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My story (aka total nightmare) began in November 2018, roughly three weeks prior to diagnosis with a series of common ailments, which to start sparked no particular concern. Bruising appeared and I put them down to various antics. But in the week leading up to my admission, starting Friday 7 December, the symptoms grew, rapidly.
The bruises wouldn’t sod off. In fact, more appeared. A cut on my leg was taking forever to heal – longer than Brexit and its negotiations. I became breathless on the smallest run, had bleeding gums, a sore throat and the most painful mouth ulcer. I thought it was just a bug, and maybe gum disease.
However, on Tuesday 11 December and three days prior to diagnosis, an excruciating long-lasting sharp pain hit my left groin and knee. I sent my mom to the local superstore with a list: mouth wash for the bleeding gums; Bonjela for the mouth ulcer; Strepsils for the sore throat, and Tiger balm and ibuprofen for the bone and joint pain. MAD!
That night I did what they say you shouldn’t do. At 3am I googled my symptoms and up popped leukaemia, at the top of the f****** results page. THE TOP! In fact, the L word was EVERYWHERE on the first page. Every. Single. Result was linked to blood cancer.
Google and my THIRTY bruises – THREE-ZERO (impressive, I know) – prompted me to call my GP. I rang first thing that Wednesday morning and begged for an on-the-day appointment. They squeezed me in, and I am ever so grateful! I entered the consultation room, thinking, where do I start? I went for it – the bruising, the bleeding gums, the sore throat, the mouth ulcer, the pain in my joints. I needed to book another appointment for a blood test. I didn’t mention the L word though. I couldn’t. I mean, as if it could actually be that. Cancer is something that happens to other people, right? That’s what I always assumed. Nobody thinks it will actually be them.
Then Thursday happened, and my period had started and it was heavy AF (sorry guys). I had a three-hour exam that very afternoon too. And back then, I was ignorant, and this exam meant a lot. I had paid a lot and the pressure to pass… there was a lot. I was determined to boss this exam, then boss whatever was messing with my bod. I did just that. I passed.
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Still with me? Good.
On Friday I returned for a blood test and was told I had a blood clotting abnormality. I pretended that everything was totally okay, went to work, and that evening was prepping for my staff party. Didn’t get very far. My cut was bleeding and took agggges to stop; I was so tired I took a nap, but finally I was ready to go. But not ready for what happened next. Could my week actually get any worse? HAHA of course.
I had a voicemail and it was the hozzy (hospital) regarding abnormal blood results. I fell to my bedroom floor. Told you I didn’t get very far *rolling eyes*. They rang again but to the home phone and this time I picked up. They said I needed more tests and would need an overnight bag. I was like… right. Okay. One night? I can do this. And before I knew it, there I was in Out of Hours at Northampton General Hospital (NGH) on my own. Yep you read it… on my own. Let’s not go there!
On Friday 14 December at 10pm, I joined the club nobody wants to be in. “There’s no easy way of saying it, but your blood is abnormal,” said B, the consultant. My thoughts… Google can’t actually be right, right? Maybe I’m anaemic and I’ll be admitted for a couple of days. But then I heard the word that would change my world. I had suspected leukaemia. Acute promyelocytic leukaemia (APL) to be exact. Some shitty cells had set up camp in my bone marrow, without permission and f***** up by bod.
If not stunned silence, there were moments of pure child-like tantrums that this c*** of a cancer had formed in my blood. Cry, scream, stamp your feet – let your anger out – I did all that. And in my head were dramatic declarations like, “This is it, this is the end”, and “I haven’t even f****** lived”. I pictured a Victorian black carriage, pulled by a pair of matching black horses, accessorised with stunning black feathers. And “REALLY? I’m twenty-f******-seven – too young to be dealing with this rubbish”. Who the f*** is going to look after my little rascals (rabbits)? And work. Well they’re just buggered. End of.
Everything happened so quickly. I was rushed to the haematology ward and was attacked by needles, blood products and endless drugs. I was missing my own staff party. My mum was contacted and briefed on her arrival. The urgent care, that was spot on. Before my diagnosis, I had so many problems. But from that evening onwards, I just had one problem: cancer. It’s really given my life focus.
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B educated me on my suspected leukaemia the following day. APML, now more commonly known as APL, is a very aggressive and quick to develop blood cancer, and a rare sub-type of acute myeloid leukaemia (AML). It accounts for ten per cent of all AML diagnoses and roughly 170 peeps in the UK are diagnosed with my case every year. This makes me special, right? Northampton General Hospital (NGH) see just one case a year. I’m 2018.
As for the actual disease and the science behind it! The bone marrow that makes the blood… it’s f*****. Cancerous cells are formed when a type of white blood cell doesn’t fully develop. They cause havoc inside the bone marrow (BM) and multiply rapidly, preventing the good stuff from being made. The disease stops the vital flow of healthy blood to key organs, shuts down the immune system, and poses a high risk of life-threatening blood clotting and bleeding problems. This cancer! It wasn’t confined to one area of my bod. It was EVERYWHERE. These shitty cells were having a raging rollercoaster ride around my bod.
