Skyfall

February 6, 2014
Eamonn
field-with-big-tree

Welcome to Eamonn’s curiously Bond themed Cancer 101 session. You know when you go on a training course and before you start the person in authority goes through the ‘housekeeping’. Well, if you feel nauseated by self indulgence, the nearest toilets are outside to the left. If the patronising wisdom alarm goes off, the nearest exit is the escape key.

Seriously though, don’t fret, I am profoundly aware that I am not the only person in the world with cancer. One in three will be diagnosed at some point in our lives. That means pretty much every single one of us will have to deal with it ourselves, or with the impact of it on our immediate family: mum, dad, sibling or child at some point. Some of you already have, some of you will again, some of you have it to look forward to. Some people die of it, some people get better. It sucks but ironically it is a disease of a healthy society. The higher the life expectancy, the higher the incidence of cancer. If an environmental factor doesn’t cause it first, your own cells will deliberately self destruct eventually.

I understand that cancer is not the only condition, disease or illness in the world, and that many people go through periods, or even the entirety of a long life, of discomfort to total disability. I also know that having relatively rare cancer classed as a terminal illness does not make me different or special. Tyler Durden would have reminded me, “You are not a beautiful and unique snowflake. You are the same decaying organic matter as everyone else, and we are all part of the same compost pile.”

That this is happening to me at this moment, among a wider group of people for whom it generally isn’t, makes it stand out a bit for those within that circle, but, and I’m sorry to burst any bubbles here, it’s just a matter of time. The inevitable human common denominator is we were born and we will die. Sooner or later, you (yes, I’m talking to you specifically) are going to either become terminally ill or be killed. Let’s hope it’s after one hundred amazing, healthy years from some spontaneous and painless heart attack in your sleep. Or it could be next week in a terrible car wreck. But it is going to happen. Drive safe now.

Nevertheless, I ask myself, “Is there something wrong with me?” I mean other than the pleural mesothelioma that is expanding around and through my lungs and insidiously infecting my lymph nodes. Why would someone feel the need to publicly purge themselves of their story and feelings about their cancer journey? I mean we’ve ascertained its not unusual, and other more articulate and interesting people have covered this ground already.

What’s the point? Is it a vanity project? Do I think that someone might get something useful from it? Does anybody give a shit anyway? Is it supposed to be entertaining? Let’s face it, cancer isn’t exactly a laugh a minute is it? I don’t want to write a self indulgent sob story that just makes people feel sad, and was a heartbeat from scrapping the whole idea altogether. Then I realised that there are a few very important things I have learned along the way that might help someone else; it could genuinely save a life; whether I like it or not, there is a point, so here you are. I’ve tried to break it down into digestible portions and highlight the {booming voice over} ‘Wisdom of Eamonn!’

 The Living Daylights

I remember the day it began. The journey home on a good day was about an hour. While I loved my Alfa, it wasn’t the most comfortable car in the world and I’ve always had poor posture. That explained the dull ache that was developing in my lower chest. Maybe if I shifted my weight to the other arsecheek…no, that didn’t help. It felt like someone was digging their fingers up under my diaphragm and pulling out against my ribs.

That night it didn’t go away, or the next day, or the next eight days. Part of what defines a man is his ability to resist his wife’s nagging to make an appointment with a GP, even when there are enormous lumps sticking out of places God didn’t put them, but eventually I gave in. Standard procedure would be he would give me some pills and then it would go away.

“What’s that Chas?” Or Dr Thenuwara, as he is officially known. It’s always a bit disconcerting when your GP is younger than you, but that’s more to do with being ambushed by middle age than the competence of a medical professional. Besides, he’s a good egg. I’d like to think we’d be acquainted by choice under different circumstances, but how do you make small talk over a barbeque with a man who’s had his finger up your arse?

“Well Mr Martin, there doesn’t seem to be air flow in the bottom right lung; go straight to the hospital, do not pass go, do not collect £200.”

Surely not. I must have a community chest card here I’ve been saving…

I did not pass go, but I did pass home quickly to explain to my wife that I’d been ordered to the hospital; there was a surprising outburst of emotion and fear (me, not her) and then off we went. It didn’t take long to get an x-ray, but as it turned out it was the day after the last day of the junior doctor rotation in the hospital. Apparently it is traditional for the young medics to celebrate by imbibing copious amounts of alcohol in the local hostelry and then (nine of them) not turn up to work the next morning. The resultant mass absence left us waiting for ten hours for somebody, anybody, to talk to us about the results. Finally, after repeated complaints, a registrar came out and held an less than formal consultation in the hallway. The culmination of years of education, medical training and the full resources of the NHS, his advice was, “You probably have a urinary infection. Here’s a prescription for some antibiotics, go home, and if you don’t feel better again in two weeks come back.”

