Ping – a poem

Ping went the strings

On the canopy of everything.

By Samantha “unextraordinarybint” Harris

Tuberculosis is at Lowest Levels.

Detected.

request for sputum test
sputum test request showing to exclude TB in fifty year old female within a national health system

Most British people in their fifties were vaccinated against Tuberculosis at school.

I was one of those that queued up and got my TB shot.

But how long does it last?

This was the advice researched and copied on 24th July 2021 from London, UK.

Independent advice from the Guardian newspaper.

TB vaccine BCG effective for twice as long as previously thought.
https://www.theguardian.com/science/2017/aug/31/tb-vaccine-bcg…
31/08/2017 · Benefits of world’s only vaccine against tuberculosis were underestimated as new findings reveal it protects against the disease for at least 20 years.

American Advicewhich is slightly worrying tbh, as a Brit who’s had it.

Vaccines | Basic TB Facts | TB | CDC
https://www.cdc.gov/tb/topic/basics/vaccines.htm
TB Vaccine (BCG) Bacille Calmette-Guérin (BCG) is a vaccine for tuberculosis (TB) disease. This vaccine is not widely used in the United States, but it is often given to infants and small children in other countries where TB is common. BCG does not always protect people from getting TB.

United Kingdom of British Isles AdviceWe have a National Health System.

BCG tuberculosis (TB) vaccine overview – NHS
https://www.nhs.uk/conditions/vaccinations/bcg-tuberculosis-tb-vaccine
It’s less effective in preventing TB that affects the lungs, which is the more common type of TB in adults. Read the patient information leaflet for BCG AJV vaccine (PDF, 272kb) Read the answers to common questions about the BCG TB vaccine. Side effects of the BCG vaccine. Reactions to the BCG vaccine are uncommon and generally mild.

https://www.nhs.uk/conditions/vaccinations/bcg-tb-vaccine-questions-answers
The BCG vaccine contains a weakened strain of TB bacteria, which builds up immunity and encourages the body to fight TB if infected with it, without causing the disease itself. The BCG vaccination is thought to protect up to 80% of people against the most severe forms of TB for at least 15 years, perhaps even up to 60 years.

So why aren’t our NHS testing people with shadows on their lungs for TB??? I know this because I am one of the people who has been in contact with someone who has TB. I went on to have symptoms and diagnosed as COPD, but I’ve never had my sputum tested for tuberculosis because I had a vaccine thirty five years ago.

This worries me. I’m definitely not a doctor but it does interest me because it’s weird.

Just before covid19 hit our countries TB was starting to hit the headlines with a huge transmission in Wales killing at least one person.

A person has died following a tuberculosis (TB) outbreak in a Welsh village.

A further 80 people in the Llwynhendy area of Llanelli, Carmarthenshire, may have also come in contact with the disease and have been told to attend screenings for the condition in June.

And there was this…the first person to get corona virus 2019 was a Welsh teacher.

Connor Reed, 25, caught the strain while teaching English at a foreign language in a school in Wuhan – the epicenter of the outbreak – at the end of November 2019. As stated by the Evening Standard in May 2020.

This all adds up to some questions for me…What about you?

For those of you who are unfamiliar with the geography of the United Kingdom, it includes Wales.

The 2525 Pilgrimage

Inspired by a Zega & Evans song, released in the 1960s, called ‘In the Year 2525’.

The 2525 Pilgrimage by Samantha “unextraordinarybint” Harris

Centuries since Corona Virus Alpha hit Earth devastating our population, I sit here using a rusty blade, scraping marks in hope that I won’t be discovered by our monitors. We use this ancient fridge for storing clothing; working well for keeping moths out, my up-bringers and I sharing it. Now, it will bare these words for history.

At school, we’re told our ancestors used the fridges to keep carcasses fresh. It was a time when humans battled with each other, spoiling the planet with poisonous weapons. A time when people murdered Earth’s other inhabitants; selfishly eating animals, using them as a source of protein, they’d manufacture products from their carcases and enjoyed wearing animal skins, even using bones for medicinal broths and industrial glues.

