On This Day five years ago G and my son and I had a great shop at our local Vinnies in Swansea. We stocked up on lots of clothes for Mum as we knew she would need a lot for when she went to Respite in the Care Home. She needed warm clothing, nightgowns and dressing gowns and shoes and slippers.
She loved cardigans, indeed one day a gorgeous softest silver grey boucle cardigan arrived for me from eBay UK and when mum saw it she beamed cheekily and grabbed it and said its mine. Of course I gave it to her instantly. As she had with me as an adult. She would literally give me the clothing off her back. Come to think of it I got that from her as I do that too!!
Shopping was pretty exhausting as we trotted off to Coles to stock up on food for the folks. Mum had eaten us all out of house and home again! When I got back I left the youngsters to unpack and escaped to my little retreat way downstairs where I read and knitted each afternoon after getting everything for my parents organised in the morning. I loved it down there though it was starting to get very nippy.
We brightened and personalised the empty space by rearranging the furniture and adding a cube bookcase, a big faux leather storage ottoman and some affirmation plaques. Very much needed after what we had been through for the last year. G has them now in her flat, I no longer need them as I am on the other side of everything now.
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.
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.
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.