I Cannot Let Myself Go Down That Path

Today my story is featured on ABC News Radio and News Online which both go national across Australia. This is my second time being interviewed by Giselle Watakama and she really makes it easy. She also has a magic way of pulling the secret stuff out of me. The stuff I try to cover up from the public, the people I know and often from my loved ones. She even manages to capture the quaver in my voice, because dammit I cannot hide that. Would if I could, truly.

I do not want my son or my lover to see me panting as my body tries to fill my ostomy bag. Panting as if I am birthing a hippopotamus. Because that is what it feels like. Pure agony for at least thirty minutes, often two hours  and exhaustion afterwards. And then there is the small matter of getting a bag to fit on my ostomy now. The mesh has sucked an area a bit like an inverted teacup beside my stoma. Right where the mesh is. And it is next to impossible to get a seal. So out of the myriad modern devices designed to make life easier for the modern ostomy I am left with an older version which does not seal and also the filter does not function well. Requiring me to ask friends if I stink. Because these days all I smell is poo.

Things are not all bad. As everyone knows I do not like to give in. And I am very stubborn and determined. And I like to advocate to help others who are injured and to try to stop others from becoming injured. While in hospital last week I met a really impressive Colo Rectal surgeon, Dr Peter Pockney who also teaches surgery at Newcastle University. And he is a member of my surgeon, Dr Brian Draganic’s team Newcastle Colorectal. I was impressed with his intelligent way of communicating. Dr Draganic also is very down to earth. I am hoping at some stage to talk to them about starting a mesh clinic up here at John Hunter Hospital. Or a Hernia Mesh Clinic as RPA has the Pelvic one. These two surgeons did not place my mesh. Presently I have started a support group on Facebook for Hernia Mesh injured. It is called Australian Hernia Mesh Support Group. We are gaining more members due to the radio interview on ABC today which is wonderful. People who do not usually use Facebook so I have given then my name and mailing address instead.

Some of the timeline of the article was a little bit out. So much for Giselle to sort through. Basically I had the mesh inserted in 2015, three years after my ostomy was formed. The photo above was taken after I got home from the mesh repair. Not knowing then I had a mesh infection, which is NOT considered to be a good thing in mesh circles.

So for most of early 2015 I was in and out of John Hunter with bowel obstructions. I was given emergency surgery in August 2015 for a Parastomal Hernia  and mesh was inserted. I have been much worse since, though not to the point of vomiting faeces but that is because I am so vigilant to not let the obstructions get to that point. But she is right. I do fear choking on faeces, because I did, for many many hours and even The NG  tube could not suck it all away. It was the only time in my life I wanted to run away and die somewhere where nobody could find me. Well I did once after I started looking after my demented parents in 2013 but I had just left my nasty husband and walked into the hell of Alzheimer’s. With a new stoma and a then undiagnosed Hernia.

So basically Giselle let me talk, and tried to make sense of what I said, with no medical training and my tendency to ramble she did a great job! What was even better for us Mesh campaigners and advocates was the info she came up with. We need these skills!  Basically the College of Surgeons are concerned about this Hernia mesh issue. It is so good to know that.

‘Anyway the article is here. I will leave you to read it, to absorb it, and to try to know that my life might sound awful but I do see the bigger picture. In my case I do not have Alzheimer’s. Whew. And I can still laugh at myself. My son is wonderful,  as are my friends. And I have a magical lover/partner who does not notice my bag, thinks I am brave and encourages me to not see myself as disabled. It is only when I try to walk that I feel disabled, and it is only brief. Cause I cannot let myself go down that path.

Finally I would like to thank the lovely Rosie and Marion of John Hunter’s new Acute Surgical Ward. Talk about wonderful nurses. Beyond wonderful. And then there was the delightful Rory, the resident from Belfast. And the canular technician called in who finally got a vein. Am covered in bruises. Little love bites to remind me of my stay.

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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.

Common Circus Belmont

Yesterday I had a flu shot administered by a medical student under the expert instructions of my GP. We all survived, I still have my arm, though it is a tad sore at the site which is usual.

The student was male which was unusual as we get a lot of female med students and he did an excellent job for a first injection!

I felt in need of a coffee as I always do if I am in the vicinity of Common Circus, the wonderful homewares and coffee shop opposite Belmont Lake.

I have been coming here since I moved into my home in 2015 and really love sitting at the large communal monk’s style table. I blog my memoirs, surreptitiously people and baby watch and chat to people from all walks of life as well as these days assess who is a tourist.

I remember the first time in 2016 when I was asked if I was a local! By a tourist. It was incredible and I felt really proud of my beautiful region. Then I chatted about Words With Friends and other things and yesterday I observed a lovely interaction with some young mums at the table.

One mum had a newborn in a sling which the other mum nursed for her. Her little toddler was hidden by the plants in the middle of the table so I could not see what he was doing. He was very quiet.

I asked if it was okay to take photos for my blog. Assured them it was anonymous and covered women’s health etc and coffee shop reviews! They liked that I think though the gorgeous young mum was concerned she looked awful as was sleep deprived and had no make up on.

You can judge for yourself from the photos below. There were lots of people coming and going. Business types in suits getting their take away coffees. Older people reading newspapers while they savoured theirs. And then the younger ones perched on the stools looking towards the lake.

There is a lovely outdoor area with a communal table and the staff is always perky. And not as a result of the coffee. They are naturally inclined that way! And. They know the names of most of their regulars!

I highly recommend this place, not least for the service they provide but for the way they make use of recycled paper boxes and napkins and cups instead of plates and cups and saucers. Their coffee and food is unparalleled too.

The decor is gorgeous with patchwork panelling and colourful coffee machines. Currently pink. Used to be aqua. I prefer the aqua but that is just my taste and the pink does not nauseate me as it may some people I know. Think fifties kitchens. Pretty.

Five star review. Excellent and has remained so, even improved if that is possible.

I Got That From Her

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.

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.