2016 wasn't all bad! In fact there were miracles if you knew where to look.
I am 38 years old. I've been having cancer treatment for the last 4 and a half years. My cancer is incurable. Quite honestly, it's been rubbish and my life (and that of my family) has been torn apart by cancer.
The past 4.5 years have slowly stolen the person that I was before. Before my cancer, I was a confident, outgoing, independent, active person with a thirst for adventure. Since the gruelling endless rounds of chemo and radiotherapy treatment, I feel like a shadow. I've lost both my breasts, I've lost my beautiful long hair, I'm covered in scars from all my surgeries, I've gained 4 stone in weight, I can no longer work, I was told I could not have children and, worst of all, I have lost my youth and my confidence. I wake up every day exhausted and in pain. Yet each day I get up and put a smile on my face for the ones I love.
3 years ago I was given only 2 years to live! Despite all this, and against all the odds, in July 2016 I was told that despite being on daily chemo I was 18 WEEKS' PREGNANT. I'd been told the chemo had made me infertile and I had stopped periods a year before. Obviously, this news was a complete shock. It turns out my "pizza belly" was actually a "baby belly"! My poor baby had been exposed to chemo on a daily basis his whole life and had been irradiated twice with cancer scans. I spent a month going back and forth to hospital to discuss the implications. I was told repeatedly that I should terminate as the risks of serious defects were too high. Despite all I've been through, those 4 weeks were the worst of my life. My personal beliefs made it very difficult to put my life above that of my baby. I told the doctors that if he had any chance and I could be treated safely, then I wanted to try. In the end, after thousands of checks, my amazing doctors told me the baby seemed fine; I could change chemo; continue treatment; and have my baby.
So, on 09 December 2016 at 10:14pm my husband and I welcomed Phoenix Joseph Johns to the world. A little premature and by c section. I was awake and my gorgeous husband Matt was with me. And it was the most beautiful "emergency" I've ever experienced. This baby is a miracle. He has been through more terrible things than most people will experience their whole lives. Yet he is the calmest, happiest little creature you could ever meet.
In order to give birth safely I had to stop my treatment and, as a result, my cancer progressed to my hip and lower spine. In the last few months whilst I've been getting to know my "little beastie" better I've been rushing back and forward to hospital for radiotherapy and chemotherapy. My type of cancer (triple negative breast cancer) is very aggressive; grows very quickly; has a poor prognosis; and doesn't have any targeted treatments, so these are my only options. I have tried 5 previous chemo drugs and I'm fast running out of options.
However, there is some light at the end of the tunnel, (apart from my little pudgling's smiling face). A trial immunotherapy drug called Pembrolizumab. It's showing amazing results for women with incurable triple negative breast cancer, with some women having a complete durable response and effectively having no evidence of disease. I'm not saying it's a cure but it's close!
Due to my pregnancy I missed out on being eligible for the only trial ongoing for this drug. However, I can pay for it privately....for the eye watering sum of £40,000!!!
Like any woman in my place I am desperate to see my 4 month old baby grow up, become a good person, find love with whoever he chooses and generally make the world a better place. My husband works extremely hard to keep our little family afloat all by himself and, as I am unable to work, we have spent all of our savings over the last 4 years. I'm therefore asking you to help me with another miracle; to donate whatever you can to help me fight for Phoenix and be with him through his childhood and beyond.
REMEMBER THE IMPORTANT THINGS
Thank you for reading this. I know life can seem rubbish sometimes but please remember the important things....the people you love. There is always something good waiting around the corner, no matter your circumstances, you just have to recognise it.
We are amazingly grateful for reaching our original goal so quickly and for the ongoing support. Having been to see the specialist we now know the costs will be higher than expected (I now have to fund the chemo, as well as the immunotherapy, privately). Our original goal of £40,000 is enough to fund the first year of immunotherapy treatment only. If we are to cover my chemo costs, the GoFundMe fees (7.9%) and my immunotherapy for the second year we are now likely to need £75,000 or more.
I’ve been on every broad spectrum IV antibiotic they have for nearly 72 hours. They’ve spotted a bug in my blood and once they identify that we can hone in properly and treat in a targeted manner. I’ve had another chest drain, because my lung decided it wanted back in the party and filled up!!! Never a dull moment.
The upside is, because my immune system is so weak I get my own room (with shower). So life’s not all bad.
