Jen's Story | Youth Cancer Trust

jen-124 year old Jen Bayley is from Stockport and has been to stay at the Youth Cancer Trust a few times during her treatment for Acute Lymphoblastic Leukaemia (All) and whilst she is now in remission.

I was diagnosed in February 2007 with Acute Lymphoblastic Leukaemia (ALL). I was 19 years old and in the first year at university, at that age I thought I was invincible. Naively I left my symptoms until the very last moment and ended up being admitted to A & E with a haemoglobin level of just 4 (normally range is between 10-14). My treatment would be over 2 years long which I was extremely shocked about. However isolated on the Teenage Cancer Trust Unit at The Christie Hospital Manchester for my first 4 weeks of treatment gave me chance to let everything sink in. I don’t think it sunk in completely for a while… I believe I am an optimist and I look at life through a glass that is half full so me being me was the only one in my family not to shed a tear. However, many nights I’d often think Why me? I realised quite early on that whatever the reasons I had no choice but to fight and felt by keeping in good spirits would make the journey slightly easier. I completed a year on intensive chemo by Jan 2008, I look back now and think to myself how did I get through it? It’s not something I think about often, it was a bit of blur if I’m honest however having my twin sister by my side helped a great deal.

Whilst waiting for routine bloods one day on the ward, I got talking to a newly diagnosed patient who happened to have ALL like myself. Within minutes, Kevin and I were talking as if we had known each other for years; he was so easy to talk to. The kind of treatment we were on meant we were back and forth to hospital at least once a week so Kev and I became good friends and would often talk over the phone or internet. We both got invited out on the monthly trips that the hospital organised which would take our minds off chemo and allow us to meet other friends going through similar experiences although Kev and I always had this special bond. I always remember staying in opposite beds on the unit and my TV going on and off and I couldn’t figure out why, until I turned round to see Kev giggling to himself because his remote worked my TV too. That was Kev’s cheeky side which he always had through treatment. I went on to finish all treatment in June 2009 – Kev and I would still meet up and speak often, I always thought about him and how he was doing, his cancer had been aggressive from the beginning.

In March 2010, Kev was back in hospital with unexplained temperatures and bone pain, I went to visit him and we joked about going to the cinema once he was discharged. I got a text a few days later from Kev asking if I wanted to go to the cinema with him, I jumped at the chance for a long time I’d had a soft spot for Kev but thought I’d have no chance looking the way I did, short hair and weight gain from steroids. It was lovely to be out just us two and from that day on Kev and I became a couple and we never looked back, having known each other for so long, we got on so well and I couldn’t imagine a life without Kev by my side. So when a few months later, the doctors confirmed Kev’s leukaemia was back, the fear of losing him broke my heart but I had to be as strong as I was when I was ill and Kev and I faced it together believing together our strength was too strong to be defeated. Kev underwent a life threatening bone marrow transplant from his older brother in September 2010.

The odds were stacked against Kev because of previous bouts of pneumonia and lung infections meaning the radiotherapy Kev needed for his transplant could cause fatal damage. Nevertheless, he got through it, proved the doctors wrong and was home middle of November ready for Christmas.

I started to worry less the further we got away from his transplant because although there was a long way to go before we knew for sure it had worked, things started to be getting easier for Kev and he looked better. Kev wanted his independence so we moved into a flat together at the end of February 2011. Our hopes were completely shattered when on the 1st March 2011, a routine bone marrow biopsy detected a massive 70% leukaemia back in Kev’s bone marrow – we both knew it meant a terminal prognosis, the doctors had gone beyond what they could do for Kev and on that note we left in silence with Kev having between weeks and months to live.

I was completely heartbroken at the thought of losing the love of my life. We didn’t want to give up, it wasn’t fair and Kev wanted to live so much. His friend found an article about a clinical trial for Kev’s cancer in Germany, within a week our consultant had agreed to it being a last chance and gained funding from Stockport Primary Care Trust.

We were on a plane by the 6th April and amazingly Kev looked like a different person, a few days earlier he looked so ill whereas now Kev had something to fight for and HOPE. Kev proposed to me in Germany, he said he wanted to do it before the trial began in case the worst happened but he loved me and wanted a future with me, he was the most selfless person I had ever met. Unfortunately, Kev never got to the end of the first cycle of the trial as he had picked up a nasty infection. Kev died peacefully in my arms with his mum by his side on Friday 20th May 2011. I am not bitter instead I am lucky to have known and loved such an amazing young man.

jen-gradIn June 2011 I took a break to YCT Bournemouth, I needed the break and having been before; I knew it would be the perfect place.

Everyone there understood and all the activities kept me busy. It is important to be around people going through similar experiences to you because they just know and understand. I intend going again in 2012 with a few of my friends I’ve met on my journey through cancer.

I can’t stress enough the importance of having a place to be able to go to get away from your usual environment, to be around similar people with some of the loveliest staff who go that extra step to make your break perfect.”

Jen and her sister Caroline at Jen’s graduation

Thank you very much to Jen for sharing her story with us.