I’ve never known a cold fridge. The harnessing of electrical power was outlawed for humans in 2050. For our safety, AI automatic droids maintain our planet’s electrical grids. Distribution and supply is strictly rationed to Necessary For Life organisations and not squandered by people.

I’m told my ‘need to create’ is an escalation of my illness, so I must be cautious. I’m a committed New Beginning Believer but the evilness of bad mental health remains. Managing to physically scrape one word a day has taken discipline. My addiction craves more, risking raising my heart rate to a detectable level.

Weeks after the Corona Virus Zeta variant attacked the planet in June 2030 a cohort study showed how vulnerable humans became when out of their homes. As a major medical discovery it saved billions of lives but had not been welcomed by all. Deadly violent protests spread across the world faster than the virus, destroying cities and towns, cutting utilities and leaving land scorched with fire.

It is history now, how it was necessary for AI to oversee human health for The Common Good and the protection of our species and our solar system. Our homes, for our safety, had to become human cages.

Robots now distribute our care, limiting human error. Armoured vehicles travel streets delivering water tablets and nutrition, monitoring our vital signs so we rarely starve if we are viable. Thankful, we watch through holes we’ve piped into the hives on our windows.

Foxes, snakes, sheep, wolves and deer roam outside our homes on cracked tarmac. The grass verges, left to grow naturally, encouraging wildlife, are now host to the genetic insects released to combat stray humans carrying disease. Building nests and hives around us they are able to monitor movements keeping AI informed of our well being.

State television transmits a basic program service with special entertainment on Saturday nights. Generally television informs us of how the latest health programme progresses, which locations are expecting the Build Back Better vaccination robots and the daily birth rate over death rate graph.

International Communications are impossible for most since the satellites were, for our safety, reconfigured using the same space drones that humans had invented for mining exploration. Anti vaccination terrorists had to be stopped from using the networks to organise resistance and had been blocking The New Beginning Faith broadcasts.

Automatic trucks collect human waste weekly from each street moving it to a collection point where it’s transported by crane into giant airships run on biofuel. These craft transport the sweet smelling load to the ocean where it is released for the marine life to feed upon. Diet, controlled by AI, allows us to now produce nutrient rich waste which is useful until our deaths.

Few natural humans, other than royalty, can safely move around outside. We don’t have the genetic makeup. Crane drivers have outside protective freedoms. Having a skill AI can’t master, they bare witness to how the Build Back Better system is working. I’m assigned a crane operator as my lover. I pray we’ll be fruitful.

Gratefully, I’m able to leave home once in a lifetime. I’ve been researching my Life Pathway Journey on the battery run Ethernet computer. It will be so exciting to see The London Eye. One has to be patient as the current female pilgrimage age is the first month after one’s fifty-fifth birthday.

I pray I will still be considered worthy.

The End.

Letters 25th November 2020. RE Flu.

So, today I got a letter. Like the recent text messages, it tells me that I need to have my flu vaccine. It tells me that it is my responsibility to get it because of covid19…blah, blah, blah.

Good stuff you may think. I may add that I think vaccines, overall, are a good thing.

However, I am auto-immune deficient because of a foreign body reaction to polypropylene which was placed in my pelvic area during a hysterectomy for Endometriosis. I had my flu vaccine last year as I have COPD and Ehlers Danlos.

I didn’t know last year, that people who are immune compromised shouldn’t be offered the new adjuvanted flu vaccine and, it seems, neither did my doctor and I became very ill with flu over Christmas 2019. Two things –

  1. I shouldn’t have been offered this particular flu vaccine and should have had the normal one.
  2. My reaction to the new adjuvanted vaccine must not have been picked up by the system.

I called the GP. I spent three whole minutes listening to their automatic message telling me to go to the website and do the business online. Whilst listening I did try their online consultation but it is not possible to turn off the tracking cookies so my PC says no.

Anyway, I get to speak to the receptionist and explain I need a COPD check and to talk about the flu vaccine I keep being asked to have. A doctor calls me within the hour which is amazing as I just waited ten days for telephone consultation over my sore rectum.

