Delightfully Relaxed and Friendly

A few months ago my partner J drove me to Newcastle Airport so that I could fly to Brisbane to visit my high school friend, It was my first holiday in many years having not flown since 1991. I also found the experience very different to my time as an Ansett hostess in 1975/1976.

The Virgin crew were very good on the ground at Newcastle Airport. They assisted me via hydraulic lift to enter the airplane and the same on debarkation. While waiting for the lift at Brisbane I disclosed I had not been back to Brisbane since I lived and worked out of there as an Air Hostess for Ansett in 1975. The team leader promptly told the Captain and they all escorted me off the plane, chatting about the changes as I was wheeled to where my friend was waiting. The team leader was keen to meet up sometime to talk but I did not have my wits about me. I need to get some cards printed up so that people can contact me as it will make it easier, especially when advocating for people.

My friend was waiting for me, it was so lovely to see her again. It was a lovely drive to her home and so precious to spend time with her. She was on half yearly break and also needing the holiday. I met her wonderful daughter and we three went to The Bee Gees Walk which was amazing. I felt terrible for them though as my legs are so weak now I could not walk very far and had to sit a lot. However in the car I was fine and it was a wonderful trip there. We passed Indooroopilly Shopping Centre, a huge complex which we also visited on my last full day there. We also passed Ikea. Now I know where my Brisbane based friends are when they say they are shopping at Ikea.

Another day we drove to Morton Bay Shire and I adored the country town about an hour inland where L took me which had fabulous antique shops and galleries etc. I bought fudge from an antiques shop, after a long lunch with her and her friend. L bought some charming Wedgewood dessert plates from there. We then went back to her friend’s rural property where I met her family. It was lovely to see the family’s alternate lifestyle and be with fellow upcyclers etc.

L has committed to buying nothing new for a year and in that vein we went to many many fabulous charity shops. Amazing clothing in all the top designers was found and I hoped I could manage to get everything into my suitcase when I left!

I had one disaster with my colostomy. I had shockingly rapid output one day and I just managed to get to the toilet in a small shopping centre. The disabled toilet was huge however it had no surfaces for me to lay out my supplies and wet wipes etc, so disaster struck. It took me ages to clean up the toilet and floor etc and my poor friend was patiently waiting outside for me. After checking my clothing I considered myself lucky it did not go on there and then we launched ourselves into food shopping upstairs in the centre. Me holding up a quite a queue of able bodied climbers! However I found everyone I met there delightfully relaxed and friendly.

Straight after we had an appointment for tea at a friend’s Persian restaurant. On the way in the car I kept smelling poo. I checked my hands. Peeked into my leggings. Nothing. I scrubbed my hands with sanitiser but it was still there. After saying that it must be all in my head my friend started to smell it too! We were at a loss. I sprayed lots of my Frangipani perfume to cover it up and we went into the restaurant.

L introduced me to her lovely friend and we tried to decide what to have to eat. Eventually we had coffee and tea and decided on taking food home for dinner. We grabbed our bags, car keys and sunglasses and made our way to the car. I clambered into her car and buckled my seatbelt and when I went to put on my sunglasses I smelled poo. Yes….there was a blob of poo on my blackish brownish sunglasses. After screeching with horror then laughter I attacked them with my disinfectant wipes and we tried not to think of the sunglasses on the restaurant table for all that time.

When we returned to L’s house I texted my son, asking him if he could guess what had happened. I texted in short sentences building the drama. Of course he upped the ante by answering in funny memes of horror! It was storytelling at its finest. I sent that all on to my partner, though he loves words he also loves the way C and I are so alike and so bonded, even in our humour.

We had many wonderful meals at L’s home. A fabulous curry courtesy of her fabulous daughter E one night and L’s homemade soup another. The mornings were a great time to relax and prepare for the day. During a couple of the days L had some alternative medicine treatments while I op shopped to my heart’s content. When I was finished I found two great coffee shops in the trendy part of town. One vegan type one was so popular that police teams came in for their lunch. The other was a Coffee Club which had a distinct Queenslander feel to it. It had a huge outdoor room on the pavement and I commended them on their Disabled Toilet being Ostomy friendly.