The strangest thing is, I feel fine now and I can’t quite comprehend that I’m actually quite ill. I’m definitely positive and feeling that I’ve got a lot of fight left in me, so we’ve just got to keep on top of this bug, squish it and get back to my gorgeous Beastie. Sending much love to you all and feeling very very grateful to my amazing family, who looked after me and got me to hospital in time and the amazing medical teams at RSCH who have been caring for me. Xxxx P.s. Beastie is as happy as ever, so I’m happy.
So, I’ve spent the last 6 weeks in and out of hospital, being pretty unwell. I have had three long hospital stays where I have had a drain inserted into my lung (whilst fully awake, joy joy,) to drain liquid that has accumulated. The first two occasions I drained 2.5 litres each. And then last week I drained 4.5 litres....the doctors were pretty amazed I was still able to breathe. I guess it’s one way to lose some weight!
I’ve had numerous scans and been poked and prodded to within an inch of my life. And I’m sick and tired of it. The scans show I have “suspicious” spots in my lung (hence the liquid accumulation) and on my brain. This was a blow. So....I’m back on steroids to reduce brain swelling and I’m back on IV chemo as of today. I feel that this last 6 weeks has been one step forward two steps back and have been struggling to see the positive side. I don’t say this for pity. I say this because we all lose hope at times....even me. I am, it turns out, only human after all.
My consultant is still very positive and believes this “new” chemo (I’ve been on it before) will get me back on top. It just means another three months of hard work, when all I want to do is get better and play with my Beastie. I want so much to get better to do all the things he wants me to....we all get bossed about relentlessly by our little monster (mainly being told to run up and down the garden with trucks in tow). Even I don’t escape....I just have to give him wheelchair rides. Beastie, Matt, Kemo and our amazing family remain my source of strength but it’s tiring for us all and we feel we need a break from it all. My hope is that this chemo is the magic bullet. I can get back in control of my cancer and get back to being a functioning human being, able to care for herself, her Beastie and her family. Fingers crossed. Love to you all. Xx
Things here have been up and down. Thankfully the radiotherapy side effects have subsided and I feel much more me. I’m off the steroids and have started having much more energy. So it was all going well. Then Friday I was brought in to hospital. Turns out I have DVT in my left leg, pulmonary embolism and pleural effusion. Posh words for clots and fluid on the lung. We caught it all early enough and I’m on treatment. Currently sitting here hoping to get discharged. Life is a roller coaster. Guess I’ll just have to enjoy the ride!!!
Dear Emma, your story has captured the hearts of us all. Your courage, honesty and love for your family is second to none. I hope you can achieve your goal as soon as possible. I know Matt through work and know what a great support he is to you and your gorgeous son. Hang in there, the cavalry is coming!!
I have donated as every bit helps and hopefully it will go some way to helping this lady get the drug she needs to ensure she sees her son grow up. I am only a year into my cancer journey so don't know that feeling of despair, as the moment I am filled with hope. But one thing I know, I will fight all I can to share as much of my sons' lives as I can.
Emma and Matt, you are nothing but a wonderful, positive, inspirational story (let's only focus on the good parts because the bad parts can do one!) We hope everyone's donations will give you the happy ever after you have dreamed of and deserve. Giving you all the luck and love in the world, Travers and Becky x
Dear Emma, Hang in there. Try to obtain all the services you are entitled to. A famous US basketball coach, Jim Valvano, who had cancer said "Don't give up, don't ever give up." You've fought through a lot, but don't give up. You have Matt and Beastie and many others who love you.
Your posts often bring a tear to my eye Emma, but this latest one today particularly so - you're just so amazing. To be able to write about your gratitude when you're going through your darkest times is really very honourable and humbling and we can all learn so much from you. You must make your friends and family extremely proud, you're just remarkable and quite clearly very, very special indeed. Wishing you all the best with your continued treatment. Nicola (friend of Sheree's) xxx
It's always very hard, in fact crushing, to hear that type if news. Although chemo will be a drag and hard on the body, the main thing is to remain positive. I think if you approach it like that it is easier. I know my family and friends were frightened but I kept up my normal attitude of invincible in the hope of alleviating their fears. I hope you are feeling ok despite chemo,
Hi you 3.. I'm terrible for not checking my email.. But I've just had a peek and noticed several updates from you Emma.. So chuffed you have smashed your target.. What amazing people... Got everything crossed that the new treatment is a massive success and you get your energy back soon. Lots and lots of love Xxxxx
I see you exceeded your goal by a wide margin and that does my heart good to see. As someone who's been through cancer, I am always supportive of those who have the same struggle. Thanks to Mark Dawson for calling my attention to you. I'm happy to help even a little.