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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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.

 

Ever Spreading Tendril

I had an appointment today with my dentist. As I was almost forty minutes early due to the strange timetables of Newcastle buses I popped into the coffee shop that I have had my eye on for a while.

Big mistake. Though the lovely Lisa the proprietor was well intentioned she is basically deluded. Anyone who thinks they can repair mesh damage, namely a drop foot, with antioxidants is totally out of their mind. And dangerous to the unknowing, the uninformed, the people finding their lives unendurable.

So good to know that her 80 year old husband who is twice her age is as fit as her. I mean would he dare be otherwise? I tried to explain it was not age related or arthritis related. And that my medications are a necessity not a foolish luxury like the antioxidants. But I know a lost cause when I see one.

I managed to get away and limped, trying not to dammit, to my dentist. Where I had a longish wait. Somehow, and am incredulous as to how this keeps happening, one of the receptionists told me she has a TVT (trans vaginal sling) and was very interested to hear how I became meshed up.

I was able to give her Professor Vancaillie’s name, explain everything to her and encourage her to get a 3D Trans Vaginal Ultrasound. As only around 20% of cases cause issues it is good to know if the mesh is still in position, and to get a referral to discuss options with a Urogynaecologist if needed.

She was very open, informed and intelligent. Asked me how my bladder surgery was done using my own tissue and also how the rectoceles were repaired also using my own tissue. So perhaps the situation with the unknowingly ignorant Lisa was meant to be? Or perhaps the Sisterhood is indeed an Entity, with many tendrils, spreading out around the world to share, to inform and to protect women from being mutilated, butchered and meshed up. I thank God, The Universe and The Sisterhood and am indeed humbled to be part of this ever twining tendril spreading around the world to release and protect fellow sisters from ignorance and cruelty.

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Control

I have some thoughts on control. For us ladies. And not the bladder kind of control so many of us have trouble with after childbirth or as we age! The control I am talking about is control by a male partner of a female partner. Specifically by males, though I know it can happen in many diverse families. I am talking about intimate partner control.

In my case I realised how controlling he was after realising that he always spoiled my enjoyment. My friends were scorned in private though made a fuss of when met out or at our church. Though come to think of it I only had acquaintances at church.

And that is another big thing, my friends in latter years were diverse. Multicultural. Multi or non religious. Gay straight transgender. Really diverse.

He scorned them. I remember once after a fabulous family outing with my bestie and her children (we used to meet with all the kids twice a month and birthdays etc) he scornfully said to me that he had never met anyone who “loved” people so much. As if that was abnormal.

These were friends whose children I have known since my son was six. I have known her son since he was born. I am his unofficial aunt. Godmother. He stood up at his Bah Mitzvah and thanked his aunty and I for accepting him. Encouraging him and having the biggest impact on his life. His mum asked his dad to say in his speech that she could not have got out the door without my advice on outfits and general support.

But that is what friends do. Family friends especially of Jewish and Muslim faith and of different cultures are very family oriented. Their friend’s family become their family.

This did not suit my then husband. He wanted me all to himself. I worked it out after a while and simply stopped telling him what I was doing and with whom. The nastiness after taking D to museums and movies was too much. And I was not going to allow it to ruin my friendships or my memories or most importantly D’s and my enjoyment of exploring culture in all its forms together.

My friendships had become so precious to me. My son and I were in a lot of pain which limited a lot of things and I loved to hear normal stories. Kids going to school. To uni. Starting work. All things my son could not do. Though I assured him I thought he was really going to come into his own in his thirties and forties. Health willing.

One deep regret I had and which I have reconciled myself to is that my issues in regard to needing a colostomy led to my not being able to visit my parents for three years. I asked them down but they never came. I now know mum had Alzheimers. She could not cope with the drive or unfamiliar surrounds. If only.

Two words. If only I had been able to go I would have seen it. But my then husband would not take me. Threw tantrums if asked. He had had a “breakdown” mid 2000s and used it to control me even more. Luckily our son had a relationship then and could get out of the flat. I was trapped literally

My legs had not been good for many many years with hundreds of electric shock pains. I could not get up our three flights of stairs easily. So I had to choose my days to go out. Usually three times a week. He would NOT move us. Though he told his family when he visited them in UK many times that we needed to move. So I could be independent. They agreed.

Utter bullshit from him because I realise now he wanted me trapped. He wanted me to see no other people but him. To have no friends over. To totally hand my life over to his control. I would not have it and he got nastier and nastier.

So I managed my relationships with my friends who had always been my family in lieu of any genuine real interest in my life and my son’s life from my own. And I let mine down. Because no matter their neglect of me they loved me. And I have been told by aged neighbours who are now my friends that I was the one child my parents never worried about. Because I was sensible and no trouble. And later in life the strongest one of the three.

There has been a lot of media stories on abuse in the church. I wonder how many women like me suffered sexual abuse? To me to deny someone pleasure is real abuse. To not offer intimacy purposely is abuse. To control in any form another is abuse.

