Emily’s journey
Transferring to the Royal Marsden with a suggestion that “it might be cancer”, I met the phenomenal John Butler. He showed me my scans and I stared at the screen - the tumour was there in black and white, the size of a grapefruit growing in my pelvis and pushing my other organs out the way.
In 2018 I turned twenty- three. Fresh out of University, I moved to London full of optimism and excitement. Struggling with niggling tummy pains for about a year, I had seen the GP numerous times. A false diagnosis of severe IBS, made my new normal - popping two painkillers a day to cope with the pain. By December my pain was unbearable, so I checked into A&E. They quickly discovered a mass in my lower abdomen but they were unsure what it was, so they consulted with specialists from the Royal Marsden Hospital. My first thought was ‘great’, they are taking it seriously and trying to find out exactly what's happening so this incessant pain will stop! I am embarrassed to admit that I had no idea then that the Royal Marsden was the UK’s leading cancer hospital.
Transferring to the Royal Marsden with a suggestion that “it might be cancer”, I met the phenomenal John Butler. He showed me my scans and I stared at the screen - the tumour was there in black and white, the size of a grapefruit growing in my pelvis and pushing my other organs out the way. Worst of all, it looked very much like cancer and I found it hard to contain my fear but kept telling myself to be strong and not to worry, it was a ‘maybe’ so I couldn’t let myself cry as I ‘might’ not have it. John scheduled an extensive operation to remove the tumour and provide a comprehensive diagnosis. He was very calm but mentioned that as operations go they don't get much bigger than this. I just kept reassuring myself over and over again to keep positive and believe that I'd wake up without cancer. Surely everything would be fine?
Cancelling all New Year plans, I came around on January 2nd 2019, to the news that they weren’t able to proceed with the surgery. I asked John three questions.
Is it cancer?
Have we caught it early?
Will I lose my hair?
The answers: ‘Yes, No and Yes’ left me distraught. The memory of that moment will forever remain in the pit my stomach. I was diagnosed with Stage III Ovarian cancer. It was worse than they thought and more bad news was soon to follow - I would need a full hysterectomy as the tumour had impacted to my womb and ovaries. I visited a fertility specialist but was told that retrieval of my eggs would be too dangerous, as time was not on my side and I had to have the tumour removed urgently.
I was inconsolable. All I have ever dreamed of is being a mother. At that point I didn't care about the cancer, the only thing on my mind was my fertility. Child bearing abilities are not what most twenty-three year olds should have to think about! For years I have carried around a list of children’s names in the back of my diary – this was an unbearably hard pill to swallow.
One week later John did an incredible job - he removed the tumour, my ovaries and any other visible signs of cancer which had spread up to my diaphragm and around my liver. Unfortunately, the cancer has also extended into part of my bowel so I had to have a permanent colostomy bag fitted. Another devastating blow. My memory of waking up in intensive care after the 11 hour surgery is very blurred, but feeling that colostomy bag by my side – to me that was the straw that broke the camel's back. I was hysterical. The 30cm scar down my tummy I could hide, the hysterectomy I could hide, but this was too much. Everything seemed to crash down around me. My life as I'd known it was falling apart.
Recovery was tough. I am normally a very bubbly person, but the indescribable physical and mental pain was too hard to hide. My poor family and friends would see me in hospital, the pain etched on my face. I was too weak to even speak at the beginning. I would just stare at the wall. I was unable to even cry, the endless list of worries swirled round in my head, as I tried to make sense of what was going on. Sad, scared, and broken, I finally found the strength to pull through. This was hugely due to my three closest friends, Alex, Ida and Missy along with my mother Penny, were by my side day and night, making me laugh, holding my hand. Doing whatever they could to keep me going, they even played Mario Kart with me late into the nights during the week, and gave up their Saturday nights to watch Gemma Collins on Dancing on Ice. The best thing they did for me though, was to be strong, I don’t know how they did it but they never let me see them upset, every day in that hospital they were happy and positive. Holding themselves together and being strong for me. They did all this as well as holding down their day jobs! I feel overcome with emotion to think about what I put them through, for them to have seen me like that, the worry I caused them, I guess the fear that they might lose me. They are so much stronger than me and I will forever be in awe of them.
