10. Pain Week

Symptoms: slight wheeze

Pain level = 2 (from surgical wounds)

Treatment: Capecitabine

Featured emotion: Thankfulness

It’s been quite a week:  two surgeries plus five hours under the gamma knife. I have stitches in my stomach, my chest, and my head; plus I have four screw holes in my head from the gamma knife frame.  I really, really hope that I never have a week like it again.  However, all of it was necessary, and each time I was knocked to the ground, I recovered just in time to be hit again.

It sounds awful, and it was, but it would have been so much worse were it not for the care and compassion of the medical staff at all three hospitals where I was treated.  As this is Thanksgiving in the US, I’m feeling very thankful for the staff – from the most junior nurse to the most senior consultant.  Even when things didn’t go to plan – as when the anaesthetist didn’t turn up for one procedure, so it was a lot more painful and traumatic than it needed to be – I had someone to hold my hand throughout.  And in recovery, a nurse brought me chocolate because she knew that I needed it – badly.  Nurses held my hair when I was sick.  The consultant screwing the gamma knife frame to my head took infinite care, so I didn’t cry this time.  He was most sorry that I had to spend ‘At First Light’s paperback publication day in his unit. Every hour for five hours of gamma knife, the radiographer massaged my back.  The dermatologist taking the biopsy samples, a charming Iraqi, kept up a stream of funny stories while he cut and stitched so that I barely noticed.  Some of these people I know very well from previous visits, and some I met for the first time.  I realise that my story touches people, but a lot of what I experienced goes beyond professionalism.  I know the difference, having experienced uncaring, brusque and careless nursing, and consultants who couldn’t remember my name.

I’m writing this four days after the gamma knife treatment, which I never could have done with Whole Brain Radiation.  The treatment has allowed me to live my life as I choose, for whatever is left of it. Gamma knife isn’t an option available to everyone, so I’m thankful for that too, and the extremely clever boffins who treated me without destroying my vision.

The bad news is that the scan showed 16 microscopic tumours in my brain, along with the pituitary mass, which had grown in three weeks despite the Caped Crusader.  Sixteen is a big number, and I’m still processing the implications.  It may be that my holiday break from chemo gave the stalker the opportunity to set up camp.  It may be that the Caped Crusader isn’t working in the brain.  The tumours on my scalp are melting away, but skin is a different tissue.

This week’s body scan is the big one, because it will tell us if the Caped Crusader is working in the most important affected organ: my liver.  The lung tumours are not a big worry, and can be dealt with by radiation if necessary.  Neither surgery nor radiation are options for the liver.  If the tumours there have grown at all, it will mean that another drug is needed – with life-changing side effects.

For this Thanksgiving week, I will mostly be singing and eating with friends and counting blessings.  SM and I will face the scan results next week.  Together.

I refuse to let this disease ruin my life before it ends it.