What made you join the Anthony Nolan register?
It was about ten years ago, the mobile blood donor van was in Birmingham at the time and I decided to donate blood of a lunch time.  Whilst doing so, there was a poster on the wall for the Anthony Nolan Trust, I asked the nurse about it and she explained what they did.  I called them up that day and they sent me out an information pack.

What did you have to do to join the register?
Ten years back, the process for joining was very different.  I was sent a test tube to take to the local hospital and give a blood sample, I then posted this back to Anthony Nolan.  The joining process nowadays is much simpler, you can apply for an application pack online and it is simply a saliva swab and application form.

How did you get told that you were a match?
I received a letter in the post informing me that I had been shortlisted as a potential match and that a further blood sample was required,  this was done at the local hospital and posted back to them.  A few weeks later I received another letter and a phone call to let me know I was the closest match and to ask if I would be available in 3 weeks time for the donation process.

How did you feel when told you were a match?
I felt incredibly lucky to be given the chance to help somebody.  Having had a personal experience with leukaemia (my wife being diagnosed with a subtype of AML in 2008), I know full well the pain and difficulties of trying to achieve and maintain remission.  To know that you are somebody’s best change for recovery is quite a humbling experience.

What was the process of donation entail?
The process was all handled by the Anthony Nolan Trust smoothly and efficiently, train tickets and hotel details all arriving in the post in plenty of time.  All I had to do was turn up ! Firstly a date was arranged for a thorough medical examination to be undertaken, this is to make sure you are fit to donate and will not suffer any ill effects, this is followed by a session with a councillor to explain the process and any minor risks as the last thing they want is to start the recipients preparation treatment and have you pull out before donating. For 5 days before the donation I was visited each day at work and given an injection to stimulate stem cell growth.  These are given in the arm and are a painless and quick process. The collection then takes place over a 4-5 hour period, where you have a cannula inserted into each arm, one to take the blood and another to return it to you once the stem cells have been separated.  You are free to eat, drink and watch TV during the process. The medical examination and the donation all take place at a private London clinic.

Was it painful to donate?
Other than general sharp scratch you feel from having a needle, the only other side effect was a minor back ache caused by the stem cell stimulant injections.  This disappears after a few days.

Would you donate again?
Without a doubt yes.  Having donated once, I am now ‘on reserve’ for the same recipient for the next 2 years, should they need another transplant.  After this, I go back on the general list.  I would do it every year if I could !

What advice would you give to anyone thinking of donating?
Just do it.  There really is no downside.  2 nights in a fancy London hotel and all your expenses paid for, you even have time to go watch a show after the donation if you wanted !

Final comments/summary
I cant stress enough how Anthony Nolan made the whole process so simple and easy. I honestly think the donor list should be an ‘opt out’ scheme whereby everyone is on the list unless you choose otherwise.  When you think, you can potentially be somebody best chance of survival, and for what ….. 5 hours of sitting on a bed donating.   There must be so many people out there who could be matched with those requiring donors but they just aren't aware of it.

Lee was found as a match through the Anthony Nolan Trust. If you wish to join the register then find out more  by clicking here.

The city of Liverpool was the chosen destination for the Bpositive UK Adult ALL Patient group meeting. I had taken the megabus up to the North West city a day earlier in order to make the most of my time there. On the Monday I spent my day walking around the city centre and getting a feel for the place - and on a day which was marking the 24th anniversary of the Hillsborough disaster, there was plenty of people about, showing their support for the tragic loss of life. 

On the  morning of the event, I found myself walking along the impressive Albert docks to the Jurys Inn hotel where our meeting would be held. After catching up with some fellow patients and also representatives from Hartley Taylor - it was soon time to start proceedings. In the audience we had a mixture of people connected to acute leukaemia such as; patients (both current and former) as well as relatives of patients and Clinical Nurse Specialists (CNS).

John Reeve, the Bpositive Secretary, began by introducing himself to the audience and explain the plan for the day. Then it was was turn to take to the floor to share my story and experiences. Throughout my talk, I felt the audience engaging and there were plenty of nodding heads - a sign I took that what i was saying was very much familiar to most of those listening. Shortly after my talk,
Nigel Russell, a Professor of Haematology at Nottingham University Hospital gave a very insightful account of the latest developments in stem cell transplants - which was met with a foray of questioning from the audience. It is probably fair to say we all learnt a lot from Nigel.


After lunch I took time to present the company branding of Bpositive. I ran the audience through the workings of our website as well as showing them how we've also reached the social media world through Facebook and Twitter. Again, the response was very positive and it was great to gauge to excitement and support from everyone, in particular the CNS representatives who were very keen to hear more about the Bpositive online community that we have integrated within our website.

The second guest speaker of the day was from Andrew McMillan, a Consultant Haematologist at Nottingham. Andrew delivered a fine talk regarding developments in chemotherapy - that once again really seemed to enlighten the audience, with Andrew being particularly adept at

translating any technical and scientific information into language that everyone in the room could easily understand.

A Q&A followed with our guest CNS representatives from the Royal Liverpool Hospital. Sarah Watmough and Elizabeth Dale handled questions fired at them from the audience - and gave great insight into the work that these fantastic people do on a day to day basis.

The day was wrapped up by John Reeve who informed the group of what our intentions are to push Bpositive forwards. We are in the process now of applying for charity registration which is the next big step for us - and until then we shall continue to spread the word about who we are, what we do and why we're here, hopefully generating more and more interest from supporters, patients, families etc and look forward to the next patient support group meeting later in the year.

JR

Just over a week until we get to roll out the Bpositive brand to some very important people at the UK Adult ALL Patient meeting in Liverpool! 

Still plenty of places available for any patients, friends or families etc that wish to attend! 

See the leaflet (right) from Hartley Taylor for more information or click here to view the event page

By Jonjo Rooney