The ‘cleavage sparing mastectomy’ that may have cost my mum her life.

 

Like everybody else, I was winding down on Friday and looking forward to a long Bank holiday weekend. I had prosecco in the fridge, plans to clean out the patio and maybe buy a new garden bench. But then the 5pm news came on. The lead story was that a surgeon called Mr. Paterson had been convicted of intentional harm.

And I was back in the hospice with my mum as she fought to take her last breath.

I have thought long and hard before writing this post. I cannot change what happened and I have no wish to be part of any media circus or witch hunt. But I do want people to learn lessons. And I want my mum’s death to matter.

My mum was first diagnosed with breast cancer early in 2006. We had a four-year-old son and a new-born baby, so she was staying over to babysit. Once the boys were in bed, she sat on our settee and told us about the lump she had found, and that the tests had shown it was cancer. I was shocked, she was scared and I promised to attend every single appointment with her.

The papers talk about how charismatic Mr. Paterson was. That was not my experience. When we met him – just the once – he seemed brusque and arrogant. He said my mum had a fast growing tumour in her breast and needed a mastectomy. I remember he spoke about the possibility of reconstructive surgery and my mum dismissing the very thought. She was 61. She had always been (in her own words) ‘flat chested’. She didn’t care about cosmetics, she just wanted the cancer gone.

Unfortunately for my mum, contrary to existing guidelines, Mr. Paterson carried out ‘cleavage sparing’ surgery. In effect, this meant that instead of a total mastectomy, some flesh was left behind in order to facilitate potential reconstructive breast surgery (which according to some reports, he potentially benefited from in his private practice). The pros and cons of this non-standard procedure were never explained or discussed. My mum was eager for the operation to commence and so consent forms were signed. She was, as Sir Ian Kennedy so astutely noted in his report, ‘consented’; she did not give consent.

My mum had the mastectomy and then went through the ordeal of chemotherapy and radiotherapy. I won’t go into the gory details. If you or a loved one have been there, then you will know what this means. If you haven’t, then I hope you never will. After that, it was an anxious vigil for us all as we waited for each scan, counting down the days for the five year ‘all clear’ milestone. My mum’s hair grew back, thicker and darker than before. She put on weight. She thrived. She was nearly there. In the spring of 2011, she had her five-year check up – with Mr. Paterson as it happens – and she was signed off. Five years, cancer free. My mum was so relieved. I remember that we went for a celebratory lunch and that she played Frisbee with her grandchildren in the garden.

But in the summer of that year, my mum was recalled by the hospital and told that the operation she’d had in 2006 had not been a full mastectomy and that she would need further surgery to remove potentially cancerous flesh. (It later turned out that my mum should have been recalled in 2009, but there had been an error and my mum was somehow missed off). Sometime after that operation, she visited the hospital for a check up where she complained of tiredness and pain. An alert doctor ran more tests and she was eventually diagnosed with bone cancer, secondary to breast cancer.

My mum then went through another round of chemotherapy, but as she said herself, this time her body was too weak to take it. It sapped her energy and confidence until she could no longer leave the house unless in a wheelchair equipped with oxygen tanks. Even writing this, all the memories I have blanked out – the sound of the oxygen tank in her bedroom, the tubes in her nose, the morphine by her bedside – it all comes flooding back.

I have read some but not all of the newspaper reports this weekend – even four years later, it is still too raw – but I am shocked at the sheer scale of the damage and hurt that Mr. Paterson has caused. He removed lumps and breasts when there was no clinical need. My heart goes out to those women and their families who went through unnecessary physical and mental trauma and I do not pretend to understand what they are going through.

I cannot speak for anyone else, but personally I do not feel any satisfaction or pleasure that Mr. Paterson is going to jail. As his colleague Dr. Budhoo said, I doubt if he accepts or understands what he has done wrong. For me, the big question is not what was wrong with Mr. Paterson, but what was wrong with the culture and practices at the Trust? Why did no one else stop him from practicing surgery that was so clearly outside of all guidelines? Why, when questions were finally raised (as early as 2003) was prompt action not taken to stop him from harming patients, and why, when he was under an active investigation and clearly conflicted, was he allowed to see my mum and sign her off? Some of these questions are answered in the excellent review carried out by Sir Ian Kennedy who wrote:

This is a tragic story. It is not a story about the whole of the NHS. It is about something that happened in one corner of one hospital Trust in one part of the NHS. But, it has lessons for the whole of the NHS. It is a story of women faced with a life threatening disease who have been harmed. It is a story of clinicians at their wits’ ends trying for years to get the Trust to address what was going on. It is a story of clinicians going along with what they knew to be poor performance. It is a story of weak and indecisive leadership from senior managers. It is a story of secrecy and containment. It is a story of a Board which did not carry out its responsibilities. It is a story of a surgeon who chose on occasions to operate on  women in a way unrecognised by his peers and thereby exposed them to harm.

