The inconvenient walking dead… III #COVID #cancer #carers #lockdown

Image of cartoon Angry bird about to blow

Artwork by deviantART artist Scooterek

Following on from posts One and Two:

“Birds sing after a storm; why shouldn’t people feel as free

to delight in whatever sunlight remains to them?”

Rose Fitzgerald Kennedy

Last spring when we went into lockdown and we were encouraged not to burden our doctors, I did not take my concerns to the surgery… and lost six months of potentially treating a now untreatable cancer. Now we are back in lockdown again, with the unconvincing prospect of everything being alright again once the vaccine has been fully distributed. We might, suggest the government, if enough people have the vaccine, even be able to begin lifting restrictions in mid-March.

At my last appointment on New Year’s Eve, the oncologist gave me three to six months. It is, I know, just a ‘guesstimate’ based on experience. He could be wrong, it might be longer… but it could equally be even less. The thing is, with this type of cancer, the treatments stop working quite suddenly and the tumours grow back quickly. There may be a case for more chemo, but that would be a rough journey without guaranteed results. There may be alternative therapies to try… but they are alternative for a reason and, like mainstream medicines, do not work consistently for everyone. And my heart, which has been constantly beating at least twice its normal speed since the collapse,  could now give out at any point between here and the nebulous ‘then’.

March might be a tad too late for me.

And that is just a start on rolling back restrictions. There’s the whole vaccine thing to come into play too. Sufficient doses have been purchased… but not yet delivered. Some need further quality control checks… others are waiting to be put into the vials that are in such short supply. No guarantees appear to be in place about delivery times.

And then you obviously have to wait your turn, based upon pre-determined vulnerability and, one assumes, your perceived usefulness and/or the likelihood of catching and transmitting the virus to the vulnerable. There are nine high-priority groups, covering about thirty million people. The higher group into which you fit, the quicker you will be offered the vaccine, but even with it, you will still be required to wear a face-covering and practise social distancing… because you may still get the virus and may still transmit it to others. The vaccine is not going to mean an instant release from COVID jail.

Just the timescales alone mean that offering the vaccination to a whole population is going to take a while. Then there are the logistics of actually delivering the vaccine and ensuring the right numbers of appointments can be booked, filled and supplied… and getting the estimates on take-up right etc, etc…

But there is a really helpful calculator online that gives you an estimate, based on current predictions of take-up rate and actual vaccinations carried out per day. So, of course, I tried it.

First I put in just my own details, finding that my place in the queue would be somewhere between half a million and four and a half million (roughly) down the line. According to their figures, that would mean I should be vaccinated and ‘fully protected’ some time between the end of March and  April.  That is also assuming there is only a 70% uptake from a population that has been taught to fear the virus and to believe that the vaccine offers the best way out of this imprisoned lifestyle… and that the vaccine can be delivered on a daily basis in high enough quantities to meet the demand.

Again, the dates mean it will probably come a bit late for me and for the thousands of other terminally ill patients currently facing the prospect of dying without their nearest and dearest able to support them properly… and also for those who are about to lose their loved ones to terminal illnesses without the chance of saying decent goodbyes, which always makes the loss and the grieving so much harder. COVID had already closed all the organised support groups and stopped all the additional therapies offered to help get through these hard months. Too many are having to face this final journey alone… and not everyone is equipped or able to use the various technologies that at least let you see people through a screen. Nor is it quite the same.

But looked at from a purely practical point of view, why waste a vaccine of someone who is dying anyway? Just lock us away in our shielded homes from every joy that makes life worth living… from the hugs, the smiles, the warmth of another human being’s presence, the landscapes and horizons… After all, we will be dead soon and unable to complain.

But I was curious to see why there was such a wide gap in the figures and, being suspicious, reset  everything on the calculator except my age to the default positions. I then checked when the vaccine would be offered to a care home worker…. and the difference between that figure and when it would be offered to a family/unpaid carer is stark and horrifyingly illustrates how little family carers are valued by the system. It was about here that I went from simply annoyed to really blowing a fuse…

This same system is saved the cost of the NHS, every non-covid, year by family/unpaid carers. They pick up the slack the system simply could not cope with. There are now an estimated 13.6 million unpaid carers in the UK… many of whom are carers seven days a week, day and night, with minimal breaks or training, often little or no support and no health and safety protection. And those are just the ones we know about. There are many others.

Imagine if the country actually had to pay them for what they do… finding the money for that on top of everything else. And yet, while the care home worker will be ‘fully protected’ by the end of March, the family carer has to wait until the end of September… and who knows what could interrupt the vaccination schedule in those six extra months?

The family carer comes almost nineteen million places behind the paid care home worker in the queue. The only justification for that is that the care home worker may come into contact with other vulnerable people. But what about the mother who cares for the rest of her family… her own children, parents and grandparents, as well as holding down a job? For that is often the case. Or the child who supports physically or mentally challenged parents and does the caring for the elders that they would normally do, on top of being a child themselves? Contact with multiple vulnerable people is not limited to front line workers.

