26 February, 2022

Working with people making sense of the end of their lives - Prof Seminar Notes

Last week, I attended a psychologist society seminar on how to work with people at the end of their lives. The presenter was a clinical psychologist working in youth oncology hospital departments.

These are my notes:

Uncertainty is highly correlated with anxiety and avoidance, and 

uncertainty only lives in the future, so connect to the here and now. 

We are not going to fix things, we are only going to learn to live in this environment. As humans, we find it more difficult to stay in the present. Most people would easily spend time thinking about the past and the present. What are you going to miss out on if you do that? ask them. You may be worried about what is going to happen to your people when you are gone, but you are missing out on actually being with your people right now because you are distracted by thoughts of the future.

In this present moment, what do I feel I am connected to?

Basic sensory things work well, especially when patients lose capacity (physical and emotional), for even ten seconds at the time, taking pressure off them to do it longer if they can't. The hearing sensory stimulation works really well.

Palliative care specialists will know how they will be cared for if the patient can't breathe. These are people worth contacting early in order to gain such information and lessen anxiety.

Anxiety for a duration of about three days until they devise a plan is normal, don't pathologize normal reaction.

Existing psy preconditions like anxiety will be exacerbated.

Relationships can go either way: Turns bad when one partner wants to talk about death & their legacy, and the other not - goes in either direction. Sometimes it is the partner who wants to talk about legacy and the other person no, but sometimes, it is the patient who wants to talk about it and the family say things like 'you will be better soon', not allowing her/him/they space to talk.

Naming things in therapy can be very useful otherwise anxiety grows on each side. 

Suicidality is an escape fantasy, it is raised by 90 percent of her patients, but it is often a fleeting thought. How to handle it: talk about their idea of escaping, 'where I am is really hard and I like to think I am somewhere else', wanting to find a better place, 'doing' something about it, 'I found a solution'. 

Ask the patient: what do you think is going on with you when that thing (these thoughts) turns up? Escape fantasy.

People say this is really helpful to know it is fantasy escapism, because when it happens to them, they know where it comes from.

Diffusion - learn to bring distance to your thoughts. Meta cognition: 'I see 'brain' what you are trying to do, giving me this picture that I am a loser, or of who will be there around my death bed (none of it having actually happened), but, no, I am going to chose not to do that'.

Awareness that thoughts are just thoughts and we don't need to engage with them, that we can watch them rather than getting bossed around by them.

Realisation that ok my brain is doing its job, acknowledgement, 'ok thanks for that but I can chose not being caught up in these kind of thoughts'. Metacognition.

Reverse: 'oh thank you 'brain' for this nice image', so you can see that it can look good when you reconcile with your brain.

Yet, some of these thoughts have purpose and meaning, so they should not all be diffused.

Societally, we have an avoidance on difficult thoughts.

Psychological pain will shift around in distance and will be linked to pain levels.

Patients need space and capacity to experiment unpleasant, painful feelings, sensations, and emotions. 

This is meant to happen but in this space, environment we are sitting in, when you don't have much energy, what is the cost of this fight (avoidance)?

Acceptance brings anxiety down. 

Metaphorical job of saying 'I see you, I see what that is'. Naming things and giving them a framework.

What if this is as good as it gets - concrete acceptance and real difficulty in life/life experience.

What makes you feel good (sensations, here and now): get into a rally car, go to a concert, ok. More important than existential thinking.

Being upfront about the reality of getting rid of anxiety/low mood/urge to fight against the feelings.

Show that you can be taken out of your family in the here and now by being caught in your thoughts.

Paradox of time: I have limited time so everything needs to be meaningful but I am paralysed thinking about what is meaningful because I have limited time. Nothing seems meaningful enough. Then, they do nothing, Netflix for two weeks, and the guild and shame cycle kicks in.

What is meaningful for six months, for one week, what comes in the way of this?

What is meaningful for you, no one really knows when asked that way, but if you say what feels important to you now, what you want to spend your time on, they will know better. What were the things you were driven towards?

Next time you see them: what happened with this value chunk?

Work around legacy. You need to feel good to do this really hard work. They may not be able to do it, especially if they are unwell. Halve it, then halve it again.

What do people around you like or value about you. This is your legacy too.

Committed action: what is the cost of doing this or that, is it ok with you?