It was also my mum’s story. My mum died in August 2013. She was just 68 years old and left behind a heart broken widow, three children and three young grandchildren. There was a hurried out of court settlement with the NHS Trust before she died based upon a clinical assessment of her case. Whilst it was accepted that having a ‘cleavage sparing mastectomy’ had increased her risk of cancer returning, it could not be proven beyond doubt that it had caused her secondary bone cancer. Her lawyers said that she could challenge this but my mum chose to accept the judgement. Partly because she didn’t have long left and wanted her affairs to be in order before she passed away, but mostly because she took some comfort from the clinical report into her case. My mum did not want to die and it would have caused her unspeakable agony to know that her death was both unnecessary and avoidable.

Like everyone else who has ever been affected by a clinical or managerial error, my mum’s main aim in persuing a court action was not to receive an apology or money, but to ensure that this could never happen again to anyone else. The best legacy for my mum and the other patients and relatives affected by Mr. Paterson would be for everyone in the NHS to read Sir Ian Kennedy’s review. http://www.heartofengland.nhs.uk/wp-content/uploads/Kennedy-Report-Final.pdf

The lessons it sets out are very simple: always put the patient and their needs first. If you have concerns about a colleague, raise them and do not stop until they are addressed.

In short, always do the right thing.

A Note to Myself (on my partner’s cancer)

A Note to Myself on my Partner’s Cancer

Five months ago, my partner was diagnosed with lung cancer. Words cannot capture the devastation of that day but I tried to explain some of the impact here https://johoganwrites.wordpress.com/2016/10/08/the-cough/.

Looking back, perhaps we shouldn’t have been so surprised. By the time we ourselves had taken it seriously enough to go to the doctors and progressed beyond the misdiagnoses, the scans and the biopsy, my partner could not even get dressed without being reduced to a coughing, breathless wreck. We were warned that cancer was an (unlikely) possibility but we weren’t prepared to hear that it was advanced and inoperable; that chemotherapy might help reduce the symptoms but could not provide a cure.

We clung to the hope that my partner would have a biomarker that would make him eligible for some of the new gene therapies that are now transforming the treatment of lung cancer.

He didn’t.

Our indefatigable consultant told us to ignore the fancy new drugs, disregard the statistics and focus instead on my partner’s individual case. I wrote about this here https://johoganwrites.wordpress.com/2017/01/22/the-quantification-of-hope. But basically for those who don’t have the biomarkers, up to 25% of lung cancer patients can have a good response to traditional chemotherapy. My partner was therefore prescribed four courses of combined chemotherapy to push the cancer back as much as possible, to be followed by ‘maintenance’ chemotherapy indefinitely.

Every three weeks, my partner spent nine hours on an NHS ward receiving a combination of Cisplatin and Pemetrexed and an unquantifiable amount of care and skill from the doctors, nurses and fellow patients. Every third Monday night, we would go home with a shopping bag full of medicines to counter the sickness, indigestion, skin rashes, nerve damage and other side effects of chemotherapy, although nothing could take away the crippling tiredness and the indescribable grottiness. At the end of the prescribed four cycles, the cancer that had crawled all over his lungs like ivy had been pushed right back. In fact, the cancer had responded so well to the chemotherapy, that our consultant suggested that instead of the four cycles normally prescribed in Europe, we should try six, in line with a recent Korean study.

We did and last week the results of the latest scan continued to show improvement, so much so that we agreed to take another gamble. Instead of receiving ‘maintenance’ chemotherapy in an attempt to stop it growing back (as usually happens after four cycles of the combined therapy) we would try a policy of ‘watch and wait’. This means my partner will have a scan every six weeks, with chemotherapy only if the cancer grows back in a clinically significant way.

The usual adjectives – happy, relieved, thankful? – are suddenly too weak and one-dimensional. My partner has a rare form of lung cancer that cannot be cured. It has retreated and our objective is to hold it at bay for as long as we can until further medical reinforcements arrive. He is so very happy to be free from chemotherapy but we both know that every cough, every moment of breathlessness will cause huge anxiety in the build up to each scan.