A bone marrow biopsy (needle in hip) soon confirmed it was leukaemia and I accepted the option of entering into a clinical trial. The reason? I wanted to provide information to the cancer research team, to help improve the quality of life for future patients during and after treatment. For me, something good had to come out of this disease. The trial plan itself was very similar to the original, and though I think it meant more tests etc., it also meant closer observation.
Honestly. It took a long time to digest all the information about my leukaemia, what the treatment involved and the associated risks, let alone come to terms with reality. Me googling my cancer prognosis at 3am, for the 156th time, didn’t do much good for my mental health. And during my cancer research (get me?), I found that prompt diagnosis and treatment of APL is urgent. Due to scientific advancements, it’s now easily curable – but with immediate and intensive treatment. Early death before treatment starts, or in the first days of treatment, still remains a problem.
So! Full marks go to the person who can correctly guess how long, if left untreated, it would have taken for things to go tits up. And I refer to tits up as in you wouldn’t be reading this article! (If you’re thinking minutes, hours or days… you’re on the right track.) According to B – and yes, I had to ask when I reached the end of treatment – I could have popped my clogs that very weekend post diagnosis, if I didn’t get that lifesaving blood test.
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Treatment was typically divided into three phases: induction (remission induction), consolidation (post-remission therapy), and maintenance. I got the most expensive full-body spa treatment available: chemotherapy. It’s a chemical peel inside and out, and my treatment plan featured four rounds of the stuff.
Round one was poop. I was confined to my hozzy room for five weeks, missed Christmas and New Year and, just six days into treatment, I won a trip to the High-Dependency Unit due to single organ failure. It’s an unpredictable and potentially life-threatening complication called differentiation syndrome, caused by administering all-trans retinoic acid, the most important drug in the initial treatment. Like pneumonia, it basically f***** up my lungs. So, there I was! Placed on 65 per cent oxygen support with the pleasure of experiencing a nebuliser, relieving myself in a commode, and the attempted insertion of an arterial line… or three!
I was basically the Grinch. A poorly, smelly and mardy one, whose brain was best described as fish food – flaky AF. I had no energy, not even enough for a convo. Insomnia was a b****. Muscle was going, hair was thinning, and steroids gave me a baby bump. My mouth tasted like metal with a cactus shoved in. And the sickness and back end… just WOW!
Compared to consolidation, round two was a breeze. Round three was a little more intense. And round four, as an outpatient… the body was still getting over rounds one, two and three. My skin was flaky AF. My feet were peeling. My lips were chapped. My head represented an egg, and my appetite… that was too good. But yes, chemo took my hair and along with it my identity. It was devastating. Treatment also took a large proportion of my brows and lashes, and that was just greedy.
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Now, leukaemia treatment kills the bad and good cells and shuts down your immune system, so patients are often isolated in a room with filtered air and strict hygiene rules. As a result, antibiotics often became my best mate and I spent 70+ nights in hospital over a period of four months.
Blood and platelet donations are also essential for people going through treatment, and some kind people who gave blood saved my life. Overall and in round one, I received 58 blood transfusions, 8 being red cell, 10 platelets and 40 cryo. (For more information on giving blood, please visit www.blood.co.uk).
But let’s not forget the help of a PICC line – total winner tbh! This is a thin, soft, long tube that’s inserted into a vein in the arm and positioned in your chest. It’s used for long-term intravenous chemotherapy, antibiotics or medications, and for blood draws, and can stay in place until treatment is over. (My PICC was inserted after round one because prior to that, my blood was a total mess. It was too thin. Imagine a reservoir, crashing through a burst dam. That could have been my blood and no amount of pressure could stop it.)
I didn’t have nurses poking and prodding, hoping to find a good vein, over and over again at 6am EVERY morning. And not only did the PICC make consolidation more bearable, my veins got a break. A well-deserved break.
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My experience at NGH? It was eventful, that’s for sure. I didn’t play an active role in my life. Stuff just happened and I was like, oh, is this what we’re doing now? Okay. And I went with it.
The food was hit and miss. The temperature regulation was never fab (but the ward provided a swanky Dyson fan). And the Wi-Fi! Well… there was none. I relied on Giffgaff and my personal hotspot linking my phone’s data to my MacBook. I also had a television – though sometimes minus a compatible remote – and en-suite bathroom.
In round two onwards I had priority over the teenage cancer room which 100 per cent felt more like an actual bedroom. It was at the end of the corridor, so quiet and peaceful. It was spacious, featured a recliner chair and dimmed lighting – a total upgrade when compared to the standard room. Okay, the view wasn’t great (it was a brick wall), but you can’t have everything.
The quality of care was a mix! An online meme, reading: ‘I felt like I was in season five of my life and the writers were just making ridiculous shit happen to keep it interesting’. That was me *hand up*. At times I experienced poor communication and uncoordinated care. However, I had a positive relationship with staff, in this case my consultant, the doctors and my Macmillan nurse. They treated me as a person rather than a set of symptoms. They made me feel important, like I was the only patient on the ward. (Of course, I had my fav nurses and HCA’s too.)