Keeping in mind that the cost to the patient is not necessarily what you would see as a worthwhile cost yourself (eg guy who go to the concert and smashes himself with meds and has to go five days in the hospital after and thinks it is worthwhile)

or it could be:

'I wish to be well enough to go to my grandchild birthday party'

Religiosity - often people come to see us in order not to think about it. People are often pissed off at god. If you have an agnostic attitude, ask them to educate you on what they believe. Metaphorical work so you can understand how they make sense of things in a meaningful way to them, as long as it helps them.

Exploring cost/benefit: I value going out with my mates but can't do it because I am too unwell.

ok, so what happens when you are fatigued. I am tired, ... so ok, so what happens then. 

I am grumpy, ... ok so what happens then. 

I may need a lay down. 

Can't you do that with your mates?

ok, so it does not prevent you from doing it.

Past trauma - this is not useful to unpack this right now. you don't have capacity.

Sleep difficulties linked to pain medications wearing off at 3am, or rumination about what is going to happen, temperature regulation issues.












06 February, 2022

My reading bucket list this year

 

My favourite is probably the first one: it is written by a young Australian woman able to articulate for others what is it to suffer from chronic pain in our Western societies, her dealings with the medical system, and how her condition has changed her as a person.




Affairs: 'it was fun ... at the time (only)'. Interesting read about all mechanisms at play.




Top pick from West End bookshop - a must read about who is attracted by power, 
how it corrupts many, and quoting 
'If God did not exist, it would be necessary to invente him' (Voltaire)
 since 'watched people behave better'. 
The emphasis is watching at the top, since this is where most of the damage is done and trickles down while what happens is mostly the opposite. Tools towards better societies where leaders would be called for their qualities, rather than often being self seeking and appointed which attracts the wrong kind.




A great account of what it is to live with Covid-19 in London with a young family for an intrepid journalist I admire a lot - also, great insights on modern fatherhood.




The lives & thoughts of brain surgeons














29 January, 2022

My first commissioned painting

How it started.

A very good friend of mine FB-liked a painting from a local artist with whom she goes to the gym. 

I noticed it, and I was moved by the way she could see and depict trees, like a shared vision.

I had been taking pictures of trees a lot lately, and this year's exceptionally very wet season, due to the El Nina effect on the Eastern Australia coast, had meant a lot of rain .... and an almost daily bush spectacle of beautiful colours - red, pale and dark green, yellows - on forever versatile gum trees in my backyard. 

My camera could not fully capture the effect.

I also thought about extending this daily visual pleasure inside my house. I thought I may paint them, but lacked the skills.

I decided to visit her exhibition.

Unfortunately, last minute emergency calls meant I was not able to attend. 

Then luck stroke.

Veronica (her artistic name) came to my house, after, by chance, we met in my local church that she was attending with her husband, and where my friend was singing Christmas Carols, a couple of weeks later. It was the first time I went inside this beautiful little church, and don't get me wrong, it was only to see my friend singing. We shared how we could see the trees in my Mt Cootah backyard, and she asked me what particularly drew my attention when I was watching these trees.

At the end, she said that all these questions were for her to capture feelings from what I saw, of what came from me and the place, that she would convey on the picture. 

Nice effort.

I gave her carte blanche, and here is the result, one month later. 

(It was hundred percent spot on, not many words were needed)




The following day after she brought the paintings and I had put them on the wall, I texted her to thank her and let her know the joy of unexpectedly see the greens and yellows catching the bush morning light with a picture to attest to it. 



'We', well ... 'she', had been able to expand the magical bush light inside the house.

Quite an achievement!

Even better: she replied 
'what a lovely gift you gave me this morning'.

I realised and felt in my guts that there was, with some people, as much joy in giving than there is in receiving. 

I suppose that was the 'add-on'

What a day! What a meeting!

Some days are magical.

22 January, 2022

Zenning out Today


Zen-out or Die, so Zen-out!

I went in my garden to photograph a special red banana tree that was planted a few years ago with a regime starting to bloom. I had been taking a few pictures of its progress.


One or two leaves of the Lady Ginger Banana tree on the side of the house - different species, smaller trees - were looming over the roof, so I cut two large leaves.


I took the long green leaves home, marvelling at their beauty, texture, suppleness and decided to make a few things out of them.

The simplicity made me happy, so I am sharing this moment.


Frangipani flowers from the garden; tree planted by my dad.


Lime on a clean plate


Home decoration


Pink eatable flower from the garden at the top of the
 ornament


Serving tray in a boat shape


Next time, I'll try a few other neat ideas that I YouTubed and require more dexterity and concentration.


.

10 January, 2022

The day I walked into a hospital's emergency service with welders' protective glasses

It happened last night ... 