On the last day we popped over to Indooroopilly Shopping Centre for a bit of shopping and lunch in the food hall. While we were there I received an urgent voicemail from the manager of dad’s care home. She said that my estranged brother was saying that he was in charge of dad and he wanted all his ID and paperwork so that he could move him to near where he now lives. She had managed to stop him but was very concerned. I told her I would be back the next day and the rest of the afternoon, my last day with L was spent making phone calls to see what could be done to stop this happening.

The next morning L dropped me at the airport and I made my way home. Waiting at Newcastle Airport for me was my lover, my friend, my companion and my partner. All four rolled into one. We had a glorious drive back, after watching the Airforce aircraft taking off just over our heads at Williamstown.

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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.

 

 

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.

Something Needs To Change

On May 9th four years ago we had another Guardianship Tribunal. This one was brought about by an inexperienced supervisor at Calvary Care, and my sister, who both believed my dad when he said I had finished with him.

I had finally moved out a few weeks into the new year after he hit me on the arm with the phone because I was not quick enough to do his bidding. Which was talk to the NSW Trustee and Guardian about his money.

He had been become increasingly aggressive to me on Monday mornings. He expected me to drop everything at 9am and act as his unpaid secretary. As well as his unpaid carer. There would be at least five supposedly urgent phone calls to make for him. Most of the people I rang could not make head nor tale of what he wanted. So he expected me to translate for him.

On this Monday morning I checked into Facebook while I had my morning coffee and found one of my most admired friend advocates had lost her battle with bowel cancer. She was only in her early thirties. A lawyer, a future local politician. A wonderful advocate and friend.

I asked dad for a break so I could grieve for her. Collect my thoughts. Pay my respects. Contact her mother. But he would not have it. He kept coming in, jumping up and down with rage. Then he hit me on the arm, not hard but as if I was a piece of furniture he owned that he could do that to.

I quietly said dad I have just lost a friend. A really good person who was incredibly loved and loving. And was at the start of a remarkable life. I told him that I could not put up with this anymore. I just could not.

I went upstairs and grabbed a few things, I already had some clothing at my son’s place. As I walked through the garage I told dad I would be in touch and would continue to arrange things. He just sat there and looked out to sea.

I found out later he did not visit mum that afternoon in her carehome as planned but went in person to the Trustee who could not really deal with him without an appointment, and an interpreter.

The next day the Calvary Supervisor rang me and was extremely rude and hostile. Said she would not be dealing with me in future and was filing papers for a Public Guardian. I was extremely annoyed with her for accepting a demented violent person’s word for things instead of his previous live in carer. And for her judgemental attitude. She knew nothing of our family background, of the state mum was in before dad’s stroke and indeed of the state of paranoia dad was often in. She simply accepted dad’s word that I had finished with him.

Within some weeks she had resigned and was replaced by an extremely competent supervisor, B. Between us we worked out a very good plan for aides to look after dad each day and for me to visit him during the week. And we arranged that I met him on Mondays in Newcastle when we visited mum together.

Everything ran smoothly and on 9/5/14 we went to Tribunal. My sister requested security guards and for me to be sworn in, because apparently I am such a renowned liar. She screamed over the phone that I had abandoned dad and she wanted me to be banned from anything to do with him. Dad was asked if he he was okay with me being appointed Guardian and he said he had nothing against me. It was not even damning with faint praise!

The Tribunal appointed me Guardian and appointed an accomodation Guardian after B said that dad’s needs could not be met in the house anymore. They were too complex. My sister screamed some more and hung up the phone link. A male Guardian from Gosford phoned in and had a talk with me on the open link. He reassured me it would work well.