I am writing this on a Monday night when ordinarily I would be typing up the drug chart for the week whilst my partner sleeps off the first day of chemotherapy. It is extraordinary to us both that we can now put away the shopping bag full of medicines and focus on building up his strength and stamina as spring approaches. But although we are both desperate for normality, I am wary of letting this moment go; of allowing the miraculous discoveries about ourselves and others to be lost in the clamour of the everyday. So lest I forget, I am writing myself a note of some of the things I have learnt or remembered during the past five months.

Note to self:

Hope is what kept you both going. You pride yourself on being a skilled reader, researcher and analyser of facts. Yet following the diagnosis, you could not bear to read the internet. The evidence was too bleak, the facts too grim. What mattered most to both of you during those first dark days was hope. You were desperate to hear about people who had been given months to live but were still living five years later; of people with tumours that mysteriously disappeared. You clung to stories, words, facial expressions – anything with a hint of hope – because the alternative was simply unthinkable. Despite boasting – yes boasting – for years of your atheism, you found yourself praying for a miracle as you rubbed your partner’s back every night, visualising yourself wiping away his cancer. Remember this with humility and do not retreat into intellectual arrogance. Belief is a journey and you are still travelling. You would have inhaled a post like this back in those dark October days, so no matter how awkward this is, keep sharing. Other people need hope too.

Love is all that matters. As your partner heals, he is unlikely to become a born again DIY expert. He will probably still throw water around the kitchen when he washes up and – inexplicably – believe that Bob Dylan can sing. But this dreadful episode in your life reminded you of how much you loved him. When presented with that terrible diagnosis, his concern was for others, not himself, demonstrating all the gentleness and quiet compassion that first drew you to him. Truly, he is your better half.

People are so very kind. You knew this but you were blown away by the extraordinary compassion shown not just by family and friends but ‘strangers’: people from twitter who sent us personal messages of support and as you wrote about here, extraordinary, precious gifts. https://johoganwrites.wordpress.com/2016/12/04/somewhat-bigger-than-a-christmas-card

It truly made a difference, giving us energy, hope and warmth when we needed it most. When you are once again consumed by the negativity of news and the minor irritations of work, do not forget that people are essentially good. In fact, do not let yourself be consumed by work again. Your boys need you more than your office does (see above re love is all that matters).

There is a lot of loneliness out there. Do not forget that the world you inhabited and the future you feared is still there for many, many people. Remember how the high street filled with a silent army of people like you after lunch and before the school rush, frail, widowed and bereaved people wandering around Boots seeking compassion and conversation. How you wept silently in the aisles of Waitrose as you stared at all the lovely food he could no longer eat. https://johoganwrites.wordpress.com/2016/10/15/firsts-and-lasts

Never forget that every day in every supermarket, probably somewhere between the crisps and the biscuits, someone’s heart will be breaking. Reach out to these people. And remember that single parents are superheroes. When it was just you working full time and doing all the cooking, cleaning, caring and waiting for the dryer to finish at 1am, remember that single parents do this Every. Single. Day. They don’t get a fraction of the sympathy and support you were offered, so when you are able to, be the person who makes that offer.

Be thankful. As one of my partner’s favourite song says, just be thankful for you’ve got. We may not have a Cadillac but we do have the gift of more time together. I am not sure who or what we should be thankful to for this precious gift. When we were told the results of the scan, I said it was thanks to the NHS and our wonderful consultant. My devout 16-year-old said it was thanks to God. My partner said it was thanks to the blanket someone had so lovingly knitted for us. Either way, do not allow this state of thankfulness to be lost in the minutiae of everyday life. Feel it, say it and most of all, show it.

My love is this fear. You are in a better place now than ever seemed possible five months ago but the future is shadowed with anxiety and fear. Every cough will stop your heart. You will monitor his breathing, watch his appetite and measure his weight in an eternal vigilance against illness. To love someone is to live in a constant state of fear. But you knew this. Colours by Yvetushenko became ‘our’ poem when your partner copied it out onto a brown paper bag and stuck it to your student wall twenty-six years ago. You were and are love’s slipshod watchman.

But enjoy the colours whilst they last.

 

When your face

appeared over my crumpled life

at first I understood

only the poverty of what I have.

Then its particular light

on woods, on rivers, on the sea

became my beginning in the coloured world

in which I had not yet had my beginning.

I am so frightened, I am so frightened,

of the unexpected sunrise finishing,

of revelations

and tears and the excitement finishing.