Yes. You read that right. A urinary infection in my chest. That’s one hell of a bladder hernia I must have suffered!

“Are you sure? You got that from the x-ray?” my good wife asked incredulously.

“What x-ray? he replied with face like a goldfish.

Normally in our marriage, my wife is the one who complains about the waves I make. She doesn’t like confrontation with strangers, but with a glare that could melt lead, she turned to the registrar and quietly ordered him to get the x-ray, and look at it poste-fucking-haste, or else. I don’t know what the else was, but the insinuation was the hospital was a convenient place for his subsequent treatment.

Even while we waited for the feckless physician, I put my brain into neutral rather than open the door to some uncomfortable possibilities. “But he said go home. I’m happy with that, let’s just get the antibiotics and go.” I got the same superpowered stare and decided to stop speaking.

Ten minutes and an extremely sheepish reconvention later, a bed was made ready and I was told I would be kept in for the night. As he squirmed around this sudden and dramatic policy change, two words that should never go together stood out like bikini on a monkey: Lung and Shadow. There are no good sentences with these two words in, especially after smoking for twenty years, but we were reassured that considering my age, there were far more likely, and relatively innocuous causes than the big scary elephant in the room.

After the night of observation and with no immediate danger apparent, it was suggested the most likely cause was a chest infection, so I was given a course of antibiotics and within a couple of weeks things had calmed down. All went quiet on the Western Front until six months later when the same symptoms reappeared and a repeat performance ensued: GP, antibiotics, back to square one. However, this also started a process of hospital tests including bloods, ultrasounds and CT and MRI scans. All the results pointed to a buildup of fluid in or around my lower right lung.

Your lungs are surrounded by two layers of pleural tissue with fluid in between. The purpose of this is to provide a lubricated system to cope with the expansion and contraction of the lungs. Normally the human body creates this fluid at a rate that is in balance with its reabsorption back into your lymphatic system. Mine was out of balance, but the volume wasn’t enough to justify any dramatic action. Just keep coming back for checks every six months. So life went on: the kids got older, the car got nicer, the holidays got sunnier, the debts got bigger. Everybody was happy.

Then one day, about two years after the first symptoms, a letter arrived in the post from a consultant who had ended up with my case file. He was part of a multi disciplinary team that included an array of specialists from various hospitals. Between them they had identified a thickening somewhere there shouldn’t be in my chest, and he asked me to come in for a chat.

On the day, I drove up to Harefield hospital to meet with this world renowned thoracic expert. Except he wasn’t. He wasn’t even a consultant. It was a new qualified Middle Eastern registrar who had only recently started at the hospital. He didn’t even have my file. He sat clearly desperate for the ground to open up and save him from utter humiliation as he explained he had nothing to say because he had no paperwork. I should go away until they contacted me again. I don’t have cause to use the word apoplectic often, but that day I was, and it was literal.

A whole month passed before I could get another appointment, but this time I was greeted by a handsome, Mediterranean, middle aged consultant in an expensive suit, file in hand with the legend ‘Martin’ on it. That’s better, I thought; he looked like he’d been doing this for a while. I realised rather than struggling to decipher the syllable heavy Greek name on his ID, ‘Doctor’ would have to do for now.

“You’re very young.” He informed me.

What the fuck does that mean? Although, he said it through a charming smile so it can’t be bad, can it?

“I don’t want you to worry about this. The scans have shown up a mass in the mediastinal cavity in your chest between your heart and your lungs. But, you shouldn’t panic, thinking you have cancer, because you are very young.

“It could be a buildup of fluid or fat or something like that. I can’t make any guarantees… Sometimes things that look bad are actually nothing to worry about, and sometimes things that look like they are nothing to worry about, are; but the odds are so stacked in your favour, I would bet this is nothing.”

“Really?” I asked, “How much do you have on you?”

A quick check revealed the only contents of his pockets were his house keys.

“That’ll do,” I agreed, “I expect you have a nice house.”

A wry smile crossed his handsome face, “Okay, I bet you my house..”

