In this episode we hear from our charity founder Jonjo Rooney who reflects on moments that matter and, in particular, a couple of moments that have stayed with him nearly 12 years on from his leukaemia diagnosis. Jonjo discusses how it felt to finally be told he could go home and how the song that was playing at the time on the hospital radio still resonates with him today.
In this episode we hear from our charity founder Jonjo Rooney who discusses how he felt that making plans and setting goals was a big help for himself throughout his treatment.
In this episode we hear from our charity founder Jonjo Rooney who discusses what is potentially one of the most significant components of a patient's treatment, if required, for treatment from blood cancer; a stem cell transplant. Jonjo shares his own experience of having a stem cell transplant, including what it entails and how he felt during and after this life saving treatment for leukaemia.
Bpositive Bloodstream Episode 05 – Facing up to fertility. Dealing with life-changing situations following a diagnosis
In this episode we hear from our charity founder Jonjo Rooney who discusses one of the many knock-on effects of a cancer diagnosis: infertility. It's something most patients are unaware of and unprepared for, yet many have to face it, as a result of treatment for blood cancer. In the podcast, Jonjo discusses how he felt receiving the news and how, despite some difficulties and humorous interruptions along the way, he managed to deal with the gravity of the situation.
Bpositive Bloodstream Episode 04 – My experience with acute lymphoblastic leukaemia. By Bpositive founder Jonjo Rooney
In this episode we hear from Bpositive founder Jonjo Rooney who shares his experience in facing treatment for acute lymphoblastic leukaemia, after he was diagnosed over a decade ago. This recording was taken from a few weeks ago when Jonjo was asked to share his story to a group of professionals training as haemo-oncology nurses at The Royal Marsden school in London.
Bpositive Bloodstream Episode 03 – The improvements and progression of clinical care for those affected by blood cancer
In this episode we hear from Flora Dangwa, a former Clinical Nurse Specialist from the Royal Free hospital and UCLH. Flora, now enjoying her new role as a Lecturer Practitioner at The Royal Marsden, speaks about how important CNS professionals are to patients during treatment for leukaemia and, indeed, all cancers and how, today, there’s much more focus on supporting patients more holistically and with their mental health and wellbeing in mind throughout their illness.
In this episode we hear from the hugely inspiring Lynda Thomas, CEO of Macmillan Cancer Support. Lynda shares with us the many ways in the charity helps all those affected by cancer. We also discuss what it takes to keep the organisation at the top of its sector, as well as the measures put in place to ensure that Macmillan is there at all times for those affected by cancer.
In this episode we discuss both sides of the coin with a diagnosis. How does a consultant deal with having to tell someone they have leukaemia? What impact does that have on, both, themselves and the patient and what are the best ways to ensure that a diagnosis for blood cancer is handled in the best way possible. Adele Fielding speaks to our founder Jonjo about her experiences in telling people they have blood cancer and how, despite their responsibility to look after patients medically, it is often the emotional needs that need to be considered.
In November last year, Sky Sports presenter Simon Thomas, 44, lost his wife Gemma, 40, just three days after she was diagnosed with Acute Myeloid Leukaemia. Thrown into a world of unknowns, he has had to not only navigate his own grief but also that of their son Ethan, 8, who he is now coming to terms with bringing up alone. During some of his darkest days, Simon bravely shared some very raw feelings and fears through videos and his blog, A Grief Shared. He has kindly allowed us to publish one he wrote back in January during his tenth week of sleep deprivation. In it he talks about finding strength in your own vulnerability and how honest weakness really does takes courage.
When I sent out that tweet the day after Gemma died on 24th November, I did it for nothing more then this simple reason – I just wanted people to know. I didn’t do it for attention, I didn’t do it to make me feel a bit better, and I certainly never expected the reaction it sparked. As I lay weeping on our bed on that grimmest of Saturday afternoons in complete and utter shock at what on earth had just happened, the messages of support started to flood in, and they didn’t stop on that day, they have continued ever since.
I’m no more important than anyone else. My job is no more important than any other, in fact compared to most peoples jobs, mine is of very little importance, yet the last few weeks have at times taken my breath away. I’ve had messages from those that have lost loved ones and those that haven’t. I’ve had messages from those that have lost family and friends to the same devastating Leukaemia that took Gemma, and I’ve had messages from people here in the UK and messages from around the world, even a farmer in the Australian outback! At times its been the messages of encouragement, not just from my close friends, but also from complete strangers that have kept me going and kept me from drowning. The vast majority have been lovely, touching and really helpful, a few haven’t; but the recurring message has been ‘be strong.’