As we left B said this shows the Members saw your good character Kate. Its obvious to everyone involved. I thanked her and dad went off with his caregiver, barely looking at me. One of the Tribunal Members came around the tables and said it was so lovely to see me again and to see how well dad was looking. She was the Social Worker Member I had met before.

I left the Travelodge Newcastle and found my way back to Wallsend where I was staying in a tiny box room in my son’s Department of Housing flat in one of the most dangerous blocks of flats in Newcastle. Ice Usage, Violence, Domestic Violence and General Bad Behaviour was an everyday occurrence there.

And yet I felt loved, safer and more at home there than in dad’s million dollar tri level house. I say house as without mum in it it was not a home, had never been a home actually.

I am writing about this today as dad is again asking for a Guardian to be appointed. Even though we had a Tribunal two months ago and nothing was changed. Except I am about $1000 out of pocket for lawyers and specialists fees which the Trustee will not refund me.

I really do not know where to go from here. I feel so overwhelmed when dad is horrid to me. When he is threatening and demanding it brings back my feelings of helplessness as a child and younger adult. I am no victim and do not want to feel like this so something needs to change.

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.

Sharing The Joy

On This Day five years ago we left Sydney and everyone we knew to stay for a little while with my parents while we worked out where we could afford to live.

Five years later and we are a little further north of where they were in Lake Macquarie City. Mum has passed away and dad is in a brilliant care home very near us. Their house is looking great as the new owners are engaged in living in every room. Very different from the reality of Alzheimers where my parent’s lives had shrunk down to a bedroom and a combined kitchen dining area and sitting room, on one level of their three storey home.

My parents had just been released after spending many many weeks in hospital in April 2012, They had been left at Belmont Emergency Department by my sister who had looked after them for the previous seven months or so and had decided that she could no longer cope. This happened without my knowledge until my uncle let me know. My parent’s State Guardians did not even let me know.

We had no idea of their condition as we had spent so much time trying to get help for my then husband since Xmas Eve when he first told us he had wanted to jump off the Gap. We had also been unable to visit them while my sister was there as she was being vicious about my putting in papers for Guardianship for my mother. The hospital social worker in July 2012 had put papers in for my father after his then life threatening stroke and I was advised to do the same by ACAT and others. I was actually talked through the process in 2012 by the ACAT nurse assigned to my parents.

We were already traumatised by events in Sydney, leaving behind both good and bad memories there and to see mum especially like that was, well there are no words. She recognised me though and started crying bless her. Within a few days I had taken them to their many doctors and met their State appointed Guardians. Also many many lovely carers. Karen and Helen especially were brilliant and now are much treasured friends.

We were all taken to Cessnock by my brother to see his family and look at a house we were offered by the Department of Housing there. C had received a text as we travelled north to Swansea about the house actually. It was not suitable as it had too many steps and was in the Ice Capitol of Cessnock but we had a wonderful day catching up with my nephews and nieces.

It also clarified for us that we could not be that far away from my parents. After that I did not have time to dwell on anything. Looking after two demented people in a three storey house was not easy but somehow we did it.

Good indeed can come out of bad. Sometimes it seems that one cannot go on. Life can change in an instant. Putting my red lipstick on, gritting my teeth and just getting on with things when it seems it is impossible is second nature to me. Now however I can smile and enjoy getting on with things.

Life is so calm and peaceful here by the lake. I have reconnected with so many friends and made new ones, deepened existing friendships and now have a wonderful man in my life that I both am in love with and love. He is my best friend, my writing mentor, my life teacher. And such an unexpected gift of pure joy. Life is constantly evolving and I am so thankful for the lessons I learned care of dementia.

To live in the moment. To cherish those I love and to take time to visit them and show them that love in action. To take time to share the joy with others, who knows what it might mean to them? We did not know what was going on all those years we visited my parents but know that they were loved and treasured by so many people up here. I would like to think that I am part of the community, that I can be of use to others. The way strangers were so good to me five years ago.

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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