I don’t fight it, my love is this fear,

I nourish it who can nourish nothing,

love’s shipshod watchman.

Fear hems me in.

I am conscious that these minutes are short

and the colours in my eyes will vanish

when your face sets.

 

Yevgeny Yevtushenko

 

The Carnegie Medal: time for a review

For over 80 years, the Carnegie Medal has been one of the most respected and coveted awards, recognising authors such as Arthur Ransome, C.S. Lewis, Neil Gaiman, Terry Pratchett, Phillip Pullman and Sally Gardner. Yet the publication of the 2016 longlist last week was met with bafflement and outrage. Out of twenty longlisted authors, not one was from a BAME background.

Not one.

According to the Writers and Artists Year book, there are over 10,000 children’s and young adult titles published each year. I have been unable to find a figure for how many of these are written by BAME authors (which is a story in itself) but the consensus is Not Very Many. Even so, 2016 was a strong year, with books that have met with critical and popular acclaim including Orange Boy by Patricia Lawrence, Crongton Knights by Alex Wheatle, The Girl of Ink and Stars by Karen Millwood Hargreave and Where Monsters Lie by Polly Ho Yen.

So what happened?

I was not on the panel but can only imagine three possible scenarios to explain how the all-white 2016 longlist was published last week:

Scenario one: The CILIP Judging Panel received the nominations from the Youth Librarians, collated them, considered and debated them individually and in the round and reflected that despite the clear absence of any BAME authors, this list of twenty books truly represented the very best of children’s literature in 2016.

Scenario two: The CILIP Judging Panel received the nominations from the Youth Librarians, collated them, considered and debated them individually and in the round and observed that there were no BAME authors on the list. Perhaps some expressed concern. But after some debate it was decided that the despite the poor press this would likely generate, such issues were not relevant and the panel should therefore stand by the nominations and consequent longlist, which they believed truly represented the very best of children’s literature in 2016.

Scenario three: The CILIP Judging Panel received the nominations from the Youth Librarians, collated them, considered and debated them individually – but not in the round. Perhaps the panel were too busy arguing over the merits of individual books that they did not have time to step back and look at the entire list. Perhaps they did not consider this to be their role. For whatever reason, in this scenario, the panel simply did not notice that the longlist only included white authors.

We will probably never know how the longlist was reached. But we do know the reaction it provoked, as industry, authors and readers expressed their bafflement and outrage. At this point, the CILIP had two choices: it could have listened to the concerns expressed and reflected on both the perception and reality of its longlisting and announced a review and a commitment to do better.

Sadly – and inexplicably – it launched into a defence of its own processes, saying, ‘Whilst we acknowledge and respect the concerns expressed, the longlisted books were judged on merit and on an equal playing field.’ Others more qualified than I have pointed out that we live in a society where the playing field is anything but level. More worrying was the comment by the CEO of CILIP who explained that the longlist reflected the opinion of the judges ‘with no consideration of gender or ethnicity of writers, illustrators or audience.’

This, I believe, displays a fundamental misunderstanding of our society, the role of books within them and the ability (and responsibility) of decision makers in the publishing world to influence matters for good or ill. If we lived in a world where there was no racism and where the 14% English BAME population was reflected in the Board rooms of our public and private sectors, then maybe CILIP could defend a ‘blind’ judgement process. If we had anything like 14% of the 10,000 books published each year being written by BAME authors and if there had been a single BAME winner of the Carnegie Medal for the past eighty years, then perhaps CILIP could defend a blind judgment process. If children and young adults from the 14% of our non-white population felt confident and happy that they and their stories are reflected and valued in literature, that they do not feel their experience is at best ignored and at worst dismissed, then perhaps CILIP could defend a blind judgment process.

If we could put our hands on our hearts and say that books do not influence ideas and that ideas do not shape actions then perhaps we could pretend that none of this mattered. But none of the above is true. A ‘blind’ judgement process is based upon a misunderstanding of our current society and an abdication of our collective responsibility within it. Any judging panel that confers greatness on a cultural product has a duty to consider the signals it is sending and the culture it is creating through the judgements that it makes.

So what is to be done?

Firstly, it is important not to blame anyone. Blame creates fear and fear is the biggest obstacle to change. The ethical principles of the librarians and judges are not under question here, nor should we challenge the merit of the marvellous authors who have been longlisted. But we do need to ask how can we do better? What processes can we put in place to support better judgements about the best of children’s literature in 2017? What can we learn from other book awards, other industries? Following the uproar after the 2016 Oscars where there were no BAME nominees, they reviewed and changed their membership. This year seven out of the twenty nominees for acting are from a non-white background.

