One could be forgiven for failing to understand the importance of donating blood and bone marrow – unless, of course you are affected by blood cancer. For those facing a battle against cancers of the blood such as leukaemia, a bone marrow/stem cell transplant can often represent the best chance for a cure. However, finding a match for a potential bone marrow donor is not without its difficulties. The lack of mixed ethnicities found on the national and international bone marrow register creates somewhat of a cultural lottery for those seeking a match. Indeed, it is a lottery for everyone, but far more so for those of a non-caucasian origin. One man who wanted his own legacy to change this was Adrian Sudbury. 
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A promising young journalist from Derby, Adrian was diagnosed with two conflicting forms of leukaemia at once, making him the only person in the world suffering from such a situation. After a two year fight against the disease, Adrian sadly lost his battle in 2008. His dying wish was to raise awareness surrounding the importance of donating blood and bone marrow. He believed that more lives could be saved if young people understood the importance of bone marrow, blood and organ donation. Adrian set out to campaign for better education and managed to take a petition supporting his vision to government, shortly before he lost his battle with leukaemia.

His parents Keith and Kay worked tirelessly to turn their son's vision into a reality and in 2009 they established Register and Be A Lifesaver (R&Be) – a campaign which is an education programme helping to teach 16-18 year olds about the importance of donating bone marrow, blood and organs. The campaign was first supported by, and now run by Anthony Nolan, as well as NHSBT.

​I first came across Keith and Kay when I was approached by representatives of Anthony Nolan and asked if I wished to become a volunteer for R&Be. I didn't hesitate at all. For myself, it represented a great way of reaching out to young pupils in schools and colleges and sharing my own experience along with Adrian's vision to help educate and inform others. I was one of the first volunteers to join the campaign and, for a while, I was used as the face of some advertising material to promote the campaign. I was honoured to be helping share the vision of such an inspirational person such as Adrian and I quickly found that it was also a cathartic experience for myself. 

​The presentations were aimed at encouraging the young pupils to join the blood, organ and bone marrow register. Through explaining the process of what donating blood and bone marrow entails, people can have an firm understanding of what is involved in helping save people's lives with a view of doing so themselves  This really hit home with pupils I visited in schools and colleges across the multicultural cities such as Birmingham and Bristol. I remember being joined on one of my presentations by a mother who had not long lost her son in a car accident, perhaps twelve to eighteen months previous. Her family had decided to donate their son's organs and had been told that in doing so their son had saved over ten people's lives. Quite incredible. ​

Since my involvement in the early days of R&Be, the campaign has gained more and more interest and support – most notably from Ed Balls, who was the Secretary of State for Children, Schools and Familes at the time, who had previously met and supported Adrian. Ed visited a presentation that Keith was delivering in Barnsley at which I was present. I had an opportunity to speak with the Labour MP about how important the R&Be volunteers felt it was that the government back the campaign. The presentation in Barnsley was a success and resulted in Keith, Kay, myself and an army of volunteers being invited to a parliamentary reception at the House of Lords in Westminster, where we had the opportunity to inform lots of MPs about the importance of supporting the campaign.

In the past few years R&Be has developed quite incredibly. The campaign is now fully nationwide, has seven regional managers, and teams of trained volunteer presenters – all of whom visit schools and colleges and give awareness to 16-18 year olds about the importance of donating blood, bone marrow and organs. Keith Sudbury explains, "We bust the myths surrounding donation." He continues, "Both Anthony Nolan and NHSBT are delighted with our success". Furthermore, R&Be has placed 12,700 people on the Anthony Nolan register, has produced 11,500 new blood donors and added 5,200 people onto the organ register. R&Be is making a huge difference and saving lives. The true "icing on the cake", as Keith describes it, and perhaps the most significant of all the statistics surrounding R&Be is that since the inception of the campaign 44 students have been matched, donated and potentially saved lives. Keith quite rightly calls it "an outstanding achievement".
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As a somewhat sensible 32 year old, the highlights of my Christmas period are no longer centred around how drunk me and my close friends get on Christmas Eve (although that is still quite nice), but more so around realising the true value of spending quality time with my family and loved ones. On Christmas Eve, I was lucky enough to spend some time with some people  who were very much like family to me when I was battling leukaemia nine years ago.

