9. Restoration

Symptoms:  dizziness from low blood pressure, poor energy and concentration

Pain level = 3 from biopsy wounds and scalp tumours

Treatment = Capecitabine

Featured emotion: Restoration



I have 20 active tumours in my body…and now 10 new scuba dives to add to my total!  Yes, against all expectations, SM and I completed five wonderful days under the blue waters of the Caribbean.   This, despite me finishing a chemo cycle five days before!  I really wasn’t sure whether I could manage the physical demands, as my strength has deteriorated so much in the past six months, but SM was determined.  He knew that I’m most myself under the sea, and he got me and my gear to the boat through sheer will power.  Then the wonderful crew, briefed by SM, made it spectacularly easy to get in and out of the water, so I could just enjoy lazy swims 100ft down on beautiful coral reefs.  This disease has taken so much from me, but a week’s immersion in sea water restored me to something like my old self.   It gave me back a load of lost confidence too, to realise that I can still master the equipment and techniques of the sport, which are fairly complex.  After two hours of swimming for five days, with loads of fantastic food, and long naps to the sound of the waves, I felt like I had re-entered my old life.  I felt like a normal person among the other divers – needles, doctors, and scans forgotten.  During that time, the Caped Crusader was doing his job:  all the tumours of my scalp have shrunk dramatically!  It gives me hope that it’s doing something similar on the inside.

Mother Ocean heals.  I feel so incredibly lucky and grateful to have had this experience, even if it’s the last.

While I was away, the Daily Mail newspaper carried an article about me, which is a condensed version of this blog.  I approved the article, but not the headline: ‘The Happiest Dying Woman in Britain’.

Although I abhor the paper’s values, I welcomed the opportunity to spread the message about metastatic disease, and give the charities a mention.  I’m hoping to do more such outreach, as it’s the only way that things will change.

So after two weeks of Undiluted Pleasure, it’s back to two weeks of Necessary Pain.  I’ve already had two biopsies this week, in my head and abdomen, with seven stitches.  On Fri. I will have a portacath device installed in a big vein in my chest so the nurses can get their blood samples without sticking my arms fruitlessly over and over again.  That’s a minor op, under local anaesthetic.  More stitches.

Then next week is another gamma knife procedure, involving the metal cage screwed into my skull, which looks something like this.    Then it will be screwed down to a table and I’ll be in the radiation machine for around three hours while they zap my seven brain lesions – including, hopefully, the one causing my pituitary to malfunction.  All without damaging my vision. The endocrinologist is doubtful that the pituitary will ever work normally again, because the dose of radiation needed to kill the tumour will damage it too.  So I will need to stay on hormone supplements indefinitely.

Quite a contrast, huh?  This is my life.  Moments of pure joy and exultation, followed by intensive medical treatments.  It’s the price of staying alive.  While I’m in the gamma knife machine for those three hours, I can picture myself on the reef, tickling the fishes, looking forward to eating some of their kin when I surface, and seeing that look on SM’s face: the one that tells me it’s all worth it.