Geoff Coupe's Blog

Reflections on life at “De Witte Wand”…

Category: Health and wellness

  • An Embuggerance Revisited

    Back in 2021, I blogged about an embuggerance that had emerged with me: prostate cancer and Non-Hodgkin Lymphoma. As a result, I was put on active monitoring of the prostate and underwent a course of chemotherapy for the NHL. The chemo was successful, my lymph system seems under control. However, the graph of PSA readings for my prostate has turned into a “hockey stick” graph, with the uptick happening last year.

    So it’s got to the stage where I’m scheduled to have a RARP (robot-assisted radical prostatectomy) next week.

    Time to fasten the seatbelt once again…

  • The Embuggerance Revisited

    I’ve now completed the course of chemotherapy and immunotherapy that was called for when it was discovered that I had an embuggerance.

    The good news is that the lymphomas have shrunk, and a couple have disappeared altogether; the not-so-good news is that most are still hanging around.

    It’s not bad news however, the doctor was pleased with the results, but it does mean that I am now on a “maintenance” regime – an infusion of rituximab every three months to keep everything under control. This may go on for a couple of years. Every now and then there will be a PET-scan to see how the lymphomas are doing.

    The bottom line is that there has been no magic cure, but I should be OK for a few years yet… As Alan Bennett said, I intend keeping on keeping on…

  • Accidents Will Happen…

    Following on from my last post, it would seem that people are beginning to at least consider all the options concerning the origins of Covid-19. A good thing too, however uncomfortable it may be to consider the possibility that it was an accident arising out of virus research being carried out in labs that were only at BSL2 level.

    There are four degrees of safety, designated BSL1 to BSL4, with BSL4 being the most restrictive and designed for deadly pathogens like the Ebola virus. From Nicholas Wade’s article:

    Before 2020, the rules followed by virologists in China and elsewhere required that experiments with the SARS1 and MERS viruses be conducted in BSL3 conditions. But all other bat coronaviruses could be studied in BSL2, the next level down. BSL2 requires taking fairly minimal safety precautions, such as wearing lab coats and gloves, not sucking up liquids in a pipette, and putting up biohazard warning signs. Yet a gain-of-function experiment conducted in BSL2 might produce an agent more infectious than either SARS1 or MERS. And if it did, then lab workers would stand a high chance of infection, especially if unvaccinated.

    Much of Shi’s work on gain-of-function in coronaviruses was performed at the BSL2 safety level, as is stated in her publications and other documents. She has said in an interview with Science magazine that ‘[t]he coronavirus research in our laboratory is conducted in BSL-2 or BSL-3 laboratories.’

    The origin of COVID: Did people or nature open Pandora’s box at Wuhan? – Bulletin of the Atomic Scientists (thebulletin.org)

    And so, questions are beginning to be asked…

    And so, like many other times over the past year, we’re stuck without a clear answer. The point has been made that, epidemiologically, none of this really matters. Lab or not, the pandemic happened and is still going. But finding its origin would be hugely consequential. A natural origin would absolve any one person, but further confirm that our nature-encircling world is incubating pandemic disease at an unprecedented rate. A lab-leak would tarnish the job of scientific research for a lifetime and prove some of the worst people in the culture war – partially – right. I think I’d prefer the first case, but even more than that, I’d like to know the truth.

    Why the ‘lab-leak’ theory of Covid’s origins has gained prominence again | Stephen Buranyi | The Guardian

    Absolutely.

  • Oops…

    Nicholas Wade has written a long analysis of the question: Did people or nature open Pandora’s box at Wuhan?

    As he writes:

    I’ll describe the two theories, explain why each is plausible, and then ask which provides the better explanation of the available facts. It’s important to note that so far there is no direct evidence for either theory. Each depends on a set of reasonable conjectures but so far lacks proof. So I have only clues, not conclusions, to offer. But those clues point in a specific direction.

    What I find worrying in his analysis is the early strenuous denial by researchers that the COVID-19 pandemic could possibly have been the result of a laboratory accident because of a conflict of interests.

