Deborah James: My 13th operation
Mum of two Deborah James has stage four bowel cancer.
Since March 2018, the 39-year-old has been sharing her story of the highs and lows of living with cancer on the You, Me and the Big C podcast alongside fellow hosts Lauren Mahon and Steve Bland.
In the latest episode, Deborah revealed that her cancer has started to change and grow.
“I was diagnosed at the same time as Lauren (Mahon) and Rachael (Bland - the podcast’s founder) at the end of 2016," says Deborah.
There only needs to be one rogue cell to spark it up again"
“I’ve always known that I'm living one step at a time and I don't really use the words incurable or terminal.
“I didn't think I'd get through my first year if I'm being honest with you and, sadly, statistically, many people don't.
“But then I was given this kind of lifeline of trialing some new drugs which eventually got my cancer to an incredible state. I reached a state called ‘NED’ or 'no evidence of disease'.
“People always get a little bit confused by NED and there is confusion. For a lot of people, if they get a really good scan in the early stage of their cancer, being declared NED is a brilliant thing and eventually that will turn to being cured.
“But for someone like me, it essentially means the treatment I'm currently on has worked and my cancer went to sleep for a bit.
“Think about the millions of cells we have in our body and there only needs to be one rogue cell to spark it up again, then it all comes to life.
Lifeline
“Two and a half years ago I was given this lifeline of this targeted therapy and it got me to a place that I never thought possible. It put my cancer to sleep. But, on average, people get six months extra life on that treatment, and I got two and a half years.
"I always knew it would eventually run out and over the last year my cancer has gone from being disease-free, on paper, to bubbling away. The cancer is really clever, changing and evolving.
"I knew the drugs were stopping working and everyone's like “Oh no, that's a disaster” but it’s not. My story is a really positive story because I've done so much living in that two and a half years - it's quite phenomenal.
"Very, very quickly and all the signs were there. I went from being on top of things to suddenly everything going tits up. I would say the last five weeks has probably been the scariest of my life.
"I always knew that one day my cancer would probably catch up with me. I've always appreciated how lucky I am to be alive - every single day.
"I always assume that death was one step away. I always assumed I would have another plan, another option and then my liver started failing.
"A week ago I had liver failure. My cancer was moving so rapidly that it was squeezing my bile duct.
"Suddenly the option of chemotherapy was not on the table any more, because if you give me the drugs, those drugs will kill me because my liver wouldn’t be able to process it. It was the scariest thing to realise that I might die of liver failure, rather than cancer and I just thought, wow, it's real, death isn't one step away, it's the next step away.
"My oncology team made it very clear that the aim of the game was to get a stent fitted in the liver and get my plumbing sorted, because it's a race against time because my cancer is growing.
The stent fitting was Deborah's 13th operation. The procedure has opened up her bile duct and improved her liver function, which means she can now have chemo to tackle the tumour.
"My body was being intoxicated. I couldn't think properly and everything was shutting down.
It sounds really dramatic, but I couldn’t think, everything was so foggy because my body was being flooded with toxins.
"My liver function is nowhere near normal, but it’s safe enough for me to have a slightly lower doses of chemo.
"Two months ago, when chemo was suggested as a potential future treatment, I was dragging my heels and thought ‘I can’t do this again’. On Friday, I don't think I have ever been so grateful to sit in a chemo chair and get drugs that might give me a tiny little chance, right now, it’s my only chance to hope that they might work.
Medicine has given me... the opportunity to see my son grow up"
"I didn't know which way it was going to go. I didn't know that I might be handed a lifeline.
"I shouldn't be here, I'm an outlier. And as soon as the oncology team said I was back on chemo, my kids said: 'Great. We can do the chemo dances again?'"
Deborah first underwent chemotherapy treatment in 2017. @bowelbabe, as Deborah's known on social media, would often record videos dancing with her children before or after her treatment to bring some joy to the day, then post it on Instagram...
"My daughter was away camping at the weekend, my son said "Oh no. Does that mean I've got to do it?" And he was like "I don't do Instagram" and "nobody's gonna see this right?" "No one's going to see it. Don't worry" I replied. “Let's just do it for ourselves”
We recorded a dance to Beauty and the Beast. The last time we did it, he was half the height he is now and it just took me right back there.
"It reminded me that this is what research and medicine has given me. It's given me the opportunity to see my son grow up, to grow taller than me. It's given me the opportunity to have four years of living.
"But then he allowed me to ...
"I’ve had to tell him this morning it's started to go a little bit viral. It's already done half a million views!
Two sides to every story
"This is cancer and I represent what loads of people go through on a daily basis. It is an absolute head screw and it's really hard.
"I think people look at me and go "Oh, she'll be fine. She's not that ill," which is a great attitude, but I think there are two sides to every story and people need to know that I have been at rock bottom, but I am pulling myself back and I might be there again.
Time with the family
"I was at my daughter's school play of "Annie", which I managed to get permission to leave hospital to go and see. I broke down...
"There were 40 little girls singing "The Sun Will Come Out Tomorrow" and I just thought, you know what, that is so true.
"You don't know what is going to happen tomorrow. You have to have hope that it might be a better day.
You can hear Deborah's full story, in detail, on the You, Me and the Big C podcast.
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You, Me and the Big C
The 'You, Me & the Big C' podcast team - the coolest club you never want to be a part of… A candid look at cancer, with Steve Bland, Deborah James and Lauren Mahon.