I ended up presenting in emergency last night, as a visitor, to advocate on behalf of my unconscious daughter dressed with a FFP2 mask and a pair of welders' protective glasses.


Desperate circumstances call for desperate measures :)

When I rang emergency, with my 25 years old child lying next to me unconscious for fifty minutes, hyperventilating with convulsions, and after waiting an unusual long time for their arrival (45 mins instead of 20), the poor paramedics tell me that the Royal Brisbane Hospital is now mixing covid and non covid patients in emergency. 

I could not believe my ears.

The Mater Hospital did not, he said, so we opted for the Mater of course. 

As for Private hospitals, despite us having private cover, and the Prime Minister saying that non-covid urgent cases should be redirected to private hospitals who do not accept covid patients, the three major private hospital next to our home do not accept serious cases like my daughter's and have refused her access systematically for a few years now. They claim they are 'not equipped' for it, the reason changes with time, but the result is the same: no access.

When you arrive at the hospital with the ambulance, paramedics are in charge of their patients until the patient has been allocated a bed in the emergency ward, which means that they have to wait in queue in front of the hospital, sometimes for hours in order to get a bed for the patient; they are put at risk as well if you mix the patients. 

If you wonder where the paramedics are when you call 000, now you know. 



At a rate of one presentation to emergency services every ten days at the moment, both myself and my daughter are now at risk. For my daughter, it can be deadly, she is at very serious risk. If I get it, I put her at risk as well. So, wearing the welders' glasses was not too outrageous at the end. For the first time, emergency staff was also wearing eye shields, there are not RAT tests available atm. If anything, my initiative was greeted with respect.

My daughter is now fine, but it did not go smoothly...

In my first sentence, I used the word 'advocate' because this is what I need to do when I go to emergency to accompany my daughter. I often need to advocate for her if she is not in a position to do so for herself when needed.

It is the first time I describe a hospital emergency experience, as a witness of these troubles times.

 Yesterday, for example, the ambient chaos leading to finding a bed in a non-covid space was not the end of our troubles. She ended up next to the cubicle of a young adult girl who would not stop swearing loudly with her friend .... for six hours. After an hour, I asked her calmly 'to stop speaking loudly and saying the F word every sentence while my daughter was unconscious next to her and needed calm' to which she replied 

'I don't give a F if your daughter is unconscious'. 

I was shocked beyond belief. I asked a nurse to 'please ask her to be quiet'. She ignored me. It turned out she was a junior nurse, so she probably did not know how to respond.

Normally, I could have cried, I could never imagine someone saying something like that in such a situation, but I did not. All the tears have gone, something in my body was taking over, it was not time for tears, I was in surviving mode. I tried to concentrate on my goal. I was speaking out my goal loudly in my head, focus, focus, you want your daughter to get care in order to regain consciousness and get out of here ASAP.

So I tried hard to not let it affect me and stopped engaging with the rude girl. She went on like a dog on a bone ... for hours, I could not even give her the excuse of mental illness (we once had to deal with a schizophrenic, it was not easy with two security guards having to restrain her, but it was not her fault), no, she was simply plain nasty. She went on insulted me loudly with words I could not even understand (good). The tone was not good, I knew it was bad. Her words got muffled and more muffled until I could not hear them anymore.

I put one hand on my daughter's ear, but the nurses could not stop her. 

Why?

Because she is a 'customer'. All what the nurses could do was to de-escalate the situation at all costs, that is what they are trained to do, and at no time, could they tell her that she had gone too far since the 'customer is Queen'. 

The girl ended up turning the situation around saying that I was the one abusing her, asking a nurse 'for me to be expelled from the ward'! Fortunately, anyone in the ward could figure her out, and heard the insults. A doctor working on a computer was just in front of us. Insults were also randomly directed to the hospital staff. 

When things calmed down, after a few hours, with my daughter still unconscious, I was called to talk to the head nurse and excuses from the hospital staff were presented to me. The nurse in charge of my daughter was clearly feeling so bad, and finally accepted my early request of moving my daughter's bed, but as I could see, with no bed available, it was very unpractical for them to do so, so I said the best thing now was probably to hurry the process of giving my daughter the pain relief we had been waiting for all that time, that required senior doctor authorisation (and they are not easy to get hold of in public hospitals), so that she could be put out of unconsciousness and that we can be out 20 min later, as is usually the case. The senior staff was busy elsewhere on a very urgent case right then, so, at the end, they astutely tried to get the girl out quickly, and apologised to us again. 

