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 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’.
When I was diagnosed with Acute Lymphoblastic Leukaemia in December 2006, the shock and fear were palpitating. Eleven years and one stem-cell transplant later, I'm back to living life the way I prayed I'd be able to when I was in hospital. It's by no means been an easy journey but it is possible. Here's my story ...
It's at this time of year I always take a few moments out of all the last-minute Christmas and New Year’s Eve preparations to reflect on another year passing; it’s eleven years since my world was turned upside down when I was diagnosed with Acute Lymphoblastic Leukaemia in December 2006. You may remember in our bulletin last year I shared my diagnosis story, with you. This year I wanted to share how I feel being so far on from that day and the impact it’s has on my life since.
At times it all feels like it was only yesterday. I still remember the feeling I had when I turned up at Redditch Alexandra Hospital. I’d been at the Villa game (we lost, naturally) and despite having excruciating back pain, shortness of breath, blood spots and bruising, I didn’t think for a second there would be anything seriously wrong. Yet, just a few hours later, I found myself having been transferred to Worcester Royal Hospital and suddenly holed up in an isolation room undergoing chemotherapy. The days turned into months and I’d often sit by my small hospital window waving at strangers passing by; it felt like my only interaction with the outside world. Seven months later I was transferred to Birmingham Queen Elizabeth hospital to undergo my stem cell transplant. It was here I would, at times, float in and out of consciousness whilst consuming large doses of opium to soothe the searing pain in my throat and encounter some of my darkest days.
I’d often sit by my small hospital window waving at strangers passing by; it felt like my only interaction with the outside world
Yet, despite these vivid memories, two years of treatment including highly intensive chemotherapy, and a life saving transplant, I really don't feel a great deal different to how I did back then. I’ve always tried to live my life to the full and relish new opportunities and, thankfully, I still continue to do so. I like to think I’ve grown up from the care-free 23-year-old I was before my diagnosis but I’m still very much the outgoing, fun-loving, happy person I’ve always been. That’s not to say there haven’t been some noticeable changes. My illness and treatment as a whole has left me with a shorter temper and a higher level of impatience with things. I attribute this to my initial poor prognosis and the need for immediate treatment, taking away my chance to perhaps process things properly and take in the enormity and severity of the situation I was facing. There was some fantastic help available at the time and I spoke to both a counsellor and psychotherapist, both of which helped enormously. But, in the aftermath, I suppressed a lot of how I felt and at times I still feel the effects of that today. Since full body radiotherapy I’ve noticed my attention wanes more easily, my ability for mental arithmetic has reduced significantly, and my general understanding of situations or simple working out of things takes me longer to process, all of which can frustrate me greatly. I was told by my consultant in Birmingham that these things could happen as a result of treatment but I hoped, and expected, it would be temporary rather than permanent.
I really don't feel a great deal different to how I did back then. I’ve always tried to live my life to the full and relish new opportunities and, thankfully, I still continue to do so
With any diagnosis, it’s not just changes within yourself that you notice. People around you often feel the effects just as much, albeit in different ways. Close friends and family often worry about you more than you do yourself and want to treat you with kid gloves; any sign of an ache or pain and they are the ones encouraging you to go to the doctors as a precaution. And the emotional scars can last a lot longer than any physical ones. Those closest to you never forget where they were when they heard the news and how they felt receiving it. I was reminded of this last year when many of my friends and family made me an anniversary video of how far I’ve come and how my journey still resonates with them to this day. In truth they have all been my saving grace over the last decade. They all stepped up when I desperately needed their support and they haven’t changed at all in how they treat me; I’ve always been Jonjo to them and never Jonjo who had cancer.
A chat with my mom a short while ago really struck a chord too. She said that I'm still very much the same person and that all the aspirations I had in my early twenties remained once I was on the road to recovery. Ambitions such as wanting to travel the world, experience other cultures, meet new people, live and work in London, learn to play the guitar, and buy my own house were and are still as important to me. I made sure when I was given clearance by my team of consultants that I took myself off on the round-the-world trip I’d longed for and I have now been in London now for the past seven years, currently living in the flat I now own. I am still as excited by life and all it has to offer and my illness certainly doesn’t hold me back in any way.
