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 just wanted to post an update to thank everyone for their kind messages of support and continuing generosity.
It is just over a month since my beautiful wife left us and I am still finding it hard to come to terms with. The funeral arrangements kept me busy for most of that time, but now I am going through her possessions and trying to make sense of it all.
Yesterday I found a notebook full of poems Emma wrote over the last year, so I thought I would share one with you that offered me some comfort.
She wrote this a few days after we found the brain tumour:
"For the first time in my life I sit on the shore.
In the morning mist.
I have no idea where I'm going.
And I feel free.
I have no control.
The mist will clear soon and my destination will unfold - the water lapping at my toes.
Go and cuddle someone you love.
It’s Matt here again - Emma’s husband.
It is with a very heavy heart that I have to tell you all my beautiful wife passed away on Monday.
Emma’s fight had gone on for over 6 years and she faced every second of it with courage and good humour.
I would like to thank you all for your support over the last 18 months. We have been constantly overwhelmed by everyone’s generosity and kind messages.
She fought to stay with her boys right up until the end, but now I am happy to say that she is finally at rest.
Go and tell somebody that you love them.
I hope everyone is doing ok. Unfortunately, my health has taken a turn for the worse and we’ve been in some pretty serious territory.
Long story short, I’ve been in hospital for two weeks now. I came back in with respiratory distress and was feeling pretty terrified and terrible.
Unfortunately, it turns out my left lung is pretty useless now and has collapsed almost completely. This was ok while my right lung was staying strong. However, my right lung has now started filling up with liquid and it doesn’t take a genius to work out that, I need at least one lung to breathe. So, if the right gives out on me, it will be game over.
For a few days, it was touch and go. And in that time, I’ve had two blood transfusions, one platelet transfusion, a drain in my right lung, a drain in my left lung and an aborted permanent drain in my left lung (ironically there wasn’t enough fluid to do the operation) and lots of other nasty scans, tests and investigations. But I’m still here, for now.
Unfortunately, during the last few weeks, my cancer has progressed. There is more in my lung and I now have cancer in the lining of my stomach. My consultant says, if I can make it to Friday and my blood counts are ok (currently, they are not). I can start chemo. This is a small chance to knock the cancer back. But only time will tell. It’s scary but for now all I can do is just make the best decisions at the moment we are presented with them.
Things are serious enough that I had to call Matt back from his month long dream job in Turkey. I can’t thank the crew and production team enough for helping get him back to me as quickly as possible. There have been some tough decisions to make and I needed him here, so thanks to everyone who got him home. Even if he did leave all his pants and shirts behind.
So take care people and give those you love a big hug. (Pic is of me signing refusal of CPR and ICU care. Apparently, I’m too ill for those to be of any use. So I signed with a pastel fluffy pen!!!)
In those 6 years, I have had 3 major surgeries (I haven’t bothered counting the small ones). 9 different chemotherapies (pretty much back to back). 5 separate rounds of radiotherapy (lasting weeks) and one round of immunotherapy (lasting 3 months).
My cancer is incurable. This is my life.
Yesterday, I was admitted to hospital for my 6th chest drain to be inserted into my back (this involves being awake while they cut my back open, insert a tube into the lining of my lung and leave it with a bag attached for 4-5 days). My lung has filled with fluid again and I can’t breathe. It’s terrifying.
My cancer is also pressing on my nerves so I can’t walk and I faint when I stand up.
However, I am grateful for what I do have. My life.
But what makes me angry beyond belief is people wasting what they have. Wasting their health, their time and their talents. I would give anything to be able to stand up unaided, to walk, to lift my Beastie, let alone go back to work and be a functioning human being again.
So, please, please, please be grateful for what you have right now and glory in the health and the body that you have. Because you never know when it’ll all be taken from you.
Sorry not to be more positive. Xx
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.