As a person who has been there, done that, I believe every patient who’s diagnosed with acute blood cancer MUST have a consistent, positive care experience and be treated with dignity and respect through their cancer journey. This is because we (blood cancer patients) spend a huge chunk of our lives in hospital, compared to other patients on other wards. Hospital quite literally becomes our home, and the ward your family, and the quality of care plays a huge part in our experience and the quality of recovery.
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When you receive a cancer diagnosis you can feel so alone and isolated. For me, there was no guidebook on how to deal with cancer, and I needed the answers to my many, many questions. And as a result, I turned to Google (again) and social media.
And as advice for someone who is going through a similar situation…
You didn’t deserve what happened to you. Nobody does. But it happened. You’re suddenly thrown into this proper shitty world you didn’t ask to be part of. It’s dark and shit – proper f****** shit – but you notice there are others there too, and it’s okay.
Social media has helped me to connect with people who are in the same boat, and during round one I started creating my mini crew of cancer chicks (aka buddies or tribe). They offered me and continue to offer valuable hints and tips, feeding me all the encouragement and kick-ass vibes humanly possible.
Total strangers become everything! You bond deeply with your cancer buddies (offline too), and ward staff. You unlock sooooooo much mental strength and the ability to accomplish so much. Then, once you’re ready, you pass on your knowledge to another patient – online and offline.
“The doctors, the pills, and the chemo may cure the cancer, but it’s finding the community you can relate to that heals you.” – Anonymous
There’s a massive cancer community, but it’s like Hogwarts, nobody knows it’s there until you get the letter (paperwork) to say you’re in. The humour we have is A-mazing! It’s a big coping mechanism. It can help you better cope with the suffering, give you an improved sense of wellbeing, and provide a welcome respite from the seriousness (shitstorm) of cancer and its treatments.
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I’ve learnt that from the moment you’re diagnosed, YOU are your biggest priority. Listen to your bod. If you want an ice-lolly, have it. If you’re tired, rest. Worry that little bit less. Be patient but persistent. Read a good book. Spend time with those who make you laugh. Note down questions for the doctors, and names of staff and their role…
I went into remission after round one of chemo, and having now finished all four rounds, I’m still in remission and have regular blood tests. I’m focusing on my fitness and regularly horse ride. But adjusting to the ‘new normal’… it’s not easy.
Cancer gets TERRIBLE reviews. “Rubbish”, “Really Sucks”, “1/10, would not recommend”. It wasn’t easy facing chemo and its side effects. It wasn’t easy losing my hair. It’s not easy having to rebuild your physical strength, let alone your life, and it’s painful knowing that one of my cancer peeps is yet to kick ass.
However, my life has definitely changed for the better since having had leukaemia. I now appreciate all the little things. I live for experiences and making memories. I’ve unapologetically cut toxic people and behaviours from my life, because I’ve endured enough poison (chemo). I appreciate waking up every day, and my bod… I’m super, super proud of my bod.
Sucks though. I think the hardest part of cancer treatment is at the end, when everyone assumes you’re cured and you no longer need their help. But there’s just one tiny problem. You’re at your weakest, most devastated state, plus you no longer have the mission you had when you began this journey: to kill the cancer. “The cancer is toast, but so are you, and now, like a soldier at the end of war, you need help putting yourself back together. Only, everyone has gone home since they assume the war has been won.” – Anonymous.
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Since diagnosis and thanks to Google (again), I’ve learnt that eighty-four per cent of people cannot name one single blood cancer symptom. One third of patients had to visit their GP at least three times before diagnosis. Experts estimate that more than 1,000 British lives can be saved every year, if the disease was detected and treated earlier. Now that’s pretty poop, right?
I’m optimistic. I want to bring the good out of this d***head. I want to tackle the label that we give this f*****. I want to reduce ignorance, increase understanding, and change behaviours and attitudes. I want peeps to take responsibility for their bod, be aware of the hidden symptoms, and hold the MUST HAVE guts to insist on that f****** blood test. Because that is the difference between life and death.
But that’s not all! I want to help those, like me, from one cancer patient to another. If I can help one person, I will feel like I have achieved something. And I know I’ve done just that – it’s a good feeling. And it’s weird, but in a good way – how people online who you have never met support you and get you, more than peeps (aka cancer muggles) in real life.
Seeing others sharing their stories and what they are going through inspired me to share mine. Social media has allowed me to raise awareness of blood cancer, coping with cancer, and the importance of giving blood.
Here are my top 10 tips on how to kick cancer’s butt.
- Make a bucket list of things that you so wish to accomplish.
- Connect with peeps who are in the same or similar boat.
- Find a positive from the disease e.g. share your story.
- Think of hozzy as a bed and breakfast, with dinner thrown in.
- Hang out with furry friends (when discharged) – animal therapy is good.
- Listen to your bod! If you’re craving an ice-lolly, have that ice-lolly.
- Make the most of PJ days… sleep and enjoy being braless!
- Have a good sense of humour – it’ll help you through the shitstorm.
- Make YOU and your mates (cancer and chemo) the biggest priority.
- Yazoo’s Vanilla flavoured milk! Perfect for when taking pills.