Postpartum psychosis: ‘I’m a thing possessed, an animal. I am nearly sectioned twice’

My name is Jessica. I have postpartum psychosis. It is not my fault. Since my son was born, I have slept nine hours in 11 days. I have heard of the baby blues, but this is something else altogether; this feels like the baby black and blues. This feels like oblivion.

I can’t stop writing. Every thought, every idea, the name of every person I meet needs to be recorded. I mustn’t lose this thought. It must be noted; kept; remembered. The world needs to hear my words. If they are lost, all will be lost. Record it. Record what I’m saying. Make sure it’s recording. This will go viral. It will make me a millionaire. You will never have to work another day in your life.

When I arrive at the psychiatric mother and baby unit in Hackney, I am a shell of my former self. Psychosis is bringing me to my knees. I gave birth 11 days ago, and since that day the devil has singled me out as his dancing partner and has not let me rest. I have not slept, I can’t eat without distraction, and the pressure of my speech is so intense that my throat is red raw. I have transformed. I am a small, fragile bird-like creature and my husband can do nothing but stand beside the me that used to be his wife. The me he still hopes is in there somewhere.

On the journey to the ward, I have nearly been sectioned twice. I’m on borrowed time. The police may need to be called. If my baby is taken from me, I don’t want to imagine what I might do. I am frightened to live inside myself. I am ill. I am a thing possessed, an animal, caged. Whenever I have a moment of relative lucidity, I cry out to anyone who will listen – “I am here, it’s me. I fully cooperate with you. I need help. I will take any medication you need me to. I am here of my own free will. I surrender.”

But, within seconds, the Thing takes hold again and drags me back out to sea. I lash out. I will not take those pills. Get them away from me. You are taking away my human rights. I want a lawyer. You cannot degrade me like this and get away with it.

The only thing holding me hostage was the psychosis within. This thing wanted to destroy me.

People always ask me if I knew what was happening when I had postpartum psychosis. The truth is that I was painfully aware of what was happening. Until I started taking medication, and felt numbed, completely zombified, and lost two weeks of my life, I felt everything, and was utterly powerless to stop it or stem the irrepressible torment of my illness.

The tremors of the psychotic quake still resonate throughout our lives three years later. It took me about three months in the mother and baby unit to recover enough to be granted leave to go home. My baby was no longer newborn and our house had adopted the chill that homes left standing vacant absorb.

I was determined in my recovery to speak out against the thing that had kept me captive and had sought to break me. This was when my blog was born, and it came screaming into the world, determined to name the horror and the beauty of illness and recovery; the war and peace of our experience. I refused to be silent. I would not be ashamed. The blog, Mutha Courage, was my attempt to piece together the impossible jigsaw of my fragmented reality, and work out what the hell had happened and how we could live again.

I am very proud to now be in a position to talk about what happened to me and to my family, in an attempt to open the conversation and to normalise our relationship to these traumatic illnesses and episodes. The horror of what we went through cannot be denied, but I also want to share the tremendous love, growth and power that such a journey can engender.

I always say that I won the psychosis lottery, because I got lucky even in the most unlucky of circumstances. I was lucky to have such incredible NHS staff to offer me love and compassion even in this darkest chapter of my existence. I was lucky to have a husband who could speak to my soul when my mind was not intact. I was lucky to have a baby who was so patient and calm even in the most turbulent of beginnings. I was lucky to have this illness and be able to speak out about how these experiences can ultimately lead to greater understanding of ourselves and those closest to our hearts. We cannot choose what happens to us. All we can choose is how we play the hand we have been dealt. I am not the only sufferer. I am not the only survivor. We are all warriors in our own battles.

During some of my most intense psychotic episodes I was obsessed with recording what I was saying, because I was convinced that the content was essential for the world to hear. Once I listened back to the recordings, I realised that I did want the world to hear them, but for a different reason. I wanted to share them, and our story, to give insight into the debilitating nature of mental illness, something that many people and their families suffer from, and to shine a light on a subject that has, for too long, been kept in the shadows.

Mama Courage will be on BBC Radio 4 on Friday 12 May at 2.15pm.

Postpartum psychosis: ‘I’m a thing possessed, an animal. I am nearly sectioned twice’

What I’m really thinking: the care home visitor

I come whenever I can, a round trip of several hours. And although the care staff are always welcoming, I see the disappointment in their eyes when I leave. With a couple of short breaks, I can usually last three hours. It’s all I can take of the mumbled sentences that make no sense, watching television while he sleeps and swapping pleasantries with the staff, who always seem surprised by my presence.

They assure me that there is a steady stream of other family and friends who drop in. I try not to take it personally, although it feels like a criticism. I am thankful for the way the staff look after our relative but we all know he barely registers my presence. As far as I can tell, he is happier in the company of the people who care for him and clean and feed him.

Frankly, I feel like an inconvenience, a stranger interrupting his routine. I have thought about not coming any more and I secretly wonder how a civilised society can allow a person to subsist in his condition – not living, merely existing in a gradual, unstoppable decline.

He lies there bedridden, half-paralysed and hovering between worlds. I am in no doubt that he receives the very best palliative care, but I can’t help thinking that society shows him less compassion than it would an animal in making him endure this.

The whole experience has made me think about making a living will, and also about the wider issue of end-of-life care. I also question my own motives more now. Do other visitors wish their loved ones dead, to end their suffering and ours?

• Tell us what you’re really thinking at mind@theguardian.com

What I’m really thinking: the care home visitor

I’m childless and lonely. I feel moving would help, but my husband isn’t keen

I’m coming to terms with a life that I wasn’t expecting after 20 years of marriage and am struggling to find a route to a new life. My wish is to live by the coast, about 70 miles from our current home.

My husband and I have come through infertility and eight rounds of IVF without children (adoptions and alternatives have been explored). He is nearly 20 years older than me; I am in my mid-40s, and scared of the menopause robbing me of more of my identity. I don’t necessarily consider myself to be over our loss, but I try to be accepting. Yet it has changed our lives in an unbalanced way. He says that children would have been a bonus, which does relieve the pressure but makes me feel lonely in my recovery. To me, it meant more: the validation of being female, and a space in my heart is missing.

I feel that I’m living a life haunted by what might have been. Our house, bought before we started treatment, has many bedrooms, and my job doesn’t have any career prospects although it is in a field I enjoy. I know that it is time to move on and I could work freelance. My husband thinks that I should stay for the security and the benefits, and his worries are contagious, but I don’t know to whom I would leave my worldly goods if I should die after him.

I yearn for peace and quiet, having also been diagnosed with mild autism. When we go on holiday with our dogs, I find the peaceful places so much better for my state of mind. Walking on beaches is accessible and a rare pleasure for me. I struggle at home in mud and frost.

My husband wishes to stay where we are: he enjoys the city, has friends here and goes to sporting events every weekend. I feel resentful often. While my husband has said he will move, it is said grudgingly. I think life is too short and wish I could make him see that we do have more choices than for me to sit at home on antidepressants.

Yet each time we go away, I ruin the holiday with panic attacks about going home to a life in which I feel lost.

I’m sorry about your failed rounds of IVF: in your longer letter, you called it a trauma but you reduced all of it, pretty much, to a single sentence. Yet its impact, not surprisingly, colours the whole of your letter. The other thing that permeated your letter was identity; you talk of it a few times, once directly. I wonder if you feel that, without the children you planned to have, you don’t know who are.

Barbara Levick, a psychoanalytic psychotherapist (bpc.org.uk), feels that you have had “repeated disappointments” and that “perhaps [not surprisingly], you have real difficulty overcoming the loss. How important is the lack of children to you? It seems a major disappointment, but the catastrophic nature of it is not shared by your husband.”

Or perhaps it is, but there didn’t seem to be a sense of you both having really talked about how you feel. Certainly, I felt you hadn’t told your husband about how you feel. I got the impression of two people, living together in this big house, but locked away in their own worlds.

I kept feeling there were little screams of, “What about me, what about me?” all through your letter. What about you? When do you get to do what you want, say how you really feel? I’m a big fan of good therapy, and I would urge you to hunt some out just for yourself (start with your GP). You need a place where you can talk about how you really feel, and discuss what you really want. “People who are mildly autistic,” says Levick, “can really benefit from some one-to-one work.”

Levick also has the feeling that you have difficulty getting what you want, and wonder why that might be. “I think you need to get yourself doing more of what you like,” she says.