The biggest question I get asked is if I ever worry about my cancer coming back. In truth I can honestly say I don't. I am lucky enough to have had my life saved by an incredible man called Andreas who signed up to be a donor when he was in school in Hamelin, Germany. I often joke that I’m in a better place than most as I’ve been rebuilt by a German. He was my closest match for my stem cell transplant and my body, thankfully, accepted his bone marrow. I feel it would be unfair of me to have spent the past decade worrying about a relapse after being so lucky to survive the initial diagnosis and then the transplant, so I choose to focus on where I am rather than where I could be. In the early days it definitely crossed my mind but as the years have passed it’s been much easier to let go of those worries and thoughts. I’ve never wanted to allow my illness to define me so my choice has to be to look at it as if it were any ailment that has now passed. Many people I know have not been as fortunate as I have so I feel it is as much a testament to them as it is myself that I try to live with no fear and a positive mindset.
My family and friends all stepped up when I desperately needed their support and they haven’t changed at all in how they treat me; I’ve always been Jonjo to them and never Jonjo who had cancer.
And, of course, I am forever indebted to the NHS. I still have annual check-ups and a blood test back in Birmingham to ensure my counts are all presenting as normal. I decided early on to continue going back home for these yearly visits rather than bring them to London as I like to go and see my consultant, the person who has helped me so much throughout the past eleven years. It’s always a sobering reminder of what an incredible job these doctors and nurses did for me and I hope that my visits remind them of the great work they do too.
The biggest change to my life over the past even years has been setting up and running Bpositive. When I was laid up on my hospital bed on the East 3a bone marrow transplant ward in Birmingham undergoing daily treatment I prayed to God that I would get through it all and be able to continue with my life. When it’s compromised you just want to do anything you can to eradicate that fear and worry of dying and get yourself back to your own normality. I promised myself that if I made it out the other side I was going try to help others who were affected too. There were often times I was without anyone of a similar age or with a similar diagnosis to talk to. I kept a diary and signed off everyday with my blood group and special mantra – Bpositive. And now, that ambition and promise has become a reality. We’ve been registered for nearly five years and through the work that Bpositive does I am often in consultation with people affected, like I was, by acute leukaemia. It’s the greatest privilege to be here now talking to others and helping them through their own journey. Without my own experience I wouldn’t be able to do this. I’m a great believer that life brings you challenges for a reason and mine has taught me the value of what I have and brought me closer to what I love most in the world – interacting with people.
It’s the greatest privilege to be here now talking to others and helping them through their own journey. Without my own experience I wouldn’t be able to do this.
Everyone who encounters leukaemia will have a different experience to mine but I hope that by continuing to share my own story and other peoples' through our monthly bulletin that it will help many people who are facing similar difficulties to those I did eleven years ago. To know that the things I dreamt of from a hospital bed are happening fulfills me with such personal triumph and happiness. It really is the driving force behind my thirst for life.
For anyone facing their own challenges in the coming year, don’t lose sight of your own hopes and dreams and try to always Bpositive.
“Sport has been a saviour for me and my boys” Helen shares how she has coped with the loss of her husband ...
When Helen Hill’s husband Matt, 44, passed away in September 2012 from Acute Lymphoblastic leukaemia, she wasn’t sure how she would cope without him or how she would bring up their two boys alone. On the fifth anniversary of his death, she decided to write down how she has managed her grief over the last five years. She hopes that by sharing her story, she will be able to help anyone else facing a similar loss. She speaks with such love, courage and strength for what she has been through, as well as great honesty and hope for the future.
Every time I switch on the computer my husband Matt’s smiley face stares back at me. Little did I know when I took that photo that he wouldn’t be with us much longer. It’s now the fifth anniversary of his death and I thought it appropriate, for myself and others, to put some of my thoughts down about how myself and my two lovely (most of the time!) teenage boys, Jack, 14, and Luke, 16, have coped with our devastating loss.
In September 2011, Matt, then age 43, went to the doctors complaining of flu like symptoms he couldn’t shake off. After numerous tests he was rushed to the Royal Free Hospital in London with a diagnosis of Acute Lymphoblastic Leukaemia (ALL). The thirteen months that followed involved long stays in hospital for Matt, and a succession of visits for myself, and our two boys, then just 8 and 10. It was hard for them to accept or understand why their dad was ill with cancer but they took it all in their stride and together we were always hopeful he would recover. Sadly, that was not the case and Matt passed away on Tuesday, 20th November, 2012.
