Nothing can quite prepare you for the emotional and physical rollercoaster that is aplastic anaemia. There’s no best-selling book that you can purchase at Waterstones that can teach you how to deal with the turmoil of an illness that wasn’t there yesterday but is very much there today.

But what I am thankful for is the stories that were shared at the time of my diagnosis that helped me through what was to be the hardest time of my life, yes even harder than my year 10 crush not liking me back. I hope my story sprinkles a bit of positivity on wherever you’re at in your journey. It got better for me, I hope it does for you too. 

Aplastic anaemia raises its ugly head

2015, I was in my last year of university in Liverpool and spent much more time drinking and partying than studying. I believe this masked my judgement for my (now so apparent) symptoms of AA. I was bruising loads and felt incredibly fatigued, I blamed this on “drunken falls” and late nights in the library revising and writing essays. I turned 21 and decided to treat myself to yet another tattoo. My artist was very concerned as he recognised that I was bleeding a lot more than the average person. He gave me a bit of a telling off and asked if I had been drinking (you’re told not to drink before a tattoo, due to alcohol thinning your blood, subsequently resulting in a potential blood bath). I promised him I hadn’t been drinking though I do recall knocking back a few glasses of wine the night before, it was my birthday after all! I bruised incredibly bad from this tattoo, which I found odd but again reassured myself it was down to the alcohol. One of my best friends began to mention that I was looking a bit pale and my foundation basically made me look a shade of orange. I was appalled considering it was high end 30 odd quid foundation from John Lewis. Little did I know it was due to being severely anaemic. It was at this time I thought to myself it’s probably best I got a blood test. 

The call that no one wants to receive...

 I answered the phone to a very concerned doctor, who urged me to get to the nearest A&E. The 21-year-old rebel couldn’t help but think “how dramatic” and responded by saying “can it not wait, I’m in Manchester heading out”? Little did I know once I went in I wouldn’t be leaving for another 7-10 days. I got back to Liverpool reluctantly and headed to A&E where the doctor informed me that my blood levels were abnormal and the nurse urged me to get my mum and dad to travel from London (home) to Liverpool. Panic button switched on. I spent some time in hospital and being the “give me the worst case scenario” girl I am, the doctors told me it could be cancer. I will never forget the look on my dad’s face as they took my first ever bone marrow biopsy, it’s safe to say by the 11th I was pretty much the pro. After tons of blood tests, copious amounts of transfusions and hours spent with keen (sorry to say but annoying) med students asking me the same questions, the specialists finally diagnosed me with a rare blood disease called aplastic anaemia, in other words my bone marrow wasn’t working properly.

I always knew I was one in a million, but this finally confirmed it.

The haematologists advised me to head home to London and get treatment. Again, I refused and begged them to let me finish my degree, they agreed on the basis I went to HOP twice a week for blood and platelet transfusion, perhaps a blessing in disguise as I actually managed to get some uni work done serving my 9-5 sentence in the hospital each week. I finished my degree and headed home to London where things sadly got a lot worse before they got better. 

Treatment begins

It was planned that I would have a treatment called ATG which was less invasive than a transplant. Cutting a very long story short and to spare you the gory details of my numerous hospital admissions and numerous infections it was decided that due to how ill I had become it was in my best interest to cut the ATG out and go straight for a transplant. This was never my initial choice and the thought of having chemotherapy freaked me out, plus I have spent hundreds of pounds over the years getting my hair as bleach blonde as it is, I wasn’t keen on the idea of having to shave it all off! Vanity never disintegrates even at the height of a fatal illness. At this point we all knew it was time for a transplant, every day that rolled over I could feel myself getting worse, the low lights included waking up every morning with a mouth full of blood due to blood blisters bursting throughout the night. My arms and legs were covered in platelet rashes and bruises and I don’t think my body could hack another round of tonsillitis. Not forgetting the exhaustion and mental drain of having to be transfused with blood and platelets twice a week. 

The time had come where I was ready to have my transplant, they had found a 10/10 donor and a bed was free for me. I was able to walk into King’s Hospital, London as opposed to being wheeled in on a gurney from an ambulance. At least I can tick that off my bucket list though. I knew I was to be admitted for no less than a month, and what a month it was. It was always going to be hard, but I didn’t realise the extent it would have on my mental health.

We talk about aplastic anaemia and the way it can destroy us physically, but staying in a room for a month can also destroy your mental health. I urge anyone who has long admissions to learn another language. It was a tough month, but my mum eased this admission massively. She never left my side and would always turn up to hospital with a little packed lunch.

She was the highlight of my day and continues to be the highlight of my life! Without her I would not have made it through this journey.

To the point, chemotherapy is everything it seems like it would be: cruel, gruesome and relentless. I had some really tough days and remember throwing up on my nurse, if you ever read this, I really am sorry!! I had more lows in this month than highs. I wasn’t able to eat properly for weeks and they considered feeding me through a tube, I caught infections throughout and at one point even looked like I had (bad) plastic surgery. 

Every day I would try my best to hide from the health care assistants just so they wouldn’t take my temperature because I knew another infection was looming, I spent most of my time swollen, red and with a cold towel on my head.

Post-transplant bounce-back

The light at the end of the tunnel soon came when I finally had my transplant, and having age on my side I bounced back straight away. I spent a few more weeks in hospital where I watched my levels rise day after day. This board was my holy grail and I worshiped it. 

I begged and pleaded almost every day to the doctors to let me go home. At one point I informed them I was going to self-discharge, I had enough and wanted to be at home. My nurses from HOP came to see me and I’m eternally grateful for their kindness during this time. They kept me sane (and well behaved). I stayed and the day finally came where I was allowed to run out of the hospital doors. And by this, I mean wheeled out in a wheel chair by a lovely porter. 

My strength comes back

It was pretty much plain sailing from here. I got stronger mentally and physically. My blood levels got better and better, I did have to have bone marrow biopsies monthly after which were gruesome, but the results always made it worth it. I had the occasional admission to hospital, which of course I hated but it was never as bad as the month holiday to ‘Costa Del Camberwell’ (King’s College Hospital). I’m 25 now and will be celebrating my fourth year post transplant in September. I have a wonderful relationship with my brave and inspiring bone marrow donor. I work full time in a prison - which isn’t great for a girl with no spleen but I’m making it work and I’ve been healthier now than what I ever have been.

The message I want to send to whoever is reading this is, it gets better. You have support. You are cared for. You can do it.