We speak for around fifteen minutes. She checks my records, see the novel virus diagnosis and logged visits to myself last year after my flu vaccine. She has no problem checking the box which says that I had a reaction and not to be invited for it again. Brilliant stuff.

Having read the recent warnings from the American drug regulators I am wondering if the UK will also issue a similar warning. It is not suitable for everyone. Vaccines are not a one treatment for all and should be used on patients able to cope physically.

As always, thank you for your time.

Ruby Wax and Me – Nipple Poetic Story

There is a woman called Ruby Wax.

A more lovely woman you would not see.

She has cheeks of red which glow, and she hates them so.

Excitable she be and there are none funnier than she.

In earlier days she travelled around England to circumvent our inhabitants.

With Hit and Run, she met me.

Robert Lenkievitz’s model was I with breasts that you could anchor a ship on.

A study of St. Anthony found me naked on the BBC.

The next day, at my work, Boss was grinning like a jerk.

By lunchtime she’d made me coffee and then slyly asked me.

Yes, it was me.

Modelling naked on the TV.

Better though, I said, glowing rather red, was being interviewed by Ruby Wax.

I was immortalised on canvas and TV and that history could haunt me.

But proud, eventually, I would become; of my breasts, nipples and bum.

Meeting Ruby Wax who is a comedy best was the making of that assignment for me.

Afterwards, she went down to Longleat, for tea.

I went back to my bar, as the maid I really was, then I got fired because I’d posed naked for The Painter. See? One rule for one and another for me.

Now, I have Ruby Wax on my Facebook but she does not know that I was the body on which one of her episodes did close.

The End.

Thanks for reading.

https://youtu.be/TqlN3zJUWEY – you tube links are rather unreliable in UK so you could search for,

“Ruby Wax meets Robert Lenkiewicz in Plymouth, 1990. Hit and Run. “

Thanks for your time.

https://youtu.be/TqlN3zJUWEY

It took a year for this program to air – hence the two job reactions.

Ancestors Race – Poem

Ancestors tell me

In voices clear

Be close, but not near.

For centuries they took us

Never seen again

Ancient bones remain hidden

Under greed, envy and pain.

Wrath settles in dust.

Waken state they wake

Soldiers shoulders wide

Enemies show their scales

Poking the bear on the line.

Snakes rattle and spit

Ancestors remind me of it

Pirates of Barbary

Fair freedoms fought

Hold children safe

Whilst history is untaught

As we move into darkness

I hold to brotherly faith

I remember the contest but

Never the race.

The end.

By Samantha Harris

Leviticus 2-13 Salt

I’m looking into some bits for research and come across this Bible passage.

It has undergone many changes over the centuries.

I like King James version but I suspect believers have their own take.

All the versions are fascinating and say something of the time they are in.

They are all to do with offering meat or grain to God but ensuring it had salt.

Does God have a savoury snack thing going on?

In my country, UK, we have a very popular saying, “I’ll take that with a pinch of salt.”

It means that what you are being presented with is not worth believing.

Funny, as both that saying and the Bible were made/printed and published in England, UK.

Many people have told me that because I live in England I must be a Christian. No, we lived UNDER Christainity for centuries but now the law and the Church are separate.

Most people in the UK are pagan or atheist. The rest is divided by the many surviving different sects of Christianity and other fashionable religions.

Stone Henge is still our cultural spiritual home. Wood Henge, close by, reminds us of the movement/growth of faiths and how they change.

Most of what people read about UK is propaganda. It’s like the shock I got when I went to Israel. The media lie.

Religion has it’s place but it should be taken for what it is, words written by humans.

Leviticus is saying something with this passage and I believe it’s about not taking it too seriously…

Thanks for reading.

By the way, I was researching, ‘How to Make Bible Cake”, when I found the passage.

Could be a good covid19 challenge for you all – boredom is a good motivator.

Beautiful Sunset

Today started very grey.

The whiteness surrounded the tower block I live in.

See..

But during the day it got nicer and nicer until this evening, when it became stunning.

Have a wonderful evening folks. It is Guy Fawkes night for the folks of England, I expect to see some celebrations but small scale because of the Lock down.

Freedom and happiness for ever! Stay safe!