Despite my assumption that finally I had been talking to ‘The Man’, he told me he wanted to get the surgeon in to explain how they’d like to proceed. Off he went and returned with a small, pale, serious looking man with a moustache. As soon as he spoke it was clear he wasn’t from Luton. Maybe Moscow? It appears the NHS is a truly global employer. He told me with all the bedside manner of a nuclear physicist that he was going to do an exploratory surgery; make a little hole in my side and poke a camera inside my chest to look at the mass. While he was there he may as well drain off that persistent fluid, which had suddenly started looking quite voluminous. However, “There is no rush, if we were concerned you’d be straight down to the theatre immediately.” and besides it was December, Christmas was on the way and there’d be a lot of socialising to reorganise.

January and my minor operation came around. I couldn’t believe I’d actually bought slippers. What was worse was the surprising and then depressing sense of contented comfort I felt when I tried them on. Shit, middle age.

The night before the operation, I eavesdropped a consultant with an old Sikh chap in the next bed. Through the drawn curtains I heard the magnificent beard told in startling candidness, “You don’t have to have this operation, but if you don’t, in three months your daughter will be cremating you.”

Shit Doc, don’t sugarcoat it!

The next morning came around and after a quick flirt with the cool nurse, I went into surgery. Three or four days on the ward with a drain on my chest and I’d be back home, feet up. Maybe a week more off work to heal up, then back to my life, thank you very much.

You know that moment when you wake up and you actually have no idea where you are or why. Oh yea, I’m in hospital. I feel surprisingly good; all warm and fuzzy. Hey cool nurse, how you doing? Wow, you look like you found a penny and lost a pound. You need to change the drain bag? Oh sure, crack on then.

I looked around but didn’t really notice that pretty much all the other patients also had drains. I also didn’t really notice that the contents of their bags looked like Evian while mine looked like the special effects kit from The Texas Chainsaw Massacre. Maybe I was enjoying the on-tap morphine too much, but the pennies started dropping when another new registrar came along and asked, “What time are you expecting your wife in today? Oh we’ve missed her? She’ll be back in the morning? Let’s talk then.” (The Arab, the Greek, and the Russian physicians were nowhere to be seen; probably in a bar somewhere creating the basis of a very politically incorrect joke.)

At that point, I prescribed myself a dose of denial. There’s not enough information to start drawing any conclusions, so pass me that morphine switch and…ahhh…

My wife appeared the next morning and we waited for what seemed like an eternity for the doctor to turn up. When he did, he was accompanied by a nurse, but not one of the ward nurses I recognised. “If you are feeling well enough, shall we take a walk down to the consultation room?”

Despite the medication and denial, a bomb went off in my gut. I looked to my wife, my face like a cow that’s just realised the building in the distance is an abbatoir. If they were mortally threatening my turbaned neighbour in public, what awaited me behind a private consultation room door? The corridor was about twenty meters long and I was incapacitated enough to slow me down to a shuffle, giving me plenty of time to consider and accept what I knew was coming. A comforting smile to my wife and a squeeze of her hand was in complete opposition to the accompanying words. “This isn’t good.”

The next thirty minutes was a blur. “We found something unexpected during the procedure…we need to confirm biopsy results…cancer …mesothelioma… asbestos…terminal illness…two types, this one is the less aggressive…”

“Woot!” My arms shot into the air. “I have the good terminal cancer!”

He wriggled like an epileptic eel, but I eventually crowbarred a typical life expectancy of ‘about a year’ from the doctor. I turned to my wife and the said only thing I could think of. “Just as well I sorted out my life insurance then…”

We asked for some time alone and and we sat in shock for an indeterminate amount of time. I’m not even sure if there were any tears. Now would start the process of telling mums and dads and everybody; this was going to be a lousy week. Everybody was as shell shocked as us, and nobody’s reactions were predictable.

I was sent home after a couple of days and spent another month with the drain strapped to me. The effusion wasn’t going away. We had sent the kids to their Grandparents while I was recuperating on an inordinate amount of drugs. A three and five year old running around the house screaming isn’t really conducive to quiet reflection and recovery; but more so, I didn’t want them to see the scary nasty bloody fluid that was leaking out of a hole in Daddy’s chest.

By the end of the month the nasty effusion had become a trickle and I sat in a consultation room with Mr Moscow. To say he was stereotypically Soviet in his agricultural approach would be an understatement. He yanked out the drain tube from between my ribs like he was starting up a petrol lawnmower. Then with the care and empathy of a greasy spoon chef at a truckstop, he stitched me up and helpfully informed me, that despite what I might be interpreting as excruciating pain, it didn’t hurt.

