nikki bailie-plews’ journey
Worrier to warrior - one woman’s climb up the mountain of survival
I’m Nikki, a 42 year old mother of 2 beautiful children Mimi and Otto. I am needing help to fundraise for my treatment that is not provided by the NHS. I am happily married to my wonderful husband who has stood by me through this awful journey that is cancer… My family and friends have held me together, carried me, cried with me and laughed with me, and I will be eternally grateful. I have kept an Instagram page throughout this which has been amazingly cathartic and supportive, but now is the time that I need to get it all out, so here goes…
I’m writing this blog to help raise awareness of rare gynaecological cancers. Many new immunotherapy drugs are available for some cancers, but not mine as it’s so rare, and a charity called Harris Trotter is very kindly funding my treatment for the next 3 months. I am also needing a cutting edge radiation treatment called ‘nano knife ‘which is delayed on the NHS due to the COVID crisis, and I don’t have time to wait ,so I’m forced to go the private route. We hope that this blog will go some way to getting my story out, and allowing people to help Harris Trotter help someone else just like me.
Where do I start? It’s been 18 months since the world fell from under my feet. It was a summers day and it had been so hot, I felt great. I was living my dream, or so I thought. We all went for a walk as the sun went down, Mimi looking beautiful, Otto and I went for a bike ride and paddled our feet in the stream under the bridge.. it was idyllic. I actually felt happy.
I’d moved to the country, had happy kids, stopped drinking, was a vegan etc etc, trained to be a yoga teacher and had a wonderful yoga studio, right here at home. It was all so perfect…looking back it was…I just never realised quite how perfect it was.
I feel like I have to write backwards as so much has happened to me, so utterly grim it feels hard to put pen to paper…I’ve wanted to write, but I haven’t managed the strength, but now as my life slips away, I feel I have to leave a legacy for someone, not least my kids…
I was diagnosed in August 2018 with clear cell adenocarcinoma. I had a hysterectomy and 6 rounds of chemo. My local hospital in Suffolk didn’t seem adequate for its complexity, so I hot footed to London’s UCLH and was about to go on a trial. In my final appointment for scan results, my oncologist announced that Ipswich had mis diagnosed me, I didn’t have clear cell, I had a germ cell tumour, a very rare again but an entirely curable cancer if caught first time. It wasn’t me, but I did have a chance…It was like I’d been given a life line, a release and a chance to live. All I knew was that my odds were better, but I would need more treatment, the 6 rounds of Chemo had been wrong…Astonishing. A waste of 6 months.. Hey ho, get back up again Nikki and keep on climbing….
Next I find the best specialist for germ cell. A highly aggressive cancer that affects young women under 40. My best bet was high dose chemo and a stem cell transplant where I would be in isolation for a month, away from my kids and go through the most brutal regime you can imagine. As I hadn’t been diagnosed correctly, treatment would be a sledgehammer to crack ME… not a walnut.
I don’t want to die. I want to live so much it hurts. I am wrung out and feel like I’m being squeezed with each and every breath. Unfortunately, the “miracle” stem cell transplant went very wrong… I nearly died 5 months ago, was given hours to live, but I survived the most dire odds. I was the sickest person in ITU, blown up like a ball, unrecognizable for months, a blob who couldn’t move, all because an infection attacked my bowel during my stem cell transplant and gave me sepsis. This transplant was meant to cure once and for all, the mess that had become me for a year…but it didn’t. It nearly killed me. Martin shouted to the world, “this wasn’t the plan!” and this NOW certainty isn’t…
5 months after the storm that was sepsis, high dose chemo, learning to walk again, having a stoma, the cancer is back. I hate it…I can’t cope, and the mountain I’ve been climbing just got steeper…THIS IS NOT MY TIME!
This WASN’T THE PLAN! We all scream…Our dream was to create space at the farm that busy Londoners like us, could come and heal. I spent the first chemo building it, and now the Cabin, Shepherd’s Hut and Dairy cottage are ready to receive our guests. This space wants to help, and this is our dream. My spiritual guides are saying I need to “learn”, and by god I am. I’ll be the best teacher in how to kick cancer that there is! There is nothing passive about my journey. Although I’m taking the medicine, I’m also doing a hell of a lot to heal ME… Meditation, healing, infrared saunas, oxygen therapy, mistletoe, supplements, CBD, eating an entirely vegan and non-processed diet. We are learning and we want to GIVE and I want to LIVE to teach everyone that you’re one step away from this. 1 in 2 of us will get cancer, a cell that’s misplaced and you’re then me.. But you can change it. This is why I’m here. So I’m going to do my damn best to stay here.
“Why “we ask? Why didn’t it work? I was meant to be cured? “ Oncologist: “Oh it may have been because you were so ill, we will never know… but right now Nikki, we have to act!” Ok doctor, what do we do? “Well, we can’t do much because of COVID. A Global pandemic, that may kill you.”…Oh OK, thanks… I’ll go on my merry way then… “Oh and Nikki, the treatment we want to give you and MAY work isn’t covered on the NHS, you’ll have to pay”…Amazingly , the charity have funded the first 3 months, so that’s an amazing relief and we want to help them.
The pot of gold at the end of that rainbow isn’t available. We’re in a real crisis as a country and we’re all locked up. It’s not easy to sell a kidney, or a house, a car, or anything right now! I can’t believe I’m having to think about money at this time, but I need it to survive. I’m asking for help. I’ve loads of ideas for fundraising, a 24 hour yogathon, an art car boot on zoom, Lots and lots of ideas… I’ll keep coming up with ideas and making things happen, but we need your help. I want to write a weekly blog and set up a fundraising page to raise money for the charity that is funding my treatment, to give me the chance to teach, to bake more birthday cakes, to be a sister, a wife, a daughter and a friend…..I’d love it if you can join me for the ride….Your support gives me so much strength, and a warrior needs her strength…Even Stormzy said it!
Please follow me on instagram @nikkibailie_nikkiplews, @yogasocialsuffolk. www.yogasocialsuffolk.com