Category Archives: right to healthcare

TVT Mesh Ongoing Saga – journal entry

My backstory:

I had a TVT mesh implant in 2005, during an hysterectomy because of Endometriosis of the womb through NHS England, in United Kingdom. A TVT mesh implant is polypropylene.

Polypropylene is a plastic.

Since being implanted I’ve had continual pain in the area (the groin) and blood in my urine. I have undergone several surgerical investigations which have all stated that the mesh is exactly as it should be and isn’t the issue causing my pain.

I’ve become intermittently incontinent which means I have days when I can hold my bladder and others when I cannot. However, all days are extremely painful – hard to stand up painful.

My daughter came across an article from America (in 2018) which stated thousands of women had been arguing with the makers of the TVT mesh and asking for compensation for injuries. So, since then I’ve been trying to get an NHS doctor or a consultant to talk to me about this.

Could it be the TVT mesh causing my groin and bladder pain?

Initially, when I challenged my implanting surgeon, the response was helpful. After collecting evidence of continual pain and the many (double figures) investigations/consultations/operations for bladder pain over the last sixteen years and showing him, he agreed that there was a possibility of the mesh injury and referred me to a consultant to look into removal of the TVT and he wrote a letter to that end.

That letter was written in 2018, now over three years ago.

I’m still waiting for a referral to a mesh removal clinic.

My day is spent dying to go to the loo. It doesn’t matter if I’ve just been or not, I still urgently need to go. You’ve possibly had a similar experience if you’ve ever had a sexually transmitted disease. Now imagine the mental torture of decades of that feeling. That is the life of women and men who’ve been implanted with this mesh around their privates.

Things which used to work, like diazepam, no longer work to relax the bladder. There is no release from the pain. Light or dark, the pain seers into the hours, intruding and tainting every single day.

The British Health Secretary, Matt Hancock at the time, apologised in April 2020 and insisted that people like myself suffering with this polypropylene mesh inside us should be listened to and promised us the best care from now on.

The past year I’ve been spent hours on the phone attempting to get the mesh removal clinic and my GP surgery to correspond effectively. Trying to save mental anguish, I’ve been marking a fortnight’s appointment with myself, in my diary between calls and trying to forget it inbetween. Not easy, as my bladder is physically constantly reminding me.

And now, quite frankly, I feel like a cash cow.

My GP surgery requested me to sign forms for extra funding. Apparently being implanted with TVT mesh is outside of the NHS normal remit although I was implanted by the NHS. I signed the forms. My GP then insisted I attend a community gynae clinic where they could refer me to the mesh removal clinic as my GP ‘wasn’t allowed’ to do it directly.

I travel to a face-to-face appointment with a consultant who didn’t bother to face me for the five minutes I sat in his company.

Although apologising for dragging me to the clinic and for the ongoing problems I am having accessing help he couldn’t refer me. The reason? His forms weren’t working. I don’t know who he was. No paperwork – as it was organised by text message. I have requested paperwork, twice.

It was a further six weeks before a referral went off from them, although it is not received by the mesh removal clinic at the University College Hospital London as they refused it because it’s incorrectly filled in. I’ve complained, cried and got extremely depressed but that’s all there is.

I’ve no more news to tell. The referral lies somewhere in the London NHS ether. After all, they don’t get paid extra to do their jobs in the NHS do they? I will call them all again next week.

Tortured soul, Watford, UK.

Thank you for reading about this very personal issue I have to deal with. It helps me a great deal writing about it. To me, the medical profession are extremely ignorant and unhelpful in this matter having also refused me mental health help, leaving me this as my coping mechanism.

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.

Blimey. Looks like I’m stuck with the TVT mesh.

The last few months have been hard. As hard as the last few years? Maybe not. Probably because my expectation level has dropped to 0.01 above zero.

Those that read my blog will know I had a vaginal polypropylene mesh tape implanted in me during a hysterectomy for Endometriosis. I thought it was, and I was told, it was, an inert material designed to hold my bladder up like a sling which would help with the stress incontinence they said I had.

When I woke up from the surgery in 2005 I felt an intense painful tension across my pubis…which I still have. It feels like I need a wee urgently and feels like something is cutting into me.

It feels like cystitis. I moaned about it since..the implanting surgeon gave me medication to ‘relax’ my bladder…as all they could find in my wee samples was blood, just a small amount.

