Health Update: 21 May 2017


I don’t think I’ve been in touch since my brain surgery two months ago. Sorry about that. It’s been pretty full on of late. I know some of you are wondering how I’m doing and I wish I had the bandwidth to blog about it. There is the medical news, which I will summarise here, but there is the rest-of-me news too – the inner stirrings, the nuanced discoveries, the latest encounters with my deepest fears and longings, the unlikely gifts. I am learning a lot and will share that with you soon enough. Promise.

So if you want the headlines about my health:

  1. I had brain surgery in March to biopsy a tumour for a particular mutation that might qualify me for a new drug, which could give me a new lease of life. My surgeon was awesome, I am recovering well and I still have a full head of hair. Boom.

  2. Three weeks later I was told I had tested negative for the mutation and don’t qualify. That night I slept for three hours. I pictured months ahead of me instead of years. I cursed cancer. I dipped my toes in despair.

  3. The next day I pulled myself out of my boots, travelled to Newcastle to give a talk at their Maggie’s Cancer Centre and, in the presence of many brave cancer peeps, remembered what I’m really made of. Onwards.

  4. I am now in an intense process of discussions, questions and exploration – including visiting the unique (and somewhat controversial) Burzynski Clinic in Houston, Texas last week. I need to weigh up the pros and cons of that experience before I report back to you usefully.

  5. Some options are now on the table as alternatives to Whole Brain Radiation, but there is no clear way ahead. At this point we are reviewing, evaluating, discerning and to some extent guessing. Every choice seems risky. And there are choices, which is considerably more than I had a couple of months ago.

  6. My brain scan ten days ago revealed that the tumours had not grown since early March (having shrunk the three weeks prior), which continues to mystify my medical team. I decided to make no changes to my medical treatment until the next scan (now every six weeks) in June.

  7. Meantime I am doing my complementary treatments and getting on with my glorious life.

  8. And I finally had a port fitted two days ago. Quite sore from surgery, but well enough to come to Bath for my talk tomorrow. Bye-bye vein-stabbing and being a pin cushion. (See photo above).

It is nearly six months since discovering the latest flurry of lesions in the tissue and lining of my brain. Their presence in the lining is what makes this so difficult (leptomeningeal disease), but I remain optimistic (mostly) and asymptomatic. Steady as she goes.