I Cannot Let Myself Go Down That Path

Today my story is featured on ABC News Radio and News Online which both go national across Australia. This is my second time being interviewed by Giselle Watakama and she really makes it easy. She also has a magic way of pulling the secret stuff out of me. The stuff I try to cover up from the public, the people I know and often from my loved ones. She even manages to capture the quaver in my voice, because dammit I cannot hide that. Would if I could, truly.

I do not want my son or my lover to see me panting as my body tries to fill my ostomy bag. Panting as if I am birthing a hippopotamus. Because that is what it feels like. Pure agony for at least thirty minutes, often two hours  and exhaustion afterwards. And then there is the small matter of getting a bag to fit on my ostomy now. The mesh has sucked an area a bit like an inverted teacup beside my stoma. Right where the mesh is. And it is next to impossible to get a seal. So out of the myriad modern devices designed to make life easier for the modern ostomy I am left with an older version which does not seal and also the filter does not function well. Requiring me to ask friends if I stink. Because these days all I smell is poo.

Things are not all bad. As everyone knows I do not like to give in. And I am very stubborn and determined. And I like to advocate to help others who are injured and to try to stop others from becoming injured. While in hospital last week I met a really impressive Colo Rectal surgeon, Dr Peter Pockney who also teaches surgery at Newcastle University. And he is a member of my surgeon, Dr Brian Draganic’s team Newcastle Colorectal. I was impressed with his intelligent way of communicating. Dr Draganic also is very down to earth. I am hoping at some stage to talk to them about starting a mesh clinic up here at John Hunter Hospital. Or a Hernia Mesh Clinic as RPA has the Pelvic one. These two surgeons did not place my mesh. Presently I have started a support group on Facebook for Hernia Mesh injured. It is called Australian Hernia Mesh Support Group. We are gaining more members due to the radio interview on ABC today which is wonderful. People who do not usually use Facebook so I have given then my name and mailing address instead.

Some of the timeline of the article was a little bit out. So much for Giselle to sort through. Basically I had the mesh inserted in 2015, three years after my ostomy was formed. The photo above was taken after I got home from the mesh repair. Not knowing then I had a mesh infection, which is NOT considered to be a good thing in mesh circles.

So for most of early 2015 I was in and out of John Hunter with bowel obstructions. I was given emergency surgery in August 2015 for a Parastomal Hernia  and mesh was inserted. I have been much worse since, though not to the point of vomiting faeces but that is because I am so vigilant to not let the obstructions get to that point. But she is right. I do fear choking on faeces, because I did, for many many hours and even The NG  tube could not suck it all away. It was the only time in my life I wanted to run away and die somewhere where nobody could find me. Well I did once after I started looking after my demented parents in 2013 but I had just left my nasty husband and walked into the hell of Alzheimer’s. With a new stoma and a then undiagnosed Hernia.

So basically Giselle let me talk, and tried to make sense of what I said, with no medical training and my tendency to ramble she did a great job! What was even better for us Mesh campaigners and advocates was the info she came up with. We need these skills!  Basically the College of Surgeons are concerned about this Hernia mesh issue. It is so good to know that.

‘Anyway the article is here. I will leave you to read it, to absorb it, and to try to know that my life might sound awful but I do see the bigger picture. In my case I do not have Alzheimer’s. Whew. And I can still laugh at myself. My son is wonderful,  as are my friends. And I have a magical lover/partner who does not notice my bag, thinks I am brave and encourages me to not see myself as disabled. It is only when I try to walk that I feel disabled, and it is only brief. Cause I cannot let myself go down that path.

Finally I would like to thank the lovely Rosie and Marion of John Hunter’s new Acute Surgical Ward. Talk about wonderful nurses. Beyond wonderful. And then there was the delightful Rory, the resident from Belfast. And the canular technician called in who finally got a vein. Am covered in bruises. Little love bites to remind me of my stay.

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Common Circus Belmont

Yesterday I had a flu shot administered by a medical student under the expert instructions of my GP. We all survived, I still have my arm, though it is a tad sore at the site which is usual.

The student was male which was unusual as we get a lot of female med students and he did an excellent job for a first injection!

I felt in need of a coffee as I always do if I am in the vicinity of Common Circus, the wonderful homewares and coffee shop opposite Belmont Lake.

I have been coming here since I moved into my home in 2015 and really love sitting at the large communal monk’s style table. I blog my memoirs, surreptitiously people and baby watch and chat to people from all walks of life as well as these days assess who is a tourist.

I remember the first time in 2016 when I was asked if I was a local! By a tourist. It was incredible and I felt really proud of my beautiful region. Then I chatted about Words With Friends and other things and yesterday I observed a lovely interaction with some young mums at the table.

One mum had a newborn in a sling which the other mum nursed for her. Her little toddler was hidden by the plants in the middle of the table so I could not see what he was doing. He was very quiet.

I asked if it was okay to take photos for my blog. Assured them it was anonymous and covered women’s health etc and coffee shop reviews! They liked that I think though the gorgeous young mum was concerned she looked awful as was sleep deprived and had no make up on.

You can judge for yourself from the photos below. There were lots of people coming and going. Business types in suits getting their take away coffees. Older people reading newspapers while they savoured theirs. And then the younger ones perched on the stools looking towards the lake.

There is a lovely outdoor area with a communal table and the staff is always perky. And not as a result of the coffee. They are naturally inclined that way! And. They know the names of most of their regulars!

I highly recommend this place, not least for the service they provide but for the way they make use of recycled paper boxes and napkins and cups instead of plates and cups and saucers. Their coffee and food is unparalleled too.

The decor is gorgeous with patchwork panelling and colourful coffee machines. Currently pink. Used to be aqua. I prefer the aqua but that is just my taste and the pink does not nauseate me as it may some people I know. Think fifties kitchens. Pretty.

Five star review. Excellent and has remained so, even improved if that is possible.

Too Many What If’s

My mum and her dog last time we visited in 2010 before dad’s stroke in 2012. I can see here she was frightened, bewidered. But I did not know she had dementia or was being mistreated because nobody up here told me until it was too late to help her.

One of the reasons I had my Ostomy surgery was so that I  could come and stay and help out. If only I had not delayed the surgery for so long. If only I had left my then husband sooner. If only I had known then what I know now. Too many what ifs.

But when I did know I did something. And the timing was amazing. It is what we do with what we have or find ourselves dealing with that counts.