Jeremy Corbyn and my dad – a personal view from my 19yo son

January 2019 was the worst month of my life. Ever since my dad, my best ‘bud’ as he used to call me, was diagnosed with terminal cancer in 2016, we knew the end was coming but nothing could prepare me for the heart-breaking finality of his death. My dad was an extremely kind and gentle man, almost to the point of being too kind. He cared deeply about society and the growing numbers of homeless people really upset and angered him. I remember one instance where someone had dropped two £20 notes and after asking around the street whether anyone had dropped it, my dad instantly and without a thought gave £20 to a nearby homeless man and then saved the other £20 for another homeless man he had given money to near the car park earlier on in the afternoon. He cared deeply about kindness and in what proved to be my last ever birthday card he wrote ‘always remember personal achievement is never more important than being a kind person, be kind and you will always be loved by others’. I miss my dad, my best friend, the man I looked up to most, every day, writing this I feel the familiar pang of despair and absence, the empty hole in my heart where he used to be.

This blog is not solely about my dad, however. There is an election on Thursday. My dad no longer has a voice and it is for this reason I have decided to write this article. My dad worked for Jeremy Corbyn when he was a relatively unknown Labour MP in the 1990s as his parliamentary assistant. Their relationship was not your typical boss and employee relationship, through this period they struck up a strong friendship over many years. However, as Jeremy Corbyn would later tell me after 2000, the year in which I was born ‘Steve stopped working the long hours he had been known for’, he wanted to spend time with and look after me. My dad and mum eventually moved to a different city where I grew up. Despite all his virtues, my dad was not a man who was very good at staying in contact with old friends and as such he fell out of touch with his old friend and boss. It was one of his big regrets he told me many a time before Jeremy Corbyn had even run for the Labour leadership.

I remember vividly the day Jeremy Corbyn was elected leader of the Labour party; it was retrospectively one of the happiest days of my life. Previously I had always been interested in politics because of my dad but it was the leadership race of 2015 that truly enthused me and as a 15-year-old was the first political election I ever voted in. To see my dad so happy and alive with hope makes it a precious memory. As I sit lie awake fraught with sadness, grief, fear and yet hope on this cold Tuesday night, that day and the hug we shared upon Jeremy’s victory feels a world away.

To see my previously fit and healthy dad in his late fifties gradually wear away before my eyes over the last couple of years broke my heart and not a day goes by where I wish I had spent more time with him, sometimes just lying with him with my head on his chest as I did far too few times through his illness. He had happy days in the time of his illness, such as when his cancer was temporarily in remission, but these days were few and far between. Jeremy Corbyn gave my dad and our family one of these days in the harrowing most lonely last days of his life.

Jeremy Corbyn hadn’t seen my dad, his ex-employee for 18 years and yet upon hearing about his illness and hospice admission in January of this year, took time out in what was an extremely busy time of Brexit and parliamentary chaos to visit him in the hospice, Birmingham. This act for me just demonstrates what kind of a man Jeremy Corbyn is, a loyal and kind man who cares deeply about other people. How many of us in such a busy and high-profile job, with advisors pressuring us to go here there and everywhere, would really take the time out to see a dying friend we hadn’t seen for 18 years?

2 hours. That’s the amount of time Jeremy Corbyn and Nicolette, another friend of my dads from the nineties spent with us on that day. My mum had told us they were only coming in for 15 minutes, a time that would have been completely understandable given the pressures of his job. And yet Jeremy sat for 2 hours at my dying dads’ bedside as he struggled to breathe even with his oxygen mask under the stress of laughter about some anecdote from ‘the good old days’. What Jeremy Corbyn gave us that day was a memory. In a period where there were no happy memories, Jeremy Corbyn gave me, my dad and my mum something priceless. To see my bed-ridden dad so happy, his face full of life, his eyes alit with verve and vigour was beautiful. When I see Jeremy Corbyn portrayed in the media as this horrible evil racist, ‘most dangerous man in Britain’, it pains me because I know this not to be the case. He did not have to pay what was a completely non-political visit to the hospice that day, but he did because he is a kind man who cares about other people. His policies show this, there is only one leader in this election who wants to end rough sleeping, lead the world in saving the planet from climate change and unburden our young people from a lifetime of debt. There is a myth in the media that Jeremy Corbyn is an obsessive man who is too focussed on ideology and politics takes precedence over everything else in his life; this is not true as is shown by him taking time out of such a busy political week to talk to, reminisce with and ultimately be there for my dad, his employee and friend who he had not seen for almost twenty years on his deathbed.

My dad was so energised by this visit, that at the end, his eyes lit up with hope, he promised to ‘try and come down to London soon’. And at the end of a week in the hospice where my dad had got better every day, it did not seem so unlikely. Maybe, these two friends would against all the odds meet again. That day, coming even in such a dark and painful time is one I hold close to my heart. This day, which was full of life, made my dad’s death four days later even more sad and shocking.

Jeremy sent his condolences and to our surprise he even offered to speak at the funeral. My mum and I thought this was extremely generous although conceded it may be unlikely given how busy Jeremy was at the time. A man of his word, however Jeremy Corbyn did come to my dad’s funeral and spoke movingly about their friendship and who my dad was as a person for an extended period of time. I am not ashamed to say that my dad was, for much of my childhood, at home to look after me and my little brother while my higher-earning mum worked in London during the week. However, my dad sometimes felt(wrongly) as if he had achieved little in his life, and to see a man who could be the future prime minister speak about my dad’s work for him in such glowing terms in front of my family and friends describing him as ‘laying the foundations for where we are now’ , filled me with such pride and I know if my dad was watching on, it would have brought a tear to his eye. I wish my dad could have seen how valuable his life was to others whilst he was still alive. To have my close friends who had also attended the funeral message me afterwards saying hearing about my dad ‘inspired them to be a better person’ and that he sounded like ‘a truly great man’ meant the world to me and is again down to the kindness, loyalty and generosity of Jeremy Corbyn.