Together with the outstanding care from the Royal Marsden I soon became strong enough to return home and the flat became my own safe little bubble, filled with flowers and cards full of well wishes from my circle of friends on the outside. Although I was too weak to see people, their determination for me to keep going and their support was overwhelming.
Three weeks later the first of six rounds of chemo started on Valentine’s day (in years to come if I'm ever crying over a tub of ice cream about how single I am, I know things can be a lot worse). Two days before I had the dreaded hair appointment. I shaved my head as a way of taking control over what was happening. At the time I didn't fully appreciate how hard losing my hair would be. I was driven by this sense of grin and bear it, you have to do it, just keep going. It helped that I had the most incredible wig. It was way nicer than my real hair! It was styled off Gigi Hadid, - who wouldn’t want to look like her when given the choice? Of course chemo was horrific but I had prepared myself for the worst thing you could imagine and so somehow in reality it didn’t seem that bad. I even found the strength to go clubbing sober one night (sorry doctors). I became a passenger on the rollercoaster ride that was cancer, pit stopping for chemo every three weeks, knocking them down one by one. The feeling of sickness intensified badly around cycle four and I started to look ill. It was hard to glance at myself in the mirror, I would see this pale, broken, bald person looking back at me, it was harrowing, I could see my own fear and sadness reflected in my eyes. I was a stranger to my normal bubbly bouncing self. It helped to dress up, put on fancy clothes and just parade around the flat, dancing to something like Sean Paul. In my head I decided that if I look good, I’ll feel good and that's exactly what happened. It gave me the strength I need.
My sixth chemo fell on June 5th, and afterwards I went straight to the pub for my first drink in six months. Two weeks later I celebrated my twenty-fourth birthday partying till six o’clock in the morning. We ended up in McDonalds like nothing had changed. Three days later I received my scan results. I was all clear, there were no visible signs of cancer. Obviously I was ecstatic, but I felt like I couldn't quite breathe out my sigh of relief. The doctors were encouraging, but honest - it wasn’t over “I was out of the woods but not out of the forest.”
I had an incredible summer, including a wild girls’ trip to Spain, I was letting off steam from the past six months. In September I started a new job intending to get back to my normal life. Only I started to realise that I will never get back my old life - too much has changed. The rollercoaster ride is slightly less scary, but I am still very much on it. I remain on a three week cycle of preventive chemotherapy with scans every three months. I am slowly trying to find my feet again.
I had a little blip in January 2020. I had agonising tummy aches, but (stupidly) I didn’t want to trouble anyone. I felt I had put everyone through enough this past year and I especially didn't want to bug John Butler- he had already done so much for me, and I had already scuppered his weekend plans too many times before. Instead I went into A&E and was swiftly admitted to urgent care. I had a bowel blockage and an emergency operation was scheduled, the cause of the blockage was unknown. It could either be adhesions or another tumour. I was petrified, I wasn’t ready for the cancer to be back. Worlds apart from my last year brave self, I could not control the tears. I wasn’t in the familiar Royal Marsden and felt very much out of my comfort zone. The doctors explained the significant risks of the operation, the preventative chemotherapy I was on was a blood thinner and wasn’t the best scenario to operate on. As the doctor put it “his hands were tied”, there was also the daunting prospect of having an ileostomy, and of course the worry that the cancer could be back. Being wheeled to the operation is a scaring memory, in the back of my mind was the thought that I could be saying goodbye to my friends forever. My mother was frantically on her way to the hospital, what if I never got to say goodbye? This specific moment is the most scared I have ever been throughout all of this. In pre-theatre the epidural had been administered and I was waiting for the general anaesthetic, the anaesthetist put his hand on my shoulder and said, “this has never happened to me before, but there’s been an accident and we urgently need to operate on someone else, do you mind if we operate on him first?” I agreed and was wheeled into recovery. My girl gang were back by my side but the mood was tense. We were all scared of what the outcome of the operation would be. Naturally they lightened the mood by showing me pictures of boys I fancied and watching my heart rate rise and fall on the machines.
