Zoe Sarginson

27-year-old Zoe Sarginson was in the first trimester of pregnancy when she began to feel ill, but her symptoms were mistaken for pregnancy and a bad infection. Zoe knew something wasn’t right, and her persistence soon delivered a devastating diagnosis of acute myeloid leukaemia. Nearly two years since the onset of her symptoms, Zoe is sharing her story.

I’d felt awful in the months leading up to my diagnosis, although I was in the first trimester of pregnancy, and boy did I feel rough! It was late December 2018; Christmas had been a disaster because I was so poorly. Morning sickness raging, accompanied with uninvited aches and pains. It was flu season too, so I was constantly battling one cold after another. My little boy had just recovered from a bad chest infection and chicken pox, so our immune systems were pretty low.

My gums were sore, and my glands were double in size—something I hadn’t experienced in my first pregnancy with Benjamin in November 2015—so when a routine reminder landed on my doormat for a check-up at my dentist, I booked myself in.

I wasn’t taking any chances after sadly having a miscarriage in the previous December at 10 weeks.

So, when I fell pregnant again, I anxiously awaited the day of our 12-week appointment to arrive. We had been more observant this time—any little twinge and we would worry. So, when the day of our 12-week scan came, we were both a nervous wreck.

I was so relieved to hear that my baby was perfectly healthy and developing well! We were overjoyed—tears of happiness and relief gushed down our cheeks.

The day came around for my appointment at the dentist. I had a scrape and polish, barely. The pain was unbearable, and the dentist looked so perplexed as to why he had a woman in his chair in so much pain from something that should be relatively pain-free. Halfway through, he stopped and advised that he didn’t continue as it was causing me so much pain.

I booked myself in to the doctors the following day and explained what had happened. They were unsure what the problem was, but a clinically educated guess was infection. I was prescribed a course of antibiotics—not practically strong but should kill off any infection that was lingering. I couldn’t be prescribed any pain relief because of the baby. He suggested soft foods, a hot compress, regular paracetamol and rest.

Fast forward two months, another two courses of antibiotics, six boxes of paracetamol, many trips to the doctors, dentist, even A&E and my gums had got worse. They’d swollen to the point I couldn’t eat or sleep because it was agony. My glands under my jaw were also very swollen so I couldn’t even talk properly because my jaw would push on the swelling. I had lost weight too, plus I was tired all the time. And I was still none the wiser as to why. If I hadn’t been pregnant, I would have taken whatever the doctor could offer and sleep it off.

But something was telling me this wasn’t right, not for a pregnant woman. My face hurt, my jaw hurt, my glands looked like I’d got conkers stuck in my mouth—I was one angry momma. I had to get to the bottom of it.

Feb 28th started just like any other, except with another trip to the doctors. My regular doctor was unavailable, so I was going to be seen by a locum doctor. The thought of retelling the entirety of the last three months was disheartening.

After the appointment and following the doctor’s instructions of having a full blood count taken straight away, I went home, feeling deflated. I put the kettle on and made a cup of tea, trying to forget about the uninterested look of the doctor that I’d seen an hour earlier. I think he only looked up from his computer screen once.

Then my phone rang. ‘Withheld number’. I looked at the screen for a few seconds and pondered whether to answer—call centre, most likely. I slid my thumb over the accept button. Good job I did, as it was a receptionist from New Cross Hospital. The lady on the phone told me the lab at New Cross had received my blood that was taken earlier that day and it had been analysed. I should get in touch with a friend or relative and ask them to accompany me to New Cross. I was told to go to the Heart and Lung centre, located at Zone B within the next half an hour. I was also advised to bring a bag of overnight clothes. I asked why, but no more information was given.

Panic set in. My instant thought was the baby. I was 16 weeks now, four weeks past the infamous ‘safe stage’. I hadn’t been bleeding, and there wasn’t pain in my stomach. So it couldn’t be the baby, could it? I’d been so careful, looking out for signs or changes to indicate I might be miscarrying, but there were none. I was still being sick at all hours of the day. I still felt pregnant.