It was hard for my boys to accept or understand why their dad was ill with cancer but they took it all in their stride and together we were always hopeful he would recover
We live in St Margaret’s Bay, a beautiful village nestled between the iconic White Cliffs of Dover. When Matt and I first discovered it we fell in love with it instantly. It was our oasis and, for Matt, an escape from city life. And I have been lucky to be surrounded by close family and friends who have, in the aftermath, been here to support us, acting as role models to the boys, and giving invaluable help and advice when needed.
Sport has especially been a saviour for us. We have always been what you call a ‘sporty’ family. In fact Matt and I first met in Cornwall when we were both on a windsurfing holiday, and we have instilled in our two boys a love of the water and the great outdoors. It was especially important to Matt that we all continued with our adventures and I hope that I have lived up to his expectations.
Being on my own hasn’t always been easy. The hardest thing is not having somebody to share your dreams with
At 52, I have certainly got fitter with age as I no longer have any excuse not to do something. Shortly after Matt’s death my youngest son Jack, then 9, wanted to try road biking. We were lucky that there was a very good local club so we turned up and he gave it a go. He was hooked. We took our first challenge together, participating in the Great Notts bike ride with my brother-in-law, completing a distance of 50 miles. We all trained hard and it wasn’t long before both the boys were racing ahead and commenting that their uncle was a bit slow! We then went to Newport velodrome with the cycling club to have a go at track cycling. I hadn’t done it before and the idea of having no brakes, fixed gears, and pedals that if you stop pedalling you fall off, filled me with fear. In fact, it turned out to be an amazing experience – I felt like Victoria Pendleton. The boys also had a go on the Olympic velodrome – a crowd of onlookers were watching and as Jack completed his lap they erupted into a wonderful spontaneous applause. It was probably because they hadn’t seen a small person on the track with such skinny legs. They aren’t much bigger now but the power behind them is quite incredible.
Cycling has kept us all going and we have completed many challenges for ourselves and charity. I have taken on the London Ride 100, and cycled from London to Paris with Bloodwise helping to raise over £20,000. The boys have completed 130 miles in one day too. It’s Jack’s dream to become a professional cyclist so I am hoping it becomes a reality. Our motto is dream big, work hard.
Being on my own hasn’t always been easy. The hardest thing is not having somebody to share your dreams with or discuss the important things, like the boys, with. Matt and I always had a close and easy-going relationship. He was my best friend as well as my husband.
On the other hand, I may not have tried some of the things that I have done had this not happened. Losing someone you love makes you realise that you really have to live for the moment. We got a dog called Jet, which we probably wouldn’t have done before. He really is the best thing that has happened to us since Matt died and I would recommend it to anybody as therapy and help coping with loss. When he arrived it was like having a new born baby in the house but without the nappies. It was quite difficult training him to go to the toilet outside but lucky for us we have a tiled floor. I was beginning to wonder what we had let ourselves in for but we persevered and we now have the most adorable friend, always pleased to see us with his wagging tail and always happy to be cuddled and made a fuss of.
If I’ve learnt anything from this situation, it’s that life does go on and it is important to be strong. You just have to find new ways of drawing on that inner strength and, as you might say, B Positive!
I know that complications or a relapse are possible but I’ve decided that living and not worrying are my “new normal” ... Louise's story
When Louise Coventry, 56, from Sydney, Australia, was diagnosed with Myelodysplastic Syndrome in April 2016, she was shocked as she hadn't felt unwell. Over the next 18 months she underwent two bone marrow transplants, numerous blood transfusions and a stay in intensive care. She's now six months into her second recovery, making plans for the future with her husband Brett, and choosing not to worry about anything in her 'new normal'.
A cancer diagnosis can come out of nowhere. Within seconds your future hopes and plans are fractured. Is this really happening? is a common thought. During mine, I felt a numbness take over me. It was impossible to absorb the reality or severity of what I was being told.