COVID, care and cancer. The relationship between them and how it has been handled is telling. “How a society treats its most vulnerable is always the measure of its humanity.” This quote can be found on the UK government’s website, attributed to one of the UK Ambassadors speaking to the United Nations.

Perhaps we might want to take note…

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See #midnighthaiku

Eyes that chose to see

Beauty in the darkest days

Touch the heart of light

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A First Connection ~ Peter Wells at Countingducks

Reblogged from Countingducks:

When I met her she felt her beauty was a recollection: her power to attract, she feared, long since gone and she was defenceless against the scrutiny of those less charitable than herself. She was a drunk in a bar at some place I had never visited but had stopped at in search of shelter. I don’t know how old she was but I’m guessing she thought her sixties seemed like youth and she was now alone with her incongruous health: drunk and smoking like a wild thing: she could still stand and dance and become the abandoned hippie she might have been fifty years before.

Continue reading at Countingducks 

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Discovering Albion – day 8: Marooned

scotland trip jan 15 257For with the flow and ebb, its style
Varies from continent to isle;
Dry shod o’er sands, twice every day
The pilgrims to the shrine find way;
Twice every day the waves efface
Of staves and sandalled feet the trace.

Sir Walter Scott

scotland trip jan 15 304We arrived an hour before the tide would come in, drowning both the causeway and the ancient pilgrim route that still crosses the sands and the mudflats. It would either be a flying visit where we would see little, or we could choose to wait until the tide went out, some eight hours later to leave Holy Island. The causeway would be lost beneath the sea and the Island would become itself for a while, cut off from the world and a place of utter peace at this time of year… We weren’t in a hurry.

scotland trip jan 15 465We parked the car and walked down to where we could see the castle. My companion had never visited Lindisfarne before and I had managed only the briefest of visits, always ruled by the tide and other obligations. This time we could explore. We drove slowly across the causeway. The sands and grasses of the dunes seem not to form a clear delineation between sea and shore and it seems odd to drive where you know there will soon be waves.

Continue reading at France & Vincent

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Mad Aunt: A Fairy Tale…

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‘Faggot – n. a bundle of fire sticks’ OED

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A Song for Two Voices

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M: It was Christmas Eve babe
In the drunk tank
An old man said to me, won’t see another one
And then he sang a song
The Rare Old Mountain Dew
I turned my face away
And dreamed about you

Continue reading at France & Vincent

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Designer Protection…

HM15 1286*

Without the crack

could black

shell of Night

ever give flight

to break of Day…?

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Reblogged from France & Vincent

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A Day saved by a Church ~ Steve Tanham

I had meant to write a blog about Covid; about the way it is changing our world, and not just from a health perspective. Finishing on whether there is a dimension of spiritual (consciousness) development in what’s happening to our societies.

But…

But I’ve been up since 05:30 and had a day with my mother, a woman approaching 91 years whose vascular dementia has galloped along this past six months. If you’ve been there, or seen a relative or carer being ground down by the sheer effort and often futility of a day spent trying to ease their relative’s burden, then you’ll know what my face looks like, having just arrived home at seven in the evening.

Continue reading at The Silent Eye

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The inconvenient walking dead… II #COVID #cancer #carers

Angry bird cartoon on IV drip

Artwork by deviantART artist Scooterek

Continuing from yesterday’s post…

A few days after speaking to my GP and before the hospital referral process could kick in, both I and one of my lungs collapsed. I was lucky to have my friend with me at the time, otherwise, I would not now be here writing this.

I was admitted to hospital. Worryingly, via the resuscitation suite.

Once on the ward, they drained a massive build-up of fluid from around my heart and lungs, by the simple expedient of sticking a needle through my back and into the fluid. Not exactly comfortable, but it gave me instant relief from the months of back pain.

They also did a needle biopsy in the CT scanner. The needle is not precisely fine, they do not put you to sleep and if they have to wriggle the needle once inserted into the lung, it does hurt like hell. I was diagnosed with incurable lung cancer, ‘stage four plus’. On all the available scales for grading and staging cancer, I scored the worst. It was at this point I signed the DNR, so that should my heart stop, they will not use CPR or waste an intensive care bed to try to bring me back when my heart can no longer cope.

Still officially a carer and employed, I was signed off work for two months. Another two would be added later… with the unlikelihood of ever returning to my job making itself felt. My options were limited. Radiotherapy and surgery were not possible, which left only chemotherapy and immunotherapy with which to attempt palliative treatment in the hope of extending life of a decent quality.

Chemotherapy has been around for a while, but immunotherapy is relatively new. It does not work for everyone. The only thing you can predict with any certainty is that the side effects are going to be as unpleasant as, and very similar to, chemotherapy. They include, but are not limited to nausea, vomiting, sleeplessness, oedema (swelling), mood changes, hair and nail loss, digestive problems,  liver and kidney damage… the list goes on. It is extensive and appalling. You need a really good reason to put yourself and your loved ones through that.

