctor to say ‘yes’.
The Government consultation will launch at the end of January.
This is your chance to make your voice heard and enable all patients to demand the best possible treatment.