I don't understand why they apologised to me, these people are heroes. I told them how grateful I was, having them working in such difficult situations. It is the girl who should have apologised, not them. 

This is insane how muzzled professional people are these days. The girl has no idea she has done anything wrong, so she will continue somewhere else. Worse, she goes around presenting herself as a victim. 

Last time, in another hospital, my daughter was put on a chair in the emergency ward, and slid off while unconscious. No one noticed because they were insanely busy. I caught her, just in time when they finally let me see her in the emergency ward, and I had to advocate for a bed. 

This is what happens when the hospital is understaffed and chaos reigns.

Anyway, while this is not the main object of this post, this gives you a first hand real life account of the sense of chaos we are living in at the moment.

Queensland has a critical shortage of covid-tests, so people roam around the street unable to know if they are positive or not, who is positive and who is not. Nowhere is safe right now for people at risk.

I hugged someone who ended up testing positive on the 3rd. My first reaction was to get tested since we had support workers coming the following day. I would need to let them know that I was a 'contact case'. Well, 'contact case' yes, and no, since the new definition of 'contact case', this month, is that you have to have spent four consecutive hours in an enclosed space with someone. This new definition also assumes that you are 'fully vaccinated', therefore less likely to contact and transmit than during the 15 days rule when not enough people were vaccinated. This convenient truth allows the government to cut the contact-isolation period from 15 to 7 days, and this applies almost worldwide.

So now I needed to be tested. How?

The closest drive-through testing site located in the local shopping centre car park near my home had closed. Why now? This was, after all, the first month Queensland was really hit by Covid following the controversial mid-December interstate borders opening in great part forced by the Federal government.

Our prime Minister said 'your GP should be your first port of call if you have covid'. I thought this made sense, since 'at risk' patients, like asthmatics, may benefit from preventative medicines such as monoclonal antibodies or antivirals to lower symptoms, and only their GP would be able to assess properly. So, my General Practitioner practice was called, the practice receptionist acted as a barrier to protect what turned out to be over solicited GPs, and told us about the closest walk-in respiratory clinic. 

We called the respiratory clinic, and were told that they only accepted to test symptomatic cases. We did not qualify. In fact I was not even a proper 'contact case' according to the definition. Yet, I am looking after someone who could lose her life if she gets hit by covid, and several support workers may lose their income if they can't come and work this week, but I do not qualify.

Ok, let's go to the chemist and get a Rapid Antigen Test (RAT) then. Nothing there either, and no estimated date of arrival. 'They will come soon', I am told. 'Are we talking about days, weeks?', I asked. 'We can't tell, perhaps two weeks?'. The chemist did not know, and this was pervasive everywhere, total void in key communication.

I went online, and clearly, there were no tests, rapid or not rapid tests. People were queuing for up to six hours with their kids under the sun, and had to give up when the late afternoon storms grounded them. If you wanted to go through a drive-through, you may have to drive a long way, wait for three hours, and the test-site could close any time when they felt overwhelmed after these three hours. The closest to our home announced they were closing at 12pm! I saw with my own eyes hundreds of metres of queue under the Queensland sun in front of the Royal Brisbane hospital emergency department doors as early as the 28th of December. Worse: the main entrance was shared by the covid-fever patients (you could come only if you had a fever) and emergency entrance patients and visitors. See below, fever clinic on the left, and red emergency sign on the far right.




I was horrified. I had to ask my daughter to stop breathing as we were passing this point to leave emergency.

So, no tests.

You would think that our state and federal administrators had planned for it: plenty of time (2 years), plenty of modellings (overseas), and plenty of non spent health care money compared to other Western democracies (2 years with next to nil covid-cases in Qld Hospitals). 

Well, no. 

The worse was that it could be done properly, our state was a demonstration to the world of what could be achieved with good governance. We had been so lucky with less than 10 active cases as far as early December 2021, a third of them hospitalised, but we were now bullied by a neo-liberal federal government to open the borders with no proper means nor planning to do so. One and only one state resisted: Western Australia.

What is not counted or countable does not exist ...

Incidentally, No Test means no reliable Test Numbers, no reliable test numbers means 'stats look good', parents of overseas students massively sending their kids to study in supposedly 'safe Queensland' reassured. It means shareholders reassured. I sincerely don't think it was planned that way, but you wonder, and for sure, Qld Health figures read from afar are misleading with 20K cases today. It is far more than that and exponential.

I do not dispute the need to open the borders, I understand that it is good for our economy, I dispute the lack of reasonable planning and duty of care. We could have done it correctly, we had the means, including the excellent Check In Qld QR Code app, and a compliant population trusting their (unfortunately former) Qld Health Minister, and even an innovative covid-test created in Brisbane. 