I wanted to tell my personal story because many people have a warped image of Jeremy Corbyn as some sort of antisemitic terrorist when he is nothing of the sort. He is a kind, principled, peaceful and loyal man both personally and politically. At this election we have a choice between Jeremy Corbyn or Boris Johnson, a man who has written the ‘n word’ in comics he has authored, who has voted repeatedly for cuts that hurt disabled and poor people the most , a man who has described Muslim women as ‘letter boxes’. I just want you to ask yourself if you can ever imagine Jeremy Corbyn doing one of these things, let alone all of them? And perhaps more importantly can you imagine Boris Johnson doing for an ex-employee what Jeremy did for my dad and our heartbroken family? My dad wrote in my birthday card ‘be kind to others and show solidarity to those less fortunate than yourself, ‘all for one and one for all’ ‘. A sentence could not sum up Jeremy Corbyn and his politics more, he is an inspiration. 2019 started with heartbreak, yet on December 12th, 2019 could end with real hope and unbridled joy. Vote for Jeremy Corbyn. Vote for kindness. Vote for Labour.

Conor Hogan

Legacy

I can’t find a way to introduce this post, other than with the simple, heart-breaking truth: on Wednesday January 23rd, my beloved partner of twenty-eight years finally passed away.

The average survival rate for people diagnosed with stage four lung cancer is currently just a few months. But Steve surprised everybody by surviving for nearly two and a half years, thanks to an NHS that provided free access to four rounds of chemotherapy, countless courses of antibiotics and a ground-breaking trial of genomic medicine. When active treatment was no longer appropriate, the length and quality of his life was vastly improved by weekly visits from our family GP, in partnership with the palliative care he received both at home and in the hospice. Throughout his illness, Steve was admitted to the resuscitation ward in A&E three times, had sepsis twice, with constant bouts of lung infections in between. He survived each crisis thanks to the calm skill of paramedics and urgent care staff, but also his sheer determination to live and his unfailing hope that somehow, he would.

After all the near-death experiences he survived, I still can’t quite believe that this time, it really is all over. Regrets and ‘what ifs’ circle like dark Dementors, but I am trying to keep us all focussed on what we gained during these last two and a half years, not what we lost. Since that terrible September day when we learned of his diagnosis, we have celebrated three family Christmases, rung in three New Years, and celebrated five more birthdays of our two young sons (now aged 18 and 14 respectively). We had a family holiday on the Isle of Skye, he and my son enjoyed the successes of their beloved Celtic and – casting our principles aside – after twenty-eight years we finally got married in a joyous, hilarious Registry Office wedding on Friday 13th.

As I write this, the house is unbearably still. The oxygen machine that pumped air into his lungs 24 hours a day is now silent. Plastic tubes coil around the house, waiting to trip me up. Everywhere I look: the wheel chair, the orthopaedic stool, the portable cylinders that provided just enough oxygen for two cups of coffee in a café – if we were quick. The house is cluttered with the paraphernalia of his illness, but this, I have to remind myself and our boys, was not him.

Tomorrow I will phone the oxygen suppliers and the hospice to ask them to take away all the things that both supported and constrained his life. I will then meet with our Funeral Director and begin the process of salvaging my Steve from the wreckage of his disease. I know many people see funerals as just something to get through, but I welcome this opportunity to remind my boys and myself of who their father really was. I want us to remember the walking holidays, his love of Scotland, football, books and ideas. I want us to appreciate and value how utterly devoted he was to our young family, and how because he was completely without ego, he gave up his career to bring them up so that I might persue mine. At first, I was worried about how I could possibly sum up his life in a 45-minute ceremony, but over the past few days it has become clearer through the many messages I’ve received from friends and family. Although different people knew him in different decades and cities, every single person uses the same word to describe Steve, for above all else he was kind. As one friend put it, he simply radiated kindness.

Two months ago, Steve wrote this advice in our son’s eighteenth birthday card: ‘Stick to the values that we as parents have taught you. The most important of these is kindness. Caring, being respectful and kind to others, comes way above any personal achievement.’

I have lost my soul-mate, my boys have lost their father. But his legacy, love and kindness, remains.

RIP Stephen Hogan 1959 – 2018.

Saint Stephen’s Day

In the Christian calendar, today is known as Saint Stephen’s Day. In our house, it was my partner’s birthday, and – according to the doctors – his last.
Our friends on twitter (and believe me, you are true, good friends) will know that just over two years ago, my partner of twenty-eight years was diagnosed with inoperable lung cancer. I documented our long journey of despair, hope, despair and yet more hope on my blog. But despite the fantastic efforts of the NHS, on November 1st we were told that the extent of his cancer meant that active treatment was no longer an option, and so he has moved into palliative care.
I am not going to try and capture our devastation, or dwell on the dark days that followed and that I know are yet to come. Today I just want to mark his birthday and the contribution he has made to the world. He holds no awards, no titles; possesses no medals or great wealth. Yet my partner is a true success. Eighteen years ago, he gave up his career to bring up our two boys so that I could persue mine, and suffered all the isolation, stigma and setbacks that are typically endured by women. Partly because of this, my lovely, modest partner, is convinced that his life has largely been a failure.
Yet this morning, I asked my two boys to write for the last time in the birthday card we had made for their dad. Independently of each other, both wrote about his kindness, generosity and sense of justice, and how he has been and will be a role model and an inspiration throughout their lives.
My partner was named after Saint Stephen, and the more I read about his namesake, the more apt it seems. Not afraid to speak the truth as he saw it, according to the Bible, Saint Stephen was stoned to death for his views, whereupon he prayed for the Lord to forgive his killers. According to biblical legend, he was kind, strong and true, always thinking of others and never himself.
It appears to be in the nature of the truly good to forever put other people’s needs before their own. I keep begging my partner to be selfish in these final days: to tell us what he really wants so that we can ensure that he receives it. Yet as our wise palliative care consultant said, if you have failed to change him in twenty-eight years, you are unlikely to succeed now, so just embrace it.
Of course, she is right. But this all requires acceptance, a position we are still struggling to reach. That old bugger hope will keep on raising its head.
In the meantime, please join me in wishing the father of my children and the love of my life a happy birthday, and pray that as in days of old, some miracle will come our way.

