Buruli Ulcers and life

 You know when you hear about some diseases or illnesses and you think oh that sounds hard, but you never think it will happen to you.  So a few weeks ago I got a little red spot on my arm, at first I thought I must have got a splinter because I had been carting wood and stacking it for my fire. But after a couple of weeks it was still there and itchy, not sore but itchy.  So I took myself off to a doctor who suggested a biopsy to check if it was a Buruli ulcer.  Lovely nurse who looked at the spot while doing the biopsy and said oh that's definitely a Buruli, I've seen lots of them, that's one.  After the biopsy, the spot actually felt better it stopped itching, the red seemed to disappear and I figured - that's it, it was just a splinter and it came out when they did the biopsy.  Then, some week and half later I get a call from the doctor telling me yes, it's a Buruli.  here's the photo - looks harmless enough doesn't it?  

All of this while we are in lockdown, experiencing the endless days of not being able to see Em or Bec and the kids, not being able ot meet Annie in Mornington for lunch at the pub, not being able to sit down or a coffee at a cafe after a long walk, or go to the movies if I'm feeling a bit bored.  Sometimes it feels like time is standing still, although I do have my work, can go into work because we have childcare, an essential service.  Have boosted our free food that we get from Oz Harvest each week and put it on a table at the front of the house so people do not have to come inside.  I make sure to say hello to everyone as they fossick through what we have available, get excited when there is meat, or biscuits or sweet treats.  It puts me back in my box, what right have I got to worry...

But for now, I wait for the appointment with a professor who specialises in treatment of the ulcers.  They are, I think caused by a mossie bite, a mossie that has been playing with possum poo, so the local knowledge goes...  My back deck is a playground for possums and mossies thrive around here.  The Buruli is common down here on the Mornington Peninsula and across the bay on the Bellarine Peninsula.  Apparently without treatment, they eat away at your flesh and, if untreated, can get very severe, requiring grafting and plastic surgery.  Treatment is with some really strong antibiotics, have to have a blood test first because they can effect the liver.  The notes attached ot the biopsy result call it a Barinsdale ulcer, which is apparently where it originated from, we seem to be open to viruses and bacteria being imported.  

Now I have this really weird feeling I have this little red spot with a black spot in the middle, it looks like a slightly weird mossie bite.  and I think about this little thing slowly eating away at my flesh underneath, I'm told they can break out and that's when they become an ulcer.  So it's weird, I feel fine, quite well, the spot is not sore, just slightly itchy.  While everyone is obsessed with COVID and avoiding that,  this is a reminder that COVID is not the only thing that effects our health, or ill health for that matter.

Saving grace was seeing native orchids on my afternoon walk

Day 8 since diagnosis (7 - 8 weeks after it first appeared.)

I still have the little red spot, it is still not sore, occasionally itchy.  See the Professor next Thursday who travels over from his practice in Geelong to Sorrento, I hope the ferry is going.   I have a little bit of hope that he will look at it and say 'oh that's not too bad, we can just keep an eye on it and the antibiotics will not be necessary'.  

I am calling the bacteria Bertie, with an image of little chubby boy bacterias eating away at my skin underneath my wrist.  I guess they are just trying to survive, just wish they hadn't chosen my arm to survive in.  Made the mistake of looking up the side effects of the antibiotics, they cause liver problems apparently, if you cry you weep red or orange tears, can make you depressed and worst of all, according to one of the kelpie owners at the beach, they put you off drinking coffee and alcohol, the two mainstays of my day!

Still, I know it's treatable, so if feeling uncomfortable for 8 weeks or so is the price I pay, well, so be it.  Annie came down today with some mossie zappers, very sensible and such a good idea.  They charge with a USB and I'll be able to hang them around the back deck so when I am sitting outside that will protect me from the little bastards.  I am also going on a bit of health kick, read up on the foods good for liver health, bought a juicer so have kale and beetroot smoothies - not too bad with a bit of honey and some strawberries or apple thrown in.  Also trying not to eat too much fatty foods, no butter for instance, have found an alternative, remembered from staying with a friend in Spain, rubbing a cut tomato on toast, and then adding whatever I'm having, luckily Avocado is good for the liver apparently so that is a good combination.  He used to add garlic, another liver friendly food, which I do sometimes too.  Still have a wine each night, helps me relax and not think about it so much.  

