Katinka in the Clouds - Blog

The blog of Kate Griffin. For the last 33 years we have lived up here at the head of the Holme Valley and have not once felt any urge to move again. It has proved inspirational for me. The places where I set my stories and plays, whether it is north, south, east or west, have as much significance and potency as the characters, and since living here the landscape has had a profound effect on my writing. In the last few years, since health problems have clipped my wings I have taken up painting and much of what I paint is very local, sometimes from the house or garden. In my writing I have explored the lives, loves, passions and drama of ordinary people, often taking audiences and readers into dark and uncomfortable places and now, in my painting, I have found, using the texture of paint and the juxtaposition of colours, a new way to express my passion for the tough and gritty world that we live in.

Country Bumpkin braves the metropolis. With Zebra.

Country Bumpkin braves the metropolis. With Zebra.

Well, what happened was this: my consultants do not feel confident about making a dx of OB so I suggested sending my scans to a radiologist at Royal Brompton Hospital who has a world-wide reputation for dxing Small Airways Diseases from scans. People send him scans from all over the world.  The NSAACAAP (Not-So-Awful-Asthma-Consultant-Almost-A-Pussycat) was happy to do that.  Wrote to me a few days later to tell me that the radiologist had retired two weeks before and was I happy for the stuff to go to a Professor, expert on ILD and other fibrotic lung diseases?  So I said yes.  Three and half months passed and so I got onto NSAACAAP’s secretary and asked if a gentle nudge would be appropriate. She got back to me, re-sent all the stuff and said that if I had not “got an outpatients’ appointment” by the beginning of September to get back to her and she would chase it up.  Well, I was somewhat gobsmacked.  I really was not expecting an appointment.  But last Wednesday I had a phone call from the Prof’s secretary inviting me for an appointment at RBH on 25 September.  So I snapped her hand off and — obviously — I am going.  Really quite tricky as I am so breathless.  I am going on my own by train, taking a taxi to the BRH, and I am booked into the accommodation round the corner.  I will be seriously wiped out for seeing the Prof, but maybe that is a good thing?

 

 

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Urban Otter Watch

Urban Otter Watch

One of the silver linings of having a lung disease is that it means I have to stop frequently to get my breath back.  It gives me a moment to look around and see things that in my previous life went unnoticed. 

 

I need to do this a lot in Holmfirth and it is the river that I try to get to for these periods of recovery.  A week or so ago, with a friend, I stopped on the footbridge from Crown Bottom car park to the little park.  We looked down at the river, as it gurgled away beneath us and then down the river towards us came a creature.  It was about two feet long, head and body, with a long tail and was swimming under water.  It came near the bridge and put up its head.  It looked like a cute miniature seal, with a broader face, and tiny ears. Then it turned towards the bank, climbed out and went into a hole between two blocks of stone that buttress the river bank at that point.  We looked at each other and said, in unison: “What was that?”  Then a second one followed and did exactly the same and joined its mate or sibling in the hole.   Well, were they otters or mink?  I felt sure that there was no way that they could have been otters.  In a town?  In broad daylight?  Under a bridge with people thumping over it all day?  In the thirty five years we have been here no one had ever mentioned otters in our river.  And yet, and yet it kept niggling at me.  So I phoned our local outpost of Yorkshire Wild Life Trust, spoke to someone there and described what I had seen.  He felt they were river otters.  I said that I would try to video them and send it in to them.  Then I contacted the U K Wild Otter Trust and again the man I spoke to there was of the same opinion.  He said that otters were becoming more common towns and were seen during the day.  I think the fact that they were swimming completely submerged was distinctive.  They were small, but they could have been young ones or a mother and offspring.  Mink have nasty mean, weaselly faces, but I was so wanting to believe they were otters that I think I am capable of subconsciously seeing what I want to see.  