My bombshell came on a Friday in April 2016, I’d gone to the doctors for a routine blood test to eliminate the idea of something very minor and totally unrelated. By 10am the following morning I was sitting in a bed in the emergency department being told very little. Frighteningly, the doctor's non-committal comments seemed to indicate something serious. I sat hoping for a mistake at the lab but my additional blood tests didn’t seem to be confirming there had been one. I was admitted that day, still with no real information, and still feeling positive there had to be some kind of mistake. After all, I felt so well and healthy. Two weekends before I’d spent two hours kayaking, and a month earlier I’d ridden in a charity bike ride. But in hindsight there probably had been a few minor indicators. I’d experienced tiredness, sweating, easy bruising, and some bleeding gums, all symptoms that are very easy to ignore.
At 55-years-old, it was my first ever night in hospital. I was restless and barely slept. In the morning the doctors visited and revealed more information. It was the first time anyone had actually spoken about the potential seriousness of my condition. They then scheduled a bone marrow biopsy. At this stage I was more terrified of the procedure than actually finding something wrong. ‘I'm so healthy, this can't be right’, I kept telling myself. I hung onto that denial for quite a while!
A cancer diagnosis can come out of nowhere. Within seconds your future hopes and plans are fractured.
The results of the biopsy triggered an immediate response from the doctors and within days my husband, Brett, and I were hearing the words acute Myelodysplastic Syndrome (MDS). The words ‘serious’ ‘life-threatening’, ‘immediate treatment’ and ‘stem cell transplant’ were ringing in our ears. Brett was devastated and I remember feeling completely numb. Until now we had held off telling my parents (who were aged 78 and 88) hoping to spare them the devastation.
After many blood tests I finally conceded that this was not a lab error and I began to share my diagnosis with family and friends. I knew I would need their love and support to get me through. I was fortunate to be surrounded by the most beautiful, caring and positive people. Every text, email, phone call and visit truly helped when I was struggling to come to terms with my diagnosis. Throughout my treatment, my friends rallied round and supported me in so many loving ways.
The search for a compatible bone marrow donor began immediately, firstly with my brother and sister and then onto the world register. Although we were not a 100% match, it was eventually decided that my sister would be my donor. My beautiful, generous and special sister. My brother was off the hook as he wasn't a close enough match.
I then began three months of a mild chemotherapy to prevent my MDS escalating to Acute Myeloid Leukemia (AML). The chemo was never going to eliminate the need for a stem cell transplant, rather just keep it from progressing further. In September I started the conditioning treatment as an inpatient. Everything I'd ever heard about stem cell transplants terrified me. I heard a lot of ’it's really tough’ but no one seemed to ever be able to answer what this ‘really tough’ looked like as it’s so dependent on how your body responds to the chemo, the radiation, and the transplant. I felt so unprepared, I literally had no idea on what to expect. It was the first time the inner strength of which I've always been quietly proud of deserted me.
I felt so unprepared, I literally had no idea of what to expect. It was the first time the inner strength of which I've always been quietly proud of deserted me.
Then, in following weeks, I started to take ownership of the obvious. No one could do this apart from me. I knew it was time to step up. Reaching this milestone gave me a peace I can't explain. I knew that there were risks but I also trusted I was in good hands with the very best practitioners, My inner strength flooded back. I thought to myself ‘I can do this. Others before me have and so can I. Of course I'll be in the positive percent of survivors. Why shouldn't I?’ My sense of self came back.
This belief never really deserted me, although, at difficult times it did get a little swamped and I needed to dig deeper. Brett gave me a framed quote which sat in my hospital room. It said ‘I may not be there yet, but I'm closer than I was yesterday’. Reading that on hard days helped me to reflect on just how much I had already achieved. It helped me to remember the positives of our situation and that tomorrow was always a new day bringing me closer to recovery and our before cancer life. I so wanted to be well again. I wanted to spend many more years loving this gorgeous man.
Over the first few days, I had all the pre-transplant procedures including a central venous catheter inserted (to administer my medication), plasma exchange, nasal tube and chemo. Thankfully, it all went as expected. On the day of transplant my beautiful sister, Cath, went under general anaesthtic and had her stem cells removed from her marrow in readiness of my transplant later in the day. Again, there were no real problems. Cath and my family were with me and we all held hands and smiled during the transplant. I felt so fortunate to have it. The following days were tough as my white cells and neutrophils were very low and I waited for my gifted cells to graft.