How I got my (German) book deal

 

On my 40th birthday, my partner and boys bought me a laptop so that I could finally make a serious attempt at writing a book. I wrote (at length) about my journey here, https://tinyurl.com/he4pzrs but long story short – six years and three and a half books later, I was lucky enough to sign with top literary agent Sue Armstrong. Fast forward to the present – nearly nine years after I first opened that laptop – and INFERNUS (a YA Dan Brown novel) will be published by Oetinger in Germany on August 20th.

That short paragraph masks so many twists and turns on my path to publication, so this post is about how it happened, but also why I have kept quiet about this fantastic book deal until now.

Those first couple of years writing were spent making mistakes on a MG timeslip novel that was quickly (and quite rightly) rejected by agents. By the time I had learnt enough to turn my MS into a competent historical YA novel, I was fizzing with ideas for another book. I had always been fascinated by ancient myths and legends concerning the origins of mankind, and as 2012 approached, my teenage interest in apocrypha and prophecies was reawakened. My brain began to make those magical, creative connections between ideas, facts and fictions to create a story with a complexity and ambition that both terrified and excited me.

I began writing INFERNUS in 2012 and it went through many, many incarnations as I honed the story of 17-year-old Maria who uses all her code-cracking skills to follow a 13, 000-year-old trail of clues from Glastonbury Tor to the pyramids of Egypt, to reveal the secret knowledge that will prevent the rise of the Antichrist. As Maria discovers the shocking truth about her own identity and the secret history of mankind, she is forced to make a devastating choice: whether to follow her heart and the boy that she loves, or her destiny, which is to destroy him.

For a long time, I called this novel ‘the bonkers one’, working on it mostly for myself as I worried away at the knots that had remained at the bottom of my brain’s drawer for thirty odd years, delving deep into ancient Egypt, the Dead Sea Scrolls and Pythagorean puzzles. But when it was longlisted for Mslexia in the autumn of 2015, it gave me the confidence to submit it to agents, and I was delighted to sign with Sue Armstrong from C+W Agency. Sue and her assistant Emma Finn gave me wise and insightful edits that helped me improve it even more. But just as I was hoping we might be close to submitting to publishers, we received personal and devastating news.

In September 2016, my partner was diagnosed with lung cancer. I wrote about that terrible day here https://tinyurl.com/yabpddlm and have documented the exhausting but thankful journey we have since made between hope and fear. Publication was no longer a priority as I changed jobs and focussed on keeping things as normal as possible for our two boys as we supported my partner through his gruelling chemotherapy regime. I did, however, continue writing. In fact, I discovered that I didn’t just want to write – I needed to write. In the day time I was busy juggling looking after the boys and my partner with work, but in the blank spaces of night and stretched hours of dawn, fear of the future overwhelmed me, so I pushed back with my pen. Instead of worrying about ‘what if the chemo doesn’t work,’ I worried about plots, characters, pacing and tension. Writing kept me busy. It kept me going. It kept me sane.

By spring 2017, we had fantastic, knee-wobbling news: against all odds, the chemotherapy had pushed back the cancer and my partner regained most of his mobility. Feeling hopeful, I polished off INFERNUS (which was then called HIS DARK SOUL) and just before the children’s book fair in Bologna, we finally submitted it to publishers.

Everything you have read about how awful it is to go on submission is true. All that work and then the waiting. And more waiting. Long and painful story short – I got some great feedback, but I didn’t get a UK deal. One publisher came very close, but ultimately didn’t like the sci-fi element at the very end.

Then out of the blue at the end of May, I got a call from Jake Smith-Bosanquet in the International Rights team at C+W Agency. A German editor had enquired about my novel, and even though there was no UK deal, they were so keen they were willing to consider translating it and publishing it themselves – as long as I made their proposed editorial changes. Was I willing to consider this rather unusual approach? To be honest, it didn’t seem real. I was mentally focussed on a completely different book that had just been long-listed for the Bath Novel Award, so I said yes, depending on what their editorial letter said, not at all convinced that this was actually going to happen.
A few days later, I received what I can only describe as a love letter to my book. The two editors – Carina Mathern and Lilly Raible – had taken great care to set out over eight pages of beautifully written English what they loved most about my story and characters and how – if I agreed – they would like to help me make it better. Their proposed changes to the ending were bold but simple, removing the sci-fi elements that had put a couple of UK editors off and locating it firmly within the Dan Brown genre. Their letter was written with such passion and respect as well as wise editorial insight, that I knew immediately I wanted to work with them.

So here was a major German publishing company (responsible for Inkheart and the German edition of Hunger Games) offering a very good deal for both books in my duology. It should have been a moment to celebrate. Ordinarily, I would have written a post about it and shared my good news with the twitter writing community who have given me so much support over the years. But on the same day I received their editorial letter, we also received the results of my partner’s scan. After just three months without chemo, the lung cancer had grown back terrifyingly fast. That summer is a bit of blur, but as my partner endured a second cycle of chemotherapy, we couldn’t go on holiday – in fact, we couldn’t really go anywhere – I managed to complete the edits to book 1.
Once again, the cancer was pushed back, yet once again it returned. Our hopes were raised when he was accepted on a clinical trial and in the wee small hours I began work on book 2 in the duology – only to have all my research and an early draft stolen from my laptop in a burglary. I was gutted. The last thing we needed was more trauma and stress, and apart from six months solid research, we lost irreplaceable anniversary gifts we had given each other. Unable to face redoing the work for book 2, I threw myself into a work project and revised another novel. After several months sulking, I forced myself to rewrite all those stolen words. I told myself that if it mattered, my brain would retain it, and that without the crutch of research, the story would be liberated. In the day time I buried myself in work, at night I lost myself in my book, which because I knew the characters, the plot and the research, almost seemed to write itself. Book 1 took five years, but the second book was written in just five months. I sent off the final draft of INFERNUS 2 to my editors a few days ago, and so the duology that has held my brain hostage for over six years is now finally complete.