Even without what you have been through, what you want doesn’t seem so very much – a move 70 miles away, to live by the sea, to be able to take good walks. You are not asking for something impossible.

Levick explains that sometimes we don’t do things because guilt or fear hold us back in unconscious ways. I would add that we make excuses for what we can’t do and then we can become so used to those excuses that we start to believe them. Levick feels you are “stuck in concrete”.

I wonder if you could rent a little property by the sea? I wonder how close you could come to making things more into what you need/want? And instead of coming up with reasons why not, think “how could I make this happen?”

Your panic attacks are interesting – talking very generally (and not specifically about you), Levick says that “panic attacks are about [suppressed] aggression. We all have to manage our aggression somehow and it’s a positive thing, it keeps us going. But some children growing up maybe aren’t allowed to express their aggression and then, later, if there are circumstances where the person feels very, very angry that can come out as a panic attack.”

I wonder if any of that resonates with you?

Your problems solved

Contact Annalisa Barbieri, The Guardian, Kings Place, 90 York Way, London N1 9GU, or email annalisa.barbieri@mac.com. Annalisa regrets she cannot enter into personal correspondence.

Follow Annalisa on Twitter @AnnalisaB

I’m childless and lonely. I feel moving would help, but my husband isn’t keen

Author Joanna Cannon: why I’m going back to the psychiatric wards

Joanna Cannon’s to-do list for next month includes attending the British Book Industry Awards in which her bestselling debut novel has been shortlisted, and pouring tea for people with dementia and their carers in a village hall.

Cannon, author of The Trouble with Goats and Sheep, who quit psychiatry more than two years ago to concentrate on writing, is returning to the NHS as a volunteer with Arts for Health. Its programme, run by South Staffordshire and Shropshire Healthcare NHS foundation trust, brings creative arts to patients. Tea-making aside, she is keen to help patients understand their own life story through “reading for wellbeing” groups and creative writing.

Cannon once retreated to read for two weeks solid after her mental health deteriorated while working as a junior doctor, and she started writing “for therapy” on a blog. “I wrote that blog to understand myself more,” she explains. “If you read some of the early entries they’re all full of doom and gloom because I was trying to process the things I was seeing as a junior doctor. Not by talking directly about them, obviously, because that would be unethical, but by talking about my reaction to things. I think reading and writing is the best way of understanding your narrative from a safe position… reading is also an escape more than anything else. When I had that two weeks off and read books I felt as though I’d left my own life for a bit and just enjoyed being somewhere else, and I think that’s important for patients. Also creative writing will give them an outlet to talk about how they feel without actually having to talk about how they feel.”

The only child of a plumber and a giftshop owner, Cannon grew up in Derbyshire and left school at 15 with one O-level. It wasn’t until her 30s that she took her A-levels, spurred by her resolve to become a doctor. She qualified in her early 40s but became very stressed during her first stint as a junior doctor in general medicine.

“I thought, ‘yes, I can do this, it’s fine, I know what to do,’” she recalls of her first job – to certify a death certificate. “But when I got there it really impacted on me being in the room with relatives and talking to them, so I just went to the loo and cried. And I thought, ‘that’s fine, this is my first time and it will get easier’. But it didn’t, it got worse. I spent my whole weekends going over and over everything that happened.”

At the time, she told no one how mentally unwell she felt. “It’s very difficult to talk to a consultant you don’t really know that well and admit that you’re struggling, because everyone else appears to be coping … and the consultants clearly cope … so to hold your hand up and say ‘actually, I can’t deal with this’ – you feel weak and stupid and a failure that all this money has been poured into your education to get you to this point and you’ve squandered it by not coping.”

She lauds Prince William and Prince Harry for talking about mental health as part of the Heads Together campaign. “People say the stigma is lifting, but I don’t think it is. You talk to somebody with schizophrenia or bipolar or depression or anxiety and I don’t think they would think it was lifting. The NHS does try and encourage people to talk more, but you are only reflecting the general attitude that it’s just too difficult to admit to it sometimes. I’ve so much admiration for Prince Harry. It’s amazing to have such a massive public platform and get on that platform and speak about something like that.”

Cannon is all too aware that encouraging people to speak up needs to be matched by services to meet need. As the general election looms, this former NHS worker echoes the call for more funding so that mental health services don’t “bend and break”.

“The lack of funding is unbelievable. You will get people admitted as an emergency and the only bed available for them is 200 miles away. And these people are perhaps psychotic, so being taken to somewhere they don’t know, and looked after by people they don’t know, is not going to be very helpful to their recovery. In community mental health, you get community psychiatric nurses who have got hundreds of patients on their caseload; how are they supposed to spend quality time with all of them? They can’t possibly do it. And they burn themselves out and they leave. It’s tragic, really.”

Improved investment in the wider social fabric is also needed to promote good mental health, she argues. “One of the biggest risk factors for mental health is social isolation, so now where do people go for that community? Where do they go to socialise when you are cutting all these services in the community?”

For Cannon, the stress she experienced in general medicine evaporated when she joined a psychiatric team. It felt like “coming home”, she says. “I felt truly useful for the first time in my life.”

Working with mental health patients was also the inspiration for her novel, which is about prejudice towards people who are a little bit different. It took just nine months to complete – a feat accomplished by writing at 4am before her shifts began and in NHS car parks during lunch breaks – and has sold more than 100,000 paperback copies in the UK.

She secured a six-figure deal for her second novel, due out next January, and will be working on her third when not volunteering in her old professional stomping ground. “Every day in psychiatry I felt as though I’d made a difference to somebody, I’d made them feel a little bit better about life – and I miss that feeling,” she says of her decision to return to the NHS. “It’s not at all altruistic me going back on to the wards because I get as much benefit out of it as they hopefully will get out of me. I love the people, I love hearing the stories, I love the teamwork. Writing is very isolating sometimes. I miss the camaraderie of being on the wards and of being with a team.”

Has she kept the door open to being a doctor again? “I would never say never, but if I could do this,volunteer and do my writing, that would be perfect – the best of both worlds.”

Curriculum Vitae

Age: 40s.

Lives: Ashbourne, Derbyshire.

Education: Denstone College, Uttoxeter; University of Leicester Medical School (graduated 2010 with a degree in medicine).

Career: 2014-present: author, 2010-2014: NHS doctor specialising in psychiatry, South Staffordshire & Shropshire Healthcare NHS foundation trust; bar maid, kennel maid, pizza delivery expert.

Public life: Volunteer, Arts for Health (South Staffordshire & Shropshire Healthcare NHS foundation trust)

Interests: Reading, walking my dog through the fields, medical humanities, the bridge between art and science.

The Trouble with Goats and Sheep is published by Harper Collins (£7.99). To order a copy for £6.15, go to bookshop.theguardian.com or call 0330 333 6846

Author Joanna Cannon: why I’m going back to the psychiatric wards

A letter to … My brother, who doesn’t know that I’m a heroin addict

You came to visit me last year. Together we planned your trip. You were to stay at my house – I didn’t even realise that your grown-up form (so much taller and broader now) would be far too long for my short couch.

I came to meet you at the airport. I woke up early so that I could be there, ready and waiting. I imagined standing in arrivals, watching for you to emerge from the crowd. I knew that I would recognise you, even though I hadn’t seen you for many years.

I was late, of course. I’m late for everything now. I used to be so obsessively punctual, anxiously arriving at least half an hour early for appointments, studiously mapping journeys and carefully estimating travel times. But I overslept and then, at the airport, I spent a good 20 minutes in the first bathroom I could find, nervously at first and then gradually becoming less nervous, smoking heroin off the tin foil that I carry with me everywhere I go.

I came out of the bathroom and was calmer and happier and a little bit dozy. I saw you right away. Everything was great. You smiled so wide and hugged me. And everything was comfortably numbed and blurry.

I love heroin. I love it more than I love anything else in this world – more than I ever have loved or will ever let myself love anything or anyone else. My heart is beating so fast as I write this, and my palms are prickling damp with sweat. I’m eight hours without heroin and two hours after methadone.

I love heroin because it numbs me. It gave me just what I needed the first time I tried it, which was the ability to remove myself from my life at last, to remove myself from the self that I loathe so deeply and without reason. When I am high – which is all of the time, now – I can negate everything. Nothing else matters any more. I have chosen to reject prevailing lifestyle norms and the desires, both material and emotional, that come with these norms. I never thought that I could achieve anything anyway, so it is really just me in my 20s, mumbling a neat, easy and lazy “fuck this” as I remove myself from the world and sink into an opiate haze to hide.