New National Restrictions in England – Stay at Home. Protect the NHS. Save Lives.

https://www.conservatives.com/news/stay-at-home-protect-the-nhs-save-lives

Watch “Special report: Infected Blood – The search for truth” on YouTube

So, while the world is looking at blood transfusions to fix the ‘covid19 nightmare’…this is going on.

The link above is for the youtube coverage of the NHS blood scandal which started in the late 1970s and continued – disgustingly- until the 1990s, accidently killing thousands including Anita Roddick who was The Body Shop founder.

It has taken forty years to get here and they have been investigating for some years now.

But was it really an accident?

I’ve been listening to the inquiry and it’s rather sickening. It’s more than sickening. It’s criminal.

At the time in the 1980s, 1990s, the patients’ questions were ignored, children were diagnosed and treated with large amounts of factor 8 after it was known to contain American prison drug users blood infected with the AIDs Virus.

After hours of questioning, the doctor did, when asked if he had anything to say, broke down and said, “It’s bad isn’t it, it shouldn’t have happened”.

Too right it shouldn’t have happened. Thousands lost their lives and children. No one lost their job.

How he did not lose his job is astounding.

Yet, here we are again. Using blood products supposedly safe for use in covid19 patients if the originator has recovered from covid19…is the blood being super heat treated to make sure no other viruses or diseases are present?

If you listen to this inquiry you’ll realise that there is no guarantee of that.

Thanks for reading.

worth watching as not being covered in national media

Jerks – lock down poem

Jerks chase without

Understanding

Speak without

Truth and feeling

Sing without engaging

The heart strings

And know only

Yesterday

Come the hour

All powers

Leave behind confused

Minds…

*******

By Samantha unextraordinarybint Harris.

Nooooooo

I was told in 2009 that my lungs would collapse in two years – so everything is gravy to me…

However, there are some things which happen in my life that, although terrible at face value may serve as a lesson of some sort to someone. This story is not for the faint hearted or the weak stomached. If you retch at the thought of poo, this true story will hurt so just stop reading.

I don’t want to be responsible for ruining your day. Don’t say I didn’t warn you.

Today is one of those days, the incident which happened a few hours ago is a life changing event. That is, I’m so grossed out I am having issues sharing. This is my reality and it’s VERY real so it’s happening.

Sharing helps me to come to terms with the adjustment of increasing disability and the loss I feel. Plus, you must laugh at yourself otherwise you are really lost to the dark side of life.

I awoke feeling knackered from a unrestorative sleep. I padded around the flat trying to stand up straight – this happens to all of us, eventually – and I let the dog out. I make my very weak coffee attend the bathroom, feed the dog, and watch some videos on YouTube.

It’s a slow morning. The weather is grey with streaks of light coming through, a beautiful, normal day.

Bruiser (the dog) has recently become a house guest (again) and we are getting on famously. He was sleeping on the floor when I got up to scribble something down – a popular pastime of mine – and I as I walked across the room, I let out some wind. Quite normal you’d think, although a little embarrassing.

However, a piece of poo flew out of me and down my trouser bottoms so fast, it hardly had time to register, before Bruiser jumped up and ate it. I managed to scream, “noooo”. But it was gone.

Two things.

One is that I’m mortified. The expelling of bowel contents without one’s prior knowledge is a shock. This could be because of the TVT mesh and Stapled Hemroidplexy which I stupidly agreed to. Regardless, this will take some getting used to.

The second is the dog. He ate my poo. He came up to me afterwards for a cuddle. ‘was not happening as I couldn’t look at him. I still can’t, if I’m honest lol. Will our relationship ever be the same?

It took me two hours to stop crying. Two hours. My top was drenched. I then started laughing. This could be the start of a symbolic relationship. I mean I pick up his poo and place it in a bag to bin it. Perhaps he could follow me around and clean up after me? It would save me a fortune in adult nappies (tears again).

I live in a built-up area and the law states one must do this ‘poo picking’. Most dog owners take this responsibility seriously but do not like to discuss it. It occurred to me that perhaps he is returning the favor? However, if this were the case surely, he could eat his own and save me the bother of picking it up at all?