    The conflict of interest point about Peter Daszak seems pretty damning to me. And what is also worrying is that the WHO team visiting the Wuhan lab had others who could potentially fall prey to this. e.g. Marion Koopmans from the Netherlands who heads (with Ron Fouchier) the Dutch lab that has been doing gain-of-function research for many years. She’s been on Dutch TV talkshows regularly over the past year.

    Until now, I had never thought about whether GOF studies had any real benefit in combatting pandemics. Now I’m more inclined to view them as playing with fire, because we can…

  • It’s A Sin

    That’s the title of a five-part TV series written by Russell T. Davies. Spanning the years 1981 to 1991, and set in London, it charts the impact of the AIDS crisis on a group of friends.

    It is, quite simply, a stunning piece of work, a masterpiece. A strong cast, inspired directing, and RTD’s writing combine to give explosions of joy, horror, and homophobia.

    Watching it together with Martin brought all those times back to us. The friendships we made, the friends we lost, the callousness of Thatcher’s government, and the homophobia in British society, fanned by the tabloid press.

    RTD’s writing draws upon all of this – there are references to the infamous Section 28 legislation, and he puts the word “cesspit” into the mouth of a policeman in one scene that directly references the utterance by the then Chief Constable of Greater Manchester, James Anderton, who said that homosexuals, drug addicts and prostitutes who had HIV/AIDS were “swirling in a human cesspit of their own making”.

    As well as the wider references, RTD has drawn upon his own memories of the friends he knew to create his central characters. The character of Jill Baxter is modelled on his actress friend Jill Nalder, who herself plays the role of Jill Baxter’s mother in the series.

    As I say, watching the events unfold brought all the best and the worst of those times flooding back. These days, while HIV/AIDS is not the automatic death sentence that it once was, it is still not something that should be treated casually. I hope that the series will be watched by the younger gay generations to learn something of what we went through and the awakening of our political action.

    It struck me that RTD and his team have produced a work that completely fulfils Lord Reith’s directive to the BBC that its programming should “inform, educate and entertain”. The irony is that it ended up, not on the BBC, but on its commercial rival, Channel 4…

  • An Embuggerance

    Last October, I noticed that a lymph gland in my groin was swollen. That was the beginning of a roller coaster ride of scans, surgery and biopsies. Come Christmas Eve, I received the news that Prostate Cancer was present, and in January, heard that it had been joined by Non-Hodgkin Lymphoma.

    The good news is that the Prostate Cancer is at an early stage, and only active monitoring is called for. The bad news is that the Lymphoma needs a combination of chemotherapy and immunotherapy – and I start treatment this coming Friday; six cycles of treatment, each lasting three weeks.

    It’s going to be a bumpy ride – the seatbelt is fastened.

    The Dutch Health Service – doctors, nurses and healthcare workers – have all been very good; caring and competent. I’m optimistic about the outcome.

  • The Masque of the Red Death

    It all seems so inevitable that Donald Trump would succumb because of hubris, and his blatant disregard of the facts.

    And it remains difficult not to feel schadenfreude and not to laugh at the Covid Joker himself. As Marina Hyde says:

    God knows, it’s excruciatingly hard to chirp “Get well soon!” to this particular patient, but … get well soonish. Those of us who want to escape the cesspool Trump has helped drag the world into will wish him a better time with the virus than the one to which he blithely condemned so many of those he was elected to serve. Each to their own, but I’m against all forms of the death penalty, karmic or otherwise.

    But still, it is what it is, eh, Donald?

  • Fitbit: One Hand Giveth, Another Taketh Away…

    My first fitness band was a Microsoft Band 2. The functions were well thought out, and it tracked my workouts at the gym very well indeed. Unfortunately, whilst the design was good, the build quality was appalling – so much so that I got through three examples before Microsoft pulled the plug on the product entirely.

    So I looked around for an alternative and selected the Fitbit Ionic. While it didn’t track my workouts as closely as the Band 2, it was acceptable, and other functions (watch, timer, notifications) matched what I had with the Band.

