Saying goodbye to my kids as I bled to death… I just wanted one more cuddle, says Deborah James
IN five years of writing this column, this is the hardest one I’ve ever written.
On a positive note, I am alive - weak, but ploughing on with a slim chance of more treatment for my incurable bowel cancer.
However, a month ago my family were told I might not survive the night.
An hour earlier, I held it together while drifting in and out of consciousness to say goodbye to my children, Hugo, 14, and Eloise, 12.
I had just suffered a medical emergency that most people don’t survive.
I’m still in shock, suffering what I now know to be PTSD.
I’ve been told my feelings are normal, but that doesn’t mean they are kind or easy to cope with.
It’s taken me a month to attempt to articulate what happened to me, and I’m writing this with tears streaming down my face.
This is the longest break I’ve ever taken from my column in the five years since I was diagnosed with stage 4 bowel cancer.
Most read in Health
But, I hope that sharing this helps someone else know that even in the darkest of lows, miracles might - and can - happen.
I won’t lie though, it’s really hard.
I’ve lived knowing I’m a ticking time bomb for five whole years.
My stage 4 bowel cancer diagnosis hangs over my head like a dark cloud that I don’t want to catch up with me.
I’m way past my sell by date, and I’ve always known it would get me one day.
As a result, I’ve had to face my death head on and think about what my wishes are.
I had a plan, like I do for most other things, and I have an idea of how I imagine it will play out.
When the time comes, I will know we tried everything possible.
I will understand why maybe I can’t have more treatment, I will know the kids will be OK and I’ll probably be in denial about it all until my last breath.
That was how I thought it would go.
Never in a million years did I think I would die in a traumatic medical event.
But then, I suppose I didn’t think I’d get incurable cancer aged 35 - life teaches us that anything can and will happen.
So, I was blindsided by the scariest moment of my life at 6pm on January 6.
Having only just got back on my feet after suffering colitis at the end of last year, I had been off cancer treatment for four months.
2022 was supposed to be all about getting me back on chemo, to give me a chance.
I’d had a good Christmas and even managed to find the energy to see my friends and family and make memories with my children - albeit between a Harry Potter marathon and juggling Covid.
In the few days leading up to January 6, I hadn’t been feeling great.
I went into The Royal Marsden hospital for a blood test prior to starting my treatment again, and it showed my liver function was really out.
I was jaundiced and my results were off the scale and too high to have chemo.
I was scared and alarm bells were ringing.
I was booked in for an emergency scan, and my doctors concluded that the time I’d had off treatment had allowed my cancer to grow.
The tumour, which is growing around my bile duct, had blocked it again, and it was now pressing on my portal vein.
Essentially, I was suffering liver failure.
After various multi-disciplinary meetings my team agreed on a viable option to try and rectify it.
I was lucky, if my tumours had been 2cm in the opposite direction I would’ve been deemed inoperable.
I was booked in for an urgent operation to try and unblock my bile duct and possibly put in a new stent.
It was scheduled for the next day, Friday, January 7.
At 5.30pm that evening, I was chatting to Tony Livesey live on Radio 5 about the new series of You, Me and the Big C podcast returning.
We talked about how we had recorded an emergency episode because we knew my health was declining. And we talked about my plan to keep ploughing on.
I smiled and it was all OK.
I put the phone down at 5.55pm and was suddenly overcome with a huge wave of sickness.
Emergency call
I ran to my bathroom and vomited, but looking down I saw large bits of bright red blood and I immediately thought, ‘This isn’t right’.
I called my husband Seb, 42, who was at a physio appointment around the corner, and said: ‘Seb, I’m not well, I think we need to get to A&E.’
He started to run home immediately.
But then something happened that I will never forget.
I started aggressively vomiting very large volumes of bright red blood. I now know I was haemorrhaging, and lost a good litre and a half of blood.
It was full of very large clots and it felt like I was actually vomiting up tissue.
It was hideous. I started to feel myself blacking out, I was shaking and feeling very dizzy.
I couldn’t think straight but I knew I had minutes to get help, if that.
I was scared but I didn’t have the energy to feel anxious, I just knew I needed help and I had one shot at it.
I called an ambulance because I could feel myself starting to lose consciousness.
I will be forever scared by what happened next.
As I recall, I was screaming down the phone, pleading: ‘Help me, I’m about to lose consciousness’.
I keep having traumatic flashbacks, feeling like nobody believed how hard I was trying to stay awake.
I can’t describe to you the trauma that now exists, like a broken horror film in my head, of saying goodbye to my children in that split second
Deborah
I was honestly using every ounce of the life left in my body to cry out for help.