I phoned my dad and told him what had been said. The car journey with my dad was strange. Both of us had a lot of questions etched into our heads and neither of us could answer them. We said nothing, not a word, but our thoughts roared like thunder.

When we arrived at New Cross there was an uneasy feeling as we walked through the long winding corridors to CHU. What did that even mean? After we were buzzed through the wide double doors, we were ushered into a tiny room with five chairs and a small round coffee table in the middle.

As we waited, I held onto my stomach. In the next few minutes, I might get news that would shatter my heart, and destroy the future I had envisaged. Dad put his hand on my knee to get my attention. They were here. A team of doctors, consultants and oncologists bundled into the room and everybody shuffled over awkwardly so we could have some privacy with the door shut.

28.02.19 was the day my life changed forever. I had the conversation nobody ever wants to have. I heard the words too many people hear: “I’m sorry, your bloods tested positive for an abnormality. We think with further tests it will confirm cancer.” I could see her mouth move but the room had fallen silent. I listened again. “Leukaemia… but unfortunately Zoe, we are unable to start treatment while you are pregnant.” I zoned out again. “Abnormalities in your blood show it’s aggressive.” In that instant, at age 27, I was a mom with one young boy and was also four months pregnant. I immediately joined a club no one ever thinks they will be a part of. The words were drumming in my head. Over and over again. Cancer, cancer, cancer.

The room was spinning now, my jaw was hot and throbbing, my mouth had gone dry. I realised my arms were still wrapped around my stomach and my back was starting to ache. I could hear words and phrases being thrown around that I didn’t understand. Blood cells… bone marrow… mutations…

The doctors went on to explain that the treatment I would be receiving would inevitably end the baby’s life, and I couldn’t postpone treatment because it would put my life at risk. I had one choice.

I broke down to my dad, our tears and sobs filling the room with noise. One of the women (who I later learned to be my consultant, Angelique) offered us a cup of tea and some privacy. I agreed and suddenly everyone was gone. It was silent again.

I couldn’t find the words to speak. I hugged my stomach, curled up into a ball, and sobbed some inaudible apologies to the child hiding inside me. Dad held onto my shoulders and told me it was going to be okay and me and my partner would get through it.

The door opened and in came Angelique. She asked me if there was anybody I wanted her to call. I fumbled with my phone, dropping it on the floor and cracking the screen. Managing to find my partner’s work number, I handed it over. She told me she wouldn’t tell him over the phone, but just ask for him to come in.

In that moment, and in the days and weeks that followed, I didn’t know exactly what was going to happen. All of the doctors told me I had a good chance of gaining remission; I was young, healthy and they had caught it early. I had only had my bloods taken in January and they had come back fine. I was told it would be a long and difficult year. They explained I would have to stay in for a while and talked me through the process and treatments available to me only after I had had what they prefer to call a ‘medical miscarriage’. They explained the process and it would effectively be the same as an abortion. The treatment was the same, just higher dose and quantity.

 

04.03.2019 

I gave birth to my sleeping boy. He didn’t even weigh 1lb. He was beautiful. His fingers were still webbed, and he was ever so tiny. But he was perfect.

Looking down at his still body, I felt nothing but guilt; I had done this to him. I had signed his life away with that consent form. I had agreed to the procedure, I had lain there for hours on that bed waiting for something to happen, waiting to feel a contraction. Knowing when it happened, when the first pain ripped through my stomach, we were to be parted.

The staff in the delivery suite were incredible, I was given a lot of support not only before delivery, but during and after too. Hand and footprints were taken and given to me in a little book. Photographs were taken of the little boy that had saved my life.

For the first few weeks, it was as if it didn’t really sink in. I was in shock too much to even think. After the delivery, and the week that followed, came a haul of tests and treatments, blood transfusions and IV lines.