Keeping my drug use from you is exhausting and you deserve my honesty, not the lie I present to the world

I meant to tell you, of course. I mean to do a lot of things. A lot of these things are simply forgotten – heroin is very good for forgetting, for removing from conscious thought anything that is not about how much heroin I have right now, or how badly I need it and how much I can buy as soon as possible – but some things, like this, are things that I just cannot bring myself to do.

I wanted to be honest with you. I wanted to start your visit off right, to make you breakfast after your flight and then, when the time was proper, to try my very best to explain to you that, yes, I am a junkie. I’ve got zero money and I’m only just hanging on to a job and I’ve just started on an opiate replacement for the first time. Some days, I do want to stop using heroin; most days, I don’t.

I really wanted to tell you everything. Keeping my drug use from you is exhausting and, more than anyone else, you deserve my honesty, not the duplicitous, multi-natured lie that I present to the rest of the world. I really wanted to tell you, but you’re my little brother. And for some reason you didn’t see the person I have become since we last met; you still saw me as your big sister.

Anonymous

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A letter to … My brother, who doesn’t know that I’m a heroin addict

What I’m really thinking: the adult bed-wetter

I always wait until everyone has left our student house to tiptoe to the shower. You probably wonder why I wake up so early or late. Or why I do the laundry so often, and never invite anyone into my room. It is because I live in shame.

I have wet my bed every single night for the past 23 years. I use adult diapers, but sometimes even those are not enough to keep everything dry. When I wash, I use different shower gels each time, because the same smell only reminds me of my morning trauma.

I was diagnosed with nocturnal enuresis at 16. Until then, each specialist told my parents simply to wait it out, that the bed-wetting would end one day. My parents found it a challenge, but I was the one who was giving up on having a normal life.

At 17, I became suicidal. I could see a life of loneliness ahead of me. No one will ever want to share a bed with me. No one will love me. I will have no sex or intimacy with anyone. I can never have children. How can a bed-wetting adult – a baby adult – ever have a baby of her own? How can I ever bring a child into this life knowing that the chance of them also being a bed-wetter is higher than 40%?

Bed-wetting comes with low self-esteem and no hope. It also comes with exhaustion. Mentally and physically, I am drained all the time. Next month I will see yet another specialist, but my hopes are not high. I dream of waking up dry, and slipping out of my room and saying good morning to you. But for now, I can’t. I am ashamed.

• Tell us what you’re really thinking at mind@theguardian.com

What I’m really thinking: the adult bed-wetter

I’m happy, so why do I fantasise about sex abuse? | Mariella Frostrup

The Dilemma I am a woman in my early 20s, about to graduate from university and consider myself very independent with a healthy, normal, happy life. About two years ago I started watching porn. I didn’t even know what to look for, then I began to develop my own tastes and searched for specific things. What worries me is that my searches are for simulations of abuse – something that doesn’t reflect at all what I feel about the subject. I hate patriarchy and rape culture. Another issue that worries me is that now, when having sex with my boyfriend, I invent abuse stories and play them in my head in order to reach orgasm. I don’t like to role play any of those fantasies, I like to feel loved when having sex. I feel like none of this is healthy nor nurturing for my self development. Is it really that worthy of preoccupation?

Mariella replies It’s food for thought. Many women (and men) have similar fantasies and, as you have found, it doesn’t mean they want them made real. Nor does it mean there’s anything wrong with you or detract from all the other more wholesome qualities you ascribe to your life and personality. Fantasies, like dreams, are generally an outlet for emotions and psychological undercurrents we can’t or don’t want to include in our everyday experience. How lucky we are to have brains that can conjure the places we don’t want to go.

Rape is an act that asserts power in the basest, most violating way possible. It is not about an uncontrollable desire for another human being. It’s no coincidence that as a fantasy it’s more common among those in control of their day-to-day lives, rather than those who face such acts of sexual violence as an everyday danger. It’s not abnormal to be stimulated by the abstract idea of helplessness and subjugation. It certainly doesn’t mean when you walk down a street at night you are hoping a man will emerge from the undergrowth and take your right to choose what you do with your body by force.

It’s not abnormal to be stimulated by the abstract idea of being helpless and subjugated

One of the most intimate expressions of sexuality is role playing with someone we trust and desire. It’s not a game that’s open to strangers – except in our imaginations. This is tricky terrain and it’s only with those we feel closest to that we can even admit to such instincts. Whether fantasising about perpetrating sex crimes or imagining being the victim, it doesn’t mean we’re asking for it to happen.

It’s the same literal thinking that connects a promiscuous woman with an open invitation to sexual violence, a scenario we still see played out in courts when a victim (generally female) has her sexual lifestyle paraded as an example of why rape was an inevitability. Should we only be allowed to imagine what is politically correct or gender sensitive? It’s a gross hypocrisy when the loud champions of free speech come down hard on what they consider to be the unsayable.

When I published Desire, an anthology of erotica, last year, an author I greatly admire wrote a long censorious piece about the inclusion of stories that she felt were unacceptably violent or had strong misogynistic undertones. Yet it was an issue I addressed in the introduction to the book, and I clearly sectioned off these stories as Darkest Desires.

As adults we have a right to choose. There are yearnings deeper in our psyche than rational thought and it’s a restrictive view of feminism and womanhood to think we should be incapable of imaging acts and ideas that take us beyond philosophically acceptable terrain. Pretending our instincts are entirely tameable and explicable reduces the scope of human experience. Controlling the desires we can’t rationalise, or that open us or others to harm, is part of our responsibility as evolved animals. Evolution isn’t capable of wiping out the instincts we have been imbued with, but we have powerful tools to diffuse and direct them.

I’m not a fan of pornography because, in extremis, which is where the journey often winds up, it makes literal what should remain fantasy. Like all stimulants, it can create a hunger for greater highs. My feeling is that it’s your diet that needs regulating more than your imagination. Certainly your craving to be controlled and overpowered is worth exploring with an expert and might reveal aspects of your psychology that would be illuminating and perhaps helpful. It’s the domain that therapists exist to help translate and if you are troubled or feel dominated by sensory desires you aren’t comfortable with, do seek professional help.

Meanwhile, in a world where Fifty Shades of Grey sold in the millions to readers who wanted to imagine a domineering sexual dynamic they certainly weren’t campaigning for in real life, I think you can relax. We are complicated creations and exploring our fantasies is as vital as fuelling our bodies – as long as we aren’t causing harm to ourselves or others.

If you have a dilemma, send a brief email to mariella.frostrup@observer.co.uk. Follow her on Twitter @mariellaf1

I’m happy, so why do I fantasise about sex abuse? | Mariella Frostrup

Why I’m marching for the NHS on Saturday | Letters

People ask me if I think the March for the NHS in London this coming Saturday (4 March) will make any difference to the way Theresa May thinks. I can only say that I can’t be sure that it won’t. There is a risk that a small turnout will signal to the government that they can complete their project to get rid of socialised healthcare with impunity. A big turnout with no obvious result may be taken – as with the huge anti-war march in 2003 and what happened next – as evidence that protest is futile.

However, it is our chance to show we still believe in the founding principle of the NHS and the reasons for which it has lasted 69 years so far: that dealing with the risk of ill health is a shared responsibility, and how we provide healthcare reflects who we are and  how we value each other; “when you are in trouble, we are there with you”. We don’t see illness as a money-making opportunity and we want those who do to be sent packing.

Without the hole in the bucket caused by the market in healthcare and all its trappings, there would be enough money to pay the staff properly, to rebuild services in the community and to ditch the cuts and closures included in so many of the sustainability and transformation plans. We want the NHS to continue as a collective project and symbol of a civilised society. Come and march this Saturday to make clear that we don’t accept the lie that we can’t afford the NHS. The truth is that we can’t afford to lose it.
Sue Vaughan
Retired GP, Little Melton, Norfolk

• Polly Toynbee (Labour’s failure on the NHS is prolonging this crisis, 28 February) says that Margaret Thatcher “punished it [the NHS] with the internal market”. That was in the early 1990s. Since then the NHS has suffered even more from Andrew Lansley’s external market “reforms”. It is estimated that “commissioning” now costs the NHS more than £10bn a year. These are not costs spent on healthcare. The commissioning processes are extremely complex and few people understand them or are aware of their costs. The Labour party should be publicising these issues and urging mass support for the NHS reinstatement bill which is due to have its second reading on 24 March.
Joyce Rosser
London

• The nature of the “grown-up debate” called for to discuss funding for the NHS is another Tory attempt to reduce and finally remove the idea of healthcare available to everyone based on need. Tories and their rich media friends peddle this despicable idea so that we can be gradually brought to think that taxation should not be used to pay for everyone’s health. They want us to pay for our own. The poor cannot do this and they, therefore, will be left to be crippled and die from perfectly curable conditions because they cannot afford the cost of treatment.