It had been a few years since I had last visited Worcestershire Royal Hospital. I remember on my previous visit, which I also made at christmas time to drop off some chocolates for the fantastic staff on laurel 3 - the hospital’s haematology ward, I felt a tad strange as I didn’t recognise any of the staff and neither did they me. I remember feeling like I an inconvenience and perhaps was in the way. After all, the ward is extremely busy with doctors, consultants, nurses and healthcare specialists all working tirelessly to help the patients battling blood cancer who are occupying the private rooms.

I felt compelled to take some time to head back to Laurel 3 this year. I was aware that, once again, I may not see anyone I knew as it had been nine years since I was treated there. But that wouldn’t matter. I had planned to say a quick hello to whoever was on the main station desk on the ward and leave some biscuits I’d brought for the staff as way of a small gift, regardless if they remembered me or not. I wanted to “do my bit” and remind myself of where I was nearly a decade ago and in a strange way almost pay my respects and remind myself of how lucky I am to have been on the receiving end of such great care before I embarked on my bone marrow transplant.

I felt slightly anxious in the approach to the ward. Suddenly that familiar hospital smell overcame me, as well as the anti bacterial achohol gel from the dispenser on the side of the entrance. I took a slow walk to the entrance, taking in the medical posters on the wall, the Macmillan information support centre as well as the kitchen area where the christmas eve lunch was being prepared. Suddenly, it was like no time had passed since I was here as a patient.

I had barely strolled past the first couple of rooms when I saw a familiar face. It was Kim, one of the nurses who seemed to be taken-a-back for a moment before saying ”now there’s a familiar face, Jonjo!”. I immediately felt at ease, gave her a hug and said hello. Before I knew it, one of my healthcare nurses Tracy was strolling up the ward and Kim said “Look who it is” and, again, we hugged and caught up. I actually feel quite humbled and a tad emotional inside. I was stood opposite the room I had spent months and months in isolation  being looked after by these great people. I could see “my room”, Room 4 and really got taken back to how I felt when I was in isolation here nine years ago that very day. I noticed some things that had changed; the white board which previously had all patients names, status and requirements written in pen had now been replaced by a swanky computerised monitor. However, what clearly hadn’t changed was the passion, care and attention that these nurses and other staff constantly provide for those in need.

Myself, Kim and Tracy spent a good while chatting about stories and memories from my time in hospital. I was amazed at just how much they remembered. The level of detail and information they could relay from nearly ten years ago really surprised and, indeed, impressed me greatly. We had a giggle, a good laugh and also spoke seriously about things. During our chat along came Tuney, a nurse who I have always had a particular fondness for, yet hadn’t seen since 2007 when I was entertaining her with my version of “Wonderwall” as I was teaching myself guitar. Tuney would often stay well after her shift had finished at times to console me in the days when I was really struggling. I always felt she had such compassion and a fantastic bedside manner and had such a great way at listening to me when I needed to vent my frustrations at being in the situation I was, as well as happily sharing stories about her own life when I requested.

​Coincidentally, earlier that morning, Tuney had crossed my mind, but since I had been back a few times since I was admitted in 2007 and hadn’t seen her, I didn’t for one moment think she would still be there. But here she was. And after taking a second to recognise who she was, Tuney came over to me and again we hugged (not bad, three hugs from three nurses in 10 minutes). It was so good to spend quality time chatting to these incredible people. In the passing minutes, more stories were shared and along came Dr. Kin, an incredibly excellent Burmese doctor who recalled so much about my time on Laurel 3; from the difficulty she had in drilling through my hip bone to extract some bone marrow shortly after I was diagnosed, to intricate details of my chemotheraphy treatment right through to current work for Bpositive. Again, I was so surprised by just how much they all remembered. I guess this is testament to just how much they care for their patients. 
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Those 45minutes or so that I spent back on Laurel 3 in Worcester really touched me and were the highlight of my christmas. I was perhaps touched more so than I had expected. After saying my goodbyes to the staff and leaving them to get back to their day jobs, I found myself sat in my car, parked opposite the side of the building where my room was. I could see the window where I used to spend hours staring out at the “real word”, waving to the people passing by, jealous of their freedom and envious of those being able to carry on with their normal lives whilst I was battling blood cancer. It was a poignant moment for me for sure and one I was quite moved by. 