This is what is infuriating. It could have been done properly.

Right now, people don't even bother register their covid status, it does not achieve much for them, obviously, even in terms of planning for the government. Good luck with asking them to get vaccinated again or any other form of compliance.

When trust if lost, compliance is lost.

With a child at risk, I was now fearing the next presentation. What would happen, would we have to share the same queue as covid-fever patients?

Well, it does not matter, people are properly vaccinated now, you may say. Well, yes and no. Most people got vaccinated with their second dose of Astrazeneca in July, August, September 2021 in Queensland but their third booster dose would be due six months later, now. Technically, until end of December at least, you were considered fully vaccinated if your second dose was less than six months old. I was allowed to have my third booster (as an early vaxed as well) on the 29th of December, exactly six months after my second dose. At the time, I was not even allowed to book my booster dose earlier and my 'vaccination status' on Qld App would be ticked (green tick) if I was vaccinated within six months until then. 

We now know that the Astrazenecca second dose works only 3-4 months, which means that on the day our Prime Minister announced 

'let's go on with our lives and learn to live with covid' mid December, 

people were not 'really fully vaccinated', they were in their 4th, 5th of 6th month of Astrazeneca second dose with seriously reduced immunity after the third month of AZ.

The result is that it was now going to spread at a faster rate than in the US who had Pfizer.


 People did not know it, they celebrated the fact we were seemingly fully vaccinated (80%+). They thought they were fully vaccinated because they were within the sixth month bracket, they trusted the PM, so they went nut partying between Christmas and New year after two years of frustration, especially young adults who had most suffered socially from a very long lockdown. 

By the 6th of January, most people I knew had been infected, yet they were all considered fully vaccinated. Of these people, not all of them reported, 50% did. The symptoms were often quite mild, and there was some satisfaction that for those who went through it ok, we would reach herd immunity that way by April 2022, so that it would not be such a bad thing after all to contract it with a less virulent variant, while we still had some vaccination effect.

Well, yes and no.

No because it will only give a few months immunity, and it includes the risk of long covid damage.

No, because 30% of cases admitted for Omicron in France, for example, were immuno-compromised people who were still at risk.

No because young children 5-11 were still unvaccinated and were due to come back to school shortly.

 Literally a couple of days before the school were meant to open their door for the new term, the Qld Premier announced the school would not open before two weeks, until the kids would have at least their first dose. As we know it today, the first dose protects only at 20-30%. Damage control policy. 

Right now, my colleagues with young children are stuck at home again at very short notice and if the principal breadwinner needs covid testing to go outside to work, there is no test. 

Supermarket shelves are empty because supermarket workers are calling sick (sick/lack of tests).

My support workers can't work for the same reason.

Basically, the economy is now seriously paralysed.

And if I was not privileged to be able to work at home, where would I be?  

If you think that I could leave on a carer government pension, enquire, it is slightly more than unemployment benefit.

 It is far less than the outrageous 750Aud/w the government gives to people who lost their job because of covid, in alignment with other main Western democracies. 

Carers like me, of course, do not qualify for it since 'they don't have a job they lost'. 

A slap in the face for carers with no income, who get approx 400 Aud a week, or unemployed people who get 315 Aud a week, all below the poverty line.


Why do we think that they needed less than people who just lost their job because of covid? 

No more subsidies from the government for these people now. Ok, fair enough, and we knew it would not go forever, but what now? Well, they have to go to work at all costs without the ability to be tested. We have gone from one extreme to another.

I just read on ABC News that meat workers, truck drivers, support workers, school teachers are now asked to go to work as long as they have no symptoms, same things for nurses, even if they are contact cases. Will they risk to go to work when they have to weigh the benefit of bringing a much needed income to their family versus bringing them  Covid-19? Tough choices.

Who will employ support workers who are covid contact cases?

Roads are empty again, just like in March 2020. Last night, as I drove back home, it was totally eery, a sense of déjà vu. The difference with March 2020 is that we were then 'in confinement', now it is the opposite, we are told to 'go and live with covid' but the result is the same: empty streets.

All we needed was appropriate level of covid-testing capacity for the December policy :( 

It was not that difficult. There is no doubt that the test shortage will get worse as Omicron cases are rocketing all around the world, including new outbreaks in Asia, so yes, soon, we'll be able to say it is conjunctural, but so far, no, it was not conjunctural, it was bad planning.