Because of the COVID-19 situation, I was categorically told at the time, both in writing and over the phone, that I could have no-one with me for the appointment when I was to be told all this; no hand to hold, no shoulder, no moral support. I was later told that this was wrong, that I could have had someone there… but as with much of this COVID debacle, by then, it was too late. Once passed, you do not get these opportunities back.

So, alone with the oncologist, the nurse and more information than a stunned mind can process at once, I took the difficult decision to go for the chemo/immunotherapy combo. This entailed having intravenous drugs dripped into my bloodstream on three consecutive days every three weeks… three drugs on day one and another dose of each chemo drug on subsequent days. These drugs are so toxic that only the fact that they can conquer cancer makes them acceptable. Veins which had always cooperated until this point ran away and hid, so each session also ended up needing several attempts at inserting the cannula into a  vein, and arms that were black, blue and swollen. My stomach was little better, as each cycle of chemo sessions was followed by seven nights of giving myself injections in the belly. Thankfully, I have no fear of needles… just of runaway veins…

The first month wasn’t too bad, aside from the inability to sleep and the constipation caused by the drugs which caused both much merriment and severe distress. I hadn’t been sleeping well for months because of the pain I had put down to my back. But the side effects are cumulative and towards the latter end of the treatment, the ‘good’ days between treatment cycles were few and far between.

By this time, I was so grossly swollen and breathless that I was sent to Emergency for further scans and tests to make sure I did not have blood clots, blocked veins in my lungs or some other unforeseen horror. Nothing was found and it seems I just have to live with looking like a fat, over-inflated caricature of myself, with mole-like eyes that occasionally disappear, a reddened face… and completely bald too, apart from the ‘Tintin-esque’ fringe that seems to have survived so far.

It is all very depressing. And, because, behind the masks it is less easy to read people by the normal cues, I am now judged as a fat old woman and treated accordingly… and you would be surprised at how much of a difference that makes to people’s attitude towards you. That too is depressing. Of course, as I have what is officially classed as ‘breathing difficulties’, I officially don’t need to wear a mask… but try that and see how you are treated then… That is just way too depressing.

Just days before Christmas, I finished the chemo, although the immunotherapy (and, I fear, the injections) will probably go on for the rest of my life. I had tried to maintain good humour, but I often failed… Being exhausted and yet unable to sleep made it worse and I got snappy, I cried a lot in private, set off by the smallest of things, and was desperate for a hug. Then would come the days when I would catch up, like it or not, and sleep for eighteen hours…usually on the sofa and with the door open for the dog.

Sometimes, I really wondered if I had done the right thing. It was unlikely I would have made it till Christmas without the chemo. But, maybe it would have been better to just slip away quietly… die quickly and solve the problems for everyone… except those you love. Or maybe, I thought with more hope, after Christmas, I would be able to spend time with friends and family, get out into the land, just have bought enough time to compensate for the three months lost to COVID restrictions.

Because love was the reason I was doing all this. Not time.

Yes, another decade would be nice. Okay, even a couple of years would be good… but I knew that was unlikely to happen. Only one in five people with this type of cancer (SCLC) who are diagnosed at this stage will live for a whole year after diagnosis. I had done plenty of research.

We have been in a similar situation before too. My late partner, who my sons had thought of as a father, had died of cancer. Even so, his death at that point was unexpected and I had only been able to watch my sons suffer as they grieved.

I just wanted enough time to be able to spend with the people I love… to play with my granddaughters, to be with my sons and my partner, to hug friends and family and make memories. And maybe, being able to spend that quality time in love and laughter together, we could all grow used to the idea, at least a little, and it might make my passing just a touch easier for them with every temporary ‘goodbye’ and ‘see you later’.

At least, that was the idea…

(To be concluded tomorrow)

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Promise #midnighthaiku

January’s rose

Promise of spring in winter

The colour of hope

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Inexorable

What was and what is will be

The wheel always turns

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Geoffroi de Charny and the Turin Shroud ~ April Munday

Reblogged from A Writer’s Perspective:

These week we’re continuing with our look at aspects of the life of Geoffroi de Charny. Like most of his contemporaries, de Charny was very pious. In the 1340s he started planning the building of a church on his estate at Lirey. He wanted to have five clerics in the chapel who would pray and say masses for himself, his family, the king and the royal family. It was in relation to this church that the Shroud of Turin was first mentioned and De Charny was probably its first owner, if not the person the commissioned its creation. He’s certainly the first verifiable owner.

The first mention of it being in his possession was in a papal letter written not long after his death, when de Charny’s son had inherited the shroud. De Charny junior gave exhibitions of it to the public to no little scandal, since he gained financially from it. It’s possible that de Charny himself exhibited it around 1355 to 1356.

Continue reading at A Writer’s Perspective

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