No decent person would let another suffer when they could help and yet I fear the constant barrage of propaganda might make some people blind to the real aim of these shameful people. If more money is needed, raise taxes; if more doctors, nurses and beds are needed, tax us to pay for them.
Chris Coleman
Nottingham

• As reported, the loss of NHS data has many potentially life-threatening implications (Report, 27 February). Having recently been treated for cancer and its ongoing side-effects, I have discovered that my health trust does not routinely inform patients or GPs of test results. We are told that we will only hear if there is a problem and that “no news is good news”. This open-ended waiting is extremely anxiety-provoking when you are waiting to hear if the cancer has returned; hearing nothing could mean that I am fine, but it may also mean that my bad news letter has been lost in the system without anyone knowing.
Caroline Betterton
Chichester, West Sussex

• “NHS accused of covering up huge data loss” shouts your front page. Except it didn’t. The 500,000 documents were lost by a private company called NHS SBS, co-owned by a French company and the Department of Health, part of  government. And it was Jeremy Hunt who did the cover up. So the NHS was the victim, not the perpetrator.
Dr Richard Lawson
Winscombe, North Somerset

• The subheading says it all: “NHS likely to be hit hard as private firms untouched” (Tax changes could prompt staffing crisis for public sector, report warns, 27 February). The NHS data loss proves yet again that outsourcing public services to private transnational companies is a disaster. It has to be. Service is not their priority. Profit is. Still the privatising of the NHS remains the government’s priority. It is the key element of its raison d’être. It will be interesting to see how St Theresa, having won Copeland “for the people”, will deal with her plans to strip their local hospital service to its bare bones.
John Airs
Liverpool

• Aside from the harm that has undoubtedly come to some of those patients whose clinical information went effectively if not technically missing, this issue seems to be a major breach of information governance as defined by the Data Protection Act 1998. If this sort of thing happened in an NHS workplace it would be treated as a serious untoward incident.

Any such SUI would be investigated and a part of that process would be the NHS duty of candour that applies to health providers and professionals. This was introduced in 2015 by the coalition government, of which Mr Hunt was the health secretary, and obliges staff to explain to those affected what happened and why. The duty of candour was in part a consequence of the Mid-Staffs scandal and the acknowledged need for greater openness. Failure to deliver candour can lead to action by the Care Quality Commission.

From what you report of Mr Hunt’s “perfunctory, complacent and evasive” report to parliament, he is in breach of both the spirit and the letter of his own duty of candour, which seems to be very unsatisfactory and should have consequences for him.
Neil Blessitt
Bristol

• We need to establish what the legal position is with regard to the establishment by the government of a private company co-owned by the Department of Health and the French firm Sopra Steria. The most important questions: who monitors their activities? And how are the profits distributed? Who pays for any damages? How many such joint companies has the government in operation at the present time? All NHS activities are monitored by NHS England – are such companies included and are they recognised within our unwritten constitution?
Dr Patricia Elliott
London

• Pricewaterhousecoopers, which, at the Oscars, failed to ensure that a small number of envelopes were handed accurately to an even smaller number of designated people (Report, 28 February), is more famous in the UK as one of the government’s principal advisers on the reorganisation of the NHS. It was presumably chosen for this role on the strength of its international renown as management consultants.
Paul Hewitson
Berlin, Germany

Why I’m marching for the NHS on Saturday | Letters

Don’t dread old age. I’m 94, and I won’t spend my last years in fear of the Tories | Harry Leslie Smith

I have lived a very long time. Tomorrow, it will be exactly 94 years ago that a midwife with a love of harsh gin and rolled cigarettes delivered me into my mother’s tired, working-class arms. Neither the midwife nor my mother would have expected me to live to almost 100 because my ancestors had lived in poverty for as long as there was recorded history in Yorkshire.

Nowadays, when wealth is considered wisdom, too often old age is derided, disrespected or feared, perhaps because it is the last stage in our human journey before death. But in this era of Trump and Brexit, ignoring the assets of knowledge that are acquired over a long life could be as lethal as disregarding a dead canary in a coal mine.

I have been living on borrowed time since my birth in Barnsley all those years ago: I survived both the depression and the second world war. Even in advanced old age, because I walked free of those two events, I feel like a man who beat all the odds in a high-stakes casino. It’s why I’ve embraced each season of my life with both joy and wonderment because I know our time on Earth is a brief interlude between nonexistence.

Still, many people persist in thinking that old age is the end of one’s usefulness or purpose, which could explain why the news that women in South Korea can expect to live into their 90s has been badly received. Some fear the indignity that old age may bring, or the dependence it may cause because of physical or mental impairment. On occasion I too worry that before death sets in on me that it may rob me of the elements that make me who I am. But ultimately, having experienced the profound indignity of extreme poverty during the 1930s and the sheer terror of war in the 1940s, I know that life must be battled until the bitter end.

Eternity is just around the corner for me but I don’t fear my death. I only regret that death will end my dance to the music of time, no matter how slow the waltz has become to allow me keep up. I know that my physical wellbeing and dignity may yet be affected adversely by the government’s self-created social care crisis but I will not spend either my last years or days living in fear of the Tories. I cannot because I have seen their kind before in the 1930s and 1980s and know that the only way we can beat the tyranny of austerity is through our own personal defiance.

People should not look at their approaching golden years with dread or apprehension but as perhaps one of the most significant stages in their development as a human being, even during these turbulent times. For me, old age has been a renaissance despite the tragedies of losing my beloved wife and son. It’s why the greatest error anyone can make is to assume that, because an elderly person is in a wheelchair or speaks with quiet deliberation, they have nothing important to contribute to society. It is equally important to not say to yourself if you are in the bloom of youth: “I’d rather be dead than live like that.” As long as there is sentience and an ability to be loved and show love, there is purpose to existence.

I learned a long ago time ago that there was wisdom and beauty that could be mined from the memories of those in the sunset of life. It is why as a boy I listened in rapt attention to my granddad as he lay dying from cancer and told me about his life both as soldier and miner during the reign of Queen Victoria.

All of you, when young, will make your own history: you will struggle, you will betray some and others will betray you. You will love and lose love. You will feel profound joy and deep sorrow and during all of this you will grow as an individual. That’s why it is your duty when you get old to tell the young about your odyssey across the vast ocean of your life. It is why when death does come for me – even if it mauls me with decrepitude before it takes me – I will not lament either my old age or my faded youth. They were just different times of the day when I stood in the sun and felt the warmth of life.

Don’t dread old age. I’m 94, and I won’t spend my last years in fear of the Tories | Harry Leslie Smith

What I’m really thinking: the woman trying for a baby

I’m 33, and my husband and I have been trying to conceive for three years. When we were ready, we threw caution to the wind and decided that if it happened naturally, it would be wonderful. Then as the months passed, we began to wonder if there was something wrong, so we got tested. My husband’s fertility is A++; his swimmers are practically Phelps-like in their speed and precision. My eggs, on the other hand, are a little more Humpty Dumpty.

In the past year I’ve been referred to doctors, specialists, naturopaths and acupuncturists. They all ask the same questions. And despite their years of experience, most of them still fill silences with ridiculous lines like, “It’ll happen when you least expect it.” The last thing you should say to a woman who is desperately trying to have a baby is, “Try not to think about it.” It’s all we think about.

We unlucky few reach a point in the road where we start living our lives period to period, or pregnancy test to pregnancy test. We wake and immediately calculate which day it is in our cycle. Is today a sex day? Am I ovulating? Every little pull or twinge in our tummies, we read far more into than we should. Imagine, then, how tough it is when all the practitioners tell you to lower your cortisol levels and stop stressing about conception.

Illustration: Lo Cole

I’m doing my best to remain calm and working every day on finding inner peace and fulfilment – even if my truest fulfilment in life would be to become a mother.

If you know someone who’s trying for a baby, don’t ask questions, and unless you’ve struggled with conception yourself, don’t offer advice. It doesn’t help.

