Escape from hospital

I’ve finally been let out of hospital and have started to feel a bit better, albeit I am still walking very slowly and feel exhausted after only a few hundred meters.

We have been adventuring as soon as possible post escape. Fresh air and sunshine is a natural healer. I managed a short walk around Akaroa on the Banks Peninsula.

The town had more French flags than NZ.  It was settled by both Brits and French in 1840 but the French influence and pride has endured.

I managed to get to the lighthouse and back in 3 hours. Not very far, with lots of stops to sit on a bench, snooze and watch the world go by.
















Needless to say, Sarah climbed up a few hills whilst I was pottering around. She found a curry track where the gorse smelled like the name of the track,

a local Maori sculpture and a sign trying to dissuade Mountain bikers.
We stopped on the way at Little River art gallery. Could not get the bear in the car.

Picked up a small metal bird for the garden instead.

Yesterday we went to Taylor’s mistake and Godley’s Head.

Sarah walked it all, I managed my first 10,000 steps for some time (at an average speed of 2km an hour). Yet it was another sunny day when it feels good to be alive.

It has been a horrible 2 weeks, in and out of Christchurch hospital. (a 50’s concrete jungle, with peeling paint/wall paper and grey net curtains about to be replaced by a new modern hospital next door)

When three different registrars (junior doctors) said “it is going to bad”, I thought, “how bad can it be?” I mean, doctors and hospitals are supposed to make you better. It is counter intuitive for them to make you sick first.

Anyway, now I know that it was foolish to underestimate the effects of Melaphan/high dose chemo.

I thought I could beat it; instead it beats up on you and leaves you shattered.








First you get weak and tired. This is due to the near to complete wipe out of white blood cells causing neutropenia (abnormally low level of neutrophils in blood) This means low to zero immunity.
Then you start to feel sick, rapidly followed by:

• Severe diarrhoea (just imagine 10 times a day for 14 days) despite codeine and Imodium/loperimide
• Dehydration; it is hard work to drink more than 2.5 litres of fluid every day 
• Hot and cold shivering despite layers of blankets and all your clothes on
• Fever: a temperature between 37-39C despite antibiotics
• A horrible metallic taste in your mouth that does not go away despite mouthwash and Nystatin (a yellowy disgusting type of mouthwash you have to swallow 4x a day)
• Constant rumbling stomach, gut and wind. Chemo attacks all the soft tissue in your digestive system as well as your blood.
• Nasty red spotty rash all over my back and stomach (given some red antiseptic type body wash that smells like disinfectant) Try washing yourself with an IV drip in, attached to a bag of fluids. Fortunately, Sarah was around to help.
• Inability to concentrate on anything for very long as my brain was in a fug. 
• Loss of any remaining hair on my body. Now very bald apart from some black tufty bits behind my ears and on my toes. Maybe I will turn into a hobbit or failing that, Friar Tuck?

On top of all of this, I had trouble with my PICC line.
After a week, my right arm started to ache and swell. Rushed in for an ultrasound test, they found a new large blood clot (Medical term: DVT extending from basilica vein into axillary and brachiocephalic vein). The PICC line was removed immediately, but, with no anaesthetic. The clamp that held the 37cm of plastic tube in my veins in place, had got stuck with scabs all around it; they had to scrape this out before pulling the tubing out. I tried to be brave, but tears spilled out of my eyes as I felt it all slide out and I shook in shock for a few minutes afterwards. My arm was severely bruised inside and was at one stage 6cm bigger than the left. It felt like it was trying to burst through the skin. It is still bruised and all the veins protruding and still a wee bit sore but looks more like my arm.

We have now been in Christchurch for 3 weeks. As much as we like it and all its art and graffiti,

Spotted a new sculpture in the river Avon

Found melting penguins near a car park

we would like to leave soon. I remain as an outpatient until my blood recovers and I am no longer at risk.

I’ve spent 9 days in hospital and several days in bed in Ranui house (a great facility from NZ cancer /bone marrow trust for outpatients and family). I’ve had 2 blood transfusions, countless bags of saline and IV antibiotics and another GCSF (stem cell growth stimulating factor) injection to try to get my blood to recover more quickly. Fortunately, these seem to be working. All my bones are aching again and I feel like an alien is about to burst out of my sternum (I even have the Sigourney Weaver look). This is a good sign apparently, as it means stem cells are finding their way into my bone marrow and multiplying.

Whilst I have been as weak as a tiny infant, Sarah has been brilliant, fetching and carrying stuff back and forth from hospital and generally watching all the medical procedures and asking questions. How she hasn’t fainted I do not know as sometimes my eyes have been tightly shut. I still can’t look whenever a needle is jabbed in; my left arm looks like a pin cushion.

She even managed to get me out of hospital for an hour into the botanical gardens to see more of the cherry blossom and spring daffs. I had to sleep for 2 hours after that!

Sarah has also been adventuring on her own

Visiting Rakaia gorge near Mount Hutt for a hike in the bushes. Her photos prove that the weather is rubbish sometimes.

• Taking on a challenge to find all the signs hidden on the Port hills from a local store offering prizes, posting selfies of herself in full bike gear on Facebook. (if it involves exercise and reward, Sarah is first in line!)
• Attending a book launch of Nadia Lim (a NZ master chef winner) complete with free book and wine. 

To celebrate springing me out of hospital, Sarah has been enthusiastically trying all sorts of new recipes. For brekkie she cooked up a new berry and rice puff muesli.

For dinner she managed 4 different pizzas.

Not an easy task in a small kitchen, using a bedside table and old glass bottle to roll the dough.
Last night she roasted pork belly with fennel and apple. I was very impressed.
Sadly, despite these valiant efforts, there is very little I can taste apart from salty food, citrus, sugary sweet things, cranberry juice and acidic things like onions and capers. My mouth tastes like an ashtray most of the time. I can just about cope with caffeine (tea or coffee) if very weak. The doctors do not know how long this is going to last; it just depends on how quickly my body processes the melphalan. I am on day 18 post stem cell transplant. They are not allowed to give me any more chemo until day 101. In the next 82 days, the effects will lessen but to what degree will depend on how my body copes with it all.

Being bald is a strange experience.
I wear a beanie to bed as my head gets cold at night.
Without it, my head sticks to things (think Velcro or bare flesh on sofa)
When I take my beanie off in public I get the strangest looks. First of all, there is a double take and you can see the thought process:
 is it a woman? (yes/probably);
 Is it a Buddhist nun or a mod? (no/wrong clothes)
Finally the person looks away in shock realising it must be a cancer patient.

It would be much better if that stranger just said hello and smiled rather than being embarrassed.
Think about that in case this happens to you.
Next time you see a bald-headed woman in the street, please just smile and say hello. It might be me.