The medication didn’t work and so ensued a fifteen year investigation as to the cause of this blood, pain and urgency. My GP referring me here there and everywhere to try and find the cause. Me becoming sicker and sicker.

I’ve done tons of physio. I’ve done diet restriction, addition and subtraction. I kept a food diary for two years. I kept an activity diary. I analysed every part of my life….and changed it. Including my work – several times – as everything I did seemed to irritate my groin. I did this for years. I eventually became exceptionally ill and was put on an NHS palliative care program.

My daughter got involved, together, through research we found that the TVT mesh that I’d had implanted in 2005 had left women with the symptoms I was complaining of. But, the kicker was, the longer it was left in situ the harder, almost impossible, it was to remove.

It was not designed to be moved.

It was designed to cause a ‘healing’ response from the surrounding tissue and build a tissue mass within my pelvic cavity. It was this mass which would then, in theory, hold the bladder in place. The TVT mesh’s rough edges were designed to irritate and cause the foreign body reaction which hurts us.

So, my lawyer contacted me yesterday to say until I have a doctor who admits my pain is caused by the TVT I have no case. Fifteen years of investigations and lies amount to nothing but exactly what they are.

I think the cost should be counted. I’m sat at home, on full disability, I’m 52 years old.

I was working full time. I’d retrained to become an electrician to be more physical and left modelling behind – I could no longer stand up in the shoes and it got me no where. Nothing worked.

I don’t complain about not being able to walk as I do have Ehlers Danlos but is this is being used as an excuse not to treat me? I got referred by my implanting surgeon for ‘consideration of removal of TVT’ in 2018 after I presented him with evidence of my continued ignored symptoms since 2005.

I’m no closer to removal now than I was in 2018. Further away really, as the removal specialist to which I was referred left the NHS soon after I saw her in Oxford 2019 (with my evidence) and then the hospital discharged me last month as they said they don’t have funds for TVT removal.

I was hoping to get somewhere with lawyers to go private as I know the government is refunding women who have done this. It seems discriminatory that us poor people reliant on the NHS are being pushed to the back of the queue and, as it appears in my case at least, still ignored.

So, no pay out. No removal as yet…Having been discharged from Oxford I’m not even with a consultant gynaecologist. It looks like I’ll be holding on to this torture device for a while longer.

Yeah, I know Matt Hancock apologised to all of us but he just says the right thing for the camera.

Thanks for reading.

On a good note I did submit my first book to a literary agent. At least I can think straight again.

The Problem with Shagging Sheep.

Comments on the medical device TVT mesh.

There is some talk of TVT mesh implants and how they have ruined women’s lives around the globe, but not enough, in my opinion, as it’s a scandal.

It’s development is interesting. The TVT’s inventor piloted the initial study on sheep. Unfortunately, the gentleman died but his work was continued…He worked for Johnson & Johnson. They recognised the monetary value in a product which would cause problems for life…and also supply Tena lady.

TVT is a questionable treatment for an ‘out of control’ bladder after childbirth and it was promoted as ‘the gold standard solution’.

It was designed to be implanted for life. Essentially it is a long tape placed around the bladder. It replaced existing operations and saved an hour in theatre.

It’s made from polypropylene plastic mesh – the same material the marine life have problems with.

The TVT is wrapped, blindly with needles, around the outside of the vagina, under the bladder and through the pelvic bone – if you are lucky the surgeons will miss your skene gland, rectum and clitoris.

It ought to be mentioned, originally it was designed for ‘awake’ patients so the tension could be adjusted.

I want to go back to the pilot though. I’m assuming that they used the TVT mesh on sheep who’d previously given birth AND who accidentally wet themselves. I pity the research student whose job it was to find suitable candidates for study.

How many days were really spent finding pissy sheep?

A problem with TVT mesh, is as the plastic gets older it shrinks. It can make penetrative sex difficult/impossible and generally it causes severe pain as your other organs move against it.

How did they research the sexual element with sheep? Assuming they bothered.

And then, how would the researchers extrapolate the data? I’m thinking all the comforting cups of tea in China will not get a sheep talking. And, were the sheep checked afterwards to see if they were still dribbling? Did they put smelling salts under their noses to induce a sneeze?

There is also the bipedal thing…I know it’s small but surely an important factor?

How could they check if the sheep could lift something? A sheep has never worked in it’s life.

Whatever, I await removal.

