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.

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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.

Choose Hope

Three weeks ago, a well-meaning consultant gently asked my partner whether he was sure he wanted to continue with second line chemotherapy. Had he considered ‘going down the palliative care route’? It was, on paper, a reasonable question to ask. My partner had inoperable lung cancer, and despite a rare and surprising response to initial chemotherapy, it had returned with an alarming speed and aggression. He recently started second line chemotherapy, but after just one cycle, he was admitted for five days with a serious chest infection. The doctor we saw that day (not our lead consultant) explained that the risks of further chemotherapy might outweigh any benefits, as Docetaxel is very toxic yet only works in about 8-9% of cases.

We were shocked and upset to be having this discussion. We went round in circles, trying to untangle the cause and effects of cancer, chemotherapy and the chest infection, politely fighting against the undertow of the conversation. My partner is only 57, we have two young boys and so in the end he said that whilst he understood the risks, he also understood that no chemotherapy meant the cancer would definitely progress, whilst further treatment meant that it might not. For him it was a simple decision. He chose hope.

Just three weeks later, we sat with our lead consultant whilst he showed us the results of my partner’s CT scan. Once again, against all odds, the chemotherapy has had a significant and visible impact on my partner’s cancer. We stared at the (mostly) dark and clear spaces in the lungs where just four weeks earlier it had been a fog of white, unable to believe how lucky we were – again. I wrote before about how my partner had proved to be a ‘super responder’ to chemotherapy. https://johoganwrites.wordpress.com/2017/01/22/the-quantification-of-hope

Tonight we are shaky with relief and joy, unable to process the impossible statistics and the near-miss consequences of not going ahead with this second line chemotherapy whilst carefully sipping the hope that this gives us. There are so many emotions. When our consultant showed us the scan, he leaned back in his chair and said, ‘to put it in perspective, you are the best news I will get to give all day.’ So our happiness is tempered by the knowledge that most of the people we sat beside in the waiting room will not have had our good fortune.

When we left the hospital three weeks ago, stunned and tearful, we bumped into an old friend I used to work with who was also suffering with late stage cancer. Despite being very sick herself, she and her lovely partner took the time to give us words of hope and encouragement and later sent us a video telling her story. When a doctor tried to tell her ‘how long she had left’, Jackie – a life-long campaigner for equality and the BME voice – held up her hand and silenced him. ‘It is not your prerogative,’ she said. It is a cliché and perhaps a burden to call someone ‘an inspiration’ but @jackielynton truly is and I urge you to follow and support this woman on her journey of hope.

I do not blame the doctors for sharing their frank opinions. Goodness only knows how they cope with seeing people like us day after day, how they sift facts from hunches and decide what to say and not say. My partner was given a choice and he chose hope. That choice will cost the NHS at least £39,000 and once again it will give us the priceless gift of more time. And for that we are profoundly, eternally thankful.