Signing books at Maggie’s in Edinburgh this week
So, my friends, this is happening…
Having been told the spots on my early December brain scan were all just scarring and “not to worry”, I have learnt this wasn’t the case. Eight weeks later my neurosurgeon called me in to tell me about a new tumour that seemed to be in the lining of the brain. This is called leptomeningeal disease (LMD), which means the cancer cells have gained access to the cerebrospinal fluid pathways. Essentially they become liquid, which rules out the targeted radiotherapy I had a year ago. He had already requested it from the powers that be and been turned down. “Whole brain radiation is all we can offer now.”
Naturally I pushed back and asked for a super scan to make sure this was the case, which he agreed to do. A few days later I learnt that the situation is worse than thought: at least six new tumours in the tissue of my brain and another area, which he hadn’t yet mentioned, showing undeniable LMD. I could see the liquid streaks on the scan – and my options appearing to shrink faster than the cancer had spread. I was as blindsided as I was gutted. He had known I was in real trouble since before Christmas and didn’t tell me until this moment.
I. Can’t. Even.
His reasons and what they say about the medical culture is the subject of a lengthier article for another day. For now this is what matters:
- I have multiple tumours in my brain, including LMD.
- He is still batting for me and I am over being angry with him. After all, he saved my life last year.
- I am exploring any possible alternatives to Whole Brain Radiation, which can have serious side effects.
- Not treating them means game over.
- The rest of my body is completely fine.
- I have asked them to biopsy a brain tumour for possible mutations (which could open up another treatment) because I have nothing to biopsy in my body. This is under review. Might be possible. Might be too dangerous.
- My beautiful brain continues to be my most vulnerable area and there is much “whispering” to do about this.
- I am clinically well apart from low grade, permanent headaches.
- It may be some time before I know my next move.
- We have a short window of a few weeks to take action.
Meanwhile, life goes on. I intend to live it. I will update you on developments when I have something new to share. This has all been unfolding for a couple of weeks and I now feel ready to go public about it. I am not ready to write something inspiring or pretend I have come to terms with it more than I have.
This is what I ask at this time:
- Please don’t offer me advice (yet). When I need it, I will request it. For now, I’ve got this.
- Please don’t assume that I can turn this around because I have done it before. I am not superwoman. This is a whole new ballgame and previous treatment options have run their course.
- Please trust that I have not given up and will dig deep to find a way through this.
- Please don’t tell me to rest, conserve my energy and stop doing so much. Doing what I do brings me joy, feeds my soul and makes me feel alive. I am choosing my shots and resting in between adventures. But as long I can (write, speak, travel, serve), I will.
- Please be patient if I am slow to respond or act. I have officially hired my husband John as my assistant (on a zero hours contract!) so contact him if there is something critical to attend to.
- Some practical help is welcome. Make any offers to email@example.com.
- Please pray for me and communicate any loving thoughts. Hold us close.
That’s it folks. We are climbing the next ridge and keeping the faith. Onwards.