 

If you are going to roll your eyes and say “For goodness sake, Kate, we’ve had otters in the river for twenty years.  Do you walk around with your eyes closed?” I would feel foolish and sad.  So please don’t.

 

When I was a child our lodger, who went by the soubriquet of Hazel Hairy-Whatnot to us disrespectful children, had a friend to stay.  This friend was from Cornwall and her passion was otter hunting.   My sister thought up a scheme of revenge; we would gather together the sharpest and most weapon-like of the garden tools and burst in on her when she was having a bath and attack her so she would know what it felt like to be an otter.  Needless to say we didn’t do it.  But it was a nice moment of fantasy.  Oh, the simple blood-thirstiness of children.  Otter hunting has never been officially banned but it died out in about 1978, because of the shortage of otters and the negative publicity it attracted.

A few days later I saw one them on the bank, but it was at a distance and I cannot be sure whether it was an otter or a mink.

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Kate Griffin
Confirmation is coming from people who know!
Monday, 21 August 2017 10:46
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It's not always about lungs, you know

It's not always about lungs, you know

Kate peered at the image: “Hmmm…” she mused,  “Looks like bronchiectasis, and a bit of scarring, possibly non-specific interstitial pneumonia, and a red nodule in the right lower lobe?  What’s that white stuff?  Ground glass opacity? And those black splatterings are definitely sinister.”  Then the voice of sanity prevailed: “Oh, for goodness sake, woman, get a grip, that’s not a diseased lung, it’s a nicely grilled and well-seasoned piece of steak in a LIDL barbecue promotion.”

Diagnosis?  Chronic cyberchondria.

 

Posted on the British Lung Foundation patient forum.

 

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Medical Detective work

Medical Detective work

Last week I found myself using the phrase “homing in on a diagnosis.”  And realised that the lurching, shambolic saga of the last nearly seven years since my lungs became damaged was like a TV crime serial.  And I am the maverick, half crazed detective, who is always at the centre of these tales. He or she is always suspended from the case, is pitied by the kinder members of the team and scorned by the youngsters.  This anti-hero invariably has some tricky lifestyle issues, drinks too much, smokes  — of course — and has a messy private life. And at some point in the story someone in authority or a friend will take them to one side and say: “Don’t you think you are too involved?  You are becoming obsessed with it.  I really think you need some help.”  And then there are the blind alleys, the false arrests, the pursuit that ends up a cul-de-sac and gets nowhere.

And always there comes a moment when it all falls into place.  The team is beaming in the scruffy, foetid, detectives’ office. “Good result, lads. Let’s go off and get pissed in the Truncheon and Taser.”  And then just as the door closes on the darkened room the phone rings.  And you know it’s not over.

In June I believed that the last piece of the diagnostic jigsaw had fallen into place.  And I think LLC (Lovely Lung Consultant) did as well.  A diagnosis of Pulmonary Hypertension from an Echocardiogram did it. 

We thought. 

Then four months later one of the specialist cardiology consultants in PH emphatically told me I did not have PH.  Now, no one in their right mind would want to have PH, but it had been a relief to me because my symptoms were difficult to deal with.  Once I had that diagnosis it meant that I could in some way relax, no more looking things up, no more having to politely insist with Doctors, no more nudging my darling LLC.  I could cope, because I knew what it was.  The baddie was behind bars.  The case was with the CPS.  A conviction was inevitable.

Then this very unsettling moment.  It was like looking in the Radio Times and realising that it was only episode four in an eight part serial and so there was no way the plot had reached a conclusion. 

Silly me for thinking that it was all over. Back to the drawing board, or the Google School of Medicine.  And like all good detective stories it is picking up the strands of something which I had identified over three years ago as a possible answer.  Way back in episode two of the drama.

But — oh boy — do I feel exhausted with it.

And, actually, I do think I do have mild PH.

But there are others aspects of this complex tangle inside my ribcage which are not explained by PH, OB, or CTED.  So onward….  But I can’t do upward.  I really, really can’t do upward.