For the appreciation I felt upon handing over a box of chocolate biscuits to the nurses, nothing can truly come close to rewarding Dr.Kin, Tracy, Kim, Tuney and all staff at Worcester Royal for all they did for me nine years ago. I was deeply proud to have visited the ward and to have been talked of as a “success” story. A success that those nurses would hopefully tell patients currently housed in the isolation rooms, with a view of instilling some hope, belief and inspiration for them during their journey through treatment.

​JR

Six months ago Matthew Moon, 26, had the shock news that he had leukaemia. Since then, he has endured highly intensive chemotherapy, had invasive tests and is now awaiting a bone marrow transplant. Here, Matthew shares his story of the past six months with Bpositive and explains how others can help make a difference to those facing blood cancer...

“I’m afraid there is a problem with your bone marrow... we’re 99% certain you have leukaemia”.

​These aren’t the words you expect to hear when you’ve come home for the August bank holiday weekend. Within the space of 24 hours, I’d gone from drinking beer with my mates in the pub to a hospital bed that I wouldn’t end up leaving for five weeks. During which time I would be pumped full of drugs and educated in the world of haematology. 

After a painful bone marrow biopsy (basically a large needle drilled into your hip bone), it was confirmed that I had Acute Lymphoblastic Leukaemia. The doctors immediately started me on a mixture of steroids and said I'd need chemotherapy as soon as possible to get things under control. 

After this initial induction period, it is expected that most patients go into remission. For me, the induction phase only cleared around 90% of my leukaemia and I was told I would need to have two more rounds of a much stronger (and harsher) chemotherapy, followed up by a stem cell transplant, providing they could find me a donor. I didn't take the news well. My heart sank. 

Thankfully, I’m now in a much better place. I’ve come through the two rounds of strong chemo, overcome two infections (caused by the chemo essentially killing off my immune system) and I’m in remission. The best news is that I have a donor lined up for a stem cell transplant which will give me the best chance of a cure. As one fellow transplant recipient said "I’ve done the coursework and now it’s time for the exam!"

The learning curve of my blood cancer education was, without doubt, a steep one. Prior to my diagnosis, I had very little knowledge of leukaemia, haematology, different blood types and even what stem cells were. I had no idea how reliant blood cancer patients are on blood transfusions due to chemotherapy essentially being a crude treatment – not only does it kill off the leukaemia cells, it also kills off your body's healthy blood cells. I’ve lost count of the number of transfusions I’ve had over the last four months but I am now more aware than ever that without the selfless donations from people, the treatment I’ve had would be almost impossible.
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​There are registers around the world which keep track of these HLA types, usually maintained by charities, such as Anthony Nolan in the UK. These charities are constantly looking for new donors to add to the register to give people the best chance of finding a match. Again, this was something I was unaware of before my diagnosis. If I was in the position to join the register I would do so in an instant, as you have the chance to save someone’s life. 

So, to everyone out there thinking of a new years resolution, I urge you to give blood. If you are aged between 16 and 30, please join the bone marrow register too via the Anthony Nolan website, all you have to do is spit in a test tube. If you are aged 50 and under, you can join the British Bone Marrow registry, details of which can be found on their website. You may never be asked to donate, but you’re helping to expand the possibilities for people like me who are suffering from blood cancer.

Finally I would like to say a big thank you to everyone who has supported me on my journey so far. When you’re going through these tough times you realise how important family and friends are and how much you love them. I would also like to say thank you to all of the doctors and nurses who have cared for me. The NHS should be considered a sacred resource and must be protected so that everyone can receive the world class care and treatment that I have had the privilege to receive.

Happy New Year! :)
Matthew