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.

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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Finding Joy In Loss

A month ago my son and I  caught the train down to Sydney. This involved getting the bus from Belmont to Cardiff Station. The recently introduced Newcastle bus timetable is horrific for some routes while being beyond excellent for others. It was a lovely trip around the lake via Warner’s Bay and a lot of the passengers were elderly.

The train from Cardiff is excellent for disabled people as there is a lift and the GAP between platform and train is very narrow, while the entrance to the train is practically level with the platform. I did have to get on fast though, the train did not wait long and there were a lot of people with big piles of luggage waiting to get on.

We were picked up by my son’s fiancé at Central Station and stayed with her for the night. It was the first time I had seen Chanti in two and a half years. She is the Burmese cat we had for over a year to help us heal from all the trauma we had been through. Her role in life seemed to be as a healer but I was so shocked at how aged she was that I buried my head in her tummy and cried. She looked around as I said Chanti, it’s mummy Kate, but though she knew my voice she could not see me because she appeared to be blind.

Gen had kindly gifted her to us as she had two other cats but I moved to a cabin in a park in 2015 and I was not allowed to have an animal living there. My son tried to look after her but being unwell himself and needing to spend half the week with me he could not. So Chanti moved back to Sydney to live with her original family who loved her to bits too.

One reason we wanted to go down was for a trial run on the train for me to see how I would go at getting trains after having injections through the Royal Hospital for Women into my damaged areas. Those involved the area where I have to sit! The other main reason is that my dear friend who is more of a sister to me lost her Sister in Law the week before. Her children are like my nephew and nieces and this was their only aunt, I had to go and give them all hugs and tell them how much I loved them. It had been over two years since I saw them at the eldest daughter’s wedding. It was beyond time, and now that I was off the walker achievable.

My other dear friend who I had not seen since we left arranged to meet me at the shopping centre where for so many years we had met on Fridays. And most other days of the week too! We always talked about fashion and quilting, our children and life. We were quite the philosophers. I missed her and her family a lot.

We arranged to meet at 2pm so I toddled off to the bus stop to get the five minute ride to Royal Randwick Shopping Centre. On the way I started getting panicky, my heartbeat became very fast as the bus passed so many familiar landmarks. The church where we lived and worked for ten years. The school my son attended in Primary School. I realised I had to take some deep breaths, it had been five years since we left here, traumatised, barely able to put one foot in front of the other.

As the bus pulled up outside the shopping centre I continued to breathe deeply, trying to block the memories. Walking through the centre was really hard and hardest of all was sitting at the table at the coffee shop. I was early as usual and tried to cover my shaking hands by having a coffee while I waited. I texted a good friend and my son telling them that it was really hard.

Then I saw her beautiful bright smile beaming at me from the other end of the centre and just like that, all was as it ever was. True sisterhood and friendship knows no distance or years. It is all in the heart, in the soul. I got up and hugged her. And she allowed it. She is the most hands off person ever, even to her own children! We chatted about family, losing our mothers, missing them. How nasty our own brothers and sisters can be. Nothing is ever off the table in our relationship. Though I hurt her once, gravely, over a beyond stupid internet meme. Being right about such a thing was not worth the cost of the friendship. I apologised and until now our friendship was never the same. Now though I think it is better than ever, we have both suffered greatly for doing the right thing by our families, and of course we would do it again. It’s who we are, sisters in spirit and pain and joy too.

Around three o’clock my dear bereaved friend arrived and we two girls who have had much loss, comforted her by being outrageous, chewing gum like aged slappers, though beautifully and expensively dressed ones. We drank coffee, reminisced, caught up and laughed ourselves senseless. So much so that the lovely Indian waitress came over and asked how long I was staying. I had no idea who she was but told her I was going back to Lake Macquarie the next evening. My friends beamed at me and said she remembers you Kate. Five years and so many customers, and I was struggling to place her. As we left she said how happy she was to see me looking so well. Then I finally remembered that the owner was her husband and I had gifted her lots of lovely clothes when she was pregnant with their first child, who must be four now!

We said goodbye to Leah and I headed to my bestie in the whole world’s place to see her children. Her place looked stunning, very comfortable and warm, she had just moved out of her family home of thirty years when we left Sydney. Her daughter and I wrapped our arms around each other and we would not let go. And then a huge hug and gasps of incredulity at the wonder that was my proxy godson’s partner’s hair. It was dyed the sort of grey I would give my eye teeth for, and he is so pretty I could not take my eyes off him.

Eventually my son and his fiancé and her son arrived and had a great catch up. My proxy godson came out after a sleep, looking pretty shattered. His aunt and I being the mentors and most beloved women in his life in his early teens. I hugged him and said he is stuck with me as proxy aunt too now if that was okay. He smiled and said he had missed me.

Eventually we left as the family were going to see Black Panther, a good release for them after sitting Shiva and being at home so much. We started back to Belmont, stopping on the way for KFC for our little boy. Quite a lot packed into the day, after one half day of travelling to get there. I semi dozed on the way back, thinking how different all our lives are now. Fuller, richer in some ways, while the loss of my mum would always be present her Alzheimer’s had shown me how to really love, to really value and show that love in the present. Am so glad I conquered my fear and panic, I feel I came out of it a richer person for the time with beloved friends who are family and coffee shop owners who had become friends all those years ago.


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