I remember when I was first diagnosed, one thing I felt grateful for was not having young children… to worry about, to have to arrange care for while I was incapable of even caring for myself, to be upset about possibly not seeing them grow up, to feel sad that they might lose their mother far too young. I couldn’t imagine how it might feel to be in that position.
It seems that myeloma, which used to be considered ‘an old man’s disease’, is now being diagnosed more frequently in younger people, both men and women. The youngest person I’m aware of is Emma Jane in London, who is shockingly young at only 28. But there are others, older than Emma and younger than me, who are quite likely to have young children, not only to care about, but also to have to explain why mummy or daddy is so ill and what might happen. I mean, how do you have that conversation? How do you talk about an incurable illness to a young child? How on earth do you do that? How do you find the words?
I’ve not seen it yet, but Kelsey and the Yellow Kite is a new book that has been created to help explain myeloma to young children, hopefully in a way that makes it simple and less frightening. I imagine it could be used with grandchildren too.
Gordon Barbour died from myeloma in 2008, leaving a seven year old daughter called Kelsey, for whom the book was named. His family raised £13,000 for Myeloma UK, which allowed them to create and publish the book.
No one would want to have to have to face this situation ever, but it does happen. Hopefully this book will help. It’s available to order for free from Myeloma UK. The book is listed in the Living with myeloma section, about halfway down the page.