It feels very strange to be having a book coming out in another country in just two weeks’ time. I am told that Germany is the largest market after the UK and America for sales of books in English, that they are big readers and love British writers. My publishers seem confident that INFERNUS will do well and are investing in a major marketing campaign involving social media, videos, quizzes, posters and pamphlets (although interestingly and in contrast to the UK, the promotion mostly begins after rather than before publication).

I am incredibly grateful to my German publishers (or ‘the lovely Germans’ as we call them in our house) and my agents for their passionate support of my book and the special effort they have made to publish it even without a UK deal. I can’t wait to hear what German readers make of it and hope that despite my inability to speak their language, we can somehow find a way to exchange views on the ideas and issues it raises.

I also owe a big thank you to all the lovely people on twitter who have kept me going in recent years and encouraged and supported me to carry on writing. Because of price protection, most books are still sold through physical shops in Germany, but INFERNUS is also available in hardback on the German Amazon website https://tinyurl.com/y76mzgnn (cover below) or on kindle on Amazon UK https://tinyurl.com/ybk8zqt3 – although only in German, so if you happen to know of any German speaking YA readers who love Dan Brown type thrillers, then please do let them know!

But most of all I have my brilliant, resilient and remarkable partner to thank, who has not just put up with me muttering ‘it is all connected’, for more years than I care to remember, but actively supported me with characteristic grace, despite his terrible illness. He is now undergoing his third round of chemotherapy and although I’m glad my story will finally find some readers, my dearest hope is that by the time my book is published on August 20th, we will truly have something to celebrate.

Make it go away

Two months ago, my partner began a new clinical trial which we hoped would at least halt, if not reduce the cancer that was rapidly spreading through his lungs. To gain access to these promising new drugs, he underwent an open lung biopsy, suffered life threatening infections and then waited an agonising five-months to find out if he had the necessary genetic mutations. He did, and I wrote about our hopes here https://tinyurl.com/ya88fjrc

The trial meant that instead of a gruelling regime of chemotherapy, my partner took just one tablet a day. If it worked, the drug would perform the job of a defective gene and halt the growth of cancer cells, with a chance that over time the disease itself might actually reduce. We recorded every symptom in a diary, went for blood and ECG tests every fortnight and after two cycles of the drug, a CT scan was taken to assess the impact.
Three weeks ago, our Consultant told us that unfortunately, the scan suggested disease progression. My partner has a rare form of cancer, so these things are not clear cut, but on balance, we reluctantly agreed that my partner was getting worse. He could barely walk the few steps to the Consultant’s room, and even as he tried to (initially) suggest it might be working a bit, his words were lost in a bout of breathless coughing.

To my relief, we moved quickly onto what else might be done, and my partner agreed to return to the chemotherapy that had worked so well nearly two years ago. It is a tough and toxic regime that will wipe out the first week in every three and put him at risk of infections in the second. Some might wonder why he would punish his body further with third line chemotherapy, but our hope is that once again, it will push back the disease so that he can regain some mobility. At the moment, every trip to the toilet is exhausting and upsetting, and going out or driving is simply no longer an option.

My partner was getting worse by the day, and the NHS once more responded with the necessary speed and urgency. All the pre-chemo tests and drugs were administered last week, and so this Monday, he was once more sat in a chair and hooked up to a drip for ten hours, before returning home with a carrier bag full of drugs to manage the side-effects.

Friends and family have been brilliant, and many have asked what you are probably thinking now: crikey, how are you all coping? When my partner was first diagnosed, I would usually say ‘fine’. Partly because it is my personality to close such discussions down, but mostly because it was true. After the initial grief and shock, there was still breakfast, lunch and dinner to make and eat; the boys still had to go to school and do homework and exams and I had a full-time job. Life with children has a momentum to it. It’s like being on an escalator during the rush hour, where you are forced to move forward or get lost in the crush.

But the past few weeks have made me more reflective and honest. When people ask me now how things are, I say it’s hard. Really hard. Unless you have ever lived with someone with lung cancer, I am not sure you can imagine how terrifying and upsetting it is to witness someone you love struggle to breathe. It is the most basic of functions that we all take for granted: breathe in, breathe out. But when your lungs cannot expand, and your oxygen is reduced, any exertion can leave you gasping and fighting for air. All I can do is rub his back and pray these sights and sounds will not haunt our boys for the rest of their life. And if it traumatises us, what must be it be like for him? To feel yourself unable to breathe? I am writer. I imagine things all the time. But that is one thing I cannot bring myself to imagine.

It is not so much the extent of his illness that makes things so hard right now, but the length of time we have all had to endure it. My partner has been suffering with lung cancer for over two years now, although he wasn’t diagnosed until September 2016. Two years where we have swung between anxiety, knowledge, hope and despair, many, many times. Two years during which time my poor partner has been given the worst of prognoses, then to be told twice that miraculously his lungs have almost returned to normal, only for the cancer to return once more. Two years of countless hospital admissions for lung infections including pneumonia and sepsis, when my young boys have had to cope with late night, frightening admissions to hospital and the monotony of visits, disrupted routines and takeaway food.