    The Ionic also had the capability to store music and play this back through Bluetooth headphones. This I found very useful – I now listen to Podcasts during my sessions at the gym. Getting the Podcasts onto the Ionic is a very slow and clunky process involving a badly-designed Fitbit Windows app and WiFi, but, OK, it more or less works.

    My Ionic is now getting on for three years old, and despite a small crack in the screen in a corner, it is still working satisfactorily. However, sooner or later the inevitable will happen, and I will need to look for a replacement.

    I see that Fitbit have just introduced two new models positioned as potential replacements of the Ionic – the Versa 3 and the Sense. Up until now, the Versa product line has closely matched the features of the Ionic, including music storage, while the Sense is a brand new introduction focusing more on health than fitness functions.

    Both the Versa 3 and the Sense list “Music Experience” in their features, but the wording rang alarm bells in my head:

    Store and play music and podcasts with Deezer, plus control Spotify from your wrist—then, use them to stay motivated with curated playlists specifically made for your favourite workouts.

    Although Deezer is available as an app on my Ionic, I don’t, and won’t, subscribe to either the Deezer or Spotify streaming services. With local music storage on my Ionic, I don’t need them.

    I checked the product manuals for the Versa 3 and the Sense, and yes, there was no reference to either of these products having the capability of storing local music. If you want to listen to music, you must be a subscriber to either Deezer or Spotify. That’s a deal-breaker for me. Unless this feature is restored to the Versa 3 or added to the Sense, neither are of interest to me. Judging from the Fitbit community forums, I’m not the only one.

  • "He has acted responsibly, legally and with integrity."

    Boris Johnson’s defence of his political adviser Dominic Cummings is, in a word, unfuckingbelievable.

    As John Crace so rightly observes, it is now clear who is running the UK – and it isn’t Boris Johnson.

    One law for the little people, and another law for your boss, eh, Boris?

    Addendum 27 May 2020: the ever-dependable Marina Hyde eviscerates both Cummings and Johnson; whilst Chris Grey, over at his Brexit Blog, makes similar points about the paradox of populism – in less caustic tones, but none the less salient for all that.

  • Living in Interesting Times

    The emergence of the Coronavirus Covid-19 has given us all something else to worry about besides climate change, Brexit and Trump. 

    For months now I’ve been leading a workgroup planning two events in our village to celebrate the 75 years since the liberation of the Netherlands.

    We were going to have two events in our village hall. On the 3rd April – an evening of drama, song and stories (Freedom Then & Now), with an exhibition of photos, documents, objects, and clothing from 1945 plus drawings, poems, essays from the children in the village school about what Freedom means to them now. On the 4th April: a “Liberation Brunch” with an exhibition of wartime vehicles, and all the children would get a kite and be challenged to draw their symbol of Freedom on it before flying it from the field next to the hall.

    Last week, the Dutch government ruled that all events of more than 100 people were forbidden in the Netherlands until at least 31 March – and the Village Hall committee decided to shut the Hall until further notice.

    Then yesterday, the government strengthened the rules further. They announced that all schools, children’s day-care, restaurants, pubs, sports clubs, saunas, sexclubs and coffeeshops (this is the Netherlands, after all!) are to shut until the 6th April. Everybody is being asked to keep 1.5m distance from each other – including while shopping. Only children with parents who work in Healthcare, Police, Public Transport or Fire Services are being allowed to go to school or day-care.

    Buggeration. So everything has had to be cancelled, and I have no idea when or even if we can resurrect the events… Still, if it helps to stem the spread of the virus, it will be worth it in the end.

    As the apocryphal Chinese Curse has it: may you live in interesting times.

  • Here was a Plague

    That’s the title of an excellent article by Tom Crewe in the London Review of Books about the history of the Aids crisis.

    It seems so long ago now, and I count myself amongst the lucky survivors, but we lost so many friends and lovers in that dark period. It should not be forgotten.

  • The Photo

    In November 1990 LIFE magazine published a photograph of a young man named David Kirby. I remember the photo very well. It still moves me to tears, and evokes memories of friends who went far too soon. Here’s the story behind the photo.