The Carnegie Medal was established in 1936 in memory of the nineteenth century philanthropist, Andrew Carnegie. His experience of using a library as a child led him to resolve that “if ever wealth came to me that it should be used to establish free libraries.” He was an immigrant from Scotland to America who was a member of the American Anti-Imperalist League, promoted independence for the colonies and supported black businesses. I find it hard to imagine such a man clinging to the past or defending the current processes in the award scheme that bears his name.

Award schemes are, by their nature subjective but it is perfectly possible to improve them. But only if we accept that there is a problem and challenge ourselves and each other to do better. I am not a published author. I am not a BAME writer. But this issue has disturbed me enough to wake me up at 5.30am to write this.

I hope that the CILIP will reflect on and listen to the debate that has raged over the past few days. I urge them to welcome the conversation and lead the way through this difficult territory by announcing a review so that in 2017 we can embrace a longlist that truly reflects the best children’s books published in English.

The Quantification of Hope

This week as the world prepared for the inauguration of a new President, we prepared ourselves for something much more personal: the results of my partner’s scan.

When I say prepared, I mean braced, tensed, clenched: every clichéd adjective you would edit out of your own MS my partner and I felt. By the end of the week, my body was a tight cage of fear with what some cancer patients call ‘scanxiety’. After four cycles of hard-hitting chemotherapy that has wiped my partner out, we would finally find out what impact it had had on the actual disease itself. We parked the car outside the cancer centre, just two hundred yards and twelve years away from the maternity unit where our youngest son was born. We dreaded hearing the words ‘spread,’ we hoped we would hear the word ‘stabilised,’ and we dreamt of the word ‘shrunk’.

When we first met our Consultant Oncologist, this maverick genius looked not at my partner’s notes but at our faces. He saw that having being told he had advanced and inoperable lung cancer had knocked us both to the floor, so our consultant set about injecting us with hope.

‘Everyone asks how long have I got, or what are the odds on the treatment working,’ he said. ‘The truth is all we have are median statistics and they are meaningless to the forty nine people before the median number and the forty nine after. Each statistic is only helpful to the fiftieth person on that range. So ignore the numbers. What matters is how you as an individual respond to your treatment.’

At the time, I thought he was just being kind because the statistics were so very, very, bad. Now, however, I realise just how wise he was. Statistically speaking, we shouldn’t even have been in his consulting room. Lung cancer is the second most common cancer but only 10-15%  occurs in non-smokers like my partner. Non-smokers typically have gene mutations or biomarkers that would make them eligible for some of the new and very effective immunotherapy drugs that are increasingly available, except he didn’t. My partner has an unusual sub-type that accounts for 2 – 5% of all lung cancers. Most people with this kind of cancer have the slow, indolent kind. My partner’s cancer was advancing terrifyingly fast and in a matter of weeks, had been reduced to a state where he could barely get dressed. The one statistic our consultant did give us was that for those who don’t have the biomarkers for immunotherapy, about a third respond well to the standard combination chemotherapy. I have since learnt that this figure is closer to twenty-five per cent. So statistically speaking, we didn’t have much hope.

Yet against all odds, the scan showed improvement. Extraordinary improvement. The disease that had crawled all over his lungs has been pushed right back to the extent that his lungs might even be considered close to normal. Even more extraordinary is the fact that the chemotherapy still appears to be working. Most statistical graphs will show a reduction in cancer after two cycles, plateauing out by cycle three and four. But in my partner’s case, there is a visible improvement between the second and fourth cycle scans. So although the studies and statistics suggest patients should have only four cycles of this combination chemotherapy, we agreed that in my partner’s case, it made sense to ‘go for it’ and have two more cycles – six in total.

So the day we had both feared turned into one of euphoria and relief. However we are not quite cracking open the champagne yet. My partner has a worryingly low white cell count. This weekend we are checking his temperature every two hours as with a greatly reduced immune system, he is at risk of dying from a simple infection such as a cold. This condition also makes him feel totally wiped out, so although mentally he knows the cancer is getting better, it doesn’t quite equate with how his body feels. Emotionally, he is still reeling from discovering that at the point of diagnosis, the consultant thought he was just a month away from being untreatable. And there are, of course, two more cycles of heavy duty chemotherapy to get through followed by another scan with all the consequent anxiety that that will bring.