This is not a complaint. That my partner is still alive is a testament to the skill and care of the NHS. And it has not all been misery. After the first successful round of chemotherapy, we went on a family holiday to Skye. My partner was well enough to support my eldest through his successful GCSEs and witness him going on a rugby tour to Canada as a boy and return as ‘a man’. We have had two lovely family Christmases and birthdays and many tiny, precious moments of love.

Yet it has taken its toll on us all. We are fortunate to have been offered free family counselling from Macmillan. I have never had counselling before and I must confess, if it weren’t for the boys, I would never entertain the idea. I am a ‘coper’ by nature. I like to focus on solutions, not problems, and see myself as a fixer. Likewise, my partner is a quiet, unassuming Scot who rarely talks about his feelings with friends, let alone strangers.

But counselling has made us realise and accept just how tough our lives are. When the counsellor asked me what my objective from our sessions was, I said I wanted the cancer to bring us closer together, to make us kinder and better to each other. She looked at me with a kind of appalled pity and said, ‘that’s not very realistic is it? You are going through a period of extreme trauma, and this is going to be really, really tough’.
Our counsellor then asked me how do I cope? I have been thinking about this, and I don’t think any of us really cope. ‘The word ‘cope’ implies a degree of choice or control that people affected by cancer simply don’t possess. This terrible illness is something that like it or not, we all have to endure.

My partner endures it with a gentleness of soul that humbles us all. He is not angry. He is not bitter. And he never, ever complains. But when the coughing and breathlessness gets very bad, he increasingly prays to a higher force to help him. And most heart-breaking of all, to us he whispers, ‘I am sorry.’

Of course, he has nothing to be sorry for. Every day with him is a gift, and today – Father’s Day – we will try and make him realise and believe that. And although his body is still suffering with the toxic effects of chemotherapy, we hope and pray that the cancer is suffering more, and that once again, it will be pushed right back.

There is a song in my head on a loop at the moment: This Woman’s Work by Kate Bush. It was inspired by the pain of childbirth, but the lyrics capture exactly how I feel right now.

I know you’ve got a little life in you yet
I know you’ve got a lot of strength left
I know you’ve got a little life in you yet
I know you’ve got a lot of strength left
I should be crying, but I just can’t let it show
I should be hoping, but I can’t stop thinking
Of all the things I should’ve said
That I never said
All the things we should’ve done
Though we never did
All the things I should’ve given
But I didn’t

But most of all, it is the tremble of fear her in voice, the sob of despair as she sings:

Oh, darling, make it go
Make it go away

For this is what we are all desperately hoping and praying for.

Please, please. Make it go away.

Hope is a thing with Protein Inhibitors

Eighteen months ago, my partner was diagnosed with a rare and incurable form of lung cancer. It is impossible to convey the number of journeys our family has had to make between fear and hope during that time. I’ve tried to capture some of the headlines in my posts before and I’ll try and summarise them here before explaining where we are now.
When we first met our Consultant Oncologist, things couldn’t have been bleaker. The nature and extent of the cancer made it inoperable, my partner had none of the bio markers that would make him eligible for some of the new immunotherapy drugs, and a needle biopsy had failed to yield enough tissue to enter the promising gene matrix trial. Our only hope was an aggressive chemotherapy regime that typically reduces the cancer in about a fifth of patients. Thankfully, my partner turned out to be one of those 20%, in fact he was a ‘super responder’, as the chemotherapy pushed the cancer right back until his scan looked almost normal. (It is very hard to write about this without using the word ‘lucky’, but as I have explained before, much of what happened to my partner was not due to ‘luck’ but the result of the skill and expertise of doctors and nurses, thanks to historic investment in the NHS and research).
That was last spring, and we celebrated by going on a family holiday to the Isle of Skye, something we had always wanted to do. Alas, within just a few months of stopping treatment, my partner grew increasingly breathless and the dreaded cough returned. On June 8th, whilst the country waited for the results of the General Election, we received the results of his CT scan which showed that the cancer had spread across both lungs. Once again, he underwent a gruelling chemotherapy regime, only this time, there was just a one in ten chance of it working. Yet again, against all odds, the cancer was pushed right back. Thanks to the NHS, my partner was able to walk and live an almost normal life once more, although this time we were much more cautious. We were warned it was probably a question of ‘when’ not ‘if’ the cancer came back, and one consultant suggested that because he had had two lines of chemo and two failed needle biopsies, there was nothing else to be done.
Despite this, my partner refused to give up hope. He asked our lead Consultant whether he could have an open lung biopsy to see if he had one of the 28 gene mutations that would make him eligible to take part in the Lung Cancer Gene Matrix trial, so that if the cancer did grow back, he would at least have some treatment options. Following consultation with colleagues, it was agreed that yes, despite the difficulties and risks involved, the expert team caring for my partner were willing to carry out an open lung biopsy. That was last November. The initial operation planned for Christmas was cancelled because of an infection, before going ahead in the New Year (when again he was admitted with another infection). Whilst we waited for the results (which we were warned would take 8-12 weeks), it became clear that the cancer was again progressing, and my partner was admitted with life-threatening infections (sepsis and severe pneumonia in both lungs), which I wrote about at the time.
Sepsis kills over 40,000 people a year, and patients like my partner admitted with severe pneumonia generally have a mortality of rate 30%, yet still he survived. And I am delighted to tell you that after all the waiting, drama and anxiety, just over three weeks ago we were finally told that yes, he does have one of the genetic mutations that make him eligible to participate in the clinical trial and that he has recently started taking the new medicine, a daily drug that in patients with particular genetic mutations, blocks and inhibits the growth of cancer cells. It is already in use for some patients with breast cancer, so this trial will assess its effectiveness for lung cancer. The doctors seem fairly confident that it will inhibit further growth, but we are also testing to what extent (if at all) it will reduce the cancer that is already there.
For us this is a real and pertinent question. Eight months have passed since his second round of chemo and five months since he agreed to an open lung biopsy, and during that (necessary) time, my partner has become dreadfully disabled. Our house and his body once again shudders with the debilitating force of his cough, and his life has been reduced to (exhausting) trips to the bathroom and an occasional foray into the garden. But as ever, we have hope. We have been here before, and he has got better before, and just writing this summary of our journey makes me realise just how amazing and resilient he is.
My partner was admitted again this week with another chest infection, where because our fabulous local hospital caught and treated it early, his breathlessness and cough are already showing signs of improvement. In fact, the day after he was discharged, he was even well enough to marry me, his partner of twenty-seven years. (Now before you ‘congratulate’ us, I have to tell you that as a feminist, I don’t agree with marriage at all, as my personal view is that it is an antiquated and patriarchal ritual based upon the transfer of property. But although I have ensured we have wills and other legal arrangements in place, I have had to accept that my partner simply isn’t well enough to even decide what to have for breakfast, let alone justify and explain our arrangements to bank managers and lawyers. So in the interests of our family, we agreed to swallow our principles and get married).
It was a very simple affair in a Registry Office with just two witnesses (my brother and his wife) who doubled up as our only guests. I expected to sulk or weep my way through it, but in the end, despite my fears it was a precious and joyous day. The tone was set by the usher who took one look at our aging faces and boring work suits and quipped, ‘I take it you’re not the bride and groom then?’ To his mortification we burst out laughing and said yes, actually, we were, and basically, we didn’t stop laughing throughout the rest of the ceremony, (where apparently, I said at least ten times to the lovely Registrar that I don’t believe in marriage). My brother and his wife spread out and filled the hundred seats with jokes, huge smiles and their memories of us when we first met twenty-seven years ago. We then met up with our two boys and had a lovely family lunch where we ate, drank and laughed some more. Against all our expectations, it was a truly authentic, joyous and loving day and even now we are still glowing with the memories that we made.
I still don’t believe in marriage, however, so please do not offer us ‘congratulations’. Our anniversary will always fall on the day that we first kissed, not the day we signed a piece of paper. I believe in the love I have for my partner, the twenty-seven years we have spent together and the many years I hope we still have before us thanks to the continued efforts of the NHS, the good wishes of friends and ‘strangers’, and the power of protein inhibitor drugs.
And if you or a loved one have cancer, then please take this post as my tossed bouquet, with all the luck, love and best wishes in the world.