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Symbolism

My friend told me that this rare beautiful Swallowtail Butterfly is my mum. Coming by to tell me she is with happy with me.

I was not one to think such things but then I remembered the eagle, on the day and time of her cremation. Perhaps our loved ones can show us these little moments of pure joy. Or the universe or whatever one believes in. I believe in spirits of people, the soul. Anyone who has seen a loved ones lifeless body knows their spirit is gone. And their spirits cannot be held back by mortal bodies.

The blue butterly has been back a lot. I even managed to capture it on my iphone, nearly falling into my buddleja to do it! It was fun and a challenge.

It is pouring with rain here at the moment so no butterflies in sight, however rain is a great time for reflection, for cosiness, for looking at photos and reading. Snuggling down under the covers and watching dvds. It is what I intend to do. If you have someone to snuggle with all the better. But it has to be the right someone.

I am having issues with fending off a really sweet chap who lives near me. Honestly do not know what to say to him when he asks me out. It is only a matter of time.

I could try the platonic friends only thing, or the celibacy thing, but I actually would like someone to cuddle with, snuggle with on a day like this.

I have never been one to settle for anyone, there has to be a spark of something. And that spark can be painful for me. If I am attracted to anyone then I get Spontaneous Orgasms from my surgical scarring. I am seriously thinking that Celibacy might be the way to go. And that would mean no touching by others. This chap keeps stroking me. My arm. My shoulder. Lots of stroking and long gazes into the eyes. And I am a toucher. It is how I show affection. So I guess platonic friends could snuggle, if there is no spark it should be okay for me, no nasty pelvic spasms to embarrass me.

I could use my mum right now, in whatever form she should choose to take. I know I could tell her everything and she would understand.

Its not easy dating again after over thirty five years. I love Frankie And Grace on Netfix. I am not sure which one I am like. Neither I guess but it would be fabulous to be like them. But I guess they have the necessary parts. I mean how do I go about telling a chap I am not in full working order? That as well as that I have an ostomy and everything that goes with that.

Mum could not help with this actually as she did not know about the ostomy. Or the so called deformities. And defects. I protected her right up to the end.

Secrets

On This Day a year ago I went to visit dad in his care home in Newcastle. This involved two buses and a fifty minute wait between buses which was an excellent opportunity for a coffee and toilet break. Needed after the gigantic coffee I always had!

I was having a lot of trouble walking due to then undiagnosed Short Fibre Neuropathy  And was using my heavy trusty convertible wheelchair / walker to get around. That did not help my hands though, and I often look really clumsy however it is the SFN. I was enjoying my lemon tart and the fork just slipped through my fingers. A regular occurrence. I thought it best to hold the cup with both hands!

Sitting outside, the breeze was always welcome and I love to have coffee by myself so that I can soak in what is going on around me. Not everyone has the time and I treasure these moments, alone yet in company.

After that I popped to the disabled loo in Myer, checking out the fashion for ideas to buy friend’s outfits for special events. I find them on eBay for a fraction of the price but need to see what is current. Once in loo I completed my business by taking my usual bathroom selfie as Proof of Life.

Yet again Myer had not repaired the lock on the disabled toilet door. Many a time I have been completing ostomy business when someone walks in. They are always more embarrassed than me. There is also no rubbish bin there to dispose of the products I use.

Soon I was on the next bus, hefting my heavy walker on and then off, with no assistance from the driver. Once I had walked up the short road to dad’s care home` I put on my bright face and found dad sitting in his chair, crying. I walked around in front of him so he could see me and asked him what on earth was the matter. He said that he could not get his shoes on properly and it really hurt to walk.

My dad is really tough, he cries from stroke damage but not from pain or illness so I knew I had to get to the bottom of it. I asked him to take his socks off to show me and I was astounded at how he had been walking at all.

I told them weeks ago he had an ingrown toenail and that it was infected. I was furious but did not want to upset dad more so we went to have a coffee in the dining room there.  We usually went shopping and had coffee out but there was no way he could get down to the shopping centre with that toe.

Perhaps it is what caused dad to open up to me. Because he knew I would not rest until I knew his foot had been seen by the GP and the NUM. At some stage, in his room, he shared something that he had never shared before, with anyone, not even my mum. He told me when he would not do what his sisters wanted, which was agree to sell the family home and split the profits amongst the family, that one of them said she knew a secret that he would not want to come out.

Dad told me what it was and it was so sick, so undad, so nasty and hurtful that I knew just where it had come from and why. A way to try to shame him into doing what this sister wanted. Though it was untrue. Dad sobbed as he told me. And kept saying he did not do it.  I got right in his face and told him that I believed him. That I knew he would never do that and that this person was evil, or sick, or both. Much like my sister. I then gave him the longest full body hug where I could feel him stop crying, and calm right down. It was one of the most amazing, privileged moments in my five years up here, and there have been a lot. 

After another half hour or so of distraction I left him, he seemed much lighter and would not stop hugging me. When I arrived home about two hours later I got myself a very strong cup of coffee and reflected on my day. Days like that made everything worthwhile.

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