The lady on the phone kept asking my address, and I managed to give my postcode and house number once, but I didn’t have the energy to say anything else.
I went silent, save for the odd: ‘Help me’.
My daughter came up and saw a scene I wouldn’t wish upon any child, ever.
She kept screaming down the phone, ‘Please save my mummy’.
My husband arrived home to find me drifting in and out of consciousness, our daughter crying down the phone and the only response from the 999 handler was, ‘There will be a 30 minute delay on the ambulance, do you still want one?’
Seb cancelled the ambulance and slammed the phone down.
I appreciate in traumatic situations you look to blame someone, but I had one call and nobody could help.
Is this being repeated elsewhere in the country? I felt totally unheard, I felt like they were leaving me for dead.
I felt like someone had just decided: ‘Sorry, we can’t save you today, there’s no space’.
Had it not been for my husband, I wouldn’t be here today.
If I was alone, I would've died.
This isn’t acceptable and yes, I am angry about it. Very angry.
Not because they couldn’t get me an ambulance, but because I keep playing out what would have happened if that was my only option, like it is for so many other people.
I’m bawling my eyes out remembering that vivid moment, feeling so let down by a system I believed would be there.
It has left me with such deep scars, I sometimes don’t know how I will ever cope with being alone again.
Saying goodbye to my kids
My husband scooped me up, took me downstairs and put me in the car.
At that moment, I knew I was dying. Everything was turning very grey, I couldn’t stand upright.
I knew it was very unlikely that I’d return to my home again, but it didn’t matter.
More importantly, I knew, or at least I thought, I would never see my children again.
I can’t describe to you the trauma that now exists, like a broken horror film in my head, of saying goodbye to my children in that split second.
I had no strength. I had blood all over me.
All I could say was, ‘I love you - forever’.
I can’t recall their faces because I started to lose the ability to see, from all the blood I was losing.
Maybe that’s a good thing, because I am not sure I could ever wipe that visual memory from my mind.
My husband called my parents, and they went straight round to be with the kids as he ‘blue lighted’ me to the Chelsea & Westminster A&E.
Everything was going hazy, it was almost like I was calmly floating.
I don’t recall much about the journey, beyond one special thing.
I couldn’t think about much but I knew I had to stay conscious to be able to explain my complex medical situation.
I was worried I’d just be written off as a stage 4 cancer patient that’s dying anyway.
I realise now that would never be the case, but it’s amazing what goes through your mind when you’re desperately trying to survive.
I can’t believe I managed to do this, but I thought if I could get hold of someone who knows what’s going on with me from the Royal Marsden, they might be able to give an insight into why I was bleeding so violently.
I somehow managed to call my interventional radiologist, Nicos Fotiadis, who was due to do my operation the next day and has operated on me 10 times before.
Nicos also works at the Chelsea & Westminster, and the angels were on my side - I had about 10 seconds of talking energy left and he picked up.
I managed to say: 'Nicos, it’s Deborah James, I’m bleeding out. I’m haemorrhaging large volumes and I’m on my way to C&W but I’m losing consciousness’.
He’s honestly one of my heroes and again as luck (trust me, I needed all the luck at that moment) would have it, he was on his way to the hospital and was on call.
I remember him saying: “Be strong Deborah, you can do this. Stay awake and I’ll see you there.”
I don’t recall much about arriving at A&E beyond gripping so tightly to Seb as he held me up to attempt to walk in with no shoes on, and me worrying about the trail of blood I was leaving.
I was carrying a big mixing bowl of vomit, because I wanted to show the doctors.
I was taken straight into resus, and my husband said he’s never seen me looking so ghostly.
I was dead behind the eyes.
I was gutted - I knew I was dying
The resus department is full of actual real life heroes. Seb was removed from the room as the crash team worked on me.
I only have flashes of memories of what happened over the next few hours.
I know my husband was told how seriously ill I was.
I know I saw Seb at a few points and could only tell him that I loved him.
I was very still, you think you would be screaming but I had no energy to scream.
I was still and calm, I wasn’t in pain but I was sad. I kept thinking, ‘Why now? Why is this my lot? I’m too young to die. I just want one more day, one more cuddle, one more sunrise. Why do I need to go this way’?
I was simply gutted but I didn’t have regrets. I just knew I didn’t want to die, despite being very aware that I was dying.
I couldn’t think about my kids because it would send too many tears down my face.
I was not accepting the fact I was dying but I also knew it was utterly out of my control.
Lots of doctors and nurses came in and were working on me, I kept saying, ‘I’m losing my eyesight, did you give me a funny drug’?
A doctor held my hand and told me: “No sweetie, it’s because you are very, very ill. We are doing everything we can to save you, you are in the best place.”