 

Do You Feel Lucky?

We talk a lot about luck in our house. At first, we couldn’t believe how unlucky we were when my partner – an otherwise healthy, non-smoking man in his fifties – developed a rare form of lung cancer. Our bad luck seemed to progress with his disease, as a combination of late presentation, misdiagnoses and delays in reporting meant that by the time it was diagnosed, his lung cancer was inoperable. Things went from bad to worse as blood tests revealed my partner had none of the bio markers that would make him eligible for some of the new immunotherapy drugs, and a needle biopsy failed to yield enough tissue to allow participation in a new genetics trial.

But then our luck seemed to turn. My partner underwent chemotherapy that only had a 1/5 chance of working – and against the odds, it did. The cancer was pushed right back until his lungs – once a cloudy fog of white – now looked almost normal. Alas, the cancer grew back, and four months later we were once again staring at a scan of white lungs, cursing our bad luck. The second line chemotherapy only had a 1/10 chance of working, but my partner seized on this slender chance, and luckily, amazingly, it worked. Once more, the cancer was pushed back, and despite a few hospital admissions, my partner survived one of the most gruelling chemotherapy regimes with his health largely intact.

But we both know it could come back, so after discussing the risks with his marvellous consultant, my partner agreed to undergo an open lung biopsy at New Year to see whether he has any of the genetic markers that might make him eligible for some of the new medicines currently being trialled.

This week, our luck seemed to take a catastrophic dive when my partner was admitted to hospital with chest sepsis and pneumonia. Sepsis is the body’s overwhelming and life-threatening response to infection which can lead to tissue damage, organ failure and in 30% of cases, death. It is fast, frightening and can be fatal. 44,000 people die of Sepsis in the UK each year. After a week of excellent treatment and hospital care, my partner came home last night, and we are still processing what happened. We started to talk about how lucky we were that I hadn’t travelled to London the day he developed symptoms. If the sepsis had developed 24 hours earlier or later, I wouldn’t have been with him, and my partner (who doesn’t like to ‘make a fuss’) might not still be with us.

But as we talked with the boys about how ‘lucky’ we were, I remembered something I heard Nick Robinson the BBC presenter, say about his lung cancer. He argued that it wasn’t ‘luck’ that meant his disease was diagnosed and treated early; it was due to the professionalism of the doctors who saw and referred him. His comments made me think back to that dreadful Thursday morning when things went so very wrong so very quickly.

It was lucky that I happened to have an appointment with our GP at 7.40am with my youngest son that day, so that I could mention I was a bit worried about my partner who had wakened at 4.30am with a sudden temperature and increase in coughing. I thought she was being kind when she told the receptionists to ensure we got an appointment with a doctor before 10.00am, but now I realise that this was her professional expertise.

By 10.00am, my partners oxygen was dangerously low, his temperature, pulse, and respiratory rate sky high. The young GP – who we had never met before – wasted no time in calling an ambulance for a suspected case of sepsis. We thought it was all a bit dramatic and unnecessary – particularly when the receptionists bought in oxygen canisters for my partner. I suggested in an oh-so-British way that we should sit outside so that the GP could see other patients whilst we waited for the ambulance. I thought she was just being kind when she insisted that my partner was her priority. I realise now that she was using her professional expertise and judgement and was making sure that my partner remained safe whilst waiting for the ambulance.

We half-expected the paramedics to dismiss us when they arrived, as surely the oxygen would have made him better. But again, they used their professional judgement as they wheeled him into the ambulance, insisting on hooking him up to some fluids before we even set off for the hospital. As the brilliant paramedic chatted to my partner about football and Scotland, I thought he was just trying to take his mind of the cannula going in, but now I realise he was using his expertise to stop my partner going into shock and me going into a full-blown panic. He then rang the hospital to alert them that a suspected sepsis case was on its way.

