Lily was just 20 when she was diagnosed with Leukaemia. She needed a stem cell transplant, urgently.
Here is her story in her own words.
‘If I’m totally honest, I didn’t really think I was ill before I was diagnosed.
I knew that something wasn’t quite right but put it down to other things and being 20, obviously just assumed it wasn’t anything serious. I first started to display symptoms a week before my diagnosis. The first being a petechial rash on my legs. I sent a photo to my best friend who quite usefully also happens to be a nurse, she told me she thought I might have meningitis and to phone 111 immediately. I didn’t. It was only a rash and I didn’t have anything else majorly wrong so told her I’d go to the doctors if it got any worse.
Quite quickly it did get worse but not that I realised. Looking back I had almost every symptom in the book for Leukaemia and so when the rash got bigger, I became covered in bruises and my legs ached like I’d ran a couple of marathons back to back, I thought it was worth a check-up. Initially I was turned away by the doctor and told it would go down on its own but to have a blood test the following Friday just to be sure it wasn’t anything serious. I took comfort from the fact they didn’t think it was anything major so carried on as normal.
The next day I woke up with blood spots in my mouth and even more bruises, it all seemed to be spreading so I phoned the doctor to explain it had got worse. This time I spoke to someone different and he asked me about my symptoms. Was I experiencing night sweats? Yes, big time but it was the summer and it was hot so I just left my bedroom fan on all night. Was I tired? Very, I couldn’t go a day without a nap or two. Breathless? Extremely, dog walks were a no go. Did the bruises hurt? No, and I was covered. How did I feel in general? Weird. I could only describe it as weird.
He asked me to go in immediately, took one look at me and marched me down the corridor for a blood test. I left, went shopping and awaited his call with the results. Later that day he phoned me and asked how quickly I could get to the hospital. I remember him telling me not to panic but my blood results had shown my platelets were 8. ‘What should they be?’ I asked. “Between around 200 and 400”. At this point I didn’t even know what a platelet was.
I got to the hospital an hour or so later after a detour to my doctor’s surgery to pick up my life’s worth of medical records, weird for a few bruises I thought.
A few hours passed, I explained my symptoms, they ummed and ahhed about what could be caused it; I got stabbed multiple times whilst my weak and cancer ridden veins gave up on me and was finally admitted for a few days of monitoring.
Within those few days I got gradually worse, no matter what they gave me, the colour in my face slipped away, the bruises from blood tests grew and I became weaker and a little more worried as time went on. I was discharged on my 20th birthday with ‘probable ITP’ a blood clotting disorder and asked to go back on the Monday for a blood test just to check the steroids were working.
I went home, spent the majority of the weekend in bed asleep feeling frail but convincing myself I was getting better. Monday rolled around, I packed a pair of PJs and my toothbrush, just in case I needed to stay for the night, I thought but I didn’t come home for 7 weeks.
Sat in my consultants office he seemed cheery asking how the weekend had been, then stood up, put his hands behind his back, lent again the wall in front of me and said something along the lines of ‘I’m really sorry but some abnormal cells showed up in your bloods last week and we need to do an urgent bone marrow biopsy right now to rule out the risk of this being Leukaemia’. But in my head all I heard was ‘You’ve got cancer Lily, you’re going to die’.
After the mother of all meltdowns screaming that I didn’t actually want to die thank you very much, I had the biopsy, but obviously had no platelets, so my blood didn’t clot and I bled very heavily which they then couldn’t stop, which then increased the panic not only amongst my parents and I but also amongst the doctors and nurses that were quickly filling the room. I led in that tiny office for the rest of the day with my mum and dad, not really speaking, just staring at the ceiling knowing that I most probably did have what they thought, but clinging onto the tiniest bit of hope that it could be something much more simple and that I’d go home the next day and go back to work just fine.
Later that evening I was wheeled down to the cancer ward, placed into a side room which had ‘CHEMOTHERAPY’ plastered over the door and hooked up to transfusion after transfusion to top me up with blood, platelets and Cryoprecipitate. That night lasted a life time as I lay there wide awake knowing that if I went to sleep, I’d wake up and they’d tell me it was true.
Eventually I did fall asleep and a few hours after I woke up, the room filled with doctors and nurses again but this time I knew it wasn’t to offer advice or to tell me I did in fact just have the blood clotting disorder and I could go home. This time, my consultant sat on the end of my bed and diagnosed me with Acute Lymphoblastic Leukaemia. In the seconds those words left his mouth my whole world fell apart.
You can imagine how the next few hours and days panned out. Lots of tears, worry, what ifs and anguish about what lay ahead but amongst that also a whole lot of love, strength, reassurance and hope that this was a process and I would overcome it one step at a time. I only ever had to tell 2 of my friends I had cancer, everyone else my parents dealt with. Saying the words ‘I have leukaemia’ was beyond me and at that point in time and it still feels hard now.