Last week, there was a very moving article in the New York Times by a young man with stomach cancer. He too had initially tried to cope by breaking his diagnosis down into statistics. But as his consultant explained, if you survive, you’ll survive 100%. No one survives 9 per cent. No one is 9 per cent dead. The numbers that matter are 0 and 100: dead or alive.

I would add to this that actually numbers don’t really matter at all. Against the odds, my partner developed lung cancer. Against another set of odds, the standard chemotherapy appears to be working.

We are so very thankful to the NHS team who quite literally saved my partner’s life and for the kindness, thoughts and prayers of friends (both virtual and ‘real’) who together created a sea of sympathy that helped raise our boat when for a moment it looked like we were sinking.

We are not out of the woods yet. But we have emerged from the dark, dread centre to the outer fringes. Here there is light.

Here there is hope.

RATTLE by Fiona Cummins. A review.

I am not a big consumer of crime novels and I actively avoid reading horror (life is scary enough without a terrifying top up thank you very much). Yet I read RATTLE within twenty-four hours and one month later, I am still thinking about it. You will hear a lot more about this stunning debut from Fiona Cummins both before and after it is published on January 26th 2016. Val McDermid has called it ‘Harrowing and horrifying, head and shoulders above the competition’, and it is being marketed as a frightening thriller for fans of Silence of the Lambs. All of this is true but if like me crime or horror is not your thing, I want to explain why you absolutely should read this book.

As with all great novels, I knew from the first line and first page that I was in the hands of a great writer.

If Erdman Frith had chosen pizza instead of roast beef, his son might have been spared.

If Jakey Frith had been a little more ordinary, the bogeyman that stalked the shadows of his life would have been nothing more than a childhood memory, to be dusted off and laughed at on occasions.

If Clara Foyle’s parents had been a little less self-absorbed and a little more focussed on their five-year-old-daughter, her disappearance might never have happened at all.

As for Detective Sergeant Etta Fitzroy, if she hadn’t been haunted by thoughts of what might have been, both children would have tumbled from the blaze of newspaper headlines into the darkest reaches of infamy.

But none of them suspected anything of this on that wet November afternoon, just hours before their lives collided and cracked open to reveal the truth of them all.

 

I have quoted this page in full because this illustrates not just the skill of Fiona Cummins but because it introduces the cast list and tells the story in miniature. As the Bone Collector moves amongst them, the lives of these very different characters fall open to our gaze. One of the most powerful aspects of this novel for me was just how effectively Fiona Cummins explores the impact of a sudden crisis on relationships. In some superficially strong families, fear and grief give birth to blame and suspicion, whereas in others, relationships are re-forged as parents are reunited around the shared love of their child. I particularly adored the character of Erdman Frith, who begins as a rather lack-lustre, failing husband but grows rather than sinks under the weight of what he and his family has to bear.

But it is the children that will tear at your heart and keep you turning the pages, desperately praying that they will be saved. I don’t think I have ever felt as tense whilst reading a book as I did with RATTLE. I think this is because Fiona Cummins is not afraid to go where even our darkest imaginations fear to tread. The majority of us pull back from the things that frighten us most but sometimes a lone, brave writer forges ahead, forcing us to look into the darkest corners of our world.

And when we look into the darkness, sometimes we find not just spiders, cobwebs and shifting shadows but real, solid evil. With the Bone Collector, Fiona Cummins has crafted a character as terrifying, iconic and enduring as the Child Catcher from Chitty Chitty Bang Bang. He is, as his name suggests, a collector of bones – and like all collectors, he is always looking out for rare examples to add to his collection. His work is described to us in unflinching, forensic detail and the author has a gift for conveying the particular stench of his gruesome hobby: the bones, the chemicals, the undernotes of decay. Even now, a month after reading, I can still smell this book.

But this is not just a book about bones and fear. It is about the flesh that holds our bones together and the love and hope that connects us. It reminds us that love is fear: if you love someone, your greatest fear is that you will lose them. I think that is why I found RATTLE so unsettling – in fact it would be fair to say that it rattled me. It is also why a month later I am still thinking about this book and why I fully expect it to be one of the biggest hits of 2017.

 

Thanks to Francesa Pearce at Macmillan for a free copy of RATTLE in response to some discreet pleading on twitter.