I was asked if I wanted to participate in a clinical trial. Under the name of FLAG-Ida 19, I was subject to two very intense rounds of chemotherapy over a six-day period. The results from my trial would be used in clinical research of my condition, hopefully benefiting other sufferers in the future, but most definitely contributing to research. I was advised it was my best chance of receiving remission. It was a rough course, but if my body reacted well, I could be in remission within the year.

Being an inpatient is hard for anyone, however long the stay, whatever the reason. It’s even harder when you have young children, or people who depend on you. My son was two and had to move in with his grandad (my dad). I didn’t put him to bed, I couldn’t cook his dinner, I couldn’t run his bath and make it extra bubbly, I couldn’t sing to him or cuddle him when he hurt himself. Each day I was away from him broke more of my heart.

My dad visited me every single day without fail. He moved mountains to keep my son happy and comfortable. He converted his spare bedroom into a bedroom for him. My stepmum hung pictures of me around the room and made sure he had his favourite Peppa Pig blanket. My partner stayed with me for the first round of chemotherapy. I had a side room, with a pull-out chair/bed. After then he was told he wasn’t allowed. Trying to grieve and have strength to fight this disease at the same time was difficult.

During my stay I was admitted to intensive care three times. As an inpatient this is rare (the idea being that anything serious should already be under control by the ward). I was told on numerous occasions by various staff that I was extremely lucky. I wanted to laugh at them. I’d just come off 100% oxygen and lost three days of my life having been put to sleep. I was miles away from home, from my son, and my little boy was lying in the morgue because of me. I wanted to shout and scream that nothing about my situation was lucky. I wasn’t a statistic or a medical rarity. I was a mother, a woman who had cancer, whose soul was aching with every breath she took, for her son she had lost and the son she was too poorly to have visit.

The side effects continued and multiplied. Runny nose, horrible appetite, moody, cold, then hot. Excess sweating. Extreme fatigue. Low neutrophils. Low bloods. Nausea. Diarrhoea. Hair loss.

You’ve heard things about chemotherapy in passing, maybe even read some stuff in books. But none of that prepares you for the process itself. You won’t be ready for the hours of watching poison slowly drip into your veins through an IV. You know it’s both killing you and keeping you alive, so you can’t complain. But it will make you feel so weak and so sick and so powerless that sometimes there’s nothing you can do but curl up in bed and cry. It will ruin food for you, and you’ll walk around with the taste of metal on your tongue. Fight through the pain. It gets better.

I contracted sepsis, twice. My left lung collapsed, I had multiple infections in my lungs, viral and fungal. I was battling a hospital-bred virus known as CMV, two blood clots, two infected lines, two bouts of pneumonia, and organ failure. When I developed a nasty, full body rash, it took a joint conversation between me, my oncologist and infectious disease doctors to isolate the one drug among so many that was the culprit.

I received a mixture of high dose antibiotics for my infections, oral and IV. I had blood transfusions, platelet transfusions, IV fluids, oxygen, a mix of lotions and potions for my skin. Two intense rounds of chemotherapy, and medicines to counteract side effects of other medicines. More treatment meant more side effects appearing without invitation. Another rash (thankfully not as bad second time), allergic reactions and then a very welcome surprise with hair appearing immediately after chemo ended.

The treatments that I received nearly killed me very suddenly, but also quickly saved my life. On June the 10th, I received the news that I was in remission. Not to be confused with cured. My cancer was under control, but it wasn’t gone—it was sleeping. I had to remain in hospital until my counts recovered and I was no longer requiring IV fluids, antibiotics, bloods, platelets or oxygen.

It was my son’s third birthday at the end of July, so I was determined to be home for then. Unfortunately, I had been admitted into ICU in early July, so I knew there was no chance of me being at home with my son for his birthday. I should have been watching Benjamin open the presents I’d gone and bought. I should have been tearing around the house making tea for guests while carrying the big bag around for wrapping paper that had been torn off in sheer excitement. But I woke up without him, and he woke up without me.