Thanks for reading.

Edited to add cartoon and to say coincidence or not (day after I posted this piece) the media have covered many personal stories as news regarding mesh implants. But they are muddying the waters by suggesting these implants are biological. They are not all mesh is synthetic or synthetic based polypropylene. Also,, there is some suggestion that the implants have just not been fitted correctly…no, it is more than that so all these pieces people are being fed in the media have been bent out of shape to stop the blame falling at the medical devices doorstep – where it firmly belongs.

 

Hard

Is that Samantha Harris?

Yes.

I’m the consultant who took over your case last year.

Oh, hello.

Sorry, it’s taken so long to get back to you.

‘pleasantries’

Bombshell

The hospital can no longer perform the surgery to remove the TVT mesh. We were unable to secure funding.

Yes, we do have the expertise to remove TVT mesh by laparoscopy.

No, the clinic which has been funded doesn’t have the expertise.

I’m sorry Ms Harris.

Yes, I will write to your GP who will need to refer you to the removal clinic.

Bye.

Thank you Doctor. Bye.

Summing up as I can’t write about this. It hurts too much.

Lab Rat Age – Lockdown Poem

Isolating for covid nineteen

All social distancing

It’s now twenty twenty-one

Another lock down has begun

Pfizer, Astra Zeneca and J & J

Motivated with shares and graphs

They wipe us away

Like fleas on an arse

Looking back to where to begin

I came across the story of Aspirin

Linked to Spanish Flu, who knew?

Pharma have us by the balls

Wanting funding for a new cause

Just how many more variants

Can really be found

In residents isolating, gone to ground?

We’ve vaccinated millions

Yet death figures soar

It takes no super sleuth

To unlock the cage

On Britain’s new,

Lab Rat Age.

The end.

Thanks for reading

copyright Samantha Harris (unextraordinarybint) January 2021

No Better – Review Stapled Hemorrhoidopexy. Honest/Blunt.

A week ago I had my appointment at NHS colorectal specialist regarding my butt pain.

This is now the third hospital I’ve been seen for looking into this. I wish they’d share medical records… I’m reminded of how, last decade, I used to go from hospital to hospital over the bladder pain. Then I read an article which told me it could be the TVT polypropylene mesh.

I read through the doctors letters that I had and saw that it was being mentioned as okay when I wasn’t really aware that this was what they were looking at.

Each consultant said the same thing “no erosion of the TVT”. I know now that there is no possible way they could have seen this by these investigations and each one of them lied.

Taking you back to 2005 when I had an Hysterectomy for Endometriosis because of night sweats and crippling pain. I was discharged from the ward six days after my surgery without clearing my bowels. I was re-admitted five days later having still not cleared my bowels.

Four years after that I am having a Stapled Hemorrhoidopexy, which I am unaware is a new procedure. The story of getting to that point is a whole book of horrors for another day.

I wake after the Stapled Hemorrhoidopexy in what the medical profession disgustingly call “exquisite pain”. That is not the correct term. The correct term would be horrific pain that will never be forgotten, worse than child birth. I woke screaming like a banshee. There was nothing exquisite about it. Sick sacks.

If you look up Stapled Hemorrhoidopexy, the gumph will tell you it is a painless, minimal invasive procedure and that you will be back to work the next day. It is not true. Far from it. This is a cut and shunt that you will be lucky to be standing up comfortably the next week, let alone the next day.

It definitely doesn’t suit everyone and if you have Ehlers Danlos like myself I would recommend not having it and demanding the older technique with biological material and a gentle hand. A huge mechanical stapler being shoved up your arse is not easy to recover from.

I have not yet found out what they used to fix the cut, the surgeon told me it was a ‘composite ring’. I am in the process of getting my medical records because of the TVT Mesh case I am trying to bring against the NHS, I am trying to find what this ‘composite ring’ is made of…because of my butt pain whilst I’m there.

It’s been eleven years since I had the Stapled Hemroidplexy to correct my evacuation problems. It didn’t work. It never worked and now it’s incredibly painful and has been for a few years – getting worse as time goes by.

Care is bad for women patients in the NHS. Since closing the women’s hospitals we have to travel hundreds of miles. I’m in so much pain, it is incredibly hard to to travel to several different areas of the country for what is essentially an inch difference on my body.

Common sense seems to have left the building and thousands of people are left on benefits because of operations and procedures like this…it costs the government and the tax payer millions.

