Symptoms: extreme breathlessness, nerve pain in left arm
Pain level: 2
Featured emotion: Determination
Well, my friends, we’ve reached the stage that I had hoped would not come for a while longer. Capecitabine has failed, and the disease is spreading rapidly. We’re trying a new chemo starting next week, which will hopefully buy me some time. Aside from severe breathing problems caused by partially collapsed lung, I’m not in pain or distress. And the cast finally comes off my broken arm next week, which will drastically improve quality of life.
I’ve decided to treat the prognosis as bollocks. I have far too much that I want to do to give in to despair and let this thing bulldoze me unopposed. I’m looking into radiation treatment for my liver and lung tumours, which would reduce my disease burden temporarily. If the next drug one fails, there’s one more to try.
I have two new books to write! We’re going to New Zealand in just over a week, taking a suitcase of drugs (and doctor’s letter!) to get me through. I’m still leading my choir every week, from a sitting position, and just sang in a big gig at a folk festival. Singing helps my breathing, so I’m going to sing, sing, SING until they put me in the box.
At the same time, I must be practical, and accept that my activities will soon be curtailed. I’m a planner, I can plan for that. Luckily, my job involves sitting still in a chair all day. So far, my brain is still clear. I can continue writing for as long as that holds true. I want to be alive to see these two books published. That’s a pretty powerful motivation. And disappearing into my imaginary worlds, where I control the action, is welcome respite from dire thoughts.
I will keep you informed as things develop, because it’s important to me that you get the unvarnished truth. No euphemisms, no hedging. Steroids and morphine are making it possible for me to function pretty well for the moment. I have good days, filled with visits from friends, and I feel well-supported by the care team. I’m excited about our last big adventure, cruising the ocean down-under. The sea always restores me. I need to be near it now.
We talk about ‘buying time’, as if it’s a commodity, but it’s not. It’s a construct of our imagination. It only exists in our consciousness, and our perception of its passing is totally relative. A year can fly by at the speed of a week; a day can seem to last for a month. The name of the game now is slowing the disease, yes, but mostly squeezing out every drop of enjoyment that I can. It’s a time for letting go of anything not essential, which can be sad but also liberating. Writing, singing, friends, family, but mostly SM – these are my priorities. I will do anything to stay with him for longer.
Please stay with me. It will be hard at times but I promise chinks of light in the gloom. Your support helps to keep me going.
There is only now, for all of us.