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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Resigned, Not Panicked

Today I went to the local Dental Clinic to have my mouth assessed for dentures. It is a difficult place for me to get to. The local bus that connects has a forty minute wait so I walked up to the shops via Belmont Citi Centre where I had a very nice coffee. Then I popped into two charity shops, scoring three gorgeous jackets for myself and a gorgeous dress too. I made it to the bus stop as the bus pulled up and it was a pleasant trip around the lake to the Dental Clinic.

However getting off the bus was problematic as it was not accessible so did not have a ramp and the driver pulled up right on the road. I tried about three times to get off then climbed down backwards, hoping my good leg would reach the higher curb.

Then began the walk down the really uneven unkempt sidewalk to the Clinic. I asked for a glass of water as soon as I got there as was feeling a bit rattled and the lovely Sarah got me one straightaway.

Then the male dental assistant…a first for me… called me in. I was sitting sipping water and quite well dressed and well presented if I do say so myself, wearing an art deco styled tunic in greens with black leggings and a bottle green tshirt under the tunic. Black sandals and an off white lace cardi coat completed the outfit. So it is always a surprise for medical staff and others when they see me get up and attempt to walk.

This lovely male dental assistant took my handbag and everything off me to assist me immediately he saw me hobbling. He commented that was some incapacity and was it recent. So I explained the mesh implant and how it had entrapped my nerves causing Drop Foot and other issues. Angharad the dentist and the lovely chap were pretty stunned.

My mouth is looking pretty good apparently. Apart from a chunk of bone Angharad picked out after numbing that side of my face with gel. She then arranged for me to see a Dental Technician to have two dentures fitted, one top and one bottom. And also a referall to Sydney Dental Hospital for implants.

I then started to make my way back to the bus stop to return home and found I was having a lot of trouble moving my left leg. It is the one with the drop foot but this was more the whole leg would not work which is the Cervical Stenosis at its worst. Lesson learned, too many dental appointments not good for me and I need to get a taxi or a lift back.

For some reason it reminded me of when my dad and I were in Swansea after seeing his GP and having a coffee in Cozzies. We waited outside Cozzies for over two hours for a taxi. I called and called and not one of them would come down from Belmont to Swansea. I was getting frantic as I could not leave dad alone as he had no road sense due to dementia but I could feel my Colostomy Bag filling up. I was really horrified when it burst open. I rang one final time and let Newcastle Taxis have it, telling them I had a demented man sitting waiting beside me near the Pacific Highway and I had just burst my Colostomy Bag.

Of course dad was horrified by my bag bursting. He said I could go find a toilet but I could not leave him and I could not take him into the disabled toilets nearby as he would be even more horrified if he saw my stoma and what I had to do to clean up the mess.

Luckily a lovely taxi driver who works out of Belmont took pity on me then and was there very quickly and drove us the short distance to Cave’s Beach. He ignored the awful smell and apologised and gave us his card so we could call him directly in future.

Today I waited outside Belmont Citi Centre and again there were no taxis as it was changeover time and the few cabs there were usually picked up schoolchildren from various places. I decided to try to walk home but needed to rest. The looks from people had been horrified as they saw me dragging myself across the carpark.

So as I sat I reflected on the fact that this time I was resigned, not panicked as I had been five years ago about getting home. This time I did not have a demented dad relying on me for everything and who was unable to get the bus or walk up the two hills.

This time I only had myself to deal with. However my precious son came and met me at the Centre. Looking very concerned at my face. He does not have to look at my legs or tummy, he can read everything on my face. I so very much wish he did not know how to. But he has been exposed to so much pain and suffering since we have been up here that he just gets it. And how proud I am of him, the way he went and bought me an iced coffee to sip while he popped to the post office. Knowing that when he came back we would be able to get home without a taxi as there are lots of benches on the way home to rest upon. Which is what we did, he had brought my walking stick with him and I walked on the grass verge and it was a lot easier than the pavement.

Am resting now, thankful for the lesson my body gave me. And eternally grateful to have such a wonderful son.

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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