  • Eyewash, Flapdoodle and Bullshit

    The UK Parliament is about to debate a bill put forward to change the law on assisted dying. In yesterday’s Observer, the current Archbishop of Canterbury had an opinion piece on why he believes assisting people to die would have detrimental effects both on individuals and on society.

    Needless to say, I disagree with his viewpoint.

    I can’t help feeling that he’s being a tad disingenuous when he claims:

    With other faith leaders, I have joined in writing to members of parliament, urging them to oppose Rob Marris’s assisted dying bill.

    We have written, not in an attempt to push “the religious” viewpoint on others, but because we are concerned that a change in the current law on assisted suicide would have detrimental effects both on individuals and on our society.

    It sounds very much like pushing the “religious viewpoint” to me. While he might wish to claim that:

    …the faith leaders’ letter represents the considered opinion of our communities that have analysed, discussed and debated the issue over many years. Their response springs from philosophical and theological reflections as well as from a vast range of pastoral experience and a profound sense of compassion.

    …it really deserves little more than the Mandy-Rice Davies response: Well, he would, wouldn’t he? As Ophelia Benson writes, it’s typically loaded language that at its heart is little more than “eyewash, flapdoodle and bullshit”.

    He sets up a completely false dichotomy:

    …we need to reflect on what sort of society we might become if we were to permit assisted suicide. At present, we can show love, care and compassion to those who at all ages and stages of life are contemplating suicide.

    We still can, and, more to the point, we still do here in The Netherlands where assisted dying is legal. It would be as well to get some facts on the table, and dismiss the “slippery slope” argument in Welby’s rhetoric:

    The incidence of the different circumstances of death in the Netherlands since 1995 has been determined in several successive robust epidemiological studies (Onwuteaka-Philipsen et al., Lancet. 2003;362: 395-399). In 2005, of all deaths in the Netherlands, not 20% but 0.4% were the result of the ending of life without an explicit request by the patient (van der Heide et al., New England Journal of Medicine. 2007;356:1957-1965).

    In the UK, the figure was 0.33%, i.e. quite similar to the 0.4% in the Netherlands (Seale, Palliative Medicine 2006; 20: 3-10). These instances have been found to be in dying patients who had become incompetent, were compassionate and are generally considered ethically acceptable (Rietjens et al. Death Studies 2007;31:205-221).

    In 2005 in the Netherlands euthanasia was given in 1.7% of deaths and physician-assisted suicide occurred in 0.1%. These rates were somewhat lower than in 2001. Since the legalisation of euthanasia in Belgium its overall incidence changed little, but the care with which it is carried out improved markedly (Bilsen et al. New England Journal of Medicine 2009; 361: 1119-1121). If cases of euthanasia with no or only perfunctory precautions came to light, there would be prosecution. And if in the future there were to be evidence for anyone requesting euthanasia because of e.g. a waiting list for palliative care, there would be an outcry. Thus, legal euthanasia is one more safeguard against the health-care system falling short of its duty to offer optimal care at the end of life. In Belgium, legal euthanasia and palliative care are not opposites, but complementary and synergistic (Bernheim et al., British Medical Journal 2008;336:864-867).

    Note that Welby uses the term “assisted suicide”. As a hospice director pointed out:

    There is often a deliberate and emotive attempt to confuse the terms assisted dying and assisted suicide. These are subtly but fundamentally different. People with a terminal illness are not choosing to die, they are already dying. Assisted dying offers an individual with a terminal illness and clear prognosis to have some say in the timing and place of their death if they want it. And, what is likely to be proposed in the bill is restricted to people who are terminally ill with a prognosis of less than six months. Individuals would also be required to administer the medication to end their life themselves.

    However, facts do not seem to concern Justin Welby overmuch. He seems more content with hyperbole, half-truths and lies:

    We risk all this for what? Becoming a society where each life is no longer seen as worth protecting, worth honouring, worth fighting for? The current law and the guidelines for practice work; compassion is shown, the vulnerable are protected. In spite of individual celebrity opinions and the “findings” of snap opinion polls (that cannot hope to do justice to the intricacies of the issue) the current law is not “broken”. There is no need to fix it.