The last covid test kit (x2 tests) that I bought was 29.50 Aud. That was in November.

My chemist friend in Europe tells me she buys them 2.50 euros and sells them 4 euros. What is going on there? 

I kind of agree with Morrison that not everything can be free and that we need to let the free market do its job, but this will not gaslight me, this is not a reply to the question: where are the kits?

There could be another explanation. She also tells me that the kits are all coming from China. Is it where the real problem is? Well, I would like to know because I would respect more a Prime Minister who says that as a result of his strong political stance against China, this is what the diplomatic retaliation means for us, rather than it is a case of bad planning. Well, let's hope it is not the case. 

Sadly, the 15 mins wonderful Rapid Test, designed on the pregnancy test model we all enjoy around the world, is a local Brisbane invention. We should be proud of it, and manufacture it around the clock, 

but no...

The government authorities (TGA) for at-home approval and distribution in Australia only arrived late 2021 so all current orders are being sent overseas. The TGA is currently blamed heavily by the media but when asked, they reply that they can deliver an authorisation within three days. The very very latest blame has been put on the Commonwealth.
Who should we believe?
All this blame shifting does not mask the fact that the PM did not have the means of his policy when he opened the borders mid-December. 
.

Yet, we had a compliant population, innovative and technical capacity. 

Such a shame, good planning of the testing kits availability could have saved the economy.

There is another problem, and this is less than trivial: No tests, no reliable numbers, no proper administrative technical covid-cases monitoring capacity means that the country is now a candidate to become the next birthplace of a dangerous variant.

Well, on a little note of hope and as an anecdote, it is good to know that when governments fail, civil society takes over and it is not always a bad thing. A young programmer decided to do something for the community and created in the span of six hours a website to identify where the Rapid test kits are located in the country on Monday the 3rd of January 2022. It will not save us, but I salute him! It is called Find a RAT! (https://findarat.com.au/)

There again, in a country with plenty of space like Australia, drive through is also the answer, not only for testing with young children, but also to shop safely. I managed to do it last week, for the first time, and I loved it. I received an sms to let me know when my grocery order was ready to pick up within the 2-hours time slot of my choice. Yet, I could clearly see that the supermarket was not ready. Not many spots were available for collection (called Click & Collect), and I was charged twice the amount of my weekly groceries on my bank statement without asking for my permission because they did not have some items I ordered online, so they changed them for substitutes, and I was billed twice. My money came back, but 'within 2-5 working days', I can only imagine how stressful this could be for many families to be billed twice their weekly grocery bill. Of course, it was blamed on IT processes and capabilities by Coles Customer service officers. For me, it is only rampant lack of planning.



I think private enterprise like Coles and Woolworth, in this case, had plenty of time to be ready in the last two years as well, and to perhaps 'do their bit for the community', get drive-thru ready. For now, there is only a 'symbolic effort' as far as I can tell. The business as usual On time Delivery for supermarket shelves stock is not either an appropriate business model for the pandemic. Like at home, they should have three weeks of stockage ready at all time right now.

The folly continues with opening of international flights in the coming weeks, and still no RATS, which, we are told, will bring Delta in Queensland.

We went from total muzzling with strict confinement in March 2020 (socialist mind) to 'Let's Live with Covid Unhibited' in December 2021 (Liberal/Nationals mind) and the result is the same: empty streets. Maybe there is a middle path, non?

Only moderation will guide us.


Hopefully, the generation who has lived through this will end up becoming a truly resilient generation. Let's hope we will survive it though :)



28 November, 2021

2021 Rewinded


 This year has been all about construction.

The highlight was probably having access to a the covid-19 vaccine ... as early as April, 2021 since I am considered immunocompromised, having had radiotherapy until December last year. I was lucky to be among the early recipients of the vaccine worldwide. I did not hesitate because I also knew we would have to cross borders this year.

In September, my first year post-breast-cancer test was clear. Best of news.


We owe it to medical scientists who lifted the world this year!






Nevertheless, I made sure my daughter would get the Pfizer since Astrazeneca gave me huge pressure headaches that would not have gone well with her chronic head pain condition. We both were among the lucky few in the world to be fully vaccinated by June. 

In February, I completed my Psychology Sciences degree from the University of New England. I enrolled in a Master of Sciences (Major Psychology) in July 2021, and was offered a scholarship. The subject of my thesis is about Barriers to Bowel Cancer Screening.

We recieved this note from the Vice-Chancellor.


My workplace was eery and deserted. One day, I had to collect my new work computer, and here is our kitchen's signage, and our empty reception desk, no one there except for two people that day.



