Where I Choose To Be

Yesterday was my late mum’s birthday. But that was not why it was such a difficult day. In the morning I rang my dad in the aged care home. He has dementia, stroke damage and stage four Prostate Cancer and he was very worked up and totally out of it with agitation. He told me he had manhandled and literally thrown a lady out of his room and that her friends had come to help her. Dad had swung at a man who used to be a fighter, who said he ducked. And dad told me he was going to get a man, later on. He has never been fond of people he finds stupid and these people are demented, bless them.

My son and I then set out after lunch for my appointment with Dr Russo of The Hunter Pain Clinic in Broadmeadow. It’s a level one pain service where medications and injections and ablations into and of nerves occur, unlike at John Hunter Pain Management. I went six months ago, found great success with my SFN and other neuropathic pain due to past surgeries and mesh. It is a lovely bus trip by the lake to Cardiff and then a train to Broadmeadow. Unfortunately it’s a long walk for me from the station, I know now to get a taxi from there. Silly of me not to, I was overconfident.

At some stage of the day the AINs told dad his blood pressure was up, probably to try to get him to stop fixating on the men he particularly hates. So he started phoning and when he could not get me he left messages. Three before I wised up and stopped taking the voicemails. Each was worse with him crying, wanting to go to hospital and beside himself thinking he was going to die.

Meantime my son and I waited over an hour for Dr Russo, who was brilliant as always. He said I needed to increase the Lyrica in my Neuropathy cocktail by 75mg. After that nerve ablation of the Femorogenital Nerve and the Illinguinal Nerve on the left side is all that is left to do. He also wrote that I could have a sustained release painkiller, Palexia. All I use at the moment is Panadol Osteo.

The trip home was a long one. To avoid the walk to the station we caught two buses, one to Glendale which was forty minutes and then a bus home which was around twenty. I stopped being a nasty snarly bitch to my poor ever suffering son once off my feet and on the bus and dropped into a ten minute retrospection ending in quite the insight. I have had moments of clarity before but never quite like this.

I was wondering if it was worth it. Really. To have Small Fibre Neuropathy pain so badly that I had needed a walking aid to get around. The pain so unspeakable I found it hard to describe it. And to lose that pain totally for four months only to have it start to return? With no real hope of it ever going or being controlled. More so with the unbelievable mesh pain beside my stoma. Would I have done it if I had known? Would I not have been better to not have that wonderful break, only to have to learn to deal with the agony again?

And yet, if I had not tried the cocktail, I would never have got off the walker, might even have been encouraged into a wheelchair by now. I would not have had the courage to meet up with my man of many voices, not in an intimate way. Would not have started any relationship at all. Talking to Dr Russo I realised how much had changed since I saw him in November. For the good. Life is full of joy for me, despite the pain. Or in part because of it I truly appreciate life and the beauty in the world.

So yes I would have tried the drugs, I would have knowingly tried them even if they had told me they would not continue to work much beyond the six months. Because where hope is is where I want to be. Where possibility is is also where I am meant to be. Where determination is is where I choose to be.

But for dad, my quandary is very different, to hear him at 4.59 this morning. Crying. Because he “does not know what is happening.” The catch cry, especially of the Vascularly demented. What is the point in prolonging his misery? His fear? His degradation? Should I have ever let the specialist put him on the Zoladex which is stopping the Testosterone which is fuelling the cancer? It will wear off by the end of this year anyway but it’s month upon month of agonising fear for my dad, a once proud, strong man. Can I in good conscience ask for it to be stopped? And let the disease take its course?

In other countries he might have been able to choose his death. But dad thought he was immortal and never prepared for old age. Now I am trying to look after us both. Making tough decisions for both of us. Mine is just pain, it will not kill me though the increase in Lyrica will likely affect my memory. But only while I take it. Whereas dad is going to die. A long, drawn out protracted death whereby he slowly withers away. Even now he is dehydrated. He could choose to stop eating at any time. It happens. And I will be here witnessing it, but thankful my mum did not have to. That she was taken before that. She always looked after dad, he was her first thought in the morning. Her duty was to care for him. Her duty born of love. Mine is a different love, but mum knew I would look after him. It is who I am. And who I am is very much someone who questions suffering. Suffering, the kind that does not enrich life, only demeans and terrifies our elderly. Our loved ones with dementia.

 

 

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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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When I Wanted To Crawl Away And Quietly Die In A Ditch Somewhere

In September 2015 I almost died of a parastomal hernia which had been trapping my bowel over the previous six months or so. A Stoma for a colostomy, Ileostomy or Urostomy creates a weakness in the abdominal muscles when the stoma is formed

I had my Ostomy surgery in mid 2012. The day after my Mother In Law’s funeral. Almost immediately the stoma receded and I had immense trouble getting a system to fit. This is usually the first warning sign of a parastomal hernia. It look many months of the Stoma Nurse, my Ostomy Support Groups on Facebook and myself to brainstorm a solution. But it was never right

Over the next three years I had horrendous pain near the stoma. In 2015 I was in and out of hospital for bowel obstructions repeatedly. Having the dreaded Nasogastric tube inserted to decompress the bowel

August 2015 the long anticipated wedding of my best friend’s daughter arrived. My son and I stayed with his fiancé in Sydney and we feasted and had a wonderful time before and after the wedding

I had bought a special teal jersey dress which had an attached coat front as I was so conscious of my swollen tummy. But had no idea what was about to occur. A few days after the wedding I had a small really small fish burger my son cooked. And I belched before I had eaten more than a few bites. My son tried to get me to eat it but I just could not. The next day we returned north. Myself to Lake Macquarie and Chris to Wallsend

A few days later Chris and Gen came over as usual on a Saturday to help with my food shopping. By then I was barely eating. Though they bought a Jamie Oliver Lemon Pie to tempt me. After they had been there an hour I laid down on the bed to try to hide the waves of intense pain from them. Soon after I started vomiting disgusting brown stuff. Chris was running around trying to find something I could throw up shitty vomit into. No luck! I had only moved into my little cabin a few weeks before and did not have many things there yet. In the end he used one of my new Corelle cereal bowls. We have not used it since!