During my recent (Dec 2020) consultation I was not asked my history…we didn’t have time. My kind doctor told me that my upper and lower abdominal CT Scan, poo sample and blood results had all came back normal.

To me, that is instantly worrying. They’d done a chest CT too… I have bullous lung disease, or cystic lungs…clearly visible on a scan if any one looks at it. At stage four I have a heavy shadow on my right lung unavoidable to any eye let alone a trained eye of a radiographer.

As a patient being told that they can find nothing wrong when you are unable to sit down during the consultation is an unpleasant situation. I had no option but to have the poor consultant physically examine me. She would be sure to feel the rectroentrocele (or something) to show that I am not mental.

There is no understatement when I say it really fecking hurt.

Like last year at Watford General, it was very difficult and upsetting.

More painful was her finding something, checking with me that it hurt, and then pushing on it…the pressure made my heart flip and my ears pop. I tried to go through the wall on the other side of the bench to get away from her soul pressing finger.

The doctor handed me a wipe and some tissues. Getting dressed I wondered what she had found and how on earth I was going to get through Christmas in so much pain.

The doc has told me I am in pelvic spasm and given me some cream to use until I see her again early next year. I will let you know how it goes. I’m due to see her again in February 2021 – unless we are still in covid19 lockdown and it’s cancelled.

Thanks for reading.

Poor guy.https://www.researchgate.net/publication/51172093_Hemoperitoneum_as_severe_and_unusual_complication_in_the_stapler_recto-anopexy_for_hemorrhoidal_prolapse_Case_report

The Whiteness and Bloody Americans. Rant.

What is wrong with white people? This is aimed at white people in Europe not the States. I’m English and would also class myself as European. I voted to remain for Brexit.

How can white people not realise they may be a target for hatred? Because, in the same way my (white) ancestors had to scream out for help to London, most are not aware.

The media and social media only tell what it wants, but if you look you will find independent news outlets now giving out the very depressing news. Youtube is worth watching if you can circumnavigate the PR stuff, filters, sexist and racist search results.

Stabbing and shootings in towns up and down the country have increased dramatically during lockdown…they stopped collecting ethnicity as it was getting very obvious. In response, Far right activity rose by 4% to 8% of our countries total terrorist threat. This resulted in a news blackout of the ongoing attacks.

But, I want to talk about our health and the NHS, and a woman called Rano Bains.

Why should you be interested in what she says? Because she is Head of Equality and Diversity for many NHS Trusts and hospitals (national health service) in England. It is her words which drive policy, funding and training in our wards and universities.

Rano Bain’s words…

“The whiteness refers to white consciousness – the ‘silent’, pervasive, cultural norm that informs and shapes our racial ideology. Whiteness is constructed as a formless, empty cultural space that is neutral, natural and normative. Whiteness, because it is an unnamed, hegemonic position of privilege and power, becomes the point of reference for measuring others, unlike “blackness” which has been named in the language of white signification. Whiteness has defied scrutiny as it does not seem like a culture as everyone is apparently the same.”

hmmm…plain English would have been nice…..However, I will attempt to break it down.

Do white people know what other white people think? She makes it sound like we are plugged into an invisible big psychic cloud. Her claims of white consciousness of people in Russia, Israel, Poland being the same as white people in England, Germany or America are terrible.

It shows her racism immediately. The first line says that she is viewing white people from a position of suspicion and it is white people who declare racial identity, to her. Is Ms Bains the type of person who should be running our ‘equality and diversity’ departments?

Current serving Ministers have declared that white privilege has no place being taught in our schools, but are they aware that it is taught in our NHS to our healthcare assistants, nurses and doctors?

White people come lower down the humanity chart to many people in the media, the health care profession and education. This has to change. All lives matter all faiths matter, including those without faith – that doesn’t mean they make the rules.

When people are not offered the same facilities and services it is called discrimination. (eg. TB vaccine). When they are not warned of extra risks to them, (eg. flu vaccine) this is racism.

White people are the only race not afforded the indigenous land protections.

In this manner, the United Nations is racist.

My country – The United Kingdom of the British Isles, is a country RICH in culture and heritage. It is wrong to say we have none. To be frank it is racist to say white people have no culture.

Terms like ‘snowy peaks, and ‘the whiteness‘ are racist. They should not be allowed within training programs in our national health system. They should be discredited by academics within our schools and universities.