Now before I go any further, I know that the vast majority of people who have said this over the past nine weeks have said it because they care. If they didn’t care, they wouldn’t bother to even write, but I want to explain why being strong is so very very hard and why actually, right now, I am anything but strong.
At times its been the messages of encouragement, not just from my close friends, but also from complete strangers that have kept me going and kept me from drowning
As I write now, it’s just after three thirty in the morning. I’m into the tenth week of severe sleep deprivation. One thirty is the earliest I’ve been up, four thirty feels like a lie in, and some nights I’ve not slept at all. I’ve tried most drugs, but nothing works anymore. I’ve stopped fighting it. I’ve stopped getting angry and come to realise that this is just another grim part of this strange path called grief. My body is weak. My mind is frazzled. I’ve taken peoples advice and tried to exercise, but after five lengths of the pool I’m exhausted (it’s only 25m). Gemma suffered with insomnia for many years, some nights she wouldn’t sleep at all and yet somehow was able to function the next day, but she always said that I was useless when I had nights like that. Most of the time now I do feel useless. Physically I feel the weakest I’ve ever felt, I couldn’t be strong even if I tried. But out of the weakness of my sleep deprived body I have managed to keep my head above the water. I manage to get my boy up each morning and get him ready for school, I manage to keep myself busy and not leave myself too many long periods alone in our house with my thoughts, and I somehow manage to get to the end of each day. I’m not being physically strong, I’m merely surviving at the moment until that day the sleep begins to return and my body starts to grow in strength again.
A wonderful Christian man called Pete Grieg posted this on social media yesterday and I was really struck by it, because in every way it speaks powerfully to me where I’m at now – “When life is tough they tell you to be strong. Don’t be strong. Be weak. Unclench your fists. Dare to vulnerable. Honest weakness takes courage. It affirms our common humanity, deepens friendship and elicits grace.” This is me. This is why I think my story has touched people in a way I never intended or expected, I have dared to be vulnerable, I have dared to admit I feel weak, and particularly for a bloke this isn’t something we do very well, if at all, but for me, I can’t be any other way. Part of the reason I got up in those early hours this morning was because my mind was gripped by fear, those recurring fears of the past few weeks were crashing in. How the hell can I do life without Gemma? How can I ever get used to life without the woman I loved beyond words? How on earth can I survive as a single parent when five minutes ago I was happily married? How can I ever sit in front of a TV camera again with the same confidence that has helped me through my career? What if I never get used to being in our beautiful house without the woman who was the heart and soul of our home? Will I have to move and start again? Will I ever smile properly again? When people ask me how I’m doing, I long for the day I can say with authenticity that I am OK; but right now I can’t say anything other than I’m not OK, I’m really struggling.
When people ask me how I’m doing, I long for the day I can say with authenticity that I am OK; but right now I can’t say anything other than I’m not OK, I’m really struggling.
This is what it feels like when the person you loved so deeply suddenly disappears from your life. This is what it feels like when your hopes, dreams and plans as a family get ripped apart and shredded. This is what vulnerability looks like, and right now I can’t be any other way, and as I’ve now discovered, this is what being strong actually looks like. I’ve been a Christian all my life and in a book in the Bible called 2 Corinthians it says this – “My grace is enough; it’s all you need. My strength comes into its own in your weakness.” Tough though it might be to admit (some ignorant people might even call me a snowflake) but it is out of the weakness I feel now will come the strength to start a new life, to redraw and replan those hopes and dreams for the future with my boy.
Like Pete Grieg says, honest weakness takes courage and in doing that it affirms our common humanity. One day I will rise again from the ashes of these painful past few weeks, but for now this is me. Broken, fearful, weak, vulnerable and tear filled and if by admitting this it helps one person, then it’s worth it.
God bless you this week and don’t stay strong, be you.
Special thank you to Simon Thomas for very kindly allowing us to re-publish this article taken from his blog A Grief Shared.
How Adrian’s legacy has led to a national campaign encouraging young people to register and be a lifesaver
In November 2006, Keith and Kay Sudbury’s world fell apart when their beloved son Adrian, then 25, was diagnosed with two types of leukaemia simultaneously. So rare was his diagnosis, he was thought to be the only person with the condition. After a stem cell transplant, one of Adrian’s leukaemia's returned and he sadly passed away in August 2008. After his diagnosis, it was his wish to create a campaign that would target 16-18 year olds in schools and colleges around the country and inform them about why and how to join the blood, stem cell and organ registers. It’s now nine years since his parents Kay and Keith co-founded Register & Be Lifesaver. They share with us its phenomenal success, their new charity and why it was important for them to carry it all on in Adrian’s memory.