So much for ‘From Russia with Love’…

Lesson No.1: Take responsibility for your health. Do not ignore what your body is telling you. You know it better than anyone else. Do not be fobbed off by comforting ignorance or placations. If you don’t get the service you should from your medical professionals, do something about it.

Lesson No.2: In my experience doctors will offer the minimum information. If you don’t ask, they don’t tell. We had to ask specifically if the cancer was terminal.

Lesson No.3: Get all wagers with medical professionals recorded and witnessed. Funnily enough I never saw my Greek friend again. I assume he’s barricaded in some mansion in Pinner.

Lesson No.4: Don’t write down that you flirted with a nurse anywhere your wife might read it, because it will be the only thing she will pick up on.

 Die Another Day

There was part of me that felt sorry for the registrar tasked with giving me the bad news. It’s got to be the worst part of his job, and not one he dreamt of when he first aspired to the medical profession. I expect the first question he gets every time he uses the words terminal and illness together is, “How long have I got?” I also expect he has to resist saying, “How long is a piece of string?” or, “Damn it Jim! I’m a doctor, not a fairground clairvoyant!”

What followed was an awful lot of procrastination from him, and an awful lot of reassurance from me. “I’m not going to sue you if you don’t get the date right, you know?” My job involved interpreting numerical data and building business forecasts, and I say this carefully and without hubris, I was bloody good at it. Or consistently lucky. Either way, I spent a lot of time translating a narrative from a wall of numbers and have a fair understanding of how averages and sample sizes work. I’m certainly not a professional statistician, but an interested layman (I know, I should have got out more when I had the chance).

Clearly though, when someone informs you that your life has just been limited, you need some kind of context. Are we talking a week, a month, a year, ten years? I know that there appears to be a preferential hierarchy there, but in the moment I think they all probably feel the same. They are all a hell of a lot less than the infinity I was tacitly expecting.

To give you this context they provide you with the mean average life expectancy. With some cancers there are very large data sets, that can be be subdivided further still into significant sample sizes (for age, sex, socio-economic groups, etc.) that allow you to build some robust, if general, conclusions. Despite a peak in mesothelioma instances right now (it is thirty years since the first asbestos bans were put in place, and that is the average manifestation period), it is still a relatively rare disease with only two thousand cases out of a third of a million cancer diagnosis per year in the UK.

Now if you think that’s still quite a lot, the amount of people in the UK under forty that are diagnosed with mesothelioma per year is about five.

This is good news and bad news. The good news is that being younger, the other four and I are generally fitter and have no other contributing health issues, so when we then look at life expectancy rates, (77% stage II-III die in the first year, only 5% make it to three years) we few know we are only contributing 0.25% of the data. Ironically though therein lies the bad news; the sample size for people my age is so small any analysis is statistically pointless.

Lesson No.5: The problem with all statistics is that they are great for looking at large groups and determining general information, but when it comes down to the individual, every story is unique, affected by treatment strategies, and subject to imperceptible initial variations that can dramatically alter the final outcomes (chaos theory/ the butterfly effect). I know the numbers, but I also know that on a personal level they don’t mean anything; my time will be up, when it is up. Just like everyone else. As I write this I am two years and one month from diagnosis.

Live and Let Die

The painless appointment with my Russian surgeon was the point where we talked about treatment options: chemotherapy, radiotherapy, extrapleural pneumonectomy, pleural scraping. The problem was the cancer was stage III. It had gone from the pleura into the lung itself and and into my lymph nodes; the best we could hope for was to extend life expectancy. The treatments couldn’t cure the cancer and like everything in life, each one comes with its own price to pay.

In the end I decided to go with no treatment at all straight away, and that seemed to shock people as much as the news and prognosis itself. As I was still relatively asymptomatic, the plan was to wait until the cancer started to impact my quality of life before starting a course of chemotherapy. There was only a 30% chance of it having any effect on the cancer and it wouldn’t be any more likely to work if I had it straight away or six months later. However, there would be a very high chance that the side effects of the chemo would massively impact my day to day life. I also followed the logic that the later the chemo, the larger the cancer, the greater the absolute reduction in size if it worked. i.e. 50% of 5cm is more than 50% of 1cm. I don’t know how true this is, but it was another excuse to push things back.