Because of the communication between the paramedic and hospital, my partner was admitted immediately to a place I later realised was the Resuscitation Ward. Horribly pale and breathless, he was hooked up to a lot of machines that again gave scarily high readings for his heart, pulse and respiratory rate. I clung to the fact his oxygen levels seemed to be improving, not realising that this was only because he was on an epic 15 litres of oxygen. Again, my partner was attended to by amazingly calm and excellent professionals who performed a series of tests and assessments with the grace and skill of a well-practiced ballet. X-ray machines appeared at his bedside, blood was taken, symptoms measured and all of it was reported and assessed within minutes.

It was quickly established that the cause of the sepsis was not some post-operative complication from the biopsy, but severe pneumonia in both lungs. After waiting for the super-strong IV antibiotics to hit his bloodstream and some of his symptoms to stabilise, my partner was admitted to a ward, whilst the A&E staff continued to use their expertise to save other lives.

I could go on forever about the excellent care my partner received during the week he was in hospital, but my point is that although we kept saying he was lucky to be alive, none of this was about luck. The GP and Consultants who treated him were the product of investments made over fourteen years ago that allowed them to train in their profession; likewise, the skilled nurses and physios who will have begun their courses perhaps over five years ago. The fact that my partner was seen and treated for sepsis so promptly also wasn’t down to luck – it was because the hospital and community health care system had worked together to develop and implement a ‘Sepsis Pathway’ which meant that a strict and urgent protocol was followed. The fact that we left the hospital after a week of super expensive care without a penny to pay was because seventy years ago Nye Bevan had the foresight to create the NHS, and that subsequent generations have continued to support it.

We often say we are ‘lucky’ to have the NHS, but it isn’t luck. It is an active choice we make as citizens about how we structure and fund the system of care in this country and as I said to my boys, we mustn’t obscure important decisions about (lack of) investment with the language of luck.

As my partner recuperates, there will be skilled histopathologists in a laboratory somewhere, analysing the tissue from his lung. In the next few weeks they will report their findings to our Consultant Oncologist, who will use his skill and expertise to assess whether he has any of the genetic markers that might make him eligible for some of the new stratified medicines currently being trialled.

Wish us luck.

 

Breathe

 

I will be back at work tomorrow, and like everyone else, when asked how my holiday was, I will say it was lovely and quickly move the conversation on. I don’t have the time or words to explain that although it was indeed lovely, I wept my way through Christmas and held my breath through the first week of the year.
After an initial cancellation due to infection, my partner was finally admitted for a planned open lung biopsy shortly after New Year. As most of the world recovered from the seasonal pleasures of food, drink and late nights, a surgeon and his team cut out a wedge from my partner’s diseased lung. He then spent the rest of the week being cared for by an amazing team of clinicians as they made sure his lung didn’t collapse (it didn’t) or develop an infection (he did). Because of this, he stayed much longer than we’d hoped in a hospital far from home. But despite the obvious winter pressures, he received excellent care from the skilled, patient and kind people that make up the NHS and was finally discharged last night.
My partner is now on a lot of pain killers, because as the surgeon explained, the lung is not like an arm or leg that you can rest. We all need to breathe – up to twenty-two thousand times a day – so his wounded organ is constantly moving. He is tired, sore and won’t be able to lift a kettle let alone drive for several weeks, and yet, we are happy.
Because once again, we have hope.
The lung biopsy was not a diagnostic or curative procedure. We know that he has inoperable lung cancer and that although two lines of chemotherapy have temporarily (and amazingly) pushed it back, the list of options gets smaller each time the cancer grows. We are hoping that his wedge of lung tissue will provide enough information to participate in the National Lung Matrix Trial, which is looking at new drugs depending upon the changes to genes in cancer cells. The aim is to match treatments to particular genetic changes, a much more personalised and targeted approach known as stratified medicine, rather than the rather blunt hit-and-miss approach of chemotherapy.
All the risks were explained to my partner, but he readily agreed to the open lung biopsy, because for us it is an act of hope. And I am not going to lie: there is a perverse kind of comfort in having a wound to look after, medicines to administer, a regime to follow – something to do. The alternative is to passively wait and worry about the cancer growing back, hyper-alert to the coughs that echo throughout the house, wondering whether an increase in breathlessness is due to the cancer or a common cold.
Of course, the cruel thing about hope is that it can so easily be dashed. There is no guarantee that the biopsy will yield sufficient amounts of tissue (two needle biopsies have so far failed) and he may not have the ‘right’ genetic changes that will make him eligible for some of the new drugs on trial. But by participating in research, we know that even if he cannot personally benefit from the genetic knowledge his tissue provides, someone, somewhere might.
Our lungs are an amazing feat of biological engineering, drawing oxygen into our bodies and dispersing carbon dioxide into the world. With over six hundred million alveoli, if they were stretched out flat they would be the size of a tennis court. The biology text books will tell you that it is your diaphragm and rib cage that makes you breathe in and out.
But I am learning that those twenty-two thousand breaths a day are much easier to take if you have hope.

The next ‘big thing’ in books? Love, actually.

In recent weeks, our two sons have asked me what we would do in the event of a nuclear strike. We don’t have a cellar, so where would we go? Should we build a shelter? Clear out a cupboard? Their earnest questions brought home to me just how unstable our world feels right now and reminded me of how different my own teenage years were to theirs.