We were hit once again, by a new restructuration. My work is slowly being replaced by algorithms feeding on translators' working and long term memories. 


Hence the new studies to keep me going with making a living over the next 10 years, while working remotely from home. My options of the kind of work I can make a living of is limited, but the event of telehealth and covid-19 new work habits (work from home being the new black) are giving me new hopes :)

Times were tough this year, not my favourite year to remember, between my two jobs, looking after my daughter with no break, and being a full time psychology research student. 

What carried me through was that I knew that what I was doing was constructive. 

From time to time, I would indulge in Ayuverdic massages in West End :)



We also discovered HelloFresh meals delivered to our home once a week, with each day ingredients packed in a paper bag, with its easy & healthy recipee ready to go. We enjoyed cooking together these delicious meals. My daughter made Kumquat marmelade with fruits from our garden, and we went strawberry picking.




We also managed to go camping in Byron Bay for one week in February. As you can see, we made it very comfortable.












It was important to fill our mind with great memories, while we could, because we knew that the rest of the year was going to be very tough with medical tests. We were waiting for the surgeons to decide when it would be a good moment to proceed, they seemed very busy, and this was highly anxiolitic.

Then, my son celebrated his 20th birthday with his friends at home. He now lives with friends in a house nearby, and seems happy. He is still looking for what he will do later in life, but his paramedics studies are going well. His age group has been hit hardly by covid confinements.

In June, after a long serie  of ambulance calls (x17 this year, note that this is less than last year), each one following loss of consciousness (triggered by pain) lasting more than 50 minutes, my daughter was admitted in pain management for one week at St Vincent Hosptial to reset her pain medicine's bearance threshold. We were waiting and waiting for Sydney to call us to advance the neurosurgical aspect of her treatment.

Louis, our dog was accepted as a hospital's visitor. It was his first time in a lift, he lowered his abdomen in fright, not at all reassured. All the staff loved him.


June: a darling friend made a beautiful vegan cake for me on my birthday.




By July, the Sydney surgeons (x3) finally gave us the go ahead. It was still tough with getting finances in time, and getting a Queensland Government special authorisation to travel to Sydney for the procedure. In fact, we got the authorisation on the Saturday for a procedure in Sydney on Monday.  The call came from the Qld Health Chief Officer office at 8am on Saturday morning. I had almost cancelled the flights and was about to call the surgery on Friday, good I did not: I had hopes until the last moment. We had been waiting for this procedure for nine months!

We were going to be quarantined in Sydney, in a hotel, for my part, while my daughter would be at the hospital opposite the hotel, for two weeks, and for two other weeks back in Brisbane. Since we needed special bed equipment - see below the hospital bed delivered at home while we were in Sydney with a neighbour helping out for the delivery (thank you),


we had exceptionally been allowed to quarantine from home on the way back. The dog would also need be quarantined! We also needed to be vaccinated, luckily, we both were. The flights' embarkments and border crossing were not going to go smooth.

The Ordeal

We set to go to Sydney to try this important neurosurgical test for my daughter, which involved a halo brace for up to three months (feel free to google it, I do not wish to post pictures of it; these are images I'd rather forget). Despite the shock of the first hours when she wanted it out, with the surgeon's encouragement telling her that her initial reaction was normal, that all patients say that, she followed through, and was able to keep the halo brace for four weeks. I was not allowed to visit her to the hospital because of NSW covid regulations, but the nurse would take her outside to meet me twice, and we would practice hanging around in her new attire & wheelchair around the university-hospital grounds to get used to it, facing people here and there, in preparation for the flight back. 

Our trip going to Sydney


















 Working from my hotel room the second week of July - we had to stay longer than anticipated.

Back in Queensland, the seizures did not stop, and when the ambulance was once called, we were admitted as 'potential covid' patient for having been in the 'danger zone' (NSW); it was rather dramatic with full PPE gear and security. 
At the end, we had to wait for three hours for a taxi-ambulance to take us back home, in a bed in a respiratory unit with one guy who had just been checked for covid coming from hotel quarantine. I fell as close to hell with fear as one can be. Just breathing was dangerous. 






We eventually had to stop the test earlier than anticipated because of a number of complications. I cannot say it was with great disappointment because the halo brace trial was very difficult to bear for her, and for myself as her mother (worst day of my life when she skyped me 10 mns after she woke up from the procedure), but my understanding was that one more week would have been more conclusive, and we tried hard to make it last. We had just reached baseline pain medicine level, since time was needed to overcome the pain associated to the procedure itself. Now, at week four, we would start seeing if the device had a beneficiary effect on her pain levels or not, which could lead to a better understanding of her condition, and perhaps, a specific kind of surgery in such case. Some surgeons said it was conclusive enough, some didn't think so. 