Saving grace: walking in the windy weather along the cliff tops at Bridgewater Bay, cleared the head.

Day 14

Todays the day I have the appointment with the 'Professor'.  And Victoria recorded it's highest ever numbers of COVID cases - a jump of nearly 600 from yesterday, which has shaken me a bit.  Usually I am the eternal optimist but today I just feel the doom and gloom.  Want to run away from it all, from the complications with families, from the worry about the treatment for these stupid little Bertie Bacteria and from COVID.  And I can see that the little Berties are breaking out a bit, the skin is peeling back from the red dot and it has started to ooze just a tiny bit.  

So I will go for a walk, I will go and talk to a friend, I will remind myself of all the things that I can be grateful for and then I will have my appointment with the Professor.  Lockdown eased a bit this week and we can now travel 10kms, not enough to get me to Brunswick or to Seaford but can get to Sorrento.

'linear time is a construct we invented to make sense of a formless existence' a quote from someone reading a story on the radio, Ftizroy Diaries.  It seems an appropriate phrase to describe the strange stretched out time we have over lockdown.  Last night was the first time I felt that stretching out.  It was windy so I did not want to go outside, and for a very short moment was at a loss what to do.  Did make myself a yummy dinner, read a book for a little while, then joined in the virtual choir, the Solidarity Singers we have started to support our Labor candidate down here, which was a tad uplifting.

Day 22

So I had the appointment with the professor.  Lovely man, gentle, doesn't talk down.  Went through all the options for treatment, cutting it out -  but would be quite extensive and require plastic surgery, antibiotics with the potential complications or a combination of antibiotics and see how they go and then it might rehires just a small excision.  Even talked about alternative therapies though made the comment that he had not seen any that were successful.  Warned me that those pesky bacteria might blow out into a proper ulcer but that would be like a last gasp of them fighting to survive.

There was a man in the surgery who looked very at home and I gathered form his conversations with the nurses and others in the surgery that he had experienced the ulcer a number of times, though apparently if not treated properly it can come back.

I opted for the antibiotics, although according to the professor I should only need there for 4 weeks, ugh ..  no alcohol for 4 weeks.... That's because I picked it up quite quickly.  So far so good, yes my urine turns red but not all the time (something he warned me about).  I get a little tired, one good walk with Jac and I am ready to stop for the day and my brain feels a little foggy.  But so far, none of the other probable side effects: nausea, loss of appetite, metallic taste, none of those, just the tiredness and the fogginess.  And so far no sign of the severe side effects: liver inflammation, jaundice, palpitations, agitation, depression or anxiety, fever, rash .... I have been taking probiotics, in tablet form, yoghurt, fermented cabbage and beetroot, but generally feeling surprisingly well.  And the berties have not decided to erupt, if anything I think the spot has got smaller... And I can still enjoy my coffee so life is not too bad.

Day 36

The antibiotics continue to be surprisingly uneventful, I have had bouts of tiredness, or lethargy would perhaps be a better way to describe it.  In the afternoon I am overcome by just a general listlessness.  Jac has found it pretty hard because we don't do many long walks.  I get through the morning walk and go to work but by the time I have finished work about 3.00pm I am exhausted so go home. But none of the other bad side effects, no nausea, diarrhoea, depression.  The last couple of days I have felt like absolute crap, no energy at all, just generally off colour, but it seems to have passed today. I've been back to see the delightful professor, who bulk bills by the way!  He said I may never know how I got it because it the bacteria often sit in the body for months before there are any signs at all.  He asked if I use gloves when I garden, which I generally don't and he said ' ah neither do I though I do recommend it'.  The links that have been identified are mosquitos, ti trees and possums, all of which I have in spades.  I've now had just over 2 weeks with no alcohol which has been surprisingly easy.  Just under 2 weeks to go, the end is near.  All against a background of COVID cases in Victoria increasing, getting above 2,000 twice this week.  But still we have an end to lockdown in sight.