Once I had stopped crying and made an appointment for the doctor, I thought I’d call my daughter and gross her out too… After all, it is a time of ‘sharing is caring’. I did prepare her, before telling her, but that didn’t stop her hand drawing up across her mouth in shock…

After retching some, she laughed and told me not to worry about it. Apparently, this was one of the reasons they had a lock on the babies’ nappy bin.

So, what does this teach us? It certainly has taught me not to rely on wind just being wind.

Thanks for reading.

Halloween is Coming!

Soon it will be November. Already there is a chill to the air, the days are becoming shorter and the clocks went back last night. I woke to all the time being wrong in the house and a leaky ceiling. Thankfully there is much to look forward to. The 31st October 2020 looms….yay.

Yes. Next weekend is Halloween or Samhain. It is when the change from Summer to Autumn and then to the end…to Winter is celebrated. The dead growth period before the Spring comes around again.

We celebrate as it is a busy time. Harvests are in. Food is being stored for the future hard times and celebrations, it is a time to prepare for the coming necessary rest and the big Yule time feast or Christmas celebrations and gift giving. It is now that we start buying or making gifts to give in December – traditionally things which were needed but luxuries too.

If you live somewhere cold you will know not much can happen easily in it. Damn, I need to get fully dressed up in scarf and hat just to put out the rubbish. The wind comes at you from all directions and infection is just about everywhere, running noses, rosy cheeks and coughs are the norm. It is regretful that these things are now associated with ‘disease’ rather than with the normality of life.

So, basically I’m saying in October we are getting ready for ‘batten down the hatches’ – Winter time.

However, before we do so we like to have a gathering for Halloween. There will be party games like What’s in the box? Where children are encouraged to put their hands in to see what they can feel. It is usually something strange like a peeled orange in baked beans… Or play another game, a take on ‘pin the tale on the donkey’ called ‘pin the teeth on the skeleton’.

There will be toffee apples, fruit dipped in candy and chocolate. Lots of different games with apples as this is the tradition. We are not doing apple bobbing this year because of covid19 but there will be apples a plenty. I’m planning to do ‘shrunken heads’ from half peeled apples slightly baked…

There is no traditional food but it is usually something warming and nutritious. This year my daughter is doing Chilli Con Carne…as beef is at a good price and quality. Knowing her, there will be two choices of chilli…one for the children and adults with taste buds, and the other for those of us who may want to treat ourselves to a little spice and heat (regardless of the consequences).

Last year I had more energy, to be honest, and made the toffee apples that are pictured on this article. This year I’m planning some marzipan animals with some red food colouring for effect. We’ll see how we go for time and energy before next weekend. Most of the work for these events is taken over by my daughters now. As I always hoped it would be.

I’m looking forward to seeing my grand children. I’m looking forward to seeing my loved ones…well some of them. This year there will not be so many people as we have a conditional law in place during the Covid19 pandemic. They are calling it the rule of six. NO more than six people are allowed to gather at any one time.

We can obviously get around this by staggering the gathering. I can only attend for a couple of hours max before I fall asleep so I generally trot home after some time with the children – Adults talk all the time so it’s the children I miss as they haven’t mastered the art of phone conversation just yet…all under five years old – it’s cute but its’ not a great way to converse with the young.

I want to play hide and seek with them…and “what’s the time Mister Wolf” and maybe have a pretend fight with a toy, foam swords. I’m looking forward to seeing their little faces when they put their hands in the box and attempt to guess at what’s inside. I’m looking forward to seeing them in their costumes and scaring to hear them squeal in pleasure!

Times are really hard for many people during this pandemic. Small parties and gatherings and any excuse for a celebration is how we move forward in this ‘new normal’ and keep our society going.

I’m pagan but I know that church groups and other faiths are doing the same as me. They are holding on to what is dear to them and celebrating the darkening and lightening of life. I try hard not to take the ‘end of the world’ stuff to heart, after all it’s been said by them for a couple of million years now and we’re still all here.

For those that read my blog regular, my house guest and I are getting along fabulously and he’s had fewer and fewer accidents. Family and friends are coming around to walk him and he spends his time eating and sleeping near the radiators or on the sofa next to me.