I have the trauma of remembering blood being very rapidly pumped into me, at lightning speed in fact. People were standing over me, squeezing it in.
I have the trauma of remembering them not being able to put a cannula in easily, due to the rapid blood loss, from people telling me how ill I was, to people pumping drugs into me in the hope I would stabilise.
Saving my life
They saved my life. They were amazing and I’m forever in awe and indebted to them for everything they did.
And then I saw Nicos. It was actually like seeing a real-life hero in your darkest hour.
I didn't know if he could save me, but I knew I couldn’t ask for anyone better - or anyone to try harder.
I was too unstable to scan, or risk a general anaesthetic. Even sedation was too dangerous, due to my vomiting risk.
About two hours into my resus visit my eyesight started to come back, as I was more stable.
I recall Nicos coming in with the lead medical consultant.
He told me either my portal vein had ruptured or my oesophageal varices - veins in the oesphagus - had haemorrhaged, which happens in liver failure from the pressure of the portal vein.
I’m so pleased that I was totally incapable of Googling any of those terms.
It turns out both my portal vein had obstructed and my varices had ruptured too.
All of this had been caused by my cancer - of course, my body doesn't try to kill itself by half!
I now know not many people survive this, and I understand why it’s a medical emergency.
And yes, I am petrified, utterly frozen in fear of it happening again.
They decided to check and stem my portal vein first.
I remember the doctor saying, ‘Deborah, you’re going to have to cooperate with me.’ My response was simple: “Anything.”
In moments like that you just want any chance. I wasn’t sure if I’d come out the other side but I was wheeled down to the operating theatre at about 11pm.
I lay there for two hours while they stemmed any bleeding. It was all done through my groin, via interventional radiology, it’s incredible!
I was awake because any sedatives were too risky, but I was so unwell and knew if I wanted to live I couldn't move.
I was so scared and yet full of thanks that I knew I had to play my part too.
The anaesthetist held my hand and distracted me while pumping me full of heavy duty painkillers.
As I was wheeled out, I was met at the door by Seb who had alternated between sitting on a cold chair and pacing up and down, frozen by fear that I might not pull through.
I cried when I saw him, he cried too - I told him I loved him and to look after our babies, and then I was wheeled into critical care.
I nearly died. In fact, not nearly. I was dying and I was saved
Deborah
I was sobbing very loudly at this point and I just kept saying: ‘But, I’m so grateful I’m alive. How am I alive? Why have I been saved?’
I knew that I was in a very critical period judging the number of machines I was hooked up to.
The morning seemed to come immediately, which I was so grateful for. I cried throughout the night, replaying the hours before.
I couldn’t really believe I was still alive. I’d been moments from death so it seemed surreal that my heart was still beating.
I was in a critical condition, but I almost had to keep pinching myself.
I was told they were sending me straight back into surgery to deal with the second part, which was going to be done via endoscopy - a camera down the throat.
I met a gastro specialist consultant who calmly explained he was going to operate, how he was going to do it and why it was going to save my life.
He completed a very important procedure called banding of the varices, where he essentially tied and put bands around all the veins that had ruptured in my oesophagus.
It was unpleasant, I’m not going to lie and I kept asking for more drugs. But, it was successful.
Picking myself back up
The next four days in critical care was a blur, with a lot of beeping and no sleep.
There was an allergic reaction to a drug, lots of crying, weakness like I’ve never experienced and wonderful, wonderful nurses and doctors who were there for me every step of the way.
The team decided that when I was stable enough I would be transferred back to the Royal Marsden to try and deal with my bile duct - the cause of the whole thing, which was still blocked.
Six days later I left critical care to embark on the next part of my journey back to life.
Weeks later, I am still dealing with the trauma, and reliving it is like ripping off a plaster.
It’s painful, it’s heartbreaking and I’m not sure I want to keep going over it, because it doesn’t get any easier.
I’ve since sought help, but it’s the one time in my time living with cancer that I needed to close the door to the outside world and keep ploughing on.
I nearly died. In fact, not nearly. I was dying and I was saved.
I’m not out of danger and a lot followed the initial days that saw me back at rock bottom, a hell I never knew existed.
But I got through that acute, hideous event thanks to a lot of luck and most importantly a brilliant team of NHS medics and staff who literally brought me back to life so I could cuddle my kids one more time.
How do you ever say thank you for that?
Thank you for that glimmer of hope, something I now refer to as rebellious hope because it seems so against the grain.
But those incredible heroes gave me another day, another sunrise, another chance.
READ MORE SUN STORIES
There are no words, just thank you.
- A new episode of You, Me and the Big C will be available from Thursday on BBC Sounds
- Follow Deborah on Instagram