Four hours passed and they were ready for me again. The surgeon noticed I was itching so gave me some antihistamine and told me I’d be ready to go in fifteen minutes. The antihistamine knocked me out and I woke up just as they were coming to wheel me in. I put a hand on my colostomy bag and my heart stopped, it was full. Somehow my bowel blockage had unblocked itself and I dodged a life threatening operation by a matter of minutes. Oh and this all happened a year to the day of my main tumour removal operation. It’s fair to say I felt someone was watching over me that day. The blockage was confirmed as adhesions, which are normal for an operation of my scale, and I was released from hospital a week later. I felt a bit like a cat that had now lost two lives, it was a weird feeling to be almost on your death bed and then in the pub a week later.
Aside from that slight blip at the beginning of the year I am doing really well. I am four days away from a year since I finished my main chemotherapy, it’s such a huge anniversary yet I feel like I can’t really celebrate. I still remain on preventive chemotherapy and I've very nearly ditched the wig! My hair is crazy curly but I think I have the personality to match. More importantly last week I received another “all clear” scan. It is amazing news don’t get me wrong, yet for some reason I still feel like I can’t breathe my sigh of relief. The risk of my cancer returning is high and that is something I can’t avoid. My future is uncertain and it's a very unnerving to feel like I don’t have two feet on the ground. I’m working out how to live with my comprehensive fear of the cancer coming back, it’s like I have a big black cloud hanging over me. I see it when I close my eyes at night and feel it on my shoulders during the day, I can’t seem to shake it off. I know I shouldn’t think negatively, but I’m scared, it’s a very hard thing to do to live like I don’t have this weight on my shoulders. I know it will get better with time but I won’t deny that some days I struggle to live like a twenty-four year old pretending everything is normal. I’m scared that if it does come back I won’t be able to get through it all again, that I am not strong enough. I worry about putting my friends and family through it all again or that I won’t get to do the things I so desperately crave from life. I feel like I have so much more to give. But I have learnt that there is no handbook for what’s happening to me, there is no right and wrong for what I should be doing/ feeling/ acting/ eating/ drinking. All I can do is keep doing what I'm doing.
I'm so thankful to every single doctor and nurse at the Royal Marsden, in particular my incredible surgeon Mr John Butler and oncologist Dr Susana Banerjee, without them I would not be here writing this. The level of care and support I have received is outstanding and it's weird to call a hospital a home, but for me, it is. When I walk past The Royal Marsden I often look up to the window of the ward I recovered in. I feel so helpless, as I know there is someone lying in that hospital bed going through exactly what I did, how scared they are and the struggle they are facing to find the strength to simply keep going. Sadly the Marsden sees thousands of patients like this every day.
To look back over the past eighteen months is hard, there are a lot of tears, a lot of sadness. Being ill took a lot from me and changed my life drastically, but I believe life is what you make of it and I’d like to say cancer has changed me for the better. I have learnt a hell of a lot and there has been countless laughs along the way. To look forward is also hard. All I can do is focus on now and continue to put one foot in front of the other, it’s what I've been doing and it's what I’ll keep doing all the way and every day until I'm 100! Cracking terrible jokes along the way.
December 2022: Update
Unfortunately the cancer did come back in the late summer of 2020, but I was reassured that it wasn’t causing any major problems and therefore we didn’t need to act on it. Life was jogging along and I was trying to live life to the full as well as adjusting to being someone that was “living with cancer”
I had scans coming up on the 14th of December 2020, I had huge anxiety about them as I knew the cancer was already there so it was only going to be bad news or best case scenario was that the tumours were still there but they were under control and not causing any problems. I left work at lunch time expecting to be back around 3pm, however before I knew it I was emitted as an inpatient as I was suffering from double kidney failure and would need an emergency operation to fit two nephrostomy tubes that would drain my kidneys directly from my back (not the official medical explanation but essentially what they do). The scan showed that the tumors were growing up my kidney tubes, essentially suffocating the kidneys. It was a big shock and a tough thing to get my head around, but it wasn’t a choice I just had to accept it. I was discharged on Christmas eve but then emitted on Boxing day morning with Sepsis. It was a seriously hard time, I wasn’t allowed any visitors because of covid and I was just left lying in the hospital bed trying to comprehend these new foregin tubes that were coming out of my body.