Bruiser won’t be attending the Halloween party with me.

The children have already tromped across fields to get their pumpkins for carving… this event was too muddy for me but it looked a lot of fun and the children enjoyed it.

The carved pumpkins will be on display, next weekend, at the party. I may take pics…I may not as could be enjoying myself too much to ruin it by bringing out my phone!

I’ll try and get some photos of the food spread…the treats table. mmm

Thank you for reading.

Be sure to get some candy in for those brave souls who go ‘trick or treating’ over Halloween!

They usually wear masks.

Stay safe.

I Remember You

Duck egg blue

Footwell smell

Proud feeling

Bumping apologies

Fleeing scenes

Visiting

Backward speeding

Flat shoes

Pavement bounce

Driver blues

Sticky shift

Steamy views

I still fondly smile

When I remember you.

End.

By Samantha unextraordinarybint Harris

This is about my first car. Light blue Moris Minor Traveller.

I broke the front axle on it.

Long story.

I might tell it some day.

She was beautiful but annoyingly hard to handle, I called her Gertie.

Thanks for reading.

What was your first car?

Moris Minor

About the New NHS Telephone Consultations…

Get comfy, this is not an exciting read. It’s personal and very boring. I have some good points, I think. It’s a hard time for many of us, if not all of us and those of us with mental health problems are finding it hard to get any kind of advice.

I have two people I trust. They both suggest different things. I am at a loss with this one. This isn’t about my mental health it’s about my physical health but it’s impact on my mind is tangible.

During the covid19 pandemic the NHS has been going ahead with the implementation of digital consultations. They have basically worked out that they don’t actually need to see the patients they can treat them on the phone or by email.

Why have actual patients at all really? Just use our NHS numbers and bill the Trust anyhow? I feel like a used car being bumped between garages until my red warning light goes on. I hope to God that not everybody’s care is like mine.

I have had several of these ‘consultations’ now and quite frankly they could be better and feel like they are a waste of my time – they could be useful but unless doctors do them properly there is no point other than the pay load for the doctor or getting medicines prescribed ( I appreciated that when I had a virus in my eyes in the Spring).

One of my conditions is lung disease…it was diagnosed in my late thirties by a shadow on the lung seen on an x ray taken at Watford General in 2009 but I’d been suffering with vomiting, fainting, and heavy mucous and digestive problems since seven years old, intermittently.

I got diagnosed when I was sent private to the BMI Harrow 2008 for my bladder and they saw cysts throughout my other organs. I told my GP and then I was sent for the chest x-ray as my rib cage, at the back, hurt. I had a large lipoma there and it was removed in case it was causing pain, but it was nothing sinister and the pain persisted.

My NHS treatment has been reasonable. I was attending a Watford General clinic, their Thoracic department of Respiratory Medicine every six months to see a doctor there called Flip (not real name). They’ve done some gas exchange tests and learnt I’ve around one third of my lung capacity left but that was some years ago.

Flip is nice and friendly but not very attentive to my condition and wellbeing…like he does seem to care but often forgets he has seen me. He has twice written to my GP saying I didn’t turn up for clinic when I had.

I always have someone with me. So, it was all witnessed that I had attended, I’ve never missed an appointment with him but have several letters saying so. So, he seems like a good doctor but old and perhaps a little distracted generally? He’s very likable.

We are in the middle of a pandemic with Covid19 so my appointment for the end of September this year was cancelled, by letter, from the Thoracic dept. at Watford General. I didn’t mind. Nothing can be done for me, so it is just me and the doc touching base so to speak. He has seen me go through many changes over the last decade.

It was surprised when I got a call from a consultant based at another hospital. She introduced herself as Dr Thingmabob (not her real name) based at St Mary’s, London. She knew all about me and obviously had my notes so although I should have questioned why my case had been moved to her, I didn’t. I think I was in shock as I wasn’t expecting the call. I assume it’s because of the pandemic.

It is a queer thing though. I get frightened when they move me about. I worry that they’ve lost me or will get me muddled with someone else. I have previously complained about the A & E dept. at Watford General denying that they had a Thoracic medicine dept.

