This blog has been extremely hard for me to write. I wanted to share pictures to show people how severe it really is. I am making myself vulnerable to help others, which is taking a lot of bravery and I couldn’t do this without trusted support.

How it started

In May 2017, I graduated from university with a degree in Policing & Criminal Investigation, was in a full-time job and seeking to start my dream job. In October I had started to notice small red dots on my legs and chest which I now know was a petechial rash but at the time I just thought it was blood spots from working out at the gym. During a weekend in Blackpool in early November I developed large dark bruises all over my body, mainly on my hands, arms and feet and probably did the worse thing - I googled the symptoms!

On 7th November, after an emergency blood test at my GP’s they called me later that day and told me to go straight to A&E at Sunderland Royal Hospital. At A&E more blood tests were done and I was given a platelet then blood transfusion as my blood levels were very low. Having no idea what was going on I was moved to a temporary ward where I was seen by multiple doctors and in the morning, I was transferred to a haematology ward where I was surrounded by people with blood cancers. This reconfirmed my google diagnosis of Leukaemia!

The diagnosis

After a week of more blood and platelet transfusions, more blood tests and a bone marrow biopsy on 20th November, I was given the surprising diagnosis of Aplastic Anaemia. Like most people, I’d never heard of it, in fact my consultant said he’d only seen 3 or 4 cases in the past 4-5 years and I was the youngest person he had ever treated with AA.

I immediately thought ‘oh, iron deficiency’ thinking it would be a simple fix, until he explained what it was. Life changed forever that day.

Strangely after my diagnosis I deteriorated quite quickly and my symptoms seemed to escalate - bleeding gums, nose bleeds, thumping headaches and fatigue. By this time, I had no neutrophils, so I started to become extremely ill with infections. I had to isolate myself from friends, family and stop work, basically I couldn’t do anything.

Living my life in hospital

From November I was in and out of hospital every couple of weeks. My first admission was related to the flu jab I had in November, next when my Hickman line was inserted in December (it never healed and was always painful) and one of my worst infections was in January 2018 when a mouth ulcer turned into a bone infection in my jaw. I became critically ill with sepsis and after recovery from this, two days later I was back in hospital with sepsis and bleeding in the bowels - this was my low point. I was in so much pain the acute pain team from St Benedict’s Hospice in Sunderland managed this aspect of my care, working alongside the haematology team and this is when I felt I couldn’t go on anymore. In my mind, I was preparing myself for not coming through this. I couldn’t eat or take medication … but was it a positive that I could barely speak?

My treatment 

I was preparing to have a bone marrow transplant (BMT) and my sister was tested but unfortunately wasn’t a full match. However, via the Freeman Hospital in Newcastle, I did have a 10\10 matched unrelated donor found. However due to the treatment pathway and the urgency of having to start treatment my consultant said he wanted to try horse ATG and Ciclosporine, a chemical equivalent treatment (but this isn’t a cure). It only had a 30% chance of working. The risks associated with BMT treatment were high with a 50% chance of surviving (but at least I have a backup in case of a relapse in the future).

I received my ATG treatment on 14th February 2018 which was a transfusion given over 4 days, after that I was in an isolation room with Hepa filters to reduce the risk of infection (the Sunderland Royal Hospital has only one of these rooms which is funded by the Teenage Cancer Trust).

I had some serum sickness and the anti-fungal medication affected my liver. It took 6 weeks for my neutrophils to start to respond and they gradually increased, so I was eventually discharged on 5th April 2018. I had to start adjusting to life at home which was scary at first if I’m honest. My Hickman line was removed in May when I was transfusion free. The next couple of months were extremely tough emotionally and my perspective on life has now changed - my attitude and priorities have changed.

What does life look like now?

I still have regular checks to ensure my blood counts are ok and that the ciclosporine levels in my blood are at the right levels for me, and I am remaining on ciclosporine at current levels until February 2019 when my consultant will start to wean me off gradually. Even though my levels are steady I always worry I’m going to relapse.

So, I’m in remission and starting to slowly re-build my life and a milestone in my recovery is that I have just started a master’s course in Counter Terrorism and I am back at the gym trying to rebuild my fitness.

I’ve kept a diary which has been really useful, it’s both fascinating and scary to read it now but it’s also good to see how far I have come.

I know it’s a slow recovery process, but I now feel that I am getting back to normality and have hope for the future. This week on the anniversary of the 7th November, my mum & I went to Edinburgh to watch Joe Lycett to celebrate, beats ward D46 any day!

Here’s a picture of me during and after, this photo keeps me grounded of how critically ill I was and how you can never tell what’s coming.

I would like to thank my mum, dad and my family and friends for all their support, and to also thank all the staff at Sunderland Royal Hospital who are fantastic and cared for me so well.

I would also like to thank the Aplastic Anaemia Trust for their support and especially to Grazina for her encouragement and kindness.

Throughout my illness I was always smiling and positive, I had to keep fighting. I couldn’t have done any of it without my circle of support. I am still struggling with mental health and the after-effects of this, but I have more stories to share even if they help one person.