• Tell us what you’re really thinking at mind@theguardian.com

What I’m really thinking: the woman trying for a baby

My partner bought me a Fitbit but I’m a couch potato – is it worth trying?

Every week a Guardian Money reader submits a question, and it’s up to you to help him or her out – a selection of the best answers will appear in next Saturday’s paper.

This week’s question:

I’ve been given a Fitbit Flex by my partner. I’m a bit of a couch potato and reckon I won’t use it that much. Should I try and take it back and swap it for something else, or can other Fitbit users convince me it’s worth keeping? Did it work for you?

Do you have a problem readers could solve? Email your suggestions to money@theguardian.com or write to us at Money, The Guardian, Kings Place, 90 York Way, London N1 9GU.

My partner bought me a Fitbit but I’m a couch potato – is it worth trying?

I’m a doctor, not a gatekeeper turning ‘health tourists’ away | Rachel Clarke

What better way of diverting attention from the government’s failure to address NHS underfunding ahead of the autumn statement than to turn up the heat on immigrants? You know, those hordes of NHS-clogging health tourists who come over here, steal all the GP appointments and make you wait half the night in A&E. Makes you sick, doesn’t it? No wonder our poor NHS is struggling.

Except, as Chris Wormald – the Department of Health mandarin whose comments have dominated front pages – knows better than anyone, the cost of so-called health tourism is a drop in the ocean of NHS spending. An estimated £200m a year is spent treating people who have travelled to the UK with the deliberate intent of obtaining free healthcare to which they are not entitled. That’s a mere 0.3% of the overall NHS budget.

Wormald, addressing parliament’s public accounts committee, revealed government proposals to clamp down on “health tourism” by requiring all NHS patients to prove their identity with two forms of identification, including a passport, before being allowed to receive hospital treatment. It is difficult to believe that the department’s most senior civil servant made his remarks – on the eve of Philip Hammond’s first autumn statement – in all innocence of their likely media impact, and without the blessing of his political masters. He even told MPs: “It is quite a controversial thing to do, to say to the entire population: you’ve got to prove your identity.”

This is not starry-eyed naivety. I know better than most what a ‘health tourist’ looks like

I’ll say. The UK has a long and grubby history of politicians and newspaper editors exploiting Britons’ love of the NHS to indulge in migrant-bashing; and it is something I, as an NHS doctor, am heartily sick of. I am a clinician, not an immigration officer. My job is to care for my patients irrespective of their race, religion, sexuality or nationality.

This is not starry-eyed naivety. I know better than most what a “health tourist” looks like because they are, on occasion, my patients. One, a young woman, was brought by her parents to my hospital from a country in sub-Saharan Africa where her rare auto-immune disease had gone undiagnosed and untreated. She arrived paralysed, mute and covered in sores. She left healed, whole and independent.

Yes, she cost the NHS tens of thousands of pounds. Indeed, you might claim her parents “took the NHS for a ride”. But, in a cradle-to-grave health service founded on tolerance, humanity and inclusivity, I will continue to treat my patients according to need not insinuation.

It’s not that I object to the policy per se, but to its exploitation for political ends. The truth is, the timing of this announcement is straight out of the Trump school of media management – using migrants as collateral damage to cover for the real reasons why the NHS is in crisis. If fiscal responsibility was really the issue here, why is the government not flexing its muscles with forgetful pensioners? After all, the NHS loses more money on missed GP appointments than it does on health tourism. Similarly, the NHS spends £200m a year more on stationery than it does on health tourism – but waging war against feckless pencils just doesn’t quite have the same resonance with the Ukip contingent.

Exploiting anti-immigrant feeling to distract the public from the catastrophic impact on the NHS of this government’s year-on-year underfunding is as irresponsible as it is cynical, potentially fuelling a narrative that stokes anger and hostility towards non-British nationals. Only this week the Daily Mail blamed dangerously long ambulance waits on the unprecedented demands from “migration, the ageing population and patients dialling 999 as they cannot reach their GP”, claiming: “Some paramedics have also reported pressure from migrants who either do not register with a surgery or do not know where to find a walk-in centre.”

In fact, as anyone who works on the NHS frontline is bitterly aware, it isn’t “health tourists” but the government’s £22bn of cuts during this parliament that is decimating our ability to deliver safe, quality care. Our wards are missing doctors and nurses: we’ve never known such a dangerous mismatch between our numbers and those of our patients. This year, whole emergency, paediatric and obstetric departments have closed because of a lack of medics. Now entire hospitals are slated for closure up and down the country.

In this context, it is disingenuous for Wormald to intimate that, alongside migrants, NHS staff like me might be part of the funding problem, with our lackadaisical attitudes towards squandering taxpayers’ money on treating any old Tom, Dick and Harry: “We are not here to criticise NHS frontline staff,” he said, “but what we want is a culture of everybody who works in it to understand financial rigour. We need a culture where we are more careful with the tax pound.”

Perhaps. But from my frontline staff perspective, what patients need more than anything is a culture of candour from the NHS’s political custodians. The longer they deny – or distract from – their dangerous and draconian cost-cutting, the more fearful for our patients my colleagues and I become.

I’m a doctor, not a gatekeeper turning ‘health tourists’ away | Rachel Clarke

I’m Back from the Future and Hillary is President

I’m back from the future and Hillary is President.  It’s not important how I got back from the future.  The point is that I am here and there is something important I have to share with you.  I lived a normal life and returned to this date by chance by might as well be considered magic.  However, I think that this date is important as it is right before the elections which were our country’s last hope.  This may be a chance to get this story out to help give a perspective of what happened once Hillary became president of the United States.

The date was August 10^th, 2019 before I left.  Much had changed since the election in 2016. Our country, as corrupt as it already was, was in great shape in 2016 compared to 2019.  It seemed that right after the November elections and the regime change in January that everything went downhill and fast.  Firstly other nations abroad declared Hillary a threat, right as they were, and false flags, “terrorist attacks”, and even the start of the One Nation World War which they called it (World War III) was beginning just as I arrived here.  I hope by sharing this with you that we can prevent this future that I have just traveled back from.

 

Election Process

The election process stumped the nation.  Hillary won against Donald Trump and all of the other presidential candidates by a landslide which showed the country officially that the election process was rigged.  Mainstream media could no longer hide the fact that Hillary was not accepted by the public as no one but major corporations, the media and other corrupt political officials supported her.  Not one person in the general populace supported Hillary. Hillary Clinton was the butt of jokes throughout alternative media outlets.

To counter this dislike throughout the internet propaganda campaigns were initiated by mainstream media that promised instant fame for Hillary supporters.  From reality television shows to internet podcasts those internet celebrities that hopped on this bandwagon quickly lost their audience’s respect and viewership.

 

First Changes

Some of the first changes after the inauguration were that the U.S. military were to remain in the conflicts happening abroad. More support was to be sent.  This started the draft, or as the media called it, ‘The Great Patriotic Duty.’  The government focused on high school students, promising 17 year olds an early diploma if they joined only the Army or the Marine Corp.  Tours were extended indefinitely and entire military families began residing in allied occupied areas of warzones in order to keep the soldiers focused.  The United States began occupying and building military bases in countries such as Jordan, Syria, Iraq, Afghanistan and Libya. Attacks on Iran began with no evidence to who fired first.  Russia officially intervened and skirmishes between United States and Russian troops began on small scale with most of the battles being hid from the public and only broadcasted through alternative media outlets.

By 2018 more than half of Congress was personally picked by Hillary and the first laws passed ratified the Constitution overnight making all handguns illegal according to their “Easy Concealment” and all rifles became illegal, including hunting rifles, because of their “Destructive Capabilities.”  All registered firearm owners were investigated and ordered to report to their local police departments for confiscation or seizure of their weapons within 20 days.  No compensation was ever given.  Arrest warrants were issued by Supreme Court Judges for all those who failed to comply with the new laws.  All police officers who didn’t enforce the new laws were fined and even jailed.  This led to many domestic skirmishes that started rumors of civil war but were propagandized quickly by the mainstream media as homegrown terrorists and Russian sympathizers.

 

Interstate and International Travel

All international travel was immediately banned which destroyed many businesses overnight and put huge restrictions on all imports and exports.  Even the food on store shelves became scarce. Most individuals had to resort to government aid in order to be placed in a line just to enter a grocery store.  All grocery store chains became guarded by the police and huge gates were installed around them which forced many families to grow food from home or to begin raising livestock.  However, restrictions were added and entire families, including children, were arrested for not meeting unattainable requirements that the government had set for such activities.  In short, crime increased due to starving families and the Black Market grew.