Our world fell apart in November 2006 when our wonderful son Adrian Sudbury, a 25 year old journalist from Sheffield, was diagnosed with leukaemia. He had just begun an exciting new role as on the digital team at the Huddersfield Examiner.
In actual fact Adrian had two forms of leukaemia, Acute Myeloid (AML) and Chronic Myeloid (CML), a second type being really aggressive and complicated. Adrian’s only chance of survival was a stem cell transplant. He was lucky as to find a match from a 30-year-old German woman. Initially it was successful but then, unfortunately, the second and more aggressive type of leukaemia came back. Adrian died a year later in August 2008.
When Adrian was given his terminal diagnosis, he was determined to do two things. Firstly, he wanted to go out in, what he called ‘a blaze of glory’. And, boy, did he do this. He came home for his final few months and for a number of weeks we all partied big time and friends and family came to say goodbye to him. We ate lots and we certainly drank far too much. There was a lot of happiness in amongst the tears and the sadness. But, secondly, and more importantly, Adrian had a wish for every 16 to 18-year-old in the country to be made aware of blood, stem cell and organ donation. He wanted to bust many of the myths surrounding such donations and encourage people to join the register.
During his illness Adrian also wrote a successful blog called ‘Baldy’s Blog’, which won national and international awards. He also had a very high profile media campaign called ‘Sign Up For Sudders’. During a six week period in which Adrian was very ill, he managed to visit 10 Downing Street and spent 45-minutes with the Prime Minister, Gordon Brown, who, along with Ed Balls, the Secretary for State for Education at the time, was so supportive of his goals. The government provided money for Register & Be a Lifesaver (R&Be), the organisation we created after Adrian’s death. Nine years on and R&Be has grown beyond all our dreams, with trained volunteer presenters going into schools and colleges to give inspirational talks and awareness raising presentations on how 16-18 year olds can become donors.
For a number of years R&Be worked in-house with Anthony Nolan. More recently, we have become so successful that we have now formed our own independent charity called ASSET – the Adrian Sudbury Schools Education Trust. We work in partnership with NHS Blood and Transplant and recruit for Anthony Nolan, either by directing students to join online or at recruitment events held at schools.
What R&Be does best, and what was Adrian’s wish, is maintain simplicity. Our trained presenters provide sixth form students with the facts the need about blood, stem cell and organ donation to make informed choices. We stress to everyone that it is absolutely fine to say no, but do so knowing the facts. Each presentation lasts around 45-minutes. The message is very powerful and students become very engaged and more often than not want to do something at the end of it. Many have gone on to join the Anthony Nolan stem cell register or enrolled to become blood donors or joined the organ register, nearly all so amazed to learn how easy it is to do so.
Adrian had a wish for every 16 to 18-year-old in the country to be made aware of blood, stem cell and organ donation and to encourage people to join the register
Another success of the R&Be campaign is returning to schools and colleges several days after a presentation with the swab kits to recruit new people to the stem cell register. We always stress the important of the commitment needed to register as we would not want anyone to join and back out later if found to be a match. We always build in a period of time for reflection and encourage students to speak with parents before they make any decisions. In some of these schools and colleges, R&Be is returning for the 9th successive year. You could say we have almost become part of the school culture.
There are some sensitive areas to the presentation and so we always ask that schools notify students or staff who may have suffered a bereavement or been touched by cancer and to give them the option not to attend. All of our presenters repeat this health warning at the start of each visit and give students the option to leave at any time.
Nine years on and R&Be has grown beyond all our dreams, with trained volunteer presenters going into schools and colleges to give inspirational talks and awareness raising presentations on how 16-18 year olds can become donors
For those interested in the work we do, R&Be has a number of fundamental core Principles;
ASSET is a new charity and like most charities need to find money either through grants or donations. We are always looking for new volunteer presenters so please get in touch to find out more. Next year is the 10-year anniversary for R&Be. We are very proud of what we have achieved and hope to be able to continue our life-saving work into the future for both Adrian, and those in need.
If you are a school, collage, organisation or individual wishing to contact ASSET or know more about R&Be, please email firstname.lastname@example.org
Bpositive Support & Information blog
A mixture of insightful comments, posts and general 'blogging' from various Bpositive contributors