The beginning of 2021 was a huge learning curve of battling nephrostomies and trying to pick myself up again. The first few months was a sea of infections, dealing with leaks and various other problems that nephrostomies came with. Not only did they restrict me mentally but I was also restricted from traveling too far from London or the Royal Marsden. I did manage to escape to Suffolk multiple times and have many treasured memories of times there with my friends. By this point I had also ditched the wig and was sporting a much thicker darker curlier head of hair, I didn't look my pre cancer self but then I guess I am never going to get back to my pre cancer self?
I was still a regular at the Hospital, battling bowel obstructions and infections throughout the year. The May bank holiday 2021 was approaching and a trip with my friends to Scotland was on the cards. I cleared it with my teams in the Marsden that week and I was given the green light. The 6am departure time came to set off for the 7 hour journey, I was feeling and looking pretty out of sorts but we put it down to the 6am wake up. As soon as we hit the M6 toll it became clear I was not well at all, I telephoned the hospital and they advised that a trip to A&E was urgently needed with the fear of Sepsis. I was driven straight to the Dumfries Royal Infirmary instead of the lovely seaside cottage I had imagined. Again due to Covid my friends were unable to visit me and after a few days on antibiotics the novelty had seriously worn off. I was by myself eating hospital haggis and tatties whilst all my friends were at the pub, the nurses and doctors I met in that Hospital were in hysterics at my misfortune. Finally after a few days when I felt better I managed to persuade the hospital to let me leave a day early so that I could have one night with my friends. I was so ecstatic to be with these friends that I may have gotten slightly carried away, this led to some over enthusiastic dancing later that night which saw me accidentally rip out the nephrostomy tube from my back. A long painful journey back to London was followed by an operation the next day and my team now twitch whenever I mention the word Scotland.
Throughout the second half of the year I underwent numerous operations to try to fit a stent within my kidney tubes to try and relieve me of a nephrostomy. I lost count of how many attempts we had, I used to say I was becoming a pro at general anesthetics. We were successful on one side, which relieved me of one tube.
I snuck in one more hospital stay due to sepsis before the end of the year and miraculously made it to Christmas 2021. The weight of the Christmas before me definitely weighed on my shoulders and I was so thankful not to be in the hospital.
Follow up scans came on the 17th January and I remember crying for ages after the MRI, I couldn’t bring myself to walk out of the dressing room and get on with life. The clinical trial of chemo I had been on, was stunting the growth of the tumors but barely. As I had feared the scan showed that the chemo was no longer working for me and discussions turned to radiotherapy or a major operation like the one I had undergone in 2019. The operation would re-open the scar along my abdomen and try to remove the cancer that was surrounding my bowel and kidneys.
It was decided that the operation was the best option and the date of March 7th was set. Would you believe it but after 2 years of avoiding it on the 5th March I tested positive for Covid. Thankfully the operation was re-scheduled for 2 weeks later, I still feel incredibly guilty for the schedules of the surgeons I messed up! I thought I was prepared, it was an operation I had already been through in 2019 but I was advised this time that a 3 month recovery would be likely. Absolutely nothing could have prepared me for just how tough mentally and physically it was, it took everything from me, I still really struggle to come to terms with it. I understand from my incredible surgeon if that operation had not gone ahead I would 100 percent not be here to write this. However I lay in the hospital bed unable to find the strength to speak to my friends and family, even the strength to smile. I lay there not only wishing I was dead but actually genuinely thinking that I wasn't going to make it, that I wouldn’t have the strength to get well again. Looking back, the operation in 2019 was nothing, I would say 1/5 of what I went through this year. Recovery was an extremely bumpy ride, I couldn’t keep any food or water down and vomited all day every day for 2 and a half months. I couldn’t go on my phone, I couldn’t walk, I couldn’t watch TV. I didn’t have the mental capacity for anything, I was petrified. I have mentally blocked out a lot of it, I am not ready to re-visit and fully open that box of memories of my darkest days. This operation really took over my whole year, my mother celebrated her 60th birthday by my hospital bed side, I had to video in to my Granny’s funeral after sadly never getting to properly saying goodbye. I missed countless other events and birthdays or just precious time with my friends.
The doctor’s and nurses were amazing at trying to encourage me but it was so different from before, I couldn’t do it, I had no strength and I was a wreck. It wasn’t just me that felt like I would never get better, my friends and family around me could see that I wasn't getting any better. I had lost 4.5 stone, I couldn’t speak, I would avoid eye contact with everyone because my eyes would just fill with tears. All I could do was lie there wishing this wasn’t happening to me.