I was so fatigued and experienced intense diarrhoea and nausea. My hair fell out. Eating became near impossible and each feeble attempt resulted in vomiting. As a result, I lost a lot of weight. After a week I had to rely on the feeding tube and had to really concentrate on keeping my oral medication down. I had an extremely sore back due to lying in a hospital bed for so long. I couldn’t sit comfortably or sleep. The doctors had to prescribe morphine, endone and fentanyl but nothing seemed to help so I spent the nights walking the ward with my trusty IV trolley just to relieve the pressure. The nurses joked that I would end up wearing the lino out. I also had horrible nightmares (even when I was awake) so they took me off the fentanyl. It's one scary drug! Thankfully the nightmares stopped.
My inner strength flooded back. I thought to myself ‘I can do this'. My sense of self came back.
In the days following, despite needing many blood transfusions, fluids and other medications, I gradually begin to feel much better. My cells counts started to rise and all the side effects greatly reduced. I only had one fever and infection which I recovered from quickly. After a month my professor said I could go home. I'm was so happy I couldn’t get the smile off my face. To have my own bed in my own home felt incredible. My back returned to normal and I could continue my recovery at home. It felt like the worst was behind us.
Over the next few months things were good. We started to plan our life again, caught up with friends, talked about taking an overseas trips, returning to work and rebuilding my fitness. All the things I took for granted eight months earlier. Unfortunately, at the four month mark the doctors discovered that my DNA was 100% mine – in a successful transplant the recipient (me) changes DNA and blood group to that of the donor (Cath). There was no evidence of Cath's DNA in my bone marrow. The transplant had failed.
We were devastated and trying to process what it meant when the professor explained that I would need another transplant! The numbness I felt at the first diagnosis returned, although we recovered more quickly the second time. We were getting good at bouncing back deciding there was nothing else for it other than to step up again.
As difficult as the second transplant was going to be, it was definitely better than the alternative. The wheels were set in motion and although I was dreading it all over again it was a tad easier as I kind of knew what was ahead. I kept reminding myself that it would only be a month (hopefully) of unpleasantness and then I would be back on track.
I was readmitted in March 2017 and my transplant was scheduled for March 22nd which happened to be mine and Brett’s 20th wedding anniversary! It felt like a good omen but definitely not the way we had intended to celebrate. The nurses sweetly averted their eyes as my husband sneaked in champagne and a few friends to celebrate hospital style!
I responded to the second transplant (again with donated bone marrow from my sister Cath) in much the same fashion as the first so I knew I could do it again. Blessedly, my back didn’t give me any pain but instead I developed a serious infection. My temperature hit 40 degrees and my blood pressure plummeted. The doctors explained that I needed to go to intensive care. I'd been so strong until this point so I allowed myself my first tear. I was really really scared. I’d only ever thought of intensive care as a place where people died. I was in for three days and felt truly lousy. The nurses were amazing and made my stay less scary. They assured me with their calmness and nurturing and within days of being treated for the infection, I returned to my ward. It was so weird that the hospital room on the ward, which has felt like a prison before, suddenly represented a haven to return to. Within a month I got the okay to go home again. I was over the moon and just couldn’t wait to start the recovery again.
I'm now successfully at the six month mark and I feel almost like before cancer.. My DNA is 98% Cath's and my blood group has transitioned too. ‘Almost like twins’ is now the family joke. We have always been a very close and I never doubted that Cath would be there for me as I would her. That does not dispute my gratitude and overwhelming love for her. The reality of what she has endured for me twice is so very special. She plays it down and says it a given she’d be there for me as I would her but the love, strength and joy of sisterhood is unequaled. I am forever grateful, not just for her lifesaving cells but for the unwavering and indescribable love and support she provides everyday.
The love, strength and joy of sisterhood is unequaled. I am forever grateful, not just for her lifesaving cells but for the unwavering and indescribable love and support she provides everyday.
The love each member of my family share is credited to my beautiful mum and dad who have modelled what unconditional love is. They are our rock, our centre. They sat with me every day whilst I was in hospital and came daily to make lunch and look after me in the first weeks of being home. They were always there for me. And of course my gorgeous man. By my side every day, loving me, encouraging me and believing in me. Believing in our future together. That was so important.
I'm now starting back at work two days a week and Brett and I are planning our trip to Croatia for next year when I'll have the health to travel internationally. Of course, I know that complications or a relapse are possible but I've decided that living and not worrying are now my ‘new normal’.
Bpositive Support & Information blog
A mixture of insightful comments, posts and general 'blogging' from various Bpositive contributors