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Dead lines... A blessing or a curse?

Dead lines... A blessing or a curse?

I have just taken a big risk. I have given myself a deadline to finish a play by the end of January.  I have invited the cast here on the afternoon of the last Sunday in January for the first read through.  Eeeekk!  How scary is that?  But also quite exhilarating. 

And now I have gone even more public by decaying it here.  There will be people who will hold me to account. 

It will have to happen now.

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You cannot be serious?

You cannot be serious?

Narcissistic personality disorder: people suffering from this psychosis are seriously disconnected from the reality of who they are, they have massively inflated ideas of their talents, capabilities, their worth.  They believe the world revolves around them and that they are entitled to the best of everything: they will simply grab what they want, be it money, sex, or power. They are blind to their faults and failings and incapable of seeing the world from anyone else's perspective.  They have never been known to apologise for anything they have don, and will brush off criticism with a put down remark: "Haven't you got a sense of humour?" or "It's only locker room banter." 

Someone with narcissistic personally disorder thinks they are the most important person in the world. 

What happens to the world when they are actually elevated to that position? 

 

 

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A battle?

A battle?

Many, many years ago a very dear friend, (let us call him Paul,) phoned me.  His partner, (let us call him Michael,) was dying of terminal lung cancer.  Paul was phoning in a panic to say that Michael was unconscious. He had phoned the emergency services.  I asked if he wanted me to come round, and he said yes.  I arrived just as the paramedics were coming downstairs.  It was obvious from their demeanour that Michael had died.  Paul and I had a hug, and talked for a while.  Then, as we were waiting for the GP to come, confirm the death and issue the death certificate, I asked Paul if I could sit with Michael for a while.  I went upstairs and sat beside Michael’s dead body. What happened next took me a bit by surprise.  As I sat there a strange notion came into my head.  I just knew that the cliché about battling with cancer was a nonsense.  It was not Michael who had lost the battle; it was the cancer, parasite-like, that had killed its host and had nowhere to go.  And Michael was the one who was free, no more pain, distress, anxiety, fear.  He was the winner.  I have no idea about what happens after death, I am complete agnostic about such matters; some people do have a clear idea, I just keep discreetly quiet about it.  But I did know that in some way Michael was safe and liberated.

I had always hated — with a passion — the glib journalistic platitude when a death is announced and they add:  “She/he has lost their battle with cancer.”  And what I felt, sitting there with Michael, confirmed that reaction.  And I am not the only one.  There have been a plethora of books, blogs, vlogs, written by people with cancer and a recurring theme is the dislike about talk of “the battle”, and “bravery”.  I can remember reading John Diamond on this subject.  He said having cancer does not automatically confer “bravery “on the patient.  He had no sense that he was fighting or being brave, he was just doing what the doctors told him to do, taking the medication, weighing up pros and cons when choices  were offered and generally feeling s***t scared.  And he did not know what “being  positive” meant.  I have read similar reactions from others.  Having cancer does not set the patient aside and elevate that person to some heroic status.

And neither does any other disease. 

Why do I feel so strongly abut this?

Well, first, it is yet another way to blame the patient.  If things are not going well for us then, according to that scenario, it is our fault because we are not fighting hard enough, energetically enough, we are not using our weapons correctly, we are not — God forbid — being positive.

And, secondly, because — for me — it simply does not feel like a battle. Maybe for some of you do it does?  Yes, I do accept that breathing, discomfort and pain is a struggle, but that does not quite make it feel like a battlefield.  What I do feel is that I am intensely human: real and alive in a new existence, a new phase of life, a new stage of the journey.  And I promise in spite of what I said about the afterlife, I shall come back and haunt anyone who writes, says or even thinks; “Kate has lost her battle with lung disease.”

This was triggered by our going to my sister-in-laws funeral on Wednesday and listening to my brother speaking of her and about her cancer. 

Kate 

 

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