March, April and May are a blur and definitely my darkest times. I underwent 6 rounds of radiotherapy in May and I have no idea how I did that, I don’t remember or recognise myself at that time.
The days so far had been hard, but the scariest of it all for me was a batch of Sepsis in July. I remember a nurse late at night explaining that I needed to be transferred to critical care. Despite being so weak, you can feel the sense of fear in the room and the urgency. As the patient you feel so unwell you have no voice, it's not like you can make decisions, your sole focus is trying to stay with it. My friend said goodbye to me that evening and we both feared that I wouldn’t make it to the next morning. I still cannot think or even talk properly about this time without crying.
The most horrible part of all of this is that I wanted to die, it seemed like the easier option. In 2019 I wanted to die from the pain and the unimaginable scale of things I was having to process however I knew I wanted to get better and prove that I could and would get better. This time around I wanted to die because I didn’t think I could pull myself into getting better. I planned my funeral during the nights in the hospital, writing my final letters to my loved ones. It seems so dramatic now but at the time it felt like there was a huge chance that I wouldn’t make it. Another major difference between the 2019 operation and now was that I wasn’t strong. I have cried more than I’ve ever cried in my life, I don’t have the bravery or determination that I seemed to have back then. I look at photos from the past and I just think how naive I was, how I had no idea of the sheer scale of terrible things to come.
During my recovery the doctors continued to tell me that the day would come where I felt better and I didn’t believe them. I could barely stand for a minute let alone wash my hair, any normal everyday task was unimaginable to me. The day did eventually come in early September, to be clear I was still pretty much sofa bound however I could see a distant light at the end of the tunnel and more importantly I could see how far I had come since March. That hope that I had so desperately needed in March was now beginning to show and I was spurred on by realising that I was getting better.
I was aware mentally that despite me doing nothing, the cancer was not, I could feel it growing inside of me and I worried that I was fighting a losing battle. It was decided in September that I was well enough to start a milder dose of IV Chemotherapy, to be specific Paxletaxol (the same chemo I had received in 2019). A week later I was in the chair and have just completed my first round. I have decided to try a cold cap this time as I felt i’ve already lost my hair once, it wasn’t enjoyable the first time so I would rather not do it again. Should this chemo work I will continue on it for 6 months so all I can do at this moment is keep my fingers and toes crossed.
It's been an unimaginably tough time, I am still far from being ‘fully well’. I long to be back in the office or going to the pub with friends but it is just not realistic at this time. I am mentally scrambling to get myself together, for so long I was climbing up the steep mountain that was recovering from the operation desperately trying to get to the top when all of a sudden, I am spiraling back down again, feeling steadily worse and worse from chemo. I feel robbed of any time to stop and smell the roses at the top, any time to live my life. But cancer doesn’t wait for me to enjoy time with my friends, cancer doesn’t stop growing and that is what is most unsettling.
Today I would say I am a little bit lost, I am trying to adjust my focus to the new rollercoaster ride that is chemotherapy whilst still recovering from a major operation as well as dealing with constant kidney infections and problems that nephrostomies throw my way. Every week feels like a new problem that I have to overcome physically and mentally, choosing to park or store in another area of my already cramped and overthinking brain. Someone said to me recently they can’t comprehend that I am just always in pain but I replied “this is my life, I don’t have a choice I can’t just give up.” If I was to stop and wait for the pain to pass, or to feel better I would be waiting forever, I have no choice but to try and pick myself up and keep going. I have been battling cancer for 4 years now but I still have some of the best memories from the most terrific times with friends, those are what I will hold so close to me forever. Being so close to death this year really made me understand, as cliche as it sounds, but life doesn’t stop and wait for you to get better, life is about learning to live in the bumpy times.
I am so proud of myself for how far I have come, I don’t think I have fully got through the operation yet but I am close, and that is something I never ever thought I would say. I don’t know how i’ve done it, but there are 3 friends who I certainly couldn’t have done it without. They were there with me in 2019 and they are still by my side today. I am eternally grateful for them and all the continued support around me that lets me keep fighting and keep living.