Explain to me why white people are criticized for holding positions in predominantly white citizenships or companies? How can that possibly be racist? But, it isn’t racist that African’s insist on their land being owned by black people? It isn’t racist that native American Indians have land that is just theirs?

If white people want their own space, it’s racist?

Explain why Christians can’t say they hate Islam? Both are bad, but Christians have become tolerant and are the standing religion in the UK along with paganism. Religion isn’t even a race but somehow it is being added to our ‘hate crime’ laws, originally designed to protect everyone. Soon I will be unable to say I hate religion!!!

This directly threatens our free speech and our security.

Explain why a black person (from anywhere) is on our national news talking about feeling hurt because she suspects racism? She suspects it was racism…? She may be getting hassled for all sorts of reasons to assume it is racism is not on. Because she is in a predominantly white country she declares racism, but she works within a predominantly non white environment in the NHS in London.

Regardless.

How is this national news when the same day people were stabbed, on UK streets, for being white? Another incident only covered at a local level, as all of these types of murders now.

Murder by colour code. If you are a white murderer or white child killer you will be plastered over the media, if you are black/brown/not English you may not even get arrested if your child dies unexpectantly unless the public pull the police up.

Explain why George Floyd is on BBC but Cannon Hinnant isn’t? Neither murder happened in Britain (BBC stands for British Broadcasting Corp).

I’m scared. I stand as someone who was attacked by people who were not of my colour. I am not imagining the hatred towards me. I’m verbally attacked when I leave my home by an awful Russian woman (white). I’m scared of the doctors and nurses no matter what colour they are, as many view me as spoilt immediately because I am English. White Irish ambulance staff can be especially mean. All white people are not the same!

As an English person I learnt a long time ago to lie about where I am from, but I will never again. I educated myself away from the white guilt, the same as I educated myself away from the Christian guilt and can now see it for what it is. Both are run for greed, envy, laziness, brainwashing and corruption.

I stand as someone who was born in Plymouth, Devon, England. The full history is not covered by the Americans EVER…they remain race blind on the slave trade history because of their own sordid history and because it suits certain people politically.

This lady, Rano Bains (no idea where she is from), has a nerve to say this of England with her Whiteness perspective. However, we are the most tolerant of countries. Perhaps she cannot see a long history or culture within our country, but surely this does not mean there isn’t one?

I read her pdf in 2018 and have been stewing since. I didn’t want to do a piece as I don’t want to add to a rise of hatred towards anyone but it seems I do need to defend myself and my life. A black lady is found online saying all white people are inbred and most of the comments underneath agreed…however, you will not be able to find it.

Search for any attack on a white person and google immediately takes you to black lives matter material unless you know the name of the victim and the date you will not find it on referenced on our news. Google is not relevant and neither is youtube.

White people are not the same, nor do we think we are the same. We are classed as white for measurement of resources for assurances to black and brown people to ensure that facilities are shared equally.

Also, we now appear to have strange advert quotas – air brushing blond people from TV, advertising, film and social media in Europe is also getting very tedious. European people are white. Get over it. Stop telling us we are racist.

White people are just people. We don’t deserve any more or any less than any other human. It is Rano Bain’s term, The Whiteness, that gave birth to many of my poems reflecting as The Blackness….ideally I wouldn’t be seeing the world in this manner. I never used to. But, this is obviously the idea, after all, you cannot capture a culture and it’s resources without upsetting a few people.

Our national anthem has come under attack. Us Brits will ignore it and will carry on with it but for the English (traitors), Americans, Indians, Pakistanis, Russians and African who called for it to be banned, please get a education by reading the following.

The history behind the British song Rule Britannia, UK national anthem.
In the 1600s the seas around Britain were ruled by North African Slavers(who were black). They boarded British ships and carried off the crews (whites) to be sold as slaves in Africa. The situation became so bad that fishermen wouldn’t put out to sea in case they were captured by African Slave Traders.
Between 1609 and 1616, 466 British ships were captured by Slave Traders in the English Channel, Irish Sea and North Atlantic, and the crews were sold into slavery. White crews.

Some other historical news stories from England include,

In 1625, sixty English people (white) who had taken refuge in a local church were dragged out, loaded up and taken off to Africa to be sold as slaves from Mount’s Bay in Cornwall

On 12 August 1625 the Mayor of Plymouth wrote to London for military help after 27 ships had been seized by North African Muslim Slave Traders in just 10 days.