As mentioned before, pleural mesothelioma is a relatively rare cancer that generally affects retired men after exposure to asbestos in their careers in the building trade. Knowing the numbers and discovering that a friend of a friend, who was of a similar age, had also been diagnosed with mesothelioma at the same time was a surprise. We were two of the five diagnoses that year. As I understand it she was caught at stage II which means it hadn’t spread further than her pleura at the time.

I have made it a bit of a point not to throw myself into the cancer world anymore than I have to, and don’t go to group sessions or share my experiences with the similarly affected. From what I have been told, and I must use the caveat that the information is subject to Chinese Whispers, she was very proactive in her treatment strategy including immediate chemotherapy and pleural scraping. I only found out in January 2014 that she died in August 2013 after a difficult period of disability caused by secondary cancers.

I don’t know enough details to make any definitive statements, and by nature I am an empiricist, but I can’t help feeling that agitating a cancerous plaque is a risky business, especially when the area affected is connected to both the lymphatic and the circulatory systems. In my case at least, I feel that I have probably extended my life by not aggressively attacking the cancer physically. Indeed the simple process of removing the chest drain caused malignant seeding in the wound stitching and I required a short, but successful course of radiotherapy to kill off the little bastards.

One year later, and sticking two fingers up at the statistical mean average life expectancy, I went through a eighteen week course of chemotherapy, and that hit hard, though not in the ways I was expecting. Fortunately, my constitution is quite resistant to nausea. However, I didn’t expect to be as completely incapacitated by fatigue. It’s just being a bit tired isn’t it? I was unconscious for fifty six of the first seventy two hours after the first treatment, and as any new mum will tell you, periods of extreme tiredness changes your character. I didn’t really recognise myself for the best part of five months, and trying to be the best father, husband and human being you can be through a consciously limited life is hard enough anyway, nevermind when you can barely wash yourself.

As it turns out, I was one of the 30% to have a good response to the chemotherapy. Some back of a fag packet calculations (maybe not the most appropriate turn of phrase) and we think those six chemical cocktails pushed the cancer back maybe nine months. Not only that, due to my continuing survival and relative health, I may even go back for a second course later this year. If you are wondering why I don’t just live on a constant chemo course, it damages your healthy body as well as your cancer, and the cancer also becomes resistant to the treatment, offering diminishing returns. The idea is to give it a bit of time to increase the chances and efficacy of a second treatment. When I was first diagnosed, no one even mentioned the possibility of multiple courses because, well frankly, people don’t normally live long enough to do more than one.

Lesson No.6: Every circumstance is different, and I am not telling people not to take risky treatments, but sometimes consciously doing nothing is better than doing something. I genuinely believe accepting the big picture rather than throwing Hail Marys has prolonged my life.

 A View to a Kill

Of course there are two sides to dealing with cancer, the business of what you are physically going to do about it, and then coping with the mental sledgehammer blow. Especially if you are told in unequivocal terms it is going to kill you and pretty soon too. Contrary to my expectations getting a terminal prognosis actually feels like it has made things easier in the long term. Fear is a child of Hope. Of course I base that on only ever having being diagnosed with the terminal flavour; I believe that if I had been prognosed with a 50/50 chance of survival, it would have been a constant battle with my emotions, a rollercoaster of test results with crests of joy and troughs of despair. I described the impact of the news at the time as ‘Like a freight train through a greenhouse’, but in some ways the utter powerlessness to resist its onslaught has made it easier for me to accept.

It also may have had something to do with the copious amounts of postoperative drugs I was taking at the time. When I was first told, I was on morphine; that went on for a month until I couldn’t take the mental blur anymore, and against all medical advice just decided to go cold turkey one day. I’m tough, I can take it, or so I thought. Three days of hell culminating with a blubbing, shaking, mess of human jelly in a bath says otherwise, but I came out the other side a little wiser at least.

I have also been taking steroids at various stages: directly after my operation, during chemotherapy, and now in an ongoing effort to combat the fatigue caused by my body marshalling all its resources against the cancer. Frankly, I couldn’t get through any of this without them. At first they seem like the a magic pill that give you superhuman energy and focus. You wonder if there is a conspiracy to prevent the general population from enjoying the benefits. Society couldn’t cope with that much motivation and those people at the top are keeping them all to themselves. Then you realise you have just dreamt up an conspiracy theory and wonder if the pill might be having some paranoia side effects (or have they been designed that way!) Entertaining imaginary scenarios apart, the mental focus they have provided has literally given me a second lease of life, even if sometimes I can be a bit full on for everyone else. And when I say a bit full on, I mean like a starved piranha on cocaine.

