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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On This Day: A Very Long Time

Four years ago today Angela the Calvary care worker and myself took dad to see a great care hostel near us in Wallsend. It was Jesmond Grove,  a short walk away and  run by Anglicare.

He liked it and did not get upset or anxious but I feared his lack of higher functioning since the stroke would stop him deciding to go in there. It had a personal recommendation from my angel Norma, my parent’s then neighbour.

So it would likely be up to his new guardian. We were having a new Guardianship Tribunal on 9th may. That was two semi formal and stressful legal hearings in less than a month.

Wonder if that is why I was getting nightmares? In both cases two people who had caused me enormous trauma were present and I had not seen either of them for a very long time.

Dirty Sweaty and Dishevelled

On This Day five years ago my then estranged husband came with a police escort to collect his belongings. I was quite apprehensive and my son stayed in his room so as not to see him.

He was dirty and sweaty and dishevelled looking which took me back thirty years to the first years of our marriage when he would have periods being a bit odd and not looking after his personal cleanliness.

When he came through the door he would not make eye contact. He was flustered and uneasy, possibly because the police escort were not buying his little boy lost act that he used to manipulate people. That can be fun in a young boy but not in a sixty year old man. I heard him asking them for a lift in the police car as he had not realised how much clothing he had. ( Bought by me I might add) They did not take too kindly to that, told him to take it all downstairs and he could call a taxi.

He made no arrangements to have his thirty years of gifts, furniture, art and collectibles packed up and stored. The real estate agents said if they were not picked up they would organise a house clearance and charge us for it.

Was very relieved when it was over and he had gone. I did not know this man anymore, and wondered if I ever had. I was then able to think about really gutting the place, taking as much as possible to charity shops before we left so they could help others by making some money out of our things.

Timing Is Everything

In July 2015 I bought a small unassuming cabin with a nice sized garden. The place is Land Lease in that I pay for the use of the land and utilities. This is becoming a popular thing with Baby Boomers who need money for their retirement, or like me have little money after bitter silver divorces. The actual park has masses of huge trees and flowering shrubs which are home to an abundance of bird life. It is a short walk to the lake and near to shops and transport.

I was really excited to move in, apart from being heartbroken that I had to leave the family Burmese cat behind. Chanti and I were devoted to each other, as she was to the whole family. Except we had a special bond due to C and G going overseas and Chanti and I really bonding while being alone together. I truly believe she healed me of some of the dreadful pain I felt after my mother’s death in mid 2014. She is an old cat and never jumped onto anyone’s lap, however the day I was leaving she came running down the hallway and leapt onto my tummy and snuggled close. It was harder than leaving my son, because I knew he had wanted his own place since he was 18, and now he was finally getting it.

I ordered my lounge furniture to be made in teal chenille which would take up to three months, and settled in as well as I could with everything else that had been delivered. G drove the removal truck and with C they moved my boxes that had been in storage since April 2013. I had not brought a lot with me from Sydney, mostly my quilts and my art and quilting books, unfinished quilts and my two favourite tea sets of mixed china. Bedlinen, duvets, blankets, towels, cushions and throws needed to be bought up here as well as dinner sets etc. I was basically starting again, I wanted to leave the near thirty years with my ex totally behind me.

My son stayed in Wallsend, his fiancé in Sydney came up weekends and they visited on Saturdays at first to help me get settled. The garden was neat but not really to my taste so I tidied it while I worked out what I was going to do with it. I found it hard at first to adjust to being alone after living with families and my own family for over forty years but I adjusted and enjoyed the time alone to read and watch DVDs and Netflix etc.

However all of 2015 I had been in and out of hospital with bowel obstructions due to a Parastomal Hernia. Luckily one Saturday in late August my son and his fiancé were there when I had a really bad one. Due to nearly dying and needing months to recover physically and psychologically from the surgery I did not return to my home until November. The garden was in a shocking state and there were so many deliveries from eBay and various stores as I ordered most of my household goods online. Luckily the Park staff once they found out I had nearly died opened up for me so the deliveries could go straight inside.

Eventually I had the place absolutely as I wanted it, a spare room for my son or friends to stay in, which they did. My dad visited with a nurse regularly for tea, weekly in fact. Meanwhile my son had a dreadful experience with a home invasion in his place, people were badly injured who got in the way of the assailants. He came to stay with me until he got up the courage to go back but we were both concerned for his safety. Then he broke up with his fiancé early 2016, Chanti the Burmese went back to Sydney with G and eventually C gave into my nagging and the detectives suggestions that he move out of Public Housing and in with me.

Easter Monday 2016 he moved in with the delightful Robinson movers who service Lake Macquarie. The owner had not realised it was Easter Monday so his lovely wife helped him. They did such a great job, very friendly and professional. When they finished here they took his furniture which would not fit and his excess boxes etc and put them into a Storage Facility for him. C was pleased to be in my bedroom as he had a double bed he wanted to eventually have in there. I moved into the spare room which had recently had the floor replaced and wooden laminate put down after a nasty episode of water leakage all over the carpet under the window. I also pulled up all the lino in the kitchen and bathroom and found a layer of stagnant water there. Once it was cleaned out though the floor was sound and no mould was found. I managed with the horrid old adhesive lino as I knew water could not get under that and damage the walls.