Back in the eighties we had the Cold War, the Falklands War, the threat of a Nuclear War and the actual fall out from Chernobyl. I assumed responsibility for studying the various pamphlets and articles on What To Do In The Event of a Nuclear Strike, choosing the cupboard under the stairs as our designated shelter (although my mum refused to paint the door white). I regularly stored water in pots and pans around the house and kept supplies of tinned food under review. I even had the foresight to purchase kelp tablets from Holland and Barratt for protection against radiation sickness (although sadly I was on a school trip to Wales when the Chernobyl fallout actually happened, sans kelp tablets). Some might have thought me an anxious child, but I was just WELL PREPARED. And if my brothers and parents mocked me, well they would be thanking me on their knees once disaster struck. (In fact, if disaster ever struck, we would all be on our knees, as the cupboard under the stairs was really quite small).

In what would become a life-long trait, I coped with the apparent threat of destruction by trying to control my immediate environment. But also, I read. Not just survival books (although the SAS Handbook was a firm favourite) but fiction: huge, sweeping family sagas that told inter-generational stories of love and loss against the back drop of war and disaster. Until recently, I thought it was just me. YA didn’t exist as a genre back then and I borrowed a lot of books from my mum and nan. But looking back at the charts from the eighties, it seems I was part of a bigger trend. Alongside horror (Stephen King) and spy novels (John Le Carre), the eighties charts were dominated by the likes of Danielle Steel, Barbara Taylor Bradford and Collen McCullogh. On Sunday nights (when I wasn’t collecting supplies for the shelter) our family would gather around the only screen in the house to watch The Thorn Birds, A Woman of Substance, Roots and Shogun: love stories, family sagas, call them what you will; huge, epic dramas with people at their heart. However, somewhere along the line, these books were dismissed as ‘women’s fiction’ or ‘romance’ and I’m sorry to say that I followed the implicit snobbery and sexism inherent in these views and dropped them like an embarrassing friend.

I was reminded of my love for this genre when I read Letters to the Lost by Iona Grey and more recently, Island in the East by Jenny Ashcroft, both moving love stories set against the back drop of war. I devoured both books as they filled a need in me that most crime and thrillers just cannot reach (although the very best thrillers such as Rattle by Fiona Cummins are ultimately about love). There is a lot of talk in the industry about ‘the next big thing’ and although I think there is no one answer, I suspect that as in the eighties, we may be about to see a resurgence in epic love stories and family sagas. Now as then, the world feels unstable, led by almost cartoon-like bad guys with the power to plunge us into war. At times like this, I feel an urge to read sagas not as a form of escapism, but as a reminder that people can and do survive terrible things, particularly the women. Decades later, I still recall the quiet strength and suffering of Fee Cleary, the fierce drive and determination of Emma Hart.

These books are not just ‘uplifting’, they are stories of hope, strength, rebellion and resilience. They are the stories of our mothers and grandmothers; they are the stories I believe we need now.

So when I build my nuclear fallout shelter, I will ensure we have a good supply of epic love stories and family sagas, alongside the water and kelp tablets. For as Larkin once wrote, in the end, ‘what will survive of us is love’.

 

 

Dear Doctor

Dear Doctor

I cannot imagine anything worse than being an Oncologist. All that bad news to break, bearing witness to such heartache whilst knowing that the medicine you give to heal can often do such harm and sometimes will not work at all. And it must be so hard to keep up: there are more and more patients coming through the door with a complex set of conditions; immunotherapy and genomics are transforming our understanding of the disease and everyday it seems there is a new research paper that you simply must read, (once you have finished reading the latest national guidance on what you are and are not allowed to prescribe). And in the midst of this whirlwind of knowledge, there are raw-faced patients and families queuing up outside your door waiting for you to tell them what is going to happen next. On every level – emotional, scientific, managerially – your job seems impossibly complex.

Except it’s not. Dear doctor, I want you to take a step back and remember that despite all the noise and activity that surrounds you, at its heart, your job is actually very, very simple. Your job is to make patients feel better. I don’t mean this in the curative sense. Going back to the roots of the word ‘disease’, it comes from old French and then Middle English and means ‘lack of ease’. When we sit in your room, yes we want ‘the results’ of that scan, those blood tests, but that is really a means to an end. Whatever that scan says, we want you to relieve our anxiety and dis-ease. In these dark days, we want you – we need you – to make us feel better.

I am writing this because my partner is fortunate enough to be cared for by an excellent team at a leading teaching hospital. There is no doubting their intellectual abilities or devotion to their patients. However, within a team there are different personalities and it is clear that some doctors seem to think it is their duty to tell us just how bad things are and how awful they are about to get. Perhaps twenty years ago, this would have been a terrible but necessary burden for the doctor alone to carry. But in 2017 we have the internet, so believe me, we know exactly how bad things are. The statistics could not be more bleak and there is no room for ambiguity or denial. What we need is for you to make us feel better, despite everything that is going on.

Every consultation with you is dissected and discussed: did you notice how he never smiled, the way he looked at you, not me? The Macmillan nurse was there (a bad sign) and he didn’t show us the scan (even worse). Everything is taken apart and discussed, weighing your words and the heavier silences between them, over and over again. Therefore, dear doctor, I am not asking you to ‘improve your communication skills’, but to be sensitive to what you are transmitting. Like a super hero, your every move is so powerful to us mere mortals.

This might sound like yet another complex request on your time but again, it is actually very simple. Before you call us into your room, ask yourself what is the key message that you want us to take home? Above all, how do you want to make us feel? Once you have decided that, be careful not to bury any positive messages in the debris of caveats and statistical probabilities. We can get that from the internet. What we want from you – the flesh and blood doctor – is a flesh and blood human being. What we need from you is to help us feel better. There is no such thing as ‘false hope’. Hope is a speculation on the future, just as misery is. But the anticipation of loss, of grief and pain has absolutely no value or purpose other than detracting from the life we have left to live.

So in conclusion, dear doctor, my key message that I want you to take home today is that it takes fourteen years to train as a consultant; a life time to develop into a fully-fledged human being and sometimes, just ten minutes to break our hearts.