We did not find the solution to her ailment yet, but we did learn some elements to advance her case, and that was one of the purpose. We knew it would not be easy at this stage since we are treading at the limit of experimental investigations.

This below, is a token of gratitude from my daughter while she was hospitalised for complications in Brisbane in September after the quarantine. It was hand delivered. I was in the garage in the front of the house, I thought it had been an error, I could not believe my luck when I saw the flowers gift from my daughter.


The Halo brace test was followed early December by a much less invasive modified Aspen brace test for a couple of days only.




The rest of the year was again punctuated by ambulance calls. On one occasion, cold symptoms had her sent in the 'Bubble' (respiratory unit) where I was not allowed and where no pain management would take place, just 'waiting on her covid results'.

This is a rare picture I took of the ambulances - I am usually too busy but I took this one as they were leaving. I followed with my car shortly after. You can see here that three ambulances were called (Nov) - three ambulances means acute care with respiratory specialist and emergency doctor called upon.




I got three of these stickers over the last 15 days :( ... they are emergency area visitor's stickers.



You will understand what I meant when I replied to these three women in one go (see previous post labelled 'Ghosts from the past' (https://corinasays.blogspot.com/2021/10/ghosts-from-past-coming-out-unexpectedly.html - click web version to find previous posts) that all what they were talking about was 'peripheral' to me. 
What they all did is despicable.
 
If you look at the Maslow pyramid, you will see that survival comes first, it is the mode I have been in for quite a long time now and there was no choice. Fortunately, I am also constructing, and I hope it will eventually bear its fruicts. Of course, nothing is guaranteed. Although we go through very difficult moments, my daughter and I are the queens of seizing good moments when we can.

We were lucky to finally get some help from NDIS support workers once we were out of quarantine and my daughter off hospitals in October. One is coming on Saturdays, this gives me a bit of freedom. When I can, and when I don't swim at UQ pool, I go to see exhibitions.

These sculptures made of recycled plastic were photographed in beautiful New Farm park.




I went to the Lyrical Landscapes Exhibition, on the Gold Coast, a mixture of music and local landscapes paintings










Picture of a distraught news presenter in time of covid - his eyes reveal his fear despite his composed placitude



2021: The year the world discovered the QR code, this is the pub entrance opposite my workplace.



I get a lot of pleasure from contemplation, fortunately, now that my life has become much more housebound. The ever changing colours of eucalyptus trees under the rain keeps me in awe of nature's spectacle. 
By chance, I met, through a friend, an artist who sees what I see, but paints better than me, and today, she accepted to redo a painting that she already sold. I will put the painting below downstairs.






Support did not come from where I ever would have expected, but it came, and I am so grateful for those who will recognise themselves for being there when I most needed them to, and who helped me accomplish what I had to accomplish this year. This includes the support workers.

Here are some rum balls brought to me by one of you.




Now, let's look at the larger picture. Of course we had the Olympic games in Tokyo while we were quarantined at home in Brisbane. The dog stole the remote control but we ordered one online illico. My daughter had her halo brace, but she stood to salute the two Australian medallists (sisters) who used to train with her at 5:30am in her primary school swimming pool when they were young. I wonder if they will know one day the circumstance in which my daughter was saluting them, even the dog was obliged to salute them :) This is from our our TV screen, capturing the 'Salute' moment.



And, of course, we had the very important Glasgow Climate Change conference. When I studied International Relations (IR), we were all asked at the end (2013) what, in our humble opinion, is the biggest current challenge in IR. I wrote about 'Climate Change', we were only two thinking so. 



What can I say now, it has been a tough year, but sometimes, 'just getting through' is good enough. This is from the FB Pain Management Australia page.




And there is no need to wait until things get better to dance while one can 



One step at a time!



Since my marriage was also registered in France, I had to have it dissolved there as well, and of course, I did not get any help there either. I registered my request on the 20th of October 2020, the day my Australian divorce was finally granted. Since we were in the midst of covid-time, it was a very slow process. Yet, on the 9th of November 2021, my divorce was finally granted in France by the Nantes Tribunal de Grande Instance which deals with expatriates Civil Acts. I received the news from the Sydney French Consulate on the 30th of December, 2021. 
This wasn't easy! ... yet a good omen to truly close the year.