The staff told me it was all in my head as there was no record of my chest condition in my notes and no respiratory dept. at their hospital in April 2019. I digress. All this stuff does not help. Unfortunately, there is another Samantha Harris with my date of birth living in my town. Poor woman, we actually worked at the same David Lloyd gym once. I wonder if she suffers from being confused with me.

Doctor Thingamabob was friendly but didn’t do the basics. She didn’t ask after my health or current medication. It has been one year since I last saw the service. Where did she get her information on me from? Her main interest seemed to be to get me to stop taking HRT.

A lot happens in a year. Should Doctors be making decisions on old notes they have from ‘lord knows’ before calling the patient? They ought to know how bad the NHS computer system is at collating the information on one particular patient. They use it every day.

I told her I had already stopped taking HRT. It had been advised by the breast cancer clinic after getting breast pain diagnosed as cysts seen with breast scan taken at St Albans City Hospital in early 2019 – part of West Herts Hospitals NHS Trust – should be on my notes too…I’m not sure what she can see.

Dr Thingamabob was not going to listen to me…she continued to tell me that HRT makes my lung condition worse. I told her I’d stopped taking the hormones over ten months ago. I thought that she had finally accepted this when she asked me if I had any daughters. (YEP)

We spoke a little about my daughter’s lung issues although she never asked about my daughter’s gynae issues or I could I have told her she has polycystic ovaries. Digressing, sorry. But if this was her interest than surely this be an obvious path of questioning?

I brought her back to my case by questioning her about the three different diagnosis’s I had for my lungs over the years. I pointed out that docs said cysts in my lungs at BMI Harrow, but it was changed to Bullous Lungs at Watford then to Emphysema last year, as I told the consultant I’d started smoking.

Whilst on the phone she said that she was reviewing my CT scan of my lungs and said that it was cysts, and she would like me to have a blood test for LAM as that too can be make worse by HRT. I told her again I was no longer on HRT – I was getting a little annoyed at this obsession with HRT. We said goodbye to each other, and I put down the phone thinking ‘what was that?’.

I should point out usually my blood pressure and weight are taken by the clinic. These are obviously not able to be taken on the phone so she couldn’t see I am still losing weight. I still have the cough which I mentioned to Flip last year when I saw him. It is now very annoying and hard to go anywhere as everyone stares at me. Bloody covid19!

Being that I’ve had my cough since April 2019 it’s more than likely a ‘smokers cough’. It is a very embarrassing thing to have right now. It would be really nice to have a course of steroids or antibiotics to get rid, but it will never happen…or even better to be able to give up smoking without it hurting too much or making my MVP jump.

Oh, I’m very cynical. I’m thankful to have found the acetylcysteine and use it whenever the lungs are really congested. Thank you, Amazon International. I’m thankful for the mugwort which I SMOKE as well as drink as a tea. These things have genuinely helped me.

In my country it’s illegal to get acetylcysteine without NHS prescription and it is not licenced for use with lung conditions. It is not possible to buy steroids or antibiotics or antivirals from the chemist without a GP prescription. Many people look at our system and think it’s great. It’s not. It’s a denial of medical health products and being at the mercy of selfish doctors.

The consultation was pleasant. I mentioned to my daughter that the consultant was very interested in her lungs, more than mine as she still has a womb. Then I forgot it. At the beginning of this week I got a letter from the consultant headed up from West Herts Hospitals NHS Trust…not from St. Mary’s.

The letter tells my GP that she would like me to have this LAM test as I’m on HRT and it will be making my condition worse. She also put in a blood test form which requests the VEGF Ab Test and scrawls across it ‘send it out if needed’ as she doesn’t know if the hospital has the test facility.

There is something else which she has done that confused me. She writes, within the letter, that she has reviewed my CT abdomen scan and notes it is free of cysts on the kidneys…

As she didn’t do this (looking at the scan) on the phone to me, I’ve no idea which CT abdomen scan she is referring to. However, I’m pleased that she notified my GP of the absence. It seems unlikely that I have LAM because of this statement.

