Can I beat Myeloma?

We lucked out on weather this week travelling for 2 days out of the eerie Queenstown mists (caused by steam pouring off the lake) into the dramatic Fiordland national park (a treat) and then into the desert of Central Otago (regular chemo session). Marti (Jan) and Robbie (Ann) my current carer team were determined to stop me moping around/feeling miserable; we were going to have some adventure and fun in the sun as well as hospital trips. How can you not smile and enjoy yourself when the sun is out on a glorious blue sky day? (despite the chemical processes stewing inside) A chance meeting in an art gallery led us to discover that May is half price for locals on many big tourist trips; we chose a day trip to Doubtful Sound. Robbie was sweating a bit when we told her we had a surprise; fortunately for her I am not as daredevil as Sarah these days; only briefly considered freefall. There are 14 Sounds in Fiordland National park which are really Fiords (NZ name for Norwegian Fj...

I had a several good laughs this week, with a make-over in Alexandra from the Look Good Feel Better Cancer charity www.lookgoodfeelbetter.co.nz and trying on wigs with Judy from Dunedin in preparation for the hair loss ahead. Not sure which one I prefer (if any) champagne, foxy or salt and pepper.  The blondie look is not quite Dolly Parton (need a serious boob job for that) and not sure if any of them are me. I can cut the fringe or go for a longer wig, but whatever I do the hair needs to look messy to not look like a wig. I get the choice of wig or turban or both. Turbans are good in bed apparently as the cold and strange scalp feeling is common after chemo. Talking to others (who have already been through the bald head stage) a buzz cut is a must as it helps you feel more in control; none of us are really, it just the perception. Sarah prefers the salt and pepper look as she wants to borrow it when I am done with it. I can imagine it under a cycle helmet doing a...

I am writing this between the hours of 3 and 4am when most other people are normally sleeping deeply and everything is quiet. It is also called the dead of the night (not to be confused with witching hour at 12) and is the time that is most common to die in hospital. My body has different ideas. I’ve been told “listen to your body” but I am not sure exactly what it is saying half the time. I’m either buzzing on steroids; yawning my head off, slumping down in the nearest place I can find or feeling “Bluuurgggghhhh” In between that I dash to the toilet every hour; due to the amount of liquid I am drinking. I just hope that incontinence has not set in early and the body continues to remember bladder control throughout this treatment. Even my walks have to be planned around finding a loo at a strategic point. There has been a lot of hopping and leg crossing going on, which makes it bloody difficult to walk faster in desperation. BUT hell, I am still alive! And there have been ...

Good news this week; the chemo is working and my paraproteins (abnormal antibodies) have reduced by half. The Haematologist was pleased with the results after week 4. If they disappeared altoghether the myeloma would come back quickly, but as mine are reducing gradually, the treatment is working as expected. I did ask if the process could be speeded up or avoided altogether (impatient to get it over with) but sadly not. It was worth a try. We usually manage to combine hospital visits with sight seeing and this time it was a tour of Southladn: the coal mining villages of Nightcaps, Ohai, local villages of Tuatapere and Riverton and the beaches to the west of Invercagill. We enjoyed dusky views around Monkey island; the stoney beach at Colac Bay; the vast expanse and sundown at Oreti beach (officially a road but more like a vast expanse of volcanic sand); the beauty of Omaui. Sarah paddling in the twilight Whilst having lunch in a pub in Orepuki, the ever competi...