Somewhat bigger than a Christmas card

When people find out about my partner’s diagnosis, after the initial shock and condolences, they usually end a difficult conversation by saying ‘let me know if there is anything I can do to help’. In those first few shell-shocked weeks, all we could was thank people for their offer and say no. Because unless someone happened to have a cure for lung cancer in their back pocket, what could anyone actually do? I was also determined to keep things as normal as possible for our two boys, so I asked friends and colleagues to respect a rule of no cards or gifts. If our house suddenly turned into a florists, (as it was in danger of doing) it would only confuse and alarm my children.

So when a woman on twitter DM’d me for my address I very gently gave them my stock reply. Thanks but no thanks, we are trying to keep things normal for the boys, so no gifts please. Mortified that she had offended me, she explained,

I have made you something out of wool that is somewhat bigger than a Christmas card. It will always be for you (because that’s the way that making something for someone works), but I shall happily keep it safe for a different time.

Worried that I might have upset someone I’d never met and who was only trying to be nice, I made an exception and sent her my address. After all, whatever ‘it’ was, it was made of wool, so the boys would probably never notice.

Then last week a parcel arrived. We have lots of parcels arriving these days: new curtains and cushions and tables and chairs as I desperately try to improve the domestic space in which we are increasingly confined. But this one was different. It had a handwritten label for a start. And when I opened the box, I pulled out the most exquisite gift I have ever seen or held. My partner gasped. What is that?

Something more than a Christmas card…

It was a blanket. A blanket of soft, rich wool, crocheted into squares of gold, green, cream and brown, patterned with flowers and bordered with grey. We opened it between us like a book, marvelling at the weight and width of it. We turned it over, clasped it to our bodies, inhaling the scent and texture of it, wondering at the time and skill that went into its creation.

My partner was overwhelmed and could not believe that I had never met the woman who had made it for us. I explained that she was @christinejolly, a woman who I had followed for a while who also happened to be the partner of one of my favourite authors @jameshannah who wrote The A-Z of Me and You. James and I share an agent, (Sue Armstrong) I explained. I’ve met him once at the agency summer party and both he and his partner have been so supportive of me on twitter. But I have never met her. Christine is, by the ordinary rules that govern life, a stranger. And yet she gave us this incredible gift. She also gave us a card, in which she wrote:

‘I know I can’t make things better, so instead I decided to make a thing. This blanket is very hardy and has witnessed both Trump’s victory and Ed Ball’s Gangnam style salsa without unravelling. It is more than happy to be dragged along the floor towards a morning coffee in a cold garden. This blanket will not ask you how you are. It will not tell you about a friend of a friend who cured their cancer with only wheatgrass and blueberries. I hope it can be a weight around your shoulders that is of your own choosing. You can hide under this blanket if you want to. It’s big enough for two if you sit really close together.’

When the boys came home from school, I made a point of sharing the blanket and the card with them. Because I have finally realised that gifts are not something to hide or be afraid of. This extraordinary blanket and the time and thought that went into it enabled me to say to my children, ignore what you hear on the news: see how good and kind people are; how lovely and thoughtful ‘strangers’ are.

In just a few days, the blanket has become part of our family life. I am usually up first so I lay it over my legs in the kitchen whilst I sip a cup of tea and wait for the house to warm up. My 12yo snuggles under it whilst he watches his iPod and later it moves to the front room where I lay it over my partner whenever he feels the cold. As I do this, I remember how two years ago I first read The A-Z of Me and You and wept at the tale of a young man in a hospice, who clung to a crocheted blanket and the memories it contained.

In her card, Christine said that she couldn’t make things better. But she was wrong. Every morning the first thing I see when I come downstairs is her blanket draped over the sofa. The sight warms me. And when I lay it over my partner, he feels the weight of kindness.

A photograph doesn’t really do the blanket justice but I wanted to share this beautiful gift  with you. And of course, to thank Christine. It is indeed somewhat bigger than a Christmas card and we will treasure it. Always.

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Adaptations

Seven weeks ago, my life followed a predictable if hectic pattern: up at 6am for a fight with the boys over the bathroom, serving up breakfasts and instructions (get dressed/brush your teeth/hair) before leaving my partner to sort out the mess as I dashed for a train to London. Once in London, there was lots more dashing to do: back to back meetings in different parts of the city, hundreds of emails, texts and booked calls before dashing back to Birmingham, arriving home around 8 or 9pm for a quick chat with the boys (have you done your homework?) and my partner (did you pick up my dry cleaning?) After much shouting and begging, on a ‘good’ day, the boys would be in bed (or at least in their bedrooms) by 10pm, when I would sit at the kitchen table to work on my MS whilst eating supper, before going to bed at midnight, wired and braced to dash away again in just six hours time. Round and round we went like a high-speed record player, until seven weeks ago, my partner was diagnosed with lung cancer and everything stopped.