Creating a new space

I am in the process of selling the house that I lived in with the bloke for 38 years.  I am in the very fortunate position of having another house (with a mortgage) down on the Mornington Peninsula.  During his illness I hardly got down here, although his last request for an outing was to come here and sit on the back deck in the sun looking out over the Ti Tree.  Over the last twelve months i have been unable to spend much time down here because of all the travel I was doing.

But now I can see the potential of actually living down here.  I love the beach, whatever the weather.  I love that every time I see it, it is different.  Still and calm one day, stormy and rolling waves the next.  Blue skies then stormy clouds, sun glistening on the water on a hot day or the yellow of a sunset being reflected in the water and on the sand.  We have a dog beach near here, where dogs can be walked off leash.  Some days when the tide is out it has a wide sandy beach, other times when the tide is in and it is a bit stormy there is hardly any beach to walk on.

And then there is the garden.  Wild and overgrown from over a year of neglect.  Had to have some of the ti trees cut down because they were falling slowly.  I love the way ti trees fall, they tend not to have the drama of the crashing branches of gum trees, rather they start to lean, as if the challenge of remaining upright is just too much.  They lean into each other and form a crown of supporting braces all holding each other up.

Before some of that crown was removed there was not much light in the backyard so the grass did not grow.  Now it grows wildly, as if all that was hidden beneath the ground is suddenly celebrating freedom and dancing in the newly found sunlight.  I can appreciate the beautiful green and the waving blades of the grass, but there are snakes in that yard which the long grass can hide and I do want to walk through the yard on a cold morning without getting wet from the dew that settles on the grass leaves.

The beginning of the garden taming

The plan is a slightly wild garden, a small patch of green, a fire pit, an apple tree, a lemon tree and space for vegetables in amongst native plants and the occasional import like lavender.  I leave behind in Kew years of planting, a large paperbark which I have loved and has given us much pleasure, a fig tree that has largely fed the bats in the last few years but provided us with a beautiful shaded spot in the back part of the garden, a cumquat my dad planted, an apple and a plum tree.

My transition to the sea change has been slightly effected by two things.  The first is the process of selling.  It is a painful process, getting it ready, decluttering, a job done with the help of my two daughters who were excellent in saying no, you don't need this, no that looks messy there, so we finally have an uncluttered house that has new paint and new carpet in a few rooms.  And now the challenge is keeping it clean, so that it looks sparkling for the Open for Inspections which happen twice a week.  The second issue is I am standing as a candidate for Labor again, this time in the state elections, as the candidate for Kew a fairly safe Liberal seat.  However both of those activities require that I am in Melbourne a fair amount of time.

Traditional Christmas toasting of marshmallows in the back yard

Footnote,
the above was written in late October.  3 months later I have sold the house in Kew, Labor won the election in a landslide, I got a 6% swing against my opponent Tim Smith and I am now in the process of settling in to my sea change.  We did celebrate Christmas with the family in the sea shack, I did Frocktober to raise money for Ovarian Cancer Research and did an Instagram series of democracy dogs who came to the Early Polling Centre and waited patiently while their owners participated in the democratic process.

My favourite democracy dog, Arthur, one of Jag's mates waiting patiently

One more period of a few days to get everything moved out of the other house, a drive up to Sydney (with Jac of course) and then I'm back to my little cottage in a very urban part of the Mornington Peninsula. Just a 20 minute walk from the bay beach, 5 minute drive to what I think is the best ocean beach around with natural rock pools to swim in when the tide is out, and short drive to wineries and the beautiful hinterland.