They eventually talked me into staying with them in case I needed to get to John Hunter Hospital. On the way I asked them to take me to Emergency. They quickly found me a wheelchair and the Triage nurse took one look at me and somehow managed to find me a bed

I will not go into the details in case something similar happens to you. What I will say is I panicked. And I do not give up easily but I just wanted to find a ditch somewhere and crawl away and die. I had already sent Gen and Chris home as I did not want them to witness anymore of the horrendous suffering. Massive waves of pain like my Stoma area was being ripped apart. Alternated with vomiting noxious bowel contents. Almost asphyxiating on them as they had not inserted the right size NG tube. And they had not turned on the suction. So basically I was vomiting myself to death as my large and small intestine were kinked inside the very small area of opening behind my Stoma

I had one on one nursing care for over eight hours. Dreadfully, dreadfully ill. Four or five days later one of their top private surgeons operated on me as an emergency and he did an unusual procedure whereby I had a scimitar shaped wound under the devices I wear for the Colostomy. And under the wound and in the abdominal wall he inserted MESH

Two years later I have a Drop Foot, weakness in my legs and trapped Femorogenital and also Ilinguinal Nerves. As well as a trapped Pereneal Nerve. This causes horrendous abdominal pain. Hours on end every few days. Much like when I nearly died in 2015. I have been Cat scanned. No obstructions. No hernia. It is the MESH. It bonds with anything near it. It traps nerves and severs them. It causes horrendous injury to so many people and yet it is still being used today

I was fortunate to see a Professor of Neurology who admitted a lot of my issues were likely the mesh. That is highly unusual as there is usually a conspiracy of silence and of intimidation of patients. A few weeks later I saw a Pain Specialist and he confirmed nerves are trapped. He gave me a drug cocktail which remarkably is helping the nerve pain in legs and abdomen. However I will need breakthrough pain meds and Surgical Ablation of these large nerves yearly

In 2015 I asked if the mesh was safe to use. Even when I was readmitted to Hospital with sepsis a week after I had returned home, the surgeons were not saying anything about the mesh. Then on a Saturday a youngish British born surgeon came in for the second time. He sat on the bed and said he had a very bad feeling about this. He said these things go horribly wrong. He was very very strident about getting it reversed.

After he left I burst into tears. I had been through a really traumatic event. A very painful surgery and was facing a removal of mesh and a bigger op to repair hernia? I returned to my son’s to recover the next day. With three months of antibiotics.  A week later I saw the stoma nurse and the surgeon who operated on me. He asked why he had not been informed that I had been readmitted with an infection

He then examined my wound which had quite a bit of infection draining still through areas that had opened to release it. He reassured me the infection was below the mesh as the wound was so deep. So no issues. Yet he arranged to come in for my next checkup on a Public Holiday. I saw him on the ward which was also highly unusual  he also said I could stop the antibiotics

It took six months to recover properly from the surgery and infection and then I started having similar waves of pain to the left of my Stoma. Where the mesh is. Long story short the mesh has caused horrendous pain and suffering. It has cost me my ability to be as independent as I like to be. I am fiercely independent by nature. Hate with a passion being seen as ill or different in any way. For over a year I had to use a walker to get around. Was even contemplating giving in and getting a wheelchair

The Nerve cocktail of Cymbalta and Lyrica in low doses is working miraculously. I can walk again. Still cannot stand for long periods. But the improvement is nothing short of life changing. My memory is much better. I am sharper now after reducing the huge doses of Lyrica I was on. What is surprising to me is that I had no idea how much pain I was in. My son knew. He caught me in an unguarded moment. And was horrified of what he saw on my face. The Neurology Professor was right when he was brainstorming why I was having trouble walking. Imagine being in so much pain you just cannot walk. It’s astounding even to me

I have recently joined some proactive groups on Facebook and their blogs. Things are changing. New Zealand has banned all mesh. Senator Derryn Hinch is supporting banning of Transvaginal mesh. The next big wave of Lawsuits against the Mesh manufacturers is going to be Hernia mesh like mine. I will be joining the class action lawsuits as the ONLY way to stop this is to hit them where it hurts

Unfortunately what we have discovered is that a lot of younger surgeons do not know the older methods of operating without mesh. It’s a nightmare for so many already affected people and we need more visibility to protect others from having mesh. It is possible to have surgeries using “own tissue”. If one can find an older surgeon skilled in this

My mesh is unable to be removed now. No idea what the future will hold. Any bowel obstructions I do have to go to Emergency as this is really dangerous. However the freedom after over two years of agony and weakness has fostered in me an embrace life attitude. Because we do not know how long we have here. We should not waste a second of it. Be brave. Embrace life head on. Instead of saying “why me” I say who else can I help with this problem? Who can I save from this disaster in the making? It works for me. I am quite content with my life now. Acceptance of my condition while fighting to protect and support others is key for me. Everyone is different however.

 

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