This crime led to attacks on police departments by small guerilla armies.  The public began to see these attacks immediately as a comparison of Robin Hood stories because the food taken was quickly distributed to the public in order to create even more resentment against the overbearing regime.  All states passed an Interstate Highway ban of travel for ‘public safety’ which further destroyed commerce as a whole.  It was quickly realized by the government and the people that there wasn’t a large enough police force to deal with the ongoing domestic disturbances throughout the nation while simultaneously sending the youth forcibly overseas to war.

False Flags, Insurgencies and Destabilization

False flag bombings began in every major metropolitan area in order to give a more heightened police presence.  The “official” reports are that they are from terrorist related cells but everyone knows that they are inside jobs being conducted by shadow operatives of our own government.  Many of these attacks are also being done by heavily armed and equipped groups of men that are masked and look remarkably similar to special forces or paramilitary groups.  Many average citizens have been surfacing and fighting back but the mainstream media is quickly labeling these individuals as insurgents that are to be also considered terrorists.  It is well understood by the general population that the point of these attacks is to destabilize major cities such as New York, Seattle, Los Angeles, Tampa and Houston while elected officials of these cities are stressing that everything is fine.  Canada has taken in American refugees in secret or so the word on the street is but everyone knows anybody caught crossing the border will disappear indefinitely.

United Nations Cooperation and Occupation

As I left the last bastion of hope was still alive.  The internet is still active and government groups are continuously working to quiet and delete all information circulating that doesn’t fit into their agenda.  A special directive was passed that allowed troops representing the United Nations to occupy and provide supplies in major cities but reports have come down saying that this has caused more harm than good.  Entire families are to report to special housing centers while U.N. troops go door to door arresting and even killing all those they deem an insurgent.  This was already happening in New York but never broadcasted.  These rumors only circulated through the internet with the occasional video here and there.  The majority of the nation has declared that the United States is occupied by foreign troops.

Although many coups have occurred amongst the military ranks they are all considered rumors because no proof of these events have been announced or shown to the public.  Militia groups are organized and are actively defiant but are considered worse than criminals. For the most part no one knows where they are much less who they are.  It has been said that Mexican troops have been seen occupying some of the Southern states. Apparently they are laying claim to land that once belonged to them while the government announced a new form of currency will take place that strengthens the bonds between North and South America.  No one has seen this currency yet.  Beijing and Israel have become power centers of the globe as many celebrities have denounced their American citizenship publically and have moved themselves, their families and private security overseas.

All I can say is the United States I just came from looked no different than the pictures and videos I saw of Syria back in 2015.  Bombings throughout the nation have occurred not just by terrorists but by the remaining armed forces in conjunction with the U.N. troops that are not overseas fighting illegal wars.  They have skipped declaring war on the American people and just started.  No one knows when or where the government will attack.  Russian troops have threatened to annihilate any Western troops that they see intervene with Iran.  Our citizens are no longer able to defend themselves.  Shadow forces of the government are purposefully destabilizing our once great cities that were some of the world’s largest tourist’s attractions.  Travel is pretty much illegal and impossible as no food, gas or money is available in excess and most families are either eating a whole lot less while growing their own food, committed to crime or have just disappeared altogether because they reported to a housing center.  Hillary claims our country is great.  On every channel she holds a special message once a week as her “Weekly Update”.  Please help to change this future.

 

Authors Note: I’m not really back from the future.

I’m Back from the Future and Hillary is President

Should I tell my estranged mum I’m pregnant? | Mariella Frostrup

The dilemma I’ve always had a difficult relationship with my mother. She has mental health problems, few friends and feuds with family members. She was physically abusive and mentally controlling when I was young. When I was 16 she pushed me out of a car because I was 10 minutes late to meet her. If things break she won’t get them fixed. Her washing machine broke 15 years ago and she has been hand washing ever since, resulting in RSI.

I went to university, got therapy and “moved on”, although I had self-esteem issues and an eating disorder as a teen. In my 20s I tried to have a relationship with her, but my tolerance for her obsessive behaviour has lowered. I met my husband four years ago and she took an angry dislike to him – since then our relationship has deteriorated. It’s been more than a year since we’ve been in contact.

Now I’m pregnant and others expect me to make amends. I feel little compulsion to do this. Maybe it’s better to live without her to protect my child and myself.

Mariella replies This is so tricky. I’d love to say that life is short, we need to forgive and forget and family is ultimately all we have. But I don’t think that’s true. Often family can be the spring from which our troubles spill forth.

Having a baby doesn’t turn you into a perfect parent, or even a better-functioning human being. In many respects it can exacerbate character flaws that already exist. All the experiences you carry from childhood will heavily influence how you parent. There may be no such thing as a perfect parent, just as there is no such thing as a perfect human being, but some take their dysfunction to heights from which it is impossible to return.

You’ve had a pretty rough childhood and it’s no wonder you’ve tried to escape. I’m in admiration for the strength of character you’ve shown in getting to university, tackling your emotional residue and embracing a life seemingly not too much mired down in past problems. Another test of your resilience would be your ability to maintain an emotional distance while continuing to have a semblance of a relationship with your mother.

Drop her a card and leave it to her to reply. If it comes with emotional tripwires step away

Turning your back and severing contact is sometimes the only path, but it can also be the easiest. It offers a form of escape, but no resolution; it just means you don’t need to cope with behavioural problems and emotional triggers that are your mother’s legacy. It also means you’ll never really know what was at the root of her unhappiness, or come to understand what made her the person she has become. The latter is a potential key to confronting your own foibles and fairly apportioning blame. Curiosity is one reason to try to forge a new, less emotionally fraught connection and, interestingly, your baby may do the work for you.

Grandchildren often develop an entirely independent connection with grandparents, enjoying a harmony with the adults we found impossible to live with. Without responsibility for the young life in their orbit, but enhanced by the pleasure of seeing themselves reflected, love can swing both directions in a fairly unconditional way. Vicariously it can be a healing balm for raw sores.

The most important question is how robust you feel about your own mental health at the moment. Pregnant with your first child is no time to take on additional emotional challenges and if that is all a rekindled relationship with your mother has to offer I’d be inclined to make yourself the priority. Familiarity does not come with a right to continue bad patterns of behaviour down the decades. It’s possible that this period of estrangement has given your mother time to contemplate her relationship with her daughter; it’s also possible that she hasn’t given it a second thought.

I’d be tempted to drop her a simple, kind card, letting her know you are all well, that you are having a baby and that you miss her. Then leave it to her to respond, and if it comes fraught with emotional tripwires step away and consider your duty done. If, on the other hand, your olive branch elicits a reply that feels it’s carried on a conciliatory wind, tentatively step further towards her. Ultimately it’s all down to you. Parenting gives you no rights over your children. At a certain point your relationship with them will be defined not by guilt but by the good times. If that bonding base never existed, ranting and raving about duty, responsibility or devotion is just specious noise.

As in a romance, the quality of blood relationships depends on all parties. They need to be invested in and nurtured in order to flourish. You can’t torture a child for 20 years and then expect them to support you unconditionally in old age. There’s no debt due, but there’s much pleasure to be gleaned watching your child enjoy an independent relationship with their grandparent. I’d give her a chance just to see if she deserves it.

If you have a dilemma, send a brief email to mariella.frostrup@observer.co.uk. Follow her on Twitter @mariellaf1

Should I tell my estranged mum I’m pregnant? | Mariella Frostrup

Steve Hewlett: ‘People say I’m brave about cancer, but I’m realistic. I’m a storyteller’

Back in March, the broadcaster and journalist Steve Hewlett received the sort of mortal shock that frequently opens a newspaper article about how to deal with a serious illness: he was told by doctors, almost out of the blue, that he had an aggressive form of cancer that would be difficult to treat.

But Hewlett’s long experience as a journalist and media commentator for the BBC meant his story has followed a far less private path than most.

On hearing his diagnosis, Hewlett, 58, found himself, almost without missing a beat, wondering how best to communicate his situation and explain what he was learning along the way.

“My initial reaction, quite genuinely, was just to think ‘OK. My luck has finally run out.’ But there is something about journalism that is quite central to the person I am – a tendency to ask awkward questions. And I have realised over time that if I don’t understand something, it is quite possible that other people don’t either.”