The first few hours of that day I just cried. My best friend came mid-morning. She brought with her gifts for Ben and her usual bag of goodies for me. Heidi is a wonderful person with the kindest soul you will ever meet. She was always bringing me things to make me smile and keep me busy, as well as bringing more practical items in a gorgeously displayed hamper. She would send me inspiring messages, cards of encouragement and all the love and support she could offer. So much so that when my hair started to fall out, I asked Heidi if she would go ahead and do the shave for me. She was there through it all. I remember waking up in a haze whilst in ICU, looking through a window and seeing her face. She was poorly, so didn’t want to come in, but she just wanted to be there when I woke up. I’m so grateful for the past 14 years of our friendship.

At about 11am, the wonderfully kind staff on B11 announced they’d be throwing a surprise party for Benjamin in the day room. They had taken the time out of their break to decorate the room with banners and balloons. They’d brought in food and drinks, and they’d also all chipped together to buy him a birthday cake and a few presents to open. It was a wonderful occasion. Not the way I’d expected to celebrate his third birthday, but under the circumstances, it was the best day I could have hoped for. We laughed, we celebrated, and we sung. We got lost amongst the celebrations so much so, the bleeps from the machine I had attached to me were almost inaudible.

My son smiled from ear to ear—a huge beaming smile that always made my heart melt. He chased the balloons around, and he ate so much food I was surprised he wasn’t sick! The staff had put in so much effort and time into organising, they really did go above and beyond. I’ll never forget what they did for us that day. I was so overwhelmed with their kindness and generosity. I know a lot of the staff were mothers themselves, so they understood how difficult all this was for me.

Another few weeks passed, then finally the day came. My discharge day, the day I’d been waiting for after 155 days! I was very keen to go home, but walking out of the place that had saved my life, the people that made me feel so safe, fear struck me. What if I got bad? Collapsed at home? What if my oxygen levels dropped? What if I was alone with my son when all that happened? I had spoken to my consultants about this and they reassured me they would not be discharging me if they felt like this would be the case.

In August, I was told under strict guidelines I could go home. I was required three days a week to go and have tests and treatment at New Cross. I’d be there for 10 o’clock and wouldn’t leave till gone 6pm. Most days I would need blood that transfused for four hours; it would take at least an hour and a half to be delivered after waiting another 90 minutes for my bloods to be checked. They were very long days. At home, there were certain foods I couldn’t eat when cooked certain ways. I wasn’t allowed around animals. I wasn’t to be messing with anything that holds germs (cleaning the loo, that sort of thing). I had to be aware of any changes and inform them straight away if I started to feel unwell. I had a direct number to my consultant’s receptionist so I could always get hold of someone.

In September, we finally got to lay our precious little boy we named ‘Joshua’ to rest. We decided to have him cremated as the cemetery was a bit far from where we lived. The service was beautiful, conducted by Julie and Stuart, who are angels on earth. My son was given a beautiful send off. We placed beautiful red roses on his tiny white coffin. ‘Small Bump’ by Ed Sheeran played as we stood together, united in grief and sadness, knowing that the little body lying in that coffin was the reason I could be standing there that day.

When I began my cancer treatment, I couldn’t wait for the day I finished. But when that day came, I was unsure if I was ready for life after treatment as a ‘cancer survivor’. I didn’t feel like a survivor. I didn’t do anything tremendous; I didn’t fight a war or save a life, I lay in a hospital bed for weeks upon weeks while the chemo and drugs did all the work. A lot of time I was in too much pain to even move out of bed for the toilet.

Adjusting to home life was hard. I thought I’d just slip right back into my existing life, but I didn’t. I couldn’t find my place. It was almost like this huge explosion had gone off, and everyone was manic. But now it was all silent. Everything felt different. I distanced myself from my partner, not knowing where to turn, not knowing what my future was, what it held for me. Eventually our relationship broke down. His love and support through that time was second to none.

