Deborah James' heartbreaking final column: I’m scared of dying & not seeing my kids grow up – but I’ve made memory boxes
THIS is the column I never wanted to write. My final one.
In over five years of writing about how I thought it would be my final Christmas, how I wouldn’t see my 40th birthday or see my kids go to secondary school – I never envisaged writing the one where I would actually say goodbye.
I think it’s been the rebellious hope in me.
The small glimmers of options and far-flung chances that I’ve always believed in. Maybe, just maybe, I will be the one that will be the outlier and live forever!
I suppose the reality is that I am still the outlier – so my story isn’t one of sadness it’s one of the extra years that I gained thanks to research and knowing that, because of my case studies, future Deborahs with the same rare bowel cancer, B-RAF mutation, might go on to live longer lives.
When I was first diagnosed in 2016, it was beyond comprehensible for me to fathom the idea that I had more chance of dying in the first year than I had of living.
- Deborah has urged people to donate to her fundraiser – at bowelbabe.org – which has already raised more than £1million
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I wanted so badly to live and have beaten the odds ever since, until now.
It doesn’t take a rocket scientist to realise that my last six months have been pretty hellish health wise.
After a medical emergency in January, where I suffered an internal bleed, it’s difficult for me to understand how I survived.
Then there’s the countless operations to try and stent my bile duct to stop my liver failing.
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The last six months have arguably been the hardest of my whole cancer journey – the sheer unrelenting medicalisation of my body has been heartbreaking to experience and the moments of being out of hospital and pain free have become more and more rare and fleeting.
I have essentially lived in the hospital since January 6, with only limited company – and while I am eternally grateful for all the doctors and nurses that have gone above and beyond to help me, we have all decided there is a point at which our efforts have become fruitless.
It’s not about lack of access to the latest fancy drugs – it’s not about feeling hard done by that I couldn’t get a life saving operation – it’s simply that I have an extremely difficult cancer in an extremely difficult area of my body that even today’s cutting edge technology and techniques cannot cure.
So I sadly find myself in the place that I never wanted to be – the next crossroads.
My body is so emaciated that I have no choice but to surrender to the inevitable.
Four bouts of back-to-back sepsis has left me with zero reserves and zero bouncebackability.
I’m blown away by £1million donations to my BowelBabe fund… thank you
I always knew that there was one thing I wanted to do before I died.
Over the years I have raised as much awareness and money for the charities that are closest to me: Cancer Research UK.; The Royal Marsden; and Bowel Cancer UK.
I knew that I wanted to make sure I left a pot of money so that these charities can continue their hard work and ensure one day we find a cure for cancer.
Obviously in my mind I’d have had months to kick start it all but nobody saw my body heading on the one- way speedy mission that it did, so thank you god for charities working through the weekend and my brother Ben, his girlfriend Ashley and our entire family who seem to be able to make miracles happen!
As a result, we have established the Bowelbabe Fund and in just 16 hours we’ve already raised a staggering £1.1million.
I’m just blown away, never in my wildest dreams did I think we’d hit that total in just 16 hours.
I’m actually crying! It’s overwhelming to think we can continue to help fund some really vital projects with this money.
It’s making me very emotional to see the outpouring of love. Thank you – I’d love nothing more than for you to help it continue to flourish.
All money raised will be allocated, with the support of Cancer Research UK, to funding causes and projects that I really care about in collaboration with other partner charities such as The Royal Marsden, The Institute of Cancer Research and Bowel Cancer UK.
For me it’s about being at the cutting edge of technology, so the Bowelbabe Fund will support clinical trials and research into personalised medicine for cancer patients as well as supporting campaigns to raise awareness of bowel cancer.
All I ask is that next time you pop for a coffee or grab a drink with a friend, please buy me a drink and donate it at bowelbabe.org
Sadly the last week has seen a rapid decline in my physical ability, meaning that my husband and everyone in my beautiful extended family have had to carry me around, from sitting, to the bed, to the toilet – I have no ability to use my legs or arms anymore.
