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 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
“I tried to stay strong and positive, but I did have the occasional wobble” – Anna’s experience of being treated for AML ...
Anna Howell was 52 when she received a bolt out of the blue – she was diagnosed with Acute Myeloid Leukaemia following an, otherwise good, routine check-up. A year and a half on from that day, and following a successful transplant, she reveals how she’s now taking life by the horns and carrying on regardless.
I hadn’t been feeling good for a couple of weeks, but I had no idea how seriously ill I was. I was 52 so had attended my annual over-50 check-up which was, it seemed, all good. I did, however, think I should tell the nurse that I had unexplained bruises, a sore mouth and that I was generally under the weather. Thankfully, she referred me to the doctor the same day. I was sent for further blood tests, after which I went home not, as it turns out, unduly worried.
The next morning, 12th April, 2016, I received a call from my GP who informed me that my platelets were low (23). I asked what that meant and much to my shock he told me that I had leukaemia. The fact that St George’s hospital in Tooting, London, near where I live, had a bed waiting for me was my first clear indication of just how bad things were. I remember a sense of disbelief coupled with a strange calmness as I called my husband, Richard, and a good friend, who hastily packed me an overnight bag. I even told the poor unsuspecting builders who had just started major renovations on our kitchen of my diagnosis. Waiting in A&E, I remember thinking about my children and how were we going to break the news to them, and the fact that I might not live to see Richard and my 25th wedding anniversary. Within an hour I was in a private room on the haematology ward surrounded by staff asking a constant stream of questions; did I have siblings was one of the. Sadly, neither of my brothers were a match
I remember thinking about my children and how were we going to break the news to them, and the fact that I might not live to see Richard and my 25th wedding anniversary
It was at this point I was told I had Acute Myeloid Leukaemia (AML). A Macmillan nurse explained that their aim was to cure me but still that night I prayed and cried myself to sleep thinking about my children and my husband. It was the first of the four hourly observations day and night, which I had over a six month period with only the occasional respite at home – neutrophils permitting of course. Going home was lovely but when I did get home I felt very scared and vulnerable. It’s incredible how reliant on the hospital and nurses you become.
The following morning it was full steam ahead. Nurses began poking and prodding me with needles to fit the PIC line and take a bone marrow biopsy. Usually the sight of needles or blood would make me pass out but I got used to very quickly as I didn’t have a choice. Two days after diagnosis I began my first round of a gruelling regime of chemotherapy (I had four in total). I managed to take a semblance of control back when I made the decision have my hair cut early on. It made the loss of losing if far more manageable. Most other decisions were taken out of my hands and put into those of the specialists. That’s when I decided I would be the perfect patient – I spent my days thinking, reading, watching programmes on my iPad, chatting and laughing with my family, visitors and the staff, many of whom were truly amazing.
I felt very scared and vulnerable. It’s incredible how reliant on the hospital and nurses you become
My family and friends kept my spirits up by frequent visits, endless snacks (most of which my husband ate), lovely gifts, text messages and emails. My son returned from his gap year trip to America for ten days, and my daughter who came up and down from Cardiff, was my rock. I will always be indebted to those friends who fed my family, cleaned my house, sorted out my Christmas tree by the time that came around, did my washing, gave their love and support and visited throughout my illness – I couldn’t have done it without them. As time went by I slowly felt strong enough to take on board more information and do some research myself, always trying not to look at survival rates. I tried to stay strong and positive, but I did have the occasional wobble. My consultant recommended counselling and I had a couple of sessions which really helped me process the situation I was in. My friends told me how strong I was but I can honestly say that I didn’t feel strong all of the time. It was just something that I had to go through and keep believing I could beat.
The longer I waited for them to find a donor match, the more anxious I became. The third round of chemo, was very tough; I had liver failure and spent three days in intensive care. When it recovered I returned to the ward about twelve kilos heavier... Kim Kardashian’s bottom had nothing on me! The problem was soon sorted out with medication and a chest drain. During all of this my husband helped me shower and stayed with me for a few nights as I was very worried about what was to come. I then received the fantastic news that a 9/10 donor match had been found through Anthony Nolan (what an amazing and selfless gift). Prior to the transplant I had a long, scary meeting with my consultant who went into great depth about the procedure, the cons, and the prognosis. The tests prior to the transplant threw up another curveball when they revealed I had heart failure. It was devastating news at the time, but manageable with the right medication.
The conditioning chemo before my transplant was adapted to take into account my newly discovered heart condition. The haematology team and the coronary care team worked closely together. The transplant was actually an anti-climax – my family gathered and it was all over in half an hour. I’m now much like the Queen – I have two birthdays, the second being 14th September 2016 (transplant day). Following the transplant I had mucositis, nausea and lost my appetite but, even with all that, it was by no means as bad as I expected. I went home just before my 54th birthday, however, over the next couple of months I succumbed to a number of viruses and was re-admitted. I lost significant weight and couldn’t eat. When I did go home I avoided anyone who was ill and big crowds to limit my exposure to infection. Antibacterial gel and wipes are now permanent fixtures in my house.
The first few months were also plagued with fatigue. It was such a big issue it took so much effort to even have a shower or get dressed. I prayed for each day to end and hoped I would feel better the following morning. Again, my friends rallied around and set up a rota to take me to numerous appointments and get me out of the house for a coffee or a walk. Slowly, but surely I gained back the weight and strength and started to feel better. I finally returned to work in October 2017 (17 months after diagnoses) on a phased return. It’s been a huge milestone for me. I am so grateful to my supportive employers for keeping my job open – it really gave me something to aim for during my treatment.
I would be lying if I said I didn’t worry about the future, but now I say to myself ‘Why worry about something that might not happen? Live for the day’.
I go to hospital every five or six weeks for blood tests – my husband says I don’t breathe until I get the results; as a patient you become obsessed with them. I have accepted that the haematology day unit will always be part of my life. I have even popped into my old wards to visit the staff. I have also had my twelve month immunisations and will have my measles, mumps and rubella vaccine (MMR) in September, both enabling me to get out and about. And that’s exactly what I’m doing. I have been on numerous trips over the past six months – to Dublin, France, Austria, Majorca, Palma and Madeira, making up for lost time. We have also booked to go to South Africa this summer. I am really living life to the full again and enjoying every day that I spend with my family and friends. I have met some fantastic people in hospital due to my illness, many of whom I now share a close bond.
I don’t have the same strength and stamina I used to but I have adjusted to my new ‘normal’ with a few gentle reminders to slow down at times. Yes, I will be on medication for the rest of my life, but I know it is giving me a better quality of life too. I would be lying if I said I didn’t worry about the future, but now I say to myself ‘Why worry about something that might not happen? Live for the day’.
Bpositive Support & Information blog
A mixture of insightful comments, posts and general 'blogging' from various Bpositive contributors