We really enjoyed being back together again, though it was an adjustment for both of us we always get on well and work as a team. Around the same time I got stuck into the garden, holding the left side of my tummy firmly as I did so. I cut back really hard the Lily Pily and had my handyman Alan remove some horrid old Azaleas. There were several good plants that I also cut back and I planted a few Buddleja Davidiis. Removed a lot of horrid cobbling which was not working as a path as it was covered by the Lily Pily. A lovely dad and his two girls came and dug them up for me and removed them. For free! Then the long experiment with what would work as a ground cover started. The ground was shocking, I loaded the soil with Blood and Bone regularly. Tried white ground cover magnolias, mass planted. They died. Then white daisies, also mass planted, all but one died. The most success I had was with ground cover nasturtiums, with sugar cane mulch to germinate them.

So after much rearranging and selling of furniture C and I have blended our things to create a cozy though tiny home. Having our own home has made me feel rooted to the community, helped me destress when things with my dad and his care home became so very difficult. Shutting the door, getting a cup of tea and putting my feet up in our home, because it is very much my son’s and mine now, is so therapeutic. After two years of turmoil and the torture for so many years before that, this is my haven, my peaceful place and I love inviting special friends into it. One regret I have is that I broke off contact with someone after I nearly died, that I did not trust that he would want to be my friend through this. However we have reconnected now and are very close. He is the one of the many voices, and I love him so much and trust him. We are so very good together. Sometimes timing is everything, as we both know so well.

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Much Loved and Safe

On This Day five years ago I had a really busy day in preparation for our move north. I decided to have my “After Suicide Attempt By Family Member Psychologist” session coffee beforehand so that I could get on with the many things I had yet to complete before our upcoming moving day.

Usually I sat in Westfield Bondi Junction food court with my face blotchy from crying through the whole session. I liked to try to get ahold of myself before getting the bus home. This time was the first time I did not cry through the whole session.  As a matter of fact I did not cry at all! I graduated, not in the usual way from a course but in that I completed all the things I needed to in my own mind.

I knew instinctively that we needed somewhere safe to stay, even temporarily, where we would be with people who loved us and knew us and wanted the best for us. Being in an unknown environment in the state my son and I were in would not help us heal, however we had to get away from the possibility of contact with D.

So straight after the session I boarded a bus to Maroubra to return the GPS monitoring device I had been given by Stay At Home Leaving Violence, an organisation that had supported us so freely and compassionately. J the Housing case worker was so happy to know where we were going however she counselled me against staying too long, she said I was in no state to be a carer, that I had to put myself first. She also reiterated her opinion that I would be very good at Advocacy work.

Five years later the Advocacy has become second nature, and about so much more than Domestic Violence. It is Dementia, Mesh, Ostomies and Women’s Surgical Issues. And I did stay longer, because though my need and my son’s need was great, my aged demented parent’s needs were so much greater. And one is gone now, and another in care, and both were, and are, much loved and safe.

There Goes My Open Mouthed Smile

Yesterday I had a tooth extracted. It had broken within weeks of moving up here and staying to look after my mum and dad five years ago. I had some kind of a reconstruction on that molar a few years before that but they told me it might not last. I was eating one of my son’s amazing chicken burgers when I got an excruciating pain in my top gum. I semi shrieked, luckily mum and dad had gone to bed already, or they would have called an ambulance. They knew I did not show pain unless something was wrong and an ambulance was their lifeline.

This was quick though, over with as long as I ate on the left side only. A few days later I got so fed up with the reconstruction flapping around and jolting me with pain when I forgot and ate on that side that I grabbed ahold of it and twisted. It really really hurt but I pulled it out. It seemed like half a tooth. No decay at all and I was left with a complete tooth on one side and nothing on the inside, with the gum sealed over it.

I could not afford either the time or the money that year to get my tooth fixed. My parents were a 24 hours a day, 7 days a week job then. And I was existing on a pension after my then husband locked our bank accounts down after I locked him out of our flat in Sydney due to his bizarre behaviours. Then there was the physical and mental exhaustion at the end of the day and also nobody to look after my parents while I went to the dentist or recovered from an extraction.

I ignored a lot of things that year including diabetes, however I would do it again in a second. My son was ill as well and developed Pericarditis, there was no time for me to be ill. One of us had to present a front to mum and dad that they were calm and in control of everything that could hurt or bother them. And that is what I did, though I did get on top of the diabetes later that year!

So yesterday I had my teeth cleaned, a molar filled and then a very difficult extraction. The tooth kept breaking and shooting off bits of tooth at high speed. My lovely dentist had to push my head to the left a lot to get at the tooth. Unfortunately I have Foraminal Cervical Stenosis on the left side. Quite severe too! When he finally got it out I was a bit shaky in the arms and my feet kept catching as I walked home. I sat down for a while on the way home and gradually covered the distance. Not sure how. Maybe the same way I coped with mum and dad in 2013. By simply putting one foot in front of the other and working towards the goal. In my case getting home and laying down. Chatting on Facebook to dear friends and in real life to my son C and my friend J. The two most important men in my life. And the most caring, considerate men that anyone could have the privilege of knowing. I have been rewarded over and over since moving up here by meeting wonderful people, deepening existing relationships and reconnecting with people I had lost contact with. All this aided by technology. Facebook, Messenger, Words With Friends and Texting. I could not have accomplished or indeed survived 2013 without these things.

I had quite a bad time with bleeding afterwards, it did not stop for some hours until J suggested small ice cubes. I then got to have a look at my mouth and face. Swollen and distorted from the hard physical work of removing something that just did not want to come out! And there goes my open mouthed smile for a while too! After next week I will have an up to date mouth, until I can afford implants and teeth whitening anyway. And then it is on to the long list of health things to address, and get on top of. Not just because I have people relying on me, but because I have people who love me, and I owe it to them to look after myself. And I owe it to myself too, I deserve to be as well as I can possibly be. We all do.