It is a holiday here on Monday, and FL keeps making me look across the valley to see Lochnagar in the distance – it still has snow on it, so why don’t we take the kids ski-ing? There are many reasons why not: he shouldn’t put his weakened bones at risk of a fracture, I don’t know how to ski, my son is supposed to be revising for his Standard Grade exams (which start on Tuesday). My daughter? She would love it!
FL has been golfing every single day for a week. It’s great that he has the energy and determination to exercise, but I think he is overdoing it. He looks exhausted. He still hasn’t shaken off the coughing / struggling to catch his breath problem. And for the past two weeks he has had an itchy rash all over – especially troublesome on his arms and legs. Probably a reaction to the Thalidomide (though he tried blaming a changed calcium supplement.) But on the scale of things, he is “fine”.
I have been reading “Going for the Cure” by Francesca Morasani Thompson, after seeing it mentioned on another myeloma-wife’s blog. FL is not eligible for a bone marrow transplant, so I won’t be lending him the book, but it makes interesting reading as it is written by a doctor who was the first MM patient to have a BMT. She was an incredibly determined person, and she lived a further ten years after the operation. I have been reading it for the science and the history of treatment of this one condition. It is fascinating to realise how far medicine has advanced in the past twenty years. When she wrote this book, MRI scans were a brand new technology. She also writes very clearly on the subject of consent forms and analyses the risks behind the treatment regime to which she was being asked to sign up. This is a level of questioning beyond the reach of most patients: we are trained to trust the medical professionals. The author makes it clear that so much is unknown, particularly in trial therapies, that the doctors are effectively experimenting with their patients. But given a terminal diagnosis like Multiple Myeloma, what is there to lose?
Anyway, where was I? Oh yes, the weekend.
I have my Volksfaden material to make into a skirt.
I need to finish my April socks from stash.
I need to weed the herb garden before the neighbours start complaining.
I need to re-grout the bathroom tiles (as planned for a previous weekend).
And I am peculiarly excited at the prospect of packing away my winter clothes with lavender and Ebay-ing my daughter’s outgrown summer collection – the sun must be shining!