I have never known tiredness like it and yet I fight daily to stay awake enough to complete a To-do list of things that I want to check off before I die.
How long do I have left?
I suppose it’s a question I keep on asking myself – it’s been a very emotional last five days.
I have had to leave the warm confinements of The Royal Marsden where the daily monitoring of my wee or bloods is just the norm.
I have now entered into end of life hospice care at home, where there is no monitoring and we take everything day by day – it’s all just about symptom management and trying to make me comfortable and meeting my desires to try and have the best quality death that I can.
You can of course imagine that these conversations are both heartbreaking and reassuring – but emotionally knowing that it is actually going to happen is the hardest thing to fathom.
I can’t help wondering if there isn’t a deal to be done with the devil to stop and reverse this at the last minute.
I have done what I have always wanted to do which is go to my parents house and be surrounded by my incredible family and watch in awe as they somehow manage to smile through the heartbreak.
And it reassures me to know that while I may not be here soon, things will be OK because together they can get through this, the hardest of adversities.
Surrounded by love
I’ve gone into mental overdrive and with the help of my husband, Seb, we have made sure that the kids have memory boxes – we’ve bought them gifts for certain key future birthdays.
Work ends are being tied up.
I do not want to die – I can’t get my head around the idea that I will not see my kids' weddings or see them grow up – that I will no longer be a part of life that I love so much.
I am not brave – I am not dignified going towards my death – I am simply a scared girl who is doing something she has no choice in but I know I am grateful for the life that I have had.
It’s been a crazy whirlwind but I’ve done things that I never thought I could or would do in my life.
Hopefully through all the campaigning I may even have saved other people’s lives and most importantly had fun trying my utmost to try and learn to live with cancer.
We all know it is very hard to do, and yet when I look back at the last five years I have some of my best memories ever in between the vomit and the tears.
To my supporters
Thank you if you are someone over the last five years who has read one of my columns; sent me a message; listened to a You, Me and the Big C podcast; engaged with me on social media; or spotted me on Lorraine shouting about No Butts.
Your virtual love has always made me feel like I have an army of support behind me.
It goes without saying that I will forever be in debt to the incredible team that have looked after me for five years at The Royal Marsden and beyond.
I feel confident that we have left no stone unturned.
When I was first diagnosed I was told we would throw the kitchen sink at this, you have more than done that, and then some.
I will forever be in awe of their skill and passion towards me.
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I suppose it would be weird to leave my column without saying a few final things: find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope.
And finally, check your poo – it might just save your life.
What are the symptoms to look for? Remember “BOWEL”
- : B:Bleeding
There are several possible causes of bleeding from your bottom, of blood in your poo.
Bright red blood could come from swollen blood vessels, haemorrhoids or piles, in your back passage.
Dark red or black blood could come from your bowel or stomach.
Blood in your stools is one of the key signs of bowel cancer, so it's important to mention it to your doctor so they can investigate.
2. O: Obvious change in loo habits
It's important to tell your GP if you have noticed any changes in your bowel habits, that lasts three weeks or longer.
It's especially important if you have also noticed signs of blood in your poo.
You might notice you need to go to the loo more often, you might have looser stools or feel like you're not going enough or fully emptying your bowels.
Don't be embarrassed, your GP will have heard a lot worse! Speak up and get it checked.
3. W: Weight loss
This is less common than the other symptoms, but an important one to be aware of. If you've lost weight and don't really know why, it's worth mentioning to your GP.
You may not feel like eating, feel sick, bloated and not hungry.
4. E: Extreme tiredness
Bowel cancer that causes bleeding can cause a lack of iron in the body – anaemia. If you develop anaemia you're likely to feel tired and your skin might look pale.
5. L: Lump or pain
As with lots of other forms of cancer, a lump or pain can be a sign of bowel cancer.
It's most likely you'll notice a pain or lump in your stomach or back passage.
See your GP if it doesn't go away, or if it affects how you eat or sleep.
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