So last month, Hewlett recorded the first of a series of candid radio interviews with Eddie Mair, the presenter of Radio 4’s PM news programme. Hewlett’s illness was not a secret among colleagues, but the impact of his decision to go public and talk on air about his medical journey was to give him the second big shock of his year, and this one was much more welcome.

“The size of the response has been amazing,” he told the Observer. “Hundreds of people are in touch. My social media followers went up by a thousand, for a start. People say I am brave about cancer, but I am just realistic. I have my moments, of course, when I well up.”

Hewlett suspects the strength of the public reaction is due to the rarity of hearing a couple of men just talking in a relaxed way about cancer. Hewlett’s analytical approach has always been no-nonsense, whether interrogating media executives on Radio 4, producing an award-winning 1991 BBC documentary from the Maze prison, or interviewing the late Libyan leader Colonel Gaddafi.

Now, in a chatty style, punctuated by his trademark phrase “to cut a long story short”, he has offered his listeners a down-to-earth assessment of his prospects, with honest reactions to his treatment, from details of his chapped hands and feet to his use of a cold cap to try to prevent major hair loss during chemotherapy.

The veteran radio critic Gillian Reynolds summed it up: Hewlett’s instinct for a strong story, she wrote in the Daily Telegraph, is what “makes him the best reporter on the unfolding story of his own physical change”.

For Hewlett though, Mair is at least half of the reason why the radio interviews work. “I have known Eddie for a long time, though not particularly well. When I was offered the chance to talk about the cancer on air, I suggested his show because it is a fairly free format. If he was willing – and warmed to the idea – I said, go ahead. But I have been amazed by the amount of time given to it. The first was almost a third of the programme. The second almost crashed the 6pm pips.”

Gwyneth Williams, controller of Radio 4, has also suggested that Hewlett record a diary for a separate documentary. “I have never had much trouble talking, after all,” Hewlett drily notes. “And so far I have had few side-effects from treatment.”

The scale of listener reaction is “enormously gratifying” to him and he says he has been especially pleased to hear from former colleagues, from his time as director of programmes at Carlton TV, where he produced the acclaimed Second World War in Colour, and right back to Panorama, where he was in charge when Princess Diana gave her famous “there were three of us in this marriage” interview to Martin Bashir in 1995.

Aside from replying to kind correspondence, Hewlett is persisting with research into potential treatments for his condition: advanced oesophageal cancer. Many of his doctors seem, he says, grateful to discuss possibilities with an informed patient. “I’ve looked up clinical trials and drug development programmes because I have the time. I don’t know how much anyone can do to alter the outcome, but you can make the journey better for yourself.”

The latest news on his condition is not great because the first round of chemotherapy failed two weeks ago, after a beguilingly positive start: “It gave me three or four months of improvement and without that I might not be here now. Now I have uncertainty again. I feel as if I have been given notice, that’s all, but can’t know yet if I will be one of those who respond well to the next kind of chemotherapy. There is only around a 4% chance of full remission in any case.”

There is a tendency to endow people who are confronting death with a superior brand of wisdom. Some deliver on these expectations, providing memorable music, in the case of David Bowie, or poetic visions, like the playwright Dennis Potter. Hewlett, however, is not of a contemplative or morbid bent. He is an enthusiast and, in his own phrase, “a question-asker”. So he has straightforward advice to offer, like the tip, passed on to him by his BBC colleague Nick Robinson, that chemotherapy can make you prone to sunburn.

“Most of us will end up in my position at some point, although it is not quite the same when an older person dies,” Hewlett says. “Then there is something almost orderly, or even natural, about gradually sloughing off this mortal coil. This is different.”

An avowed rationalist, he has now had to reconsider his easy dismissal of the “touchy feely” rhetoric of care. He now “listens to his body”, he says, and admits that the aromatherapy sessions set up by the Royal Marsden have helped him to relax: “It has challenged my attitudes.”

This week he is scheduled to rejoin Mair on PM alongside his three sons, Fred, 29, Bill, 24, and Bert, 19. His openness has helped them, he thinks.

“Some ill people feel an instinct to protect their family and say nothing, and that is common among men, apparently, as well as among mothers. But I found talking helps because it gives them a reason why I am behaving in a particular way. It seems important to tell people who might feel they can only see the same grumpy bastard.”

Hewlett’s long streak of luck, he recounts, started when he was taken from a children’s home in Birmingham as a baby and handed to his adoptive parents, Larry and Vera. “I did luck out there,” he says fondly, before listing a further series of fortunate incidents that shaped his career, starting with the moment he was on hand when the BBC needed a local Manchester journalist to find the identity of two men involved with a crime.

The fates nearly turned against him in the mid-1980s when his student activism was detected by the BBC’s covert vetting system and his contract was terminated. In 1985, his evidence to Observer journalists David Leigh and Paul Lashmar helped reveal the processes by which MI5 once controlled the hiring and firing of BBC staff.

Offered a job on the BBC1 consumer show That’s Life, Hewlett instead took a production role with independent company Diverse, making his name with The Friday Alternative and Brass Tacks, before joining Channel 4, then Carlton, then returning to the BBC.

He has, he says, a “tenacious” grip on a story and remains determined to tell this one. All the same, he is unsure whether to track down his birth parents. There is, he points out, now a genetic interest in finding out what happened to them. He would like to give his sons the information.

“It is a hard one,” he says. “It might be worth it, or it might bring someone a brief agony after a lifetime of emotional pain.”

Maybe caution will win out here. Or possibly Hewlett’s instinct is too strong. “I now realise that is really what I am about. I am a storyteller.”

Steve Hewlett: ‘People say I’m brave about cancer, but I’m realistic. I’m a storyteller’

‘I’m menopausal, having great sex with my ex-husband – and confused’

The dilemma I have been having a dreadful time with the menopause for the past two years and a mental health team is now involved with my care. My husband and I split up seven years ago, but we remained close and see each other often. My husband has stayed the past couple of nights as I’m in quite a scary place, but we ended up having sex, and lots of it. I have not had sex for a long time and our sex life when we were married was never good, it was a real chore for me. We talked so much and have felt totally relaxed around each other. Please tell me what’s happening to me as I am meant to be having a breakdown, but I am having the most wonderful time with my husband. I had not slept for three nights before that when the psychiatric nurse prescribed me sleeping tablets. My mood swings are horrendous, yet I feel I have fallen in love with the man who has always been my rock. It’s like I am seeing him for the first time.

Mariella replies Perhaps you are! Thank you for providing a sliver of tangible proof to back up my specious theory that the devil you know can occasionally reinvent himself. What a relief to the many frustrated couples out there despairing of ever rekindling passion. That’s the good news!

You are in the throes of a particularly malevolent menopausal period, in the care of mental health experts and on medication, the side effects of which I am entirely unaware. It’s fair to say there are a lot of potential disrupters to your state of mind. Before you rush to your wardrobe to dust off your wedding dress, I suggest you share this latest development, not only with me, but with those professionals who are charged with your welfare.

It may be bizarre, but it’s certainly not shameful that you and your ex have rediscovered your mojo. But just as antidepressants can curtail your sexual appetite, so other forms of medication can heighten and exaggerate your physical and emotional responses. When the meds wear off you don’t want to find yourselves facing each other across the kitchen table and wondering what on earth it was that propelled you back under the same roof.

Hot flushes are not the only symptoms. Perhaps a voracious sexual appetite can be thrown into the pot

It’s early days, of course, but it has always struck me as odd that we have no expectation of passion resurfacing. In life we enjoy repetition in so many areas, and plenty of them are sensual – food, massage, scents to name a few – so why do we think that once an attraction fades, it will never take on a new form and appeal again?

There’s another reason I welcome your letter and that’s because it mentions the menopause. Generally the only news we’re given on that front is bad – most recently the connection between HRT and the increased risk of breast cancer a further addition to the grim tidings. Clearly the hormonal disruption that has affected your mental health so badly is nothing to go whoop about, but your reawakened sexuality definitely is.

There is an unfathomable mystery to this hormonal readjustment, despite being experienced by 50% of the world’s population. Much of it is down to the shroud of shame too often draped over the workings of women’s bodies. The trickle-down effect of titbits of information from those brave enough to acknowledge the “M” word has led us to realise that hot flushes and flaring tempers are not the only symptoms. Anxiety, sleeplessness, mania, out-of-character behaviour and, perhaps, judging by your experience, a renewed and voracious sexual appetite, can all be thrown into the pot labelled “natural” symptoms. Surely it’s time for a serious investigation into the scientific truth and cultural taboos around the menopause – a condition we understand so little about that it’s burdened with the same level of stigma as a terminal illness.