I know I have been through a long psychological journey, travelling through a varied landscape of self reflection, trying to assess the meaning and value of my existence; but like most journeys it’s a bit of a blur as the destination competes for my attention, so I suppose this is part of my attempt to snapshot those mental scenes along the way.

I read the self help pamphlets, “Being Diagnosed with Cancer’, ‘Coping with Chemotherapy’, ‘So, You’re Fucked!’ Things like that. McMillan do a great job of providing information and support, and we have been genuinely helped by their advice, particularly in handling the children aspect. I was also given the opportunity to go through a counselling course with the local hospice, Grove House, but I just felt like I was wasting their limited resources after two visits and stopped. I think you’re reading my version of counselling.

Despite their monumental efforts to convince me of their complete and utter incompetence up to my diagnosis (my GP notwithstanding), the NHS has stepped up their game brilliantly, providing me with an excellent support team including a very caring consultant, and a very smart psychologist who actually did write the book on bereavement in children.

But ultimately nothing can really prepare you or help you manage the feelings of knowing that pain in your chest, that shortness of breath, they are not going to get better. They are going to get worse and worse until they kill you. The good news for me is that is where it ends. In the meantime you try to remind yourself every day to not waste it, not to take things for granted, not to fall out with someone pointlessly or hold grudges; to do something productive.

I sound very wise don’t I? Very well adjusted. What I haven’t said yet is how I spent time on the internet looking up minimum lethal doses of prescription drugs, finding out how the whole Dignitas thing works, or wishing the end would come sooner rather than later because research indicates children cope better with parental death the younger they are. These weren’t prolonged or profound phases, and were before I came to terms with my situation, but they happened.

So in some ways it is ironic that people frequently tell me how brave I am, but now that I feel at peace with myself and my fate, it just seems semantically wrong. Bravery is overcoming your fears and the truth is I don’t fear my death. My atheist view has always highlighted my insignificance and the normality of my non existence. I do worry about suffering and pain. I am fortunate that currently the pain, a low level constant aching, is generally well controlled by a proactive and permanent painkilling strategy. On odd occasions I have extremely strong spasms of pain through the centre of my chest that I think is related to the lymph nodes. When this hits, I’m left utterly incapacitated in a whimpering heap for the ten to fifteen minutes it takes for the morphine to kick in. I don’t know how I will cope when that side of things really cranks up, I guess my bedroom will become the local opium den.

The other thing people often say to me is how the cancer doesn’t stand a chance against someone as obstinate as me; I’m a fighter. I know everybody has their own way of coping with whatever challenges they are presented with and cancer certainly qualifies as that. I understand that for a lot of people the idea of almost anthropomorphising a tumour into an enemy within is a coping mechanism and arguably helps psychologically. You can give in to the depression, to bear the hardships of the disease and treatments badly. That’s the battle front; to stay mentally positive in the face of a horrific enemy.

However, it does grate on me quite a lot, truth be told. Not only does it show a blatant disregard for facts, the assertion you can mentally battle the physical cancer seems to be a concept peculiar to cancer. People don’t talk of the battle with diabetes, or the fight against multiple sclerosis. The implication of this apparent compliment is that if you die of cancer, it’s your fault; you didn’t fight hard enough. Believe me, if I or anyone with cancer or any illness could wish it away through force of will, we wouldn’t need doctors would we? Of course that’s not what people mean, but it still vexes me in its fatuousness.

On the day I die all of this becomes an irrelevance, but for those that foolishly decided to make me important in their lives, it’s just the end of part one. How does a wife who has always assumed she would be part of a team bringing up a family now face the future alone? How and when do you explain to your children that you are not going to see them go to big school? How do your parents cope with the reversal of their presumption they would be buried by you? There’s the shock among friends and colleagues.

For my wife, there has been a concerted effort to recognise my wishes, even as she understandably wants to be able to assert control when she feels helpless. We have deliberately drip fed information to the children as it becomes relevant, but also surreptitiously imparted a general allegorical understanding of the nature of life and death through things like bedtime stories on the passing of the seasons. They understand I will die with cancer, but not of it, nor the timeframes. There isn’t much point in loading them with unnecessary supposition when we don’t know ourselves. This is becoming harder to manage lately though as their friends share stories of how Gran or Granddad recently passed away of cancer. At some stage the plain and full truth will need to be revealed before they deduce it themselves, making the ‘when do we have the birds and the bees chat?’ seem like a piece of cake. What we have learned is how incredibly adaptable children are. In the first instance after my operation, I was terrified that they might see the gruesome product of my cancer. As it turns out they are far more interested than horrified. In hindsight protecting them by keeping them away was a mistake, and caused more uncertainty and confusion for them than having them close by and carefully informed.

