The drugs that keep me alive have stopped working.
Even though I didn’t want to admit it, deep down I knew I was running out of time.
I’ve been lucky since I was diagnosed with stage 4 bowel cancer four and a half years ago, I’ve been an outlier.
The statistics said I shouldn’t even survive a year after the diagnosis. And my odds of reaching five were about 8%.
Due to an aggressive mutation of my cancer, most people like me live about seven months, at best two and a half years.
Yet my five-year milestone is only six months, almost to the day.
Two and a half years ago I was given a lifeline, hope.
I was one of the first people to gain access (through advocacy from my team for compassionate use) to new investigational drugs that were being tested.
The hope was that they would extend my life by six months.
It doesn’t sound much, I know. But when you live with incurable cancer, anything is better than nothing.
So I took the opportunity and kept my hopes up.
It was not easy, during the first few weeks I experienced terrible side effects including very serious skin reactions and even temporary vision loss.
After browsing through the side effects, I was blown away.
My response to these drugs has been so phenomenal that I have been told that I have “no signs of active disease” not once but twice. And the six months I was given to live quickly turned into one year, 18 months, two years.
Every day that these drugs have given me is another 24 hours to watch my children grow up, spend time with my husband, family and friends.
I woke up every day for two and a half years grateful to have this lifeline.
My doctors were so amazed at my reaction to the drugs that I became a case study when the National Institute for Health and Care Excellence (Nice) debated whether to make them available on the NHS.
I felt so proud to be part of the process that ended with Nice approving them.
‘MY DRUGS DO NOT WORK’
But, as with all good things, they unfortunately cannot last forever. The signs have been there for a while, if I’m being honest with myself.
My cancer bubbled up in the background and I have had flare-ups that have resulted in two major surgeries in the past six months alone.
I have also had weeks of radiation therapy and CyberKnife for the past six months.
And blood tests showed my tumor markers were increasing, while at the same time my liver function was failing.
It’s confusing for people. I get asked regularly, “But I thought you didn’t have cancer, aren’t you cured?” Did it come back?
The truth is, he never really went away. He fell asleep a bit, but now he’s back and this time my meds aren’t working.
So what are the options? After five different lines of treatment, my oncologist wants me to resume chemotherapy.
There aren’t many other options, and I know I’ve been doing hours of research.
The chemo worked for me when I was first diagnosed, so I felt relief – if my meds didn’t work, at least the chemo could do it again.
But then I fell off a cliff, spectacularly.
A fast growing tumor near my liver managed to wrap around my bile duct.
It’s inoperable and it’s causing an obstruction now, to the point where my liver starts racing.
The irony is that, even with my cancer, I always thought it would be my Rosé that got to my liver first.
Every blood test shows that my liver function is getting worse and worse, so I’m at a critical point.
My liver is so bad that I can’t have chemo.
But chemo is my only hope of shrinking the tumor that’s blocking my bile ducts.
I have jaundice more and more day by day, my skin itches like ants have settled there and I check my reflection in the mirror every two seconds, terrified to know if my eyes are more yellow.
That, and my pee is the color of Coke. I feel sick, I feel emotional and for the first time since my diagnosis I feel like my body is starting to shut down.
For the first time, I can see that I might not survive this.
The idea has always been in the back of my mind, but death felt comfortably far away.
I always had a series of options, a buffer that kept my fear at bay.
No amount of positive energy, running, giving cancer two big fingers, and dancing through the pain is going to help right now.
Any chemo at this time would only accelerate my liver failure and mean I probably won’t see the end of summer vacation.
So the shit got very, very real and I have to face my biggest fear.
While some people have lost their minds at nightclubs that can’t open, I’m trying to figure out how to live for a few more months – it puts lock life in perspective a bit.
KNOWING THE SIGNS COULD SAVE YOUR LIFE
I was 35 when I was diagnosed, although the disease is more common in those over 50.
Each year, 42,000 people are diagnosed, and approximately 2,500 people under the age of 50 are diagnosed.
Catch the disease in the early stages, in stage 1 and over 90% of people will live five years or more.
But catch it in stage 4, when the disease has already spread like mine, and your odds of living five years drop to about 7%.
One of the best ways to make sure you’re diagnosed early is to check your poo and body regularly for signs of bowel cancer.
For Bowel Cancer Awareness Month, I partnered with Lorraine to help them launch the No Butts campaign.
Like The Sun’s No Time 2 Lose campaign, it aims to encourage all Brits to know about the signs and symptoms of bowel cancer.
Warning signs of bowel cancer, spell “GUT”:
- : B: Bleeding
There are several possible causes of bleeding buttocks, blood in your poo.
Bright red blood can come from swollen blood vessels, hemorrhoids, or hemorrhoids, in your back passage.
Dark red or black blood may be coming from your intestines or stomach.
Blood in your stool is one of the main signs of bowel cancer, so it’s important to mention it to your doctor so they can investigate.
2. O: Obvious change in toilet habits
It is important to tell your GP if you have noticed any changes in your bowel habits, which last for three weeks or more.
This is especially important if you’ve also noticed signs of blood in your poop.
You may notice that you need to go to the bathroom more often, you may have softer stools, or feel like you are underweight or not completely emptying your bowels.
Don’t be embarrassed, your GP will have heard much worse! Speak up and get it checked out.
3.W: Weight loss
It’s less common than the other symptoms, but it’s important to be aware of it. If you’ve lost weight and aren’t sure why, it’s worth talking to your GP.
You may not feel like eating, feel sick, bloated, and not be hungry.
4. E: Extreme fatigue
Bowel cancer that causes bleeding can cause a lack of iron in the body – anemia. If you develop anemia, you may feel tired and your skin may appear pale.
5.L: lump or pain
Like many other forms of cancer, a lump or pain can be a sign of bowel cancer.
It is very likely that you will notice pain or a lump in your stomach or back.
See your GP if it doesn’t go away or if it affects the way you eat or sleep.
This week, as always, my amazing team gave me a silver lining.
So today I’m going back to the hospital to have another operation, to put a stent in my liver.
It should be a straightforward procedure, and if it works, it should keep my liver from breaking down.
These stents tend to work for about three to six months, and I haven’t asked what’s going on then.
If my liver is playing ball, I can resume chemo. If it works, it could shrink the tumor enough to keep it from blocking my bile ducts.
There are a lot of ifs, and I try not to let my mind get too far.
I asked my team if I should start tidying up my affairs, even writing that makes me sick.
But they told me not to erase myself just yet.
As it always is, it’s one step at a time, it’s just that these steps start to get really scary.
I have hope, even if it’s a faint glow, and I have options. Decent options at that.
I want to see my daughter enter high school, just a desire but I feel like I’m back to square one.
I’m back to the bottom, like when I was first told I had cancer, thinking the worst.
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I’m scared, I don’t know how to keep putting one foot in front of the other.
Right now, my focus is on finding a way to keep walking. I have to keep walking.
So, I come back to it.