Being that she states, in the letter, that the LAM test is needed as it is ‘relevant because she is on HRT’, one has to wonder how relevant the test is because that I am NOT.

I have mental health issues. I’m finding it harder and harder to trust the medical services. There is no cure for LAM, and should the test be positive I would need to transfer to Nottingham to attend a LAM clinic – it says so in the letter. That is extremely far.

I’m very tired, fed up and in an increasing amount of pain with my groin and this fecking TVT mesh. Yep my chest does hurts, I’m air hungry constantly and I’m coughing. It doesn’t take a genius to know I’ve got a bad set of lungs.

And, yes, I have had a cough for over a year and am I’m in so much pain that I cannot rest my arms against my torso and have been for over a decade this is not mentioned on any letter. It’s frustrating.

However, the NHS treatments have historically been different inhalers and contraptions for delivering medicine into the lungs. They tend to make it worse or have side effects which I cannot live with. I’m never sure what the medicines are supposed to do.

One crushing, swirling capsule gadget made my throat so sore I could barely speak (and I like to sing). Also, singing is good for the lungs. And to be encouraged. Yet, as there was no follow up to report on my usage of the medication, do they know this. How could they? It’s also such a waste.

I now have this part of the letter here which I will write word for word what she has put under diagnosis. This is a therapeutic process for me to decide whether I go for the LAM test.

Diagnosis:

  1. Previously labelled cystic lung disease with some upper cystic changes and overlap emphysema
  2. Ongoing smoker
  3. History of Ehlers Danlos syndrome – type 3 with persistent chest pains, breathlessness.
  4. On HRT (post-menopausal syndrome) but of concern if LAM present.
  5. Cyclical vomiting syndrome.

No mention of my groin issues with the TVT mesh or Stapled rectum operations…note this is very common in my communications with hospitals. They choose what they wish to note, ignore what they do not want to note, or what they are not interested in.

If she’d asked me, I could have told her I still cannot sit down comfortably and am on fentanyl pain patches and that these help with the ongoing rib/chest pain too. The night sweats are still very bad.

Which to me, makes any cohort study I may be included in, invalid as our notes are made up of bits of information not the whole story. What is relevant or not is only admissible if the doctor can see it or asks the patient what their symptoms are and lists them in the follow up letter.

Not listed, not suffering from…

It should be also be noted that I have a crossover type of EDS with classical features. My collagen is not normal. However, it is the persistent pain and breathlessness being listed under EDS rather than the lung condition which is curious.

EDS has dislocated my joints and been responsible for persistent pain in my feet, hands and joints generally since I was fifteen years old. I also have Gout in both big toes upon walking or movement.

Also, unknown, to this doctor, as she didn’t ask, I’ve not had an episode of Cyclical vomiting since I started a new medication called Cyclizine whenever the nausea starts. It’s been great. Almost six months. This was a GP intervention and has stopped the visits from the nurse completely.

It’s worrying isn’t it?

What kind of consultation is it when the doc is only interested in their agenda?

If anyone did actually read this far, thanks. Any advice appreciated.

In my heart of hearts, I don’t want the blood test, if I’m honest, – as I don’t see the point (and the hospital don’t do it so I would need to believe that WG would send it on somewhere). I assume I have to have the blood test at Watford General as there is no information in the letter regarding this.

I have my groin to deal with. Preferring to keep trips outside, drama and fuss at a minimum makes things easier for me and is helping me to cope…this isn’t helping, thinking I’ll have to travel hundreds of miles to see someone for an hour and then go again. I already have to travel hundreds of miles to see someone about the mesh removal.

However, I have mental health issues and trust is a massive factor in this. Am I being stupid?

I researched the doctor and I kid you not when I tell you she is listed at almost every hospital NHS and private hospital in the area as a respiratory consultant apart from at Watford General. Why did they tell me it was cancelled and then this doc call? Why was she so intent on making me come off HRT? Is this the way all consultations are going to go now?

Why didn’t she ask me how I was and what medication I was on now?

Do I go for the LAM test?

Will it go against me, for future treatment or consultations, if I don’t?

Thanks for reading.