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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I Never Want To Feel Like This Again

Today was the fourth anniversary of my mum’s death. It is always a very hard day for me. I was so unprepared for her death. So unprepared for her new life. I needed more time. And today time is all I had. And memories. And photos. And more time. Sharing photos and those memories to Facebook. My friends doing their best from a distance to make me feel better. I have the best friends. The best network. The absolute best son in the world. And a wonderful partner.

However my partner was unable to be with me today, even for a short time, as he had a previous commitment to a weekend birthday bash. A sleepover one filled with all sorts of people, interesting and average and quite a mix of ages. And some of his family.

Usually we communicate throughout the day fairly regularly. And we say good morning and goodnight by telephone, a prolonged goodnight, over three hours last Friday night. Perhaps I should be happy with the time we do have together, such as last weekend where we had a fabulous, romantic weekend away together.

But I am cursed with wanting more. I did not have enough time with my mum, I am conscious of time and how things can change in an instant. I want more. I want to meet all his kids, his grandkids, his friends. Have heard so much of them but they seem to be denied to me, for now anyway.

Earlier today I was interviewed by ABC Newcastle about my Hernia Mesh. I have been in hospital again this week and it was stressed to me that I should really come in with all my bowel obstructions. I hate it though as they seriously cannot get my veins and then there is the dreaded NG tube. So I treat myself at home, always ready to go to hospital quickly if the pain worsens or if I start vomiting. As it did in 2015. It is serious and not to be messed with.

The reporter was fantastic. I have met her before. We did this over the phone as she wants to get this report to go National ASAP. We had a good talk then she did the thing where she said she wanted to know how it really affected my life. So I told her. She is excellent in getting to the absolute heart of the subject.

And it is one of the reasons why this thing about time is so important to me. To grab life now, because I do not know if this will kill me one day. I really don’t. And before then I want to see all my friends and meet my lover’s family. And not feel like the other woman. Because that is how I have felt all weekend. As if I am someone who cannot meet most of  his family. Must not let his family know we are together. That his obligation to this female friend exceeds his obligation to me.

It might seem stupid to him but it is how I feel, and how most women in my position would feel I believe. I have given myself heart and soul to this man, and maybe that was wrong. Anyone who cannot be there or even find the time on such a day as this to let me know he is thinking of me, of my son, may not be worth my love. I have a lot of thinking to do and we need to talk. I never want to feel like this again. I need that to be very clear.

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.

 

 

Mother’s Day 2018

Wishing mum’s everywhere a truly wonderful day, while thinking of the people who no longer have their mothers. There is also the unspeakable grief of the mother’s who have lost their children. I know a few and my heart goes out to them. Usually I find they are the first to wish me a Happy Mother’s Day.

This is the first Mother’s Day since 2014 that I did not cry when I awoke. My mum passed away mid that year. I never thought I would be able to get over the unrelenting grief but life is full of possibilities. It goes on regardless of our feelings or of what is happening in our lives.

I had one Mother’s Day with mum in her large home, just before she went into care and one the next year, where we spoiled her rotten before celebrating our own little family. I bought mum a beautiful aqua boiled wool jacket which she wore for one outing with me after that. She died suddenly a few weeks later.

I have added some photos of my mum throughout her life. She was full of fun and cheeky at the beginning and end of her life and I was truly blessed to share those years with her.

Nothing Short Of Magik

A few weeks ago I wrote a post about my man of many voices. I sent him the post as he is my First Reader and I value his reactions and help with editing.

The last time we had seen each other we had lunch at my friend’s house and after that J kindly drove me home. This takes about ninety minutes via the coastal route and was wonderful as we had both lived and enjoyed that region when we were young.

On the way we looked at the houses we had lived in then. Mine with my parents and brother and him with his wife and children. They were a few streets apart. I was also honoured to be shown his brother’s grave nearby. He had died in a car accident when they were both in their twenties, shortly after they migrated here from England. I was very moved and embraced him. He was trembling and I held him for a long time and massaged his chest, where I could feel his heart beating. Very hard. I kept my hand there until I thought he was more composed.

