I’m one of the 2,000 people a year in the UK to have a stem cell transplant to cure their blood cancer or blood disorder. My transplant came from an anonymous donor in April 2016, after I was diagnosed with leukaemia. I received incredible medical care from my doctors and nurses – but support fell short when it came to dealing with the psychological and emotional challenges of having a transplant.
“I felt guilty about what I’d put my family through, and I went through a stage where I often cried in the car and wasn’t sleeping well. I was offered a counsellor in hospital, but I had to focus so hard on just keeping food and medication down that I couldn’t talk to her. What would have helped is for someone to have called me, two or three months after my transplant, to ask if there’s anything I needed to talk about, and then to be referred.”
I know I’m not alone. The blood cancer charity Anthony Nolan recently found that nearly half of transplant recipients need emotional and psychological services such as counselling and group therapy. Worryingly, only a quarter of transplant patients receive such support. Clearly, all too often, mental health isn’t seen as a priority in the same way that physical health is.
At the moment, the way services for transplant patients are commissioned means some patients struggle to access the specialist care and support they need during recovery. My own experiences during transplant reflect what needs to change, and the timing of support and information is crucial. For me, the hardest time was around 6-12 months post-transplant.
Anxiety around infection
I felt guilty about what I’d put my family through, and I went through a stage where I often cried in the car and wasn’t sleeping well. I was offered a counsellor in hospital, but I had to focus so hard on just keeping food and medication down that I couldn’t talk to her – every time I tried to speak, I vomited. What would have helped is for someone to have called me, two or three months after my transplant, to ask if there’s anything I needed to talk about, and then to be referred.
It’s also important that the support on offer takes into account the unique challenges transplant recipients face. One such challenge is constant anxiety around infection, as your immune system is low for a long time. Although you’re well today, you only need to be exposed to an infection to become seriously ill again. Before diagnosis I worked as a nurse, but that’s not an option anymore due to the risk of infection, and that’s had an impact on my self-worth. That’s why it’s so important that psychological support recognises the context surrounding a stem cell transplant, and that patients will often have specific concerns.
Carers need support too
Finally, there’s a need for more support for the families of transplant patients. Every patient is different, but when I was diagnosed, I was given a 25-30% chance of survival, which was lower than average.” . I wanted to make sure, if I did die, that my children had the opportunity to discuss it. I looked for resources aimed at teenagers that could help me, but there was hardly anything – we were given a couple of phone numbers to call, but that’s a lot to ask of a child who’s having difficulty talking about things. There should be support available for them, too. Each of my family has a story, and theirs is no less poignant than my own.
To improve things for future transplant patients, and make sure they can receive the care they need, I’m supporting Anthony Nolan’s campaign, Recovery After A Transplant: Who Cares?, to urge the health service to review the way it commissions post-transplant care. Visit www.anthonynolan.org/whocares to take part and help make sure transplant patients receive the support they need.