Lesson No.7: Never go cold turkey off opiates.

Lesson No.8: Everyone has their own way of coping, find what works for you, but don’t be afraid of embracing cold hard facts.

Lesson No.9: Children are more amazing than we give them credit for, and are in many ways better than us at coping with difficult situations.

 Quantum of Solace

For all the ups and downs of the last couple of years you might think the biggest battles have been in contemplation of my mortality. It’s surprising how the most mundane aspects of dying can become the most irksome. I can’t give anyone else a roadmap to guide them through the psychological journey they face when told they have cancer or they are terminally ill. I can only retell my tale and hope that there are some useful similarities that might make them think to ask the right questions, or shortcut the unnecessary crap that you can avoid. And if there was one utterly unnecessary part of this whole experience that could have been avoided, it was the three spirit crushing months I spent battling with life insurance companies.

Like most people, I didn’t even consider the need for life insurance until I got a mortgage and then only to satisfy a mandatory requirement of the bank. Some of us are a bit more conscientious and put something in place, not because a bank told us to, but because we start a family.

When we moved into our house in 2007 I was still firmly in the first camp with the minimum financial cover in place. Those thirty something years are a financial pit aren’t they? Between weddings, buying houses, having children, and all while we are trying to keep up with the Jones’. Let’s face it, throwing money for nothing at evil insurance companies is the last way I want to blow my disposable income. It was only as part of a pension consultation provided by my employer that I had a conversation with a financial advisor. He came around to our house one evening and after finding out what we had in place, he looked down at the tiny shoes rowed along the skirting board. “So Eamonn, you’re dead and your mortgage is paid off. What then?” What are these people going to live on? What about the loss of income, not just from you as the main breadwinner, but your wife, when she has to spend all that extra time and effort raising a family on her own?”

It’s not exactly the hardest logical question, but one that we as a family had almost consciously avoided asking ourselves because we knew we wouldn’t like the answer. We would have to start giving our hard earned cash to line the pockets of some evil faceless corporation; for nothing in return. It’s not like we could afford it even. We lived as most of us do, paying off debts every month against a multi-year plan. Some of it because we had ‘no choice’, but a lot of it on ‘shit we didn’t need, to impress people we didn’t even like.’

Faced with the reality of protecting our family’s future, we reluctantly put the necessary cover in place to make sure if worst came to worst, our children wouldn’t end up destitute. How relieved I was when I sat there being told I was a dead man walking, knowing that the one thing I could grasp onto was that I had protected my family financially. I know it seems crazy. You have just been told you are going to die and you are worrying about money? I guess maybe it’s a dad thing. It’s kind of our entire point isn’t it? I mean I know we live in a modern world where stereotypes are becoming less relevant, but the truth is in most families, once the children come along, mums become mums, and dads become, well, even more useless than before. More often than not, our familial responsibility, or at least one of the important ones is to make sure there is money to pay the bills. If you haven’t done that you have failed, or that was how I saw it for myself anyway.

Rhetorically, I ask you is the same question. How are your family going to get by next week after that car wreck? If you already know the answer, fair play to you, really, well done. If you don’t, then I just suggest you don’t want to find out when it’s too late. It’s not for me to tell you what to do, but for us it wasn’t a question of if we could afford to pay the insurance premiums, it was could we afford not to? Of course hindsight is always twenty twenty, and hopefully you will spend your entire life throwing your money away never getting the benefit of it. But if you do, you can do so happy at reaching a ripe old age and always having had the comfort of knowing it was covered.

That all said, as a sufferer of a terminal illness with a life expectancy as short as mine was (and still is) policies generally are met immediately, so I had the joy of discussing my own demise with insurance companies. During this process, one that should have been black and white and resolved in a matter of a couple of weeks, I learned the importance minding every word you say, ever. Not just on those occasions you know are important like filling out your life insurance application forms, when accurately dating things is critically important; but also when you are having an informal chat with your new GP and you make a casual estimate that he casually records. For example, what does ‘a few years’ actually mean?