In 1645, 240 people were seized as slaves in Cornwall.

White people – valued by other nations because of the colour of their skin for abuses in other countries. We didn’t value ourselves higher because of our skin they did because they wanted it.

One or two survived, made their way back to England and wrote of their capture, but most didn’t.

The situation only began to improve for Britain after the end of our English Civil War when the Royal Navy was built up under Oliver Cromwell.

By 1700, North African Slavers generally knew better.

It was in honour of this defence of our security, that in 1740, James Thompson wrote ‘Rule Britannia’.

Apathy will not help our children or our grandchildren. I stupidly did not go to the police over my own attack in Kings College Hospital but I did complain and I did go to my GP about my injuries so it is a matter of record. I also took photos of my injuries, they amounted to bruising.

People need to stop talking about racism as if white people are always responsible. Racists are everywhere and you cannot tell them by their colour.

Stop believing that because of colour you should have less and be grateful because you have nothing to feel bad about.

Stop believing that because of colour you should have more and other people owe you something.

The end.

Leave a comment if you like, I suspect this will be filtered out of google and bing search anyway.

Thanks for reading.

If anyone else can decode Ms Rano Bain’s words please enlighten me. Pardon the pun.

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.

Stop Discrimination in Medicine

Over and over again we are told only some people can get certain diseases and other races cannot. Even if results come back indicating a blood disorder, sickle cell will not be tested for…maybe even rickets would not be picked up because of your childs genetic makeup…although they don’t know your child’s genetic makeup…they do that on sight, by name or nationality. They = Doctors.

Rickets is a disease where monitoring and treatment is being targeted towards non whites when every child is at equal risk. Here is a medical paper saying it isn’t just non whites who suffer from it…attempting to make racist doctors understand that white children get ill too.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60211-7/fulltexthttps://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60211-7/fulltext

We’ve accepted racism and allowed it to enter our health professions. As a result Rickets is on the rise and many of our sick children go undiagnosed with painful diseases for lengthy periods.

We must call out racist papers and medical trials. If a drug is to be safe or a treatment, it must be safe for everyone. As genetically we are all different – not all white people are the same, not all black people are the same and there are billions of people inbetween.

Allopurinol – known to have vicious side effects in non whites is not usually prescribed to black folks in England, or shouldn’t be. It was given to me though and caused major rash and major gout attack.

But, much worse than that, I found this video. It doesn’t even warn against giving it to black people…

So, we are all at the mercy of this distrust and it is caused by the Pharma companies.

Please be cautious about any medication given to you and read the small print carefully.

Stay safe.

Thanks for reading.

I wonder how many other drugs are known to cause harm depending on your genetics?

South African Women Be Careful

We know the media do their own things these days and news isn’t what it was. The mesh scandal was quickly swallowed up by covid19 news here in the UK.

The TVT polypropylene – the vaginal sort. It is dangerous and pharma are now going to push it at other countries. In order to make you want it they may tell you it’s worked really well here, it hasn’t.

And I found this…

LIARS

The ban is in place for a reason. You are not being denied something that is good. It was not licenced in your country because it isn’t safe. PR companies will be writing articles saying how wonderful it is. Terms like ‘gold standard’ will be used and they will claim only a tiny percentage suffer side effects.

We have fought long and hard to be listened to in our countries. Many of us are maimed and more of us cannot have sex comfortably, if at all. Plus, we still have the wee problem.

The same firm who makes them, Johnson and Johnson, advertise constantly on our TVs to sell us the pads to clear up after our bladders. Ironic.

However, we organised, we’ve realised that many of us had untreated bugs in our bladder before the operations and that was partly responsible for the loss of control.

Rather than sort this out they claim it’s our physiological makeup and surgically attempt to fix us.

It is always down to the individual but a life without sex is pretty grim. The Gynaes here have dismissed us for decades with comment like “you can still do anal”. (Not everyone likes anal).

Stay safe and please do not believe everything the pharma tells you. Look to traditional methods.

There is an old surgical method which was used for centuries which doesn’t involve shoving plastic in your pelvic region. A couple of stitches in the right place. Could be done with cameras etc still. Do not let them put plastic inside you. It makes you feel ill.

Thanks for reading.

End of today’s rant.

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

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.

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.