    The current law in the UK is broken. I am relieved that I live in The Netherlands where I have the option of assisted dying, should circumstances bring me to that point.  I’ve lived a good life, and hopefully will continue to do so for many more years. I don’t think it is selfish of me to wish for a good death as well.

  • Nasty, Brutish, and Wrong

    The Guardian published an opinion piece by Kevin McKenna last Saturday: Scotland’s assisted suicide bill is an offence to our human dignity. Frankly, if anything was an offence to human dignity, it was this piece of invective. But then again, McKenna is an executive editor of the Daily Mail in Scotland. Says it all, really. The Guardian should be ashamed at publishing such tripe. I see that the comments pretty much call out the piece for the bullshit it is.

    I am thankful that I live in a country where I can ask for a peaceful death, should it prove necessary, and where safeguards exist to protect the vulnerable.

  • Romanticising Pain And Suffering

    Giles Fraser has an article in the Guardian, in which he claims “I want to be a burden on my family as I die, and for them to be a burden on me”.

    Well, bully for him. And a bully is what he is proposing to be, with his pernicious nonsense. I reject his argument that the “problem with euthanasia is not that it is a immoral way to die, but that it has its roots in a fearful way to live”.

    Eric MacDonald also demolishes Fraser’s argument completely, and I refer you to him for chapter and verse. A couple of key quotes:

    But it’s not called “looking after each other” if what the person who is suffering is asking for is help to die. It’s called coercion, then — which has a very different resonance — and if someone is being coerced into being a burden, then Fraser has simply has missed the point about what looking after each other is all about. Moreover — and this, coming from a priest, is inexcusable — it simply papers over the cracks with regard to how people die. Sometimes the burden, if Fraser really wants to know, is borne by those who are dying, and if those who are watching someone die in misery doesn’t notice this, then they are simply not watching closely enough!

    And this just shows that Fraser hasn’t the least understanding — but not the slightest understanding! – of what is meant by assisted dying. It’s not the last desperate act of a person who has no inkling of what is happening until the very last moment, when farewells are almost impossible; it is, rather, a conscious act of taking the decision to die upon oneself, instead of leaving it up to the vagaries of the dying process, or to the all but certain stages that the trajectories of some diseases will follow to carry one away either gasping for breath or crying out in pain. Fraser seems to have not the slightest idea of how people die, or, if he does, he deliberately hides it from his readers the less to worry them at the end of life. But it is just as well to know, beforehand, just how terrible death can be, not so that we can be afraid of it — which seems as far as Fraser’s puny imagination will take him — but so that we can be prepared for it, and take our leave before the worst overtakes us.

  • World AIDS Day

    Today is World AIDS day. Wear your red ribbon, or better still, give a donation to an AIDS charity. It’s also a day to remember some lost friends: Kerry, Lance, Eric, Humphrey, Peter, John, Kingsley, Graham, and Neil. I’m sorry that you’re not around with the rest of us today.

  • Terry Pratchett

    The New Statesman has an excellent interview with Sir Terry Pratchett. It is well worth reading. He’s not going gently into that Good Night; but instead with his head held up high and fearlessly facing the final curtain. I wonder if I could do the same.

    Here’s Terry Pratchett’s award-winning documentary “Choosing to Die”

    Please watch it.

  • A Barbaric Practice

    I find it difficult not to get both depressed and angry when reading about some of the things inflicted on the group that comprises 50% of the human race. Last week it was reading about the case of Savita Halappanavar. Today it is reading about the barbaric practice of female genital mutilation in Indonesia, a supposedly modern Muslim country.

    It is well established that female genital mutilation (FGM) is not required in Muslim law. It is an ancient cultural practice that existed before Islam, Christianity and Judaism. It is also agreed across large swathes of the world that it is barbaric. At the mass ceremony, I ask the foundation’s social welfare secretary, Lukman Hakim, why they do it. His answer not only predates the dawn of religion, it predates human evolution: “It is necessary to control women’s sexual urges,” says Hakim, a stern, bespectacled man in a fez. “They must be chaste to preserve their beauty.”