I’m delighted that, in this dark passage of your life, light has poured in with the presence of your ex. He’s certainly worthy of reconsideration for being at your side during troubled times and in your bed these last few days. That said, the fact that you haven’t slept for three nights makes me worry about your capacity to make rational judgments. I suggest you continue to enjoy the pleasure of his company, but wait until the mist of medicine clears before you leap to any long-term conclusions. Also, be honest with the professionals helping you, because their ability to support you depends on understanding what you are feeling. And enjoy this gift of life-affirming passion and companionship from what seems an unlikely quarter.

I’m not so sure our relentless march forward is in our best interests as a species. Relationships can be victims of bad timing or immaturity, compelling alternative distractions and many other changing priorities. So when we walk away from a person with whom we’ve shared chemistry, who’s to say that a future spark can’t reignite that inferno?

If you have a dilemma, send a brief email to mariella.frostrup@observer.co.uk. Follow her on Twitter @mariellaf1

‘I’m menopausal, having great sex with my ex-husband – and confused’

What I’m really thinking: the dental hygienist

You may think you’re coming in “just for a clean” but it’s my job to check your oral cavity for lesions, your teeth for caries and your gums for periodontal disease, and to provide advice to get you to full oral health. Many a joke is made about relaxing in the chair. I call it the comfy chair; it breaks the tension. I know it’s not the most pleasant experience, so I try to alleviate the worry by explaining the emotions people feel as they lie back. After all, I am “exposing” your vulnerable, soft places – your belly and chest – and instinct prompts the nervous patient to cross their arms. Then, as I start the treatment, I am right there in your personal space, wearing a mask and glasses – another uncomfortable feeling for you.

I like my job and people mostly leave feeling better, wiser and – yes – cleaner. I don’t mind how bad your teeth are, it’s bloody satisfying getting a load of tartar off, leaving smooth enamel to rub your tongue around instead of rough rock. But I have feelings too; I can’t help looking at your blackheads and up your nose at your nasal hair (or worse). You can’t blame me: I have excellent lighting.

I find it rather creepy when your tongue follows my instruments and irritating when it nudges them out of the way, and when you look me in the eye as I move into your vision. And why, all of a sudden, can’t you swallow your own saliva? But the worst thing is the disrespect some people show by not cleaning their teeth or by eating just before seeing me. I’d never say it, but I so want to ask: “Would you leave another bodily cavity in the same condition if you were visiting your gynaecologist for a smear test or a urologist for a prostate exam?” I don’t think so.

• Tell us what you’re really thinking – email mind@theguardian.com

What I’m really thinking: the dental hygienist

As a thalidomider, ‘I feel I’m being treated like a scrounger’ | David Brindle and Sue Learner

For Phil Spanswick, who has lived all his life with shortened limbs, three fingers on one hand and four on the other, as a result of the thalidomide scandal, it was galling enough to have his benefits cut after reassessment. But it was doubly so to discover that the assessor had put his condition down as genetic.

“She was 21 and had trained as a paramedic and asked me three times how I had got my disability and what age was I when I got it,” says Spanswick. “She didn’t even know what thalidomide was, that it was manmade and babies were born with it.”

It is almost 60 years since the thalidomide drug was first licensed for use in the UK to counter the effects of morning sickness in pregnancy. By the time it was withdrawn within three years, in 1961, hundreds of babies in Britain and tens of thousands worldwide had been born with limb defects caused, it later transpired, by a component of the drug inhibiting the development of blood vessels and stunting growth.

The scandal became a cause celebre. The drug’s manufacturer in the UK, Distillers (now Diageo), fought a lengthy legal battle with the families affected and it was only after a campaign by the Sunday Times that compensation was settled in 1973 for most of the children, who were by then entering their teens. A long-awaited government apology finally came in 2010 and it was only after half a century in 2012 that the German inventor of the drug, the Grűnenthal Group, issued a statement saying it regretted the consequences.

Remarkably, people are still coming forward with claims for compensation. But as Spanswick’s experience suggests, the thalidomide story is slipping from the consciousness of even health and care professionals and the drug’s survivors – known as “thalidomiders” – are certainly winning no special favours from the reformed benefits system.

Spanswick, 54, has had his lifetime award of disability living allowance (DLA) downgraded under the reassessment process carried out as part of the benefit’s transition into the new personal independence payment (PIP). He is not alone: the Thalidomide Trust, set up as part of the 1973 settlement to administer compensation and represent the interests of survivors, knows of three other cases and suspects there are “quite a few” more.

“The effects of thalidomide are not well understood and the new assessment process can be difficult for individuals to understand and navigate,” says Deborah Jack, the trust’s director. While her team has been able to help other thalidomiders to protect their DLA awards, she explains, it was unaware of Spanswick’s case before it was too late.

Spanswick, who lives with his wife, Rachel, and two grown-up children in Lambourn, Berkshire, has one leg five inches shorter than the other, no left hip, virtually no arms and no thumbs. He is unable to tie his shoelaces, wash his hair and body, or use the oven or washing machine. He needs assistance to get dressed, although he has mastered the art of putting on a sock by using his other foot. 

When he falls, which can be quite often, he cannot put his arms out to break the fall and so tends to hit the ground, injuring his head. He is incapable of getting back up by himself. Yet despite this, he has been assessed under PIP as being entitled to the standard mobility component, worth £21.80 a week, rather than the enhanced rate of £57.45.

Back in the 1980s, Spanswick was awarded higher-rate DLA for what he believed would be the rest of his days. “Up until then I had to keep having medicals, but the doctor said I obviously had a disability that was not going to get better and would only get worse –so they awarded me DLA for life,” he says.

Three years ago, however, the government began to roll out PIP as a replacement for DLA for people with a long-term health condition or disability. The reform meant compulsory testing regardless of previous lifetime DLA.

In December last year, the assessor, working for private contractor Atos, came to Spanswick’s house. “She filled in multiple-choice questions and asked me how far I could walk,” he recalls. “I have one leg shorter than the other, so it all depends. Cobbles are really hard and I can walk further if there are benches along the way so I can sit down and have a rest. These questions cannot be answered with a simple ‘yes’ or ‘no’.”

A few weeks later, on Christmas Eve, he was shocked to receive a letter saying he was eligible only for the standard mobility component. As a consequence, he has lost free car tax worth £515 a year for his vehicle and automatic entitlement to free parking. If he had run a car under the Motability scheme for disabled people, rather than his old, adapted 4×4, he would have had to forfeit that too. He asked for the mobility assessment to be reconsidered. At the end of February, he was informed that the decision had been upheld. He then lodged a formal appeal, but a tribunal has rejected his case.

A Department for Work and Pensions spokeswoman says PIP is a fairer and more objective system than DLA. “Decisions are made after consideration of all the evidence, including an assessment and information provided by the claimant and their GP”.

Spanswick who still gets the higher-rate “daily living” component of PIP, worth £82.30 a week and receives an amount of compensation through the Thalidomide Trust that he prefers not to disclose, says he used to have faith in the system, but now feels “completely let down” and the victim of injustice. “I feel like they are treating me like a scrounger. These assessments try and pigeonhole you, but you can’t pigeonhole disabled people.”

His battle with the DWP has also brought back bad memories for Spanswick’s elderly father. “My father is so upset at this as he feels he had to fight for me when I was young for something that was caused by a drug company. Now I am having to fight all over again.”

Thalidomide: the facts

There are currently 465 thalidomiders on the books of the Thalidomide Trust, but people are still coming forward with potential cases – at an average rate of one a week over the past two years.

Deborah Jack, director of the trust, admits that even she is amazed. But she explains that people who were born with relatively limited physical disorders, and have been able to cope for more than 50 years, may now be struggling.

“One of the most common minor disabilities caused is absence of thumbs, or really tiny thumbs,” Jack says. “While you may have been able to manage with that, after all this time the strain of using your hands unnaturally to compensate starts to tell on your hands.”

By no means all claims for compensation are accepted after investigation. Many similar disabilities have other causes.

The trust administers investments of £130m provided by Diageo and a separate fund set up by the government in 2012, worth £80m in England over 10 years. Payments are made to thalidomiders according to the extent of their impairment.

As a thalidomider, ‘I feel I’m being treated like a scrounger’ | David Brindle and Sue Learner