Yesterday I received my first ‘fare-thee-well, thank you for your life’ letter. A bona fide and very final goodbye. It was loving and beautiful and I got it for what it was, but it was premature. I also realised that it was most likely a response to my recent Facebook post in which I shared how very ill I am and said, “I am pre-paring to go – as in paring away the fears, regrets and attachments that will stop me going gently into that good night.” After which, I added, “AND I am not giving up” – with some details about how I am being proactive. Both are so, peeps, and both are entirely appropriate to my situation.
I am very ill. My brain tumours are progressing and my symptoms have become debilitating. I have had severe headaches, nausea, dizziness and an exhaustion such as I have never known. The hardest part has been losing my balance, which seems to be permanent and worsening. I walk like a drunk. I need a walking stick to get anywhere and manage to potter round the garden every day with John’s help, but deeply miss walking through the fields to see the horses. It is what it is. I don’t want to get into all the medical nuances here. It’s a minefield trying to discern what’s causing what: new tumours, damage in the brain from Gamma Knife radiation over a year ago, effects of brain surgery a few months ago and possible side effects from experimental new treatment I have started. It is quite the ride.
Under these circumstances, which are clearly perilous, it is wise and sensible to be ready for any outcome. It is equally wise to continue directing my treatment, exploring options and doing all I can to stay here long enough to leave without regret. To that end, I have a way to go. So, I am on the case. John is helping me. My medical team is alongside me. None have given up on me, yet we all recognise how near the brink I am living. There is no clear solution. We have chosen a medical path that falls outside the UK license, both privately and on the NHS, which presents another raft of challenges but really looks like my best option right now. When I feel ready I will share more details of what I’m up to and how it is unfolding. For now, please know that I am alive and present and working hard to stay.
This is also a dark night of the soul. As such, it is time for me to retreat from the world for a while, to turn in, put my body first and listen to its wisdom. For now, this is between me and my Maker. I assure you it is rich. I assure you I am gaining spiritually as much as I seem to be losing physically. I am whispering. I am letting my hand be forced. Sometimes we need to die to parts of ourselves in order to be free. This is the part I know is non-negotiable, whether the result is literal or not. Therefore, this is what has my full attention.
Meantime, my hair has purple ends and we exchanged our sensible car for a secondhand long-lease convertible which John drives me around in when the sun shines, purple ends blowing in the breeze. As you do when you are unable to drive. It’s a symbol of my will to live. We plan to spend a week in Devon with my sister and her kids soon, where I won’t be able to participate in much activity, but can soak up my daughter’s joy when she screams in the cold waves. I will likely stay quiet in our cottage most days and write. That is the one thing I am able to do at present, for limited periods each day at least. The universe has slowed me down, pulled me back from all my activities out in the world, forced stillness upon me (even turning my head to the side can spin me out) and plonked me in bed in front of my computer screen. And my next book is coming out. I can’t help noticing that my potential demise seems to be an excellent birth canal for books.
Bear with me dear ones. I won’t be blogging for a while, but John or I will inform you if there is any serious change either way. If you follow me on Facebook, I will occasionally post a message there. It will be at least six weeks before my next brain scan, when we can see if the new treatment is making a difference. During that time, I hope to find better ways to manage my symptoms and improve my quality of life. I didn’t know muscles could ache from being sedentary. I am on steroids, which really help the headaches, but present other challenges that I need to deal with as mindfully as I can.
So, there it is. I am getting ready for all the unknowns that are coming next; trusting God while tying up my camel; keeping my powder dry. Or, as my dear friend Catherine Rolt hilariously advised me: Plan your funeral. Then live.