My daughter explained to my grandson, now just turned 8, that the reason people have had to be careful with me of late and why I am going to have a long treatment in hospital is that I have wonky blood. It is a lovely explanation. It fairly accurately sums up what is wrong – myelodysplasia means wonky blood. My blood cells are the wrong shape, and don’t work properly. Now I can have a clear discussion with my grandchildren about the why’s and wherefore’s of what is happening. I am in hospital now to get rid of my wonky blood and replace it with some unwonky blood from a kind donor.
The term has caught on in the family, even between adults. It isn’t trivialising the condition. Using the technical terms, which are often difficult to say, can be challenging and confusing. Too many blasts can be explained as too many wonky cells in my bone marrow, clogging it up. And the wonky cells don’t work as well as they should, or not at all. So, the treatment is to get rid of the wonky cells as much as possible.
As for dealing with my wonky sense of humour – alas that is incurable.