3 days after my diagnosis I was moved to the Teenage Cancer Trust ward in Southampton Hospital to start intense chemotherapy which would see me as an inpatient for all of it. Having an acute leukaemia means there’s no time to faff about so just hours after I arrived at the hospital, I was hooked up and a bright devil red drug began to infuse into my veins. I spent the best part of 6 months isolated to my hospital room having treatment there with the odd weekend or week at home if I was lucky. I struggled a lot, not only with the physical side effects of having cancer such as the hair loss, weight gain and everything else that no one tells you about but the mental aspect hit me like a train. I’d always been a worrier but this became more than a bit of worry, the thoughts that engulfed my brain were blindsiding me and I would wake up daily, not wanting to speak or eat or listen to anyone just to sit and stare, telling myself that I was going to die.
Death was a massive thing for me when I got ill. Initially when I was diagnosed they told me there was treatment, they told me I was young and had my age on my side and that most people respond really well to the chemo and go on to live a normal life, but that wasn’t enough for me after a few months of living it. They couldn’t tell me that I was definitely going to survive this, they just couldn’t and so for me that turned into, well, you’re obviously going to die.
I didn’t die. I’m still here now, sat writing this! I responded very well to my treatment and now consider myself one of the lucky ones. In March I had a bone marrow transplant due to the high risk nature of my leukaemia. It was hideous, there’s absolutely no way to sugar coat it. The intense chemo and full body radiotherapy beforehand was brutal and I became someone I didn’t really recognise. I lost almost 2 stone in around 4 weeks, my hair fell out completely, I was fed through a tube and constantly connected to a syringe driver of morphine and anti-sickness so to be honest, a lot of the time I was pretty out of it. Again there were times throughout my transplant where I didn’t think I’d see the next day. How could my body take all of this and just accept it and work with it and make me better? It baffled me but somehow, it did and I got through it.
My donor was unrelated; just a random man somewhere in the UK who decided to sign up to the stem cell register and amazingly was a 10/10 match for me. Without him I didn’t really stand a chance, he saved me and gave me a future and there are no words to express how grateful I am to whoever he may be.
Please don’t hesitate in joining the Anthony Nolan or DKMS register. Without people that do, people like me wouldn’t be alive, that’s the long and short of it. We can get the treatment, we can do the chemo and the radio and the immunotherapy, all the side effects and everything else that comes with it, but we just need one special person to help us make it all worthwhile. I can’t imagine how it feels to know you’re saving someone’s life but I do know how it feels to be saved and I wish more people in my situation did too.
My last biopsy results showed I was 99% donor and currently negative for leukaemia and last week, just a year after my diagnosis, I celebrated my 21st cancer free, wig and all. The last year of my life seemed impossible but it was possible and now I’ll continue to shout about what I’ve gone through to make others aware of how important it is to be a donor. Please join and help save a life like mine. Thank you!’
Thankyou so much Lily, for your amazing account of your story – you had me in tears!!
Let’s just read this paragraph again …
‘My donor was unrelated; just a random man somewhere in the UK who decided to sign up to the stem cell register and amazingly was a 10/10 match for me. Without him I didn’t really stand a chance, he saved me and gave me a future and there are no words to express how grateful I am to whoever he may be.’
And that is what it all boiled down to. Someone somewhere having signed up to the register. A total stranger who just happened to be the most perfect genetic match for Lily and had the power within him, to share his healthy immune system with her, to give Lily her second chance at life. (Hands up who has got goosebumps)
If you are aged between 17 and 55 and in good health, please consider signing up to become a lifesaver in waiting.
You will be sent three swabs through the post that you swirl inside your cheek for a minute or two. Then you post the swabs back and that is that. If you are lucky enough to be found as a match for a patient like Lily, you will be contacted and will have the chance of being a match for someone right up until your 61st birthday. Make sure you update DKMS with your contact details should they ever change. CLICK HERE TO JOIN !
Here is a link to some information about ACUTE LYMPHOBLASTIC LEUKAEMIA
THANKYOU Lily for being so brave and fabulous and for sharing your story with us so eloquently.
You can read Lily’s blog by CLICKING HERE
Or find her on Instagram HERE Lilly’s account is set to private at the moment so you’d need to request to follow her
34 young people are diagnosed with cancer every day. Every. Single. Day.
If you are affected by Lily’s story, there is plenty of information and support at the TEENAGE CANCER TRUST
As always, thank you for reading. Don’t forget, if you are worried about any symptoms tell your doctor as soon as you can. Anything new that is not normal for you, must be checked out as early detection is key.
Couldn’t stop reading about this incredible young lady. So so happy to hear she’s come out the other side . Thanks Sally for doing what you do. I can’t be a donor, too old ,damn, but I spread the word about Blood cancer and symptoms all the time. Anne x