Lee Mamwell is the husband of Know AML ambassador, Anna Mamwell. For Acute Myeloid Leukemia World Awareness Day, Lee Mamwell shares his experience of caring for his wife when she was diagnosed with acute myeloid leukemia in 2015.

What impact did caring for someone with AML have on your wellbeing?

Nothing prepares you for being a caregiver, it doesn't cross your mind that one day you will have to perform this role. We are not trained as caregivers and so rely on trained staff for support; this can leave you feeling lonely, scared, and vulnerable. I felt helpless, stressed, and anxious while having to maintain a positive attitude. Suddenly you have thoughts of worst-case scenarios: being a single parent, losing your house, finding flexible employment to suit your situation, not having insurance, financial pressures, etc. Emotional distress, lack of sleep, loneliness, juggling home life, shopping, washing, packed lunches, and everyday tasks your wife usually does for her family are now yours.

Our daughter's wellbeing was also deeply affected at times, with her crying in her bed at night and wanting her mum. At the time, I kept this from my wife—she had her own fight to deal with and I didn’t want to add to her stress. Our daughter was struggling at school, being bullied with nasty comments about her mum's cancer, and being shipped between family homes, it was heartbreaking.All this had a massive impact on my own wellbeing, let alone an 8-year-old, even now it can be upsetting.

How did you take care of yourself both physically and emotionally and how did it benefit you?

At the time, you don't feel you need help as you’re not physically dealing with cancer treatment; however, watching your wife or partner struggling daily takes its toll. It’s only afterward that you think about how it has affected you.

I reached out to friends and family for support when I was at low points, but I didn’t feel able to ask for professional help—although I’m sure it would’ve been there if I had asked. They also helped with practical things which did take some of the pressure off. I probably didn’t look after myself mentally while my wife was going through her treatment.

I would always take my own food and drinks over to the hospital as I would spend every day at my wife’s side, at least I could make sure I was eating and keeping my strength up.

Where did you go for further information, support, and practical advice, and what would you suggest going for a new caregiver?

I looked for charities and information on social media, where I found others going through similar experiences, which was helpful. I picked up tips and knowledge from people who had been through a similar experience and sought some financial support. I think there could be better support for families/carers, such as a forum for them to ask questions and share their experiences; although these may be available now, they were not at the time.

The school pastoral team helped with our daughter, who she felt comfortable talking with. I think that counseling should be ongoing and revisited later, whereas we were only offered this support at the time.

What did you think of Lee's story? Let us know at ses_knowaml@scientificeducationsupport.com