I wrote about that dreadful day in an earlier post https://johoganwrites.wordpress.com/2016/10/08/the-cough/ and for a couple of weeks after the diagnosis, it was like living with a needle stuck at the end of the record, the once booming sound track to our lives reduced to a dull and ominous clicking. But gradually things have started to move again, albeit at a different pace. The day we got the diagnosis, I stood down from my London job and was fortunate enough to be offered a less demanding and largely home-based project by my understanding employer. Instead of being focussed on my career, I now fit my work in around my role as a carer for my partner and children, with deadlines determined by medicine schedules, temperature checks, meals and rest times. Everything – everything – depends upon how well or poorly my partner feels.

Once every three weeks, my partner has to spend an entire day having powerful chemicals administered into his veins in an attempt to stop the relentless division of cancer cells. He has just had his second cycle of chemotherapy and we are learning that this makes him feel extremely tired and grotty for the first 5-7 days, despite the copious amounts of medicines to be administered before/with/after food to combat nausea, indigestion, constipation, diarrhoea and vitamin deficiencies. The following week, his chemotherapy symptoms start to improve as the toxins pass through his body but half way through the cycle is also the point when he is most vulnerable to infection. Chemotherapy destroys all of your cells – the good and the bad. So we take his temperature three times a day because if it reaches 38 he is at risk of a life-threatening infection and is required to go to hospital within the hour. The third week is perhaps the best but also the most nerve wracking because that’s when he has more blood tests to check that his cell count is high enough to withstand the next cycle of chemotherapy. If not, then we have to wait at least another week until they are – another week when the cancer cells might be dividing unchecked.

I have written before about our fears https://johoganwrites.wordpress.com/2016/10/15/firsts-and-lasts/

but this week we have more hope. At the time of his diagnosis, my partner could not do simple things like get dressed or go to the bathroom without provoking terrible coughing episodes that left him breathless, exhausted and frightened. Unable to walk more than a hundred yards, our lives rapidly narrowed and things seemed very bleak indeed. Since his second dose of chemotherapy, the cough has greatly reduced and he can walk further and longer (although we still measure in yards, where once we used to count the miles on our long-distance walks together). We won’t know whether the chemotherapy is ‘really’ working until we get the results of a scan in a couple of weeks’ time, but right now, we have hope.

Meanwhile, we are adapting our life and home. We are making the bathroom more accessible and reorganising our (limited) living space to take the stress out of everyday tasks. I have painted my first room, drilled and undrilled my first screws and even built a bookcase. More importantly, I have stopped ‘dashing’ off and started making time for my family. I am here when the boys arrive home from school, so whilst their dad rests I can talk to them about their day, cook their dinner and help them with their homework. Instead of just telling my fifteen-year-old to be more organised, I have helped him to sort his GCSE notes into folders and created a dedicated space for his revision. Instead of arriving home late, hungry and irritated by the apparent domestic chaos, I now appreciate all the time-consuming, thankless but necessary tasks that my partner used to do (although I draw the line at ironing and shoe polishing).

But beneath all the change, some things remain constant. We still argue about bedtimes, homework and PE Kits but with our new sense of perspective, these exchanges evaporate rather than escalate. My partner and I now have real conversations rather than just swapping information. Fear has blown away the clutter of a twenty-six-year relationship, exposing once more the roots of our love. We are kinder to each other. Softer. Truer. (Although we still disagree about the necessity of ironing).

Everyone has been so unbearably kind. Family, friends and colleagues have inundated us with offers of help and sympathy, as you might expect. But we have been taken aback by the kindness of strangers: taxi drivers and workmen can see how sick my partner is and treat us with gentle and discreet care. The countless messages I have received via twitter and this blog offering support, cakes, kind thoughts and personal stories from people I have never met has been truly uplifting. And some days, we really do need lifting up.

Our lives have changed so much over the past seven weeks and there are more changes to come over the next seven. There is a new bathroom to fit and furniture to buy and rearrange – not just to accommodate the disabling effects of cancer but to make more space for love and kindness. We also have our son’s sixteenth birthday to celebrate and Christmas will be followed by my partner’s fifty-seventh birthday.

But important though these milestones are, the key dates on our calendar are now the third and fourth cycles of chemotherapy. These life-saving chemicals and their toxic side effects will determine not just how we live for the next few weeks but for the rest of our lives.