My son was home when we arrived and we all had an enjoyable time together. When J left he kissed me for the first time. I was so stunned I instinctively turned to my son and mouthed he kissed me! One reason I was so stunned is because its over twenty years since I was kissed by a man out of affection. And I was married for a lot of that time. So I thought I had forgotten how to do it.

We arranged to meet up again the next week on the Wednesday, this time without having lunch at my friends. She is wonderful but it was hard to have any time to talk to each other there. My friend H drove me down to Gosford as she works there three days a week. She dropped me off at Hungry Jacks in Gosford where we had arranged to meet. H and I had toasted sandwiches for breakfast and H waited as long as she could then she went off to work. I waited and then J texted me that he was at a different Hungry Jacks!

He soon arrived and we went back to his place, which I had not seen before. It was exactly him. Books and dvds and sofas galore. Lush green rugs and various pieces of art which had special meaning to him. He showed me over the flat and pointed out the huge sofa where his adult children slept when they came up and where his daughter’s room was. It was very spacious, with lots of furniture but still felt as if it was sparsely furnished. Quite a hard thing to do. Perhaps because its quite a big flat, indeed my entire cabin could fit in his lounge room!

We shared a pot of tea together on the sofa, looked through some photographs of his family in the UK and chatted and were very relaxed together. Then he stood up and said lat’s go and get comfortable shall we and disappeared to his room. I sat there wondering what was going on then followed him. He was laying down on the bed so I followed suite. No idea what I was getting myself into. He put his arm around me and we kissed then he took his shirt off and said that was better. We kissed and fooled around a bit and then he took his shorts off. I took my tunic off and eventually my bra. After a while he went to put the radio on and came back and shucked his sexy aqua under shorts off.

I was a bit bemused by then but willing to go for it. I still had my leggings and undies on, mostly to cover my bag and fat tummy. They obviously got in the way so eventually and excruciatingly self consciously took them off and snuggled into him and he sighed that that was better.

He was so gentle, so considerate, so giving and every step of the way kept telling me everything was in my control. My choice. That he wanted only to bring me joy. He massaged me with Nivea lotion and most tenderly brushed my hair from my face.

We explored different positions as we were not even sure if we could have intercourse due to my scarring and so called deformities and defects from childbirth. And the last time I had sex was with my husband and basically rape while I was recovering from surgery in 2000.

Eventually J asked if I had brought lube and I said no as I had not been expecting anything to happen. He said I had spelled it out in my blog post the night before, where I said about making love to him. I said I meant much later, when I lost my inhibitions. He said well then I was very, very brave. He says that a lot. In a kind of awed way. Whereas I think I am impulsive. But with this man I trust so much it is safe for me to act impulsively, on my instincts.

He is gentle though passionate, kind though brutally honest and a loving partner yet still an individual. I am madly in love with him and I also love him. Two different forms of love but together, deep and exciting.

Since that day we have made love many many times. We found a way to get past my scars and imagine the surprise of finding a fully functioning vagina behind all the scarring. And no pain. It takes a little longer and a few weird angles but we are fine with that. The cuddles, the massages, the caresses are magic and once we go to bed its hard to stop. Though we managed to last week, we went out for a meal afterwards and I think the glow was there for all to see. The afterglow of an afternoon spent loving each other’s bodies and the glow of love we have for each other.

We are also trying new experiences. Unfortunately we were caught by a hiker in the Watagan Forest a few weeks ago when we started making out but we managed to get naked together later in a much more isolated spot. J on the picnic table, me worshiping his body with my mouth. And later we tried to make love leaning over the picnic table but J kept slipping backwards into the dirt. He never said that my movements were knocking him backwards! We have some practice to do on different positions due to my surgeries and are so up for it.

After a largely loveless marriage since 2000 for myself and also a bad marriage for J in the past we are not wasting any time. We are juggling opportunities to get together. We love our time exploring each other’s bodies but also love the region where I live and have been exploring it.

Lake Macquarie is magnificent and its beauty has healed me in so many ways. Now I love someone who has history in the area where I grew up and also where I now live. And I have history where he now lives. Synchronicity. Its an incredible thing to feel like you are meant to have met someone before. And to actually meet them at this stage of our lives. Well its nothing short of magic.

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.