At home, I saw and heard the term AML less often. My friends and family, rightly so, were very eager to return to a normal life. For me it was terrifying to leave the protective cocoon of doctors and nurses who supported me through months of treatment. In this time, I learned that recovering from cancer isn’t just about your body – it’s also about healing your mind. I still worry that every ache or pain is a sign of my cancer recurring. Eventually these fears will (I’m told) fade, though they may never go away completely.

When I was diagnosed, I didn’t focus entirely on my treatment and getting healthy. My mind was on my son, and my baby lying in the morgue because I was too ill to attend or organise a service. I was thinking about my family struggling at home. My son not having his Mommy. Now that I’ve completed treatment, I’m unsure where to start with dealing with the fact that I had cancer.

I think cancer affects our ability to cope with negative events as we become emotionally spent. Once you’re emotionally spent, anything can tip you back off balance. There is no manual for coping with this and I do whatever suits me at the time, knowing the moment will pass. Sometimes, I’ve found the moment passes to another even worse event. I tell myself that the mudslide has to have a bottom. When I find it, I can start climbing back up the hill again. The enormous amount of mental and emotional effort this takes can be draining. I get angry, upset and irritable when life seems unfair, but when I’m back on top, the view is worth the effort.

When you get caught in a cycle of misery it can be hard to break the thought cycles. It’s important to still try to keep going through the motions of your usual routines. No matter how hard it feels to get out of bed, just keep doing it and eventually something will trigger you to snap out of it. It might be a friend you chatted with, or a stranger that made you laugh from a distance. Socialising was difficult when I was feeling low, but it really is necessary. It has positive results for firing me back up again. As an introvert, I’m always happy in my own little world but too much isolation isn’t good for anyone. Time spent reconnecting with people is always worth the effort.

Those times in which I do need to be alone, I enjoy drawing or writing. I can escape my own thoughts with these crafts as I become absorbed in them. They are good forms of mindfulness.

Looking for new books to read can also help because following someone else’s words, on an interesting topic, loses me so much that it allows me to find the road back to myself once again. Music is a similar therapy too. Without so many truly wonderful musicians, my mental world would be a lonely place. Music can take us on a virtual journey, resonating with our fears, hopes, frustrations and finally bringing us back to peace.

But sometimes, we just need a rest and a long sleep to recharge and reboot; to get away from ‘doing’ and simply learn how to ‘be’ without expectation or productivity.

I try to focus on the ways cancer has made me a stronger person and realise that I’m more than the scars and the memories that cancer has left behind—although that’s difficult to do when the scars are so visible. I still feel like ‘the woman that had cancer’; I still get sympathetic looks, followed by ‘how are you coping?’ My heart still shudders when an advert comes on the radio for cancer research. My dreams take me back to the ward at night. I struggle with my image, the fatigue I feel is something that has yet to subside, and I can’t enjoy food the way I used to.

Yet now I do realise how lucky I am, how the medical professionals saved my life. My doctors and nurses consistently gave combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. I am lucky. Right now, I’m sat next to my son, on our sofa, in our home. He’s munching on a packet of raisins and watching The Lion King. I’m lucky to be alive.

And all of this brings me to today. Since I can’t change anything of the past year, I will not ignore the day that changed my life. I will continue to think about the good that has come from my cancer. I will never forget my little baby Joshua, who saved my life. I think about him every day. I appreciate every single person in my life. I appreciate each day in a way I never could have imagined before. I now know what it means to be thankful for each day. Unless you are faced with death, I don’t think that’s really understandable.

While there are so many with so many diagnoses and prognoses much worse than mine, when you hear the words “it’s aggressive”, that feels about as close to a death sentence as a seconds-before healthy, young-ish mom could feel. I still worry the cancer could come back. I think that’s part of my future, but it won’t stop me from anything. Though my doctors still can’t say how likely it is for my cancer to return, it doesn’t really matter. I will always have a little bit of cancer fear that I didn’t have before.

Food safety advice where neutrophil counts < 2.0 x 109/litre

The following advice is taken from British Dietetic Association 2016

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