    Oh God, ah Allah, what evil we do in thy names…

  • The Right To Die

    I am profoundly thankful that I live in a country where I can choose if I wish to die.

    Tony Nicklinson has been denied that choice, and is condemned to serve more time in a living hell.

    Update #1: Polly Toynbee has a good article on this issue. As she says:

    The verdict was morally abominable – but inevitable. However bad a law may be, it is not for the courts to make fundamental change but for parliament – even when parliament sentences thousands a year to brutal and pointless suffering.

    However, as she points out, it will be difficult to persuade the UK Parliament to right this wrong. The religious lobby is extremely powerful.

    In opinion polls, for years, more than 80% have supported this change in the law, but every attempt at a right-to-die reform has been sabotaged by the large religious lobby, galvanised by Care Not Killing. The red benches, heavily stacked with the religious, including 26 bishops, saw off the last bills.

    Rowan Williams’s pretence is that their opposition springs from a fear this will lead to mass extermination of the inconvenient old. But why should the religious worry more about that than everyone else? The law would provide safeguards. The real religious reason is theological, as voiced in the Lords by the bishop of Oxford when he proclaimed “We are not autonomous beings” – we must all wait for God’s release. Presumably avoidable suffering is part of God’s mysterious purpose.

    As I said, I am thankful that I live in the Netherlands. Contrary to what the bishop of Oxford may choose to believe, I am an autonomous being.

    Update #2: Sarah Wollaston has an atrocious article on this issue. It appears that not only is she a physician, but she is also the Member of Parliament for Totnes. My heart goes out to the people of Totnes for being saddled with her to represent them in the democratic process, and I would hate to end up as one of her patients. She would quite cheerfully condemn me to continued suffering rather than respect my wishes to end my life.

    As Eric MacDonald says:

    The trouble with people like Sarah Wollaston is that they do not seem to understand what a human life is. They think, for some reason, that human life is simply a biological reality, the fact that a body is breathing. The human life that we value is very different. A life is a continuum of sorts, with a unity of conception. I do not want to enter into the philosophical problem of identity, but the important thing about a well-lived life is that it has a sense of overall consistency and coherence. That is why we respect people’s autonomy, the right to make their own decisions about life: what to do with their lives, who to marry, whether to have children, which vocation to pursue, and many other decisions that go to make up a life rich in experience and held together, so far as is possible, by a single, or at least a unified sense of what is appropriate for a life so conceived.

    A life conceived in this way includes some of the most important decisions that must be made, and includes, as an essential part, how that person understands the part that death plays in life. Most of us do not think much about death, especially when we are in the midst of life, but the time will come when the issue of dying will loom very large indeed. To be unable to make decisions about dying is to put outside the scope of a person’s conception of life all those things that may befall them at the end of life.

    Update #3: Tony Nicklinson has died. RIP. He fought well for the right to die with dignity.

  • Apotemnophilia And Phantom Limbs

    V. S. Ramachandran is a neurologist, and someone whom I can listen to for hours. He is fascinated by, and fascinating about, all aspects of the human mind – particularly the more unusual manifestations of behaviour.

    He’s probably best known for his work on the phantom limb syndrome, but recently he’s been looking at its converse: apotemnophilia, or the desire that some people have to have a perfectly healthy limb amputated.

    Edge have posted a video (and transcript) of him talking about these, and other syndromes under the title of Adventures In Behavioral Neurology—Or—What Neurology Can Tell Us About Human Nature.

    We saw a patient recently who was a prominent dean of an engineering school and soon after he retired he came out and said he wants his left arm amputated above the elbow. Here’s a perfectly normal guy who has been living a normal life in society interacting with people. He’s never told anybody that he harbored this secret desire—intense desire—to have his arm amputated ever since early childhood, and he never came out and told people about it for fear that they might think he was crazy. He came to see us recently and we tried to figure out what was going on in his brain. And by the way, this disorder is not rare. There are websites devoted to it. About one-third of them go on to actually get it amputated. Not in this country because it’s not legal, but they go to Mexico or somewhere else and get it amputated.

    It’s worth listening to.