A photograph of Michelle smiling

Facing the cost of a stem cell transplant - Michelle’s Story

May 19, 2022
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Michelle received a stem cell transplant in 2019 for B cell non-Hodgkin lymphoma, in addition to having a complex and rare immune disorder diagnosis.

At an already stressful time, finances can be a huge concern for patients. It can feel overwhelming to navigate unexpected financial changes when you are preparing for, undergoing, or recovering from a stem cell transplant.

We spoke to Michelle about her experience and how an Anthony Nolan grant helped her to find her smile again.

Information is power, so my main piece of advice is to be as open as you can. Talk about your worries, your financial situation, and ask about what help might be available.

  • Were you surprised to find that your treatment would have a financial impact?

When you’re given a cancer diagnosis or you’re told you need a stem cell transplant, the last thing you want to think about is can I afford petrol to get to my appointment?

I experienced lots of anxiety and stress. I was unable to sleep because I was worried about whether I could afford food or the roof over my head, especially having a warm environment which I needed when I came home from treatment every day.

It’s hard to be going through various treatments that make you feel very unwell, to then be sat looking at your finances and wondering what you can and can’t afford. All of that was really affecting my mental health.

  • You applied for an Anthony Nolan Grant following your treatment – how did receiving a grant make you feel?

The grant took a lot of weight off my shoulders and gave me a little bit of a reason to smile again.

I’ve always been artistic and used art in my early life to process trauma. I stopped and started, and I never stuck with it outside of that context. But when I went through my stem cell transplant I rediscovered drawing and it was so liberating to be able to put shapes and colours on paper to represent what I felt and thought.

I used abstract art as a way of helping my recovery, both physically and mentally. I had very little connection with the outside world, mostly due to my recovery from transplant being throughout the pandemic. So, I used my Anthony Nolan grant to purchase fluid art resources online. Rediscovering art, especially fluid art, meant that I had a place to put the chaotic emotions.

A picture of Michelle's abstract artwork - blue and pink

From the very moment all my paints and tools arrived, I was hooked. I was free. I found a new level of connection I hadn’t had prior to that. My first few paintings left me so empowered.

I was in hospital for seven months and drawing helped me to communicate my innermost thoughts and feelings. I didn't just find an outlet, I found a new sense of connection to the world around me, through shapes, colours, and textures which I’d stopped noticing. My art left me with something to talk about and something that defined who I was rather than treatment and appointments.

During treatment, you kind of lose connection and perception of the world. You go into a bubble which is dominated by IVs, tests, scans, bloodwork, and seeing health professionals. When I was making art, I was no longer as concerned about everything that was happening.

I came out of hospital just as COVID-19 was making its way around the world, so for me, art then became a massive thing. I realised if I could feel this level of liberation making it and looking at it, would others feel emotion seeing it too? So, I turned it into something that would impact other people in a positive way and started using my art to fundraise for Anthony Nolan.

  • From your experience, what practical financial advice would you give those who are receiving a stem cell transplant?
    • Information is power, so my main piece of advice is to be as open as you can. Talk about your worries, your financial situation, and ask about what help might be available.
    • Write lists of what needs to be dealt with immediately and what can be left for a little while. I found it very helpful to write down my incomings, my outgoings, my priorities, and my desires.
    • Share your financial concerns with your GP. Making that first step was crucial because it opened my world up and I was able to get things done. Next thing I knew, I had referrals left, right and centre to Social Prescribers, to cancer charities. The last thing you would think about is going to the Citizens Advice - going to them can be very beneficial, especially with the benefits process.
    • Ring up your energy company and tell them your situation. They put me on a list that meant if we ever had an energy crisis, I would be a priority (the Priority Services Register).
    • I was very late in finding out about hospital transportation, how to get it and if I even was eligible for it. It wasn’t openly discussed at any of my appointments, maybe because I never expressed a concern, so make sure you ask!
  • Two years later, you now support others on our Patients & Families Forum – what key advice would you give to someone going through a stem cell transplant?

When I look back, I could not have imagined being where I am today. I was fortunate to have great health professionals around me who kept me on my feet. I embraced every single one of those interactions, because every single one of them made an impact on where I am now.

So, I would just say to people: it’s rubbish, it’s really rubbish, to be in the position you’re in - but embrace those things around you and just find small things to make you feel happy, because they are the things that are going to get you through every day.

An Anthony Nolan grant can help you find the small moments that give you joy and also cover extra unexpected costs of a transplant. It’s typically £250 or under, and can help towards a variety of costs, such as items to support your wellbeing.