I don’t know if I was ever naive enough to believe that insurance companies would ever part with their money happily, but I genuinely didn’t expect the lengths they would go to to avoid meeting their obligations. I spent more than three months on the phone every single weekday to someone: a GP surgery, a consultant’s secretary, an insurance adjudicator or administrator. I chased reports, argued logic, justified every bloody word I had ever written or spoken about my health to any medical professional ever. It was an administrative nightmare and unbelievably stressful. Every single morning, I would wake up and for five seconds I would be at peace until the reality of life and my ongoing insurance war would dawn. Suddenly it was like being unexpectedly punched in the guts by Mike Tyson, and it would stay like that until sometime in early hours of the next day when I would struggle to get to a few hours sleep before starting the whole cycle of stress again.

In the end they relented and agreed their argument was unsustainable. It has been one of the main contributing factors in my ‘happiness’ through this whole episode that I know my family will be financially secure after I am gone. They won’t have to sell our house and move in with the grandparents for the rest of their lives. My wife can focus on the children’s upbringing rather than worrying about where to do the food shopping. The kids could even think about going to university or something; hang on, what am I saying? Nobody is that financially secure!

Lesson No.10: If you think your family is vulnerable, sort your financial future today.

Lesson No.11: Make sure you always use specific and consistent terminology, and that it has been recorded correctly, any and every time you deal with a professional or organisation.

Lesson No.12: If you are go through a period of stress or depression, don’t suffer in silence. Go to speak to your GP. There are some very quick things they can do to help in the short term at least.

 For Your Eyes Only

So you made it to the end credits, congratulations on completing your mission. You tolerated immense personal self righteousness. You demonstrated great determination in the face of unnecessary loquaciousness. You judo chopped the cliched henchmen of extraneous detail and hackneyed narrative. You can truly claim to have earnt your country’s gratitude and your right to make a deeply sexist, blatant double entendre relating to your imminent sexual conquest of a bikini clad (non simian) sidekick. Then fade to black as a legendary diva power ballad kicks in. Please feel free to enact this in the privacy of your own home, or submarine or space shuttle or whatever.

Health and happiness

Eamonn

Share Button

34 Comments. Leave new

Actually read all of that. Purely because I am one of those people who

a) Didn’t actually know how to take the news at all which was something of a revelation in and of itself to me
b) Was hugely conscious of the fact that you’d be way better off (imho) with someone who you’d be comfortable knowing would be there (I am there) for you for anything but would never actually do the ‘so how you feeling’ speech ;)

So having had very little information, because I’ve never asked, aside from the highlights, it was interesting to read that and everything you’ve been through to where you are now. How brave you are…just kidding :)

In truth I’m sad, unbelievably sad, crying lots type sad and then I see you and the world is shinier and it’s not so bad, it’s a bit odd really I mean I should continue being sad and morose but in reality I cherish the moments we have now moreso than I ever did before.

Don’t get me wrong I have (and still do!!!) hugely enjoyed our friendship, you’ve been a fantastic friend, we’ve laughed, loved, fallen out, argued, hugged and kissed our way through well over a decade of friendship, but in some ironic twist of fate or whatever I feel that post ZOMG I’ve grown to know your head even better and like a comfortable pair of slippers there’s an easy nature to our relationship and it’s taught me numerous lessons personally. Funny really, well not funny haha but you know what I mean.

Anyway thankyou for sharing that, I’m pretty sure that anyone who is in a similar position to you reads this right through they’ll go away with something and anyone who knows someone going through the same thing will get something out of it.

Bravo sir :)

Lots of love

Your brother from another mother <3

Reply

Mattp,

“Actually read all of that.” Ha! Thanks for taking fifteen minutes out of your life “Brother from another mother”!

I’m glad it has helped give you a greater insight into the mental jungle that is my mind. With the keyboard as my machete, writing it down helps me find my way through too.

Reply

You’ve seen my Steam list, I’m lucky to pay attention for more than 4 min….oh look a butterfly

<3

Reply

That was a tough read bro. Good on you for being so honest, it will help people. Absolutely no doubt about that.

I don’t know whether you’ll be shocked to hear this or not, I’ve not really once cried since since that day. Not really. Welled up a bit and then get on with it. Because facts are facts. When anyone found out or spoke to me about it, they’d say the same things you talked about. Trying to make light of it saying things like “If he’s anything like you he’ll beat it” or “There’s been so many advances in medicine now, who knows what they’ll come up with”. My direct response is probably a shock to them. “No, the cancer will kill him”. They don’t realise, i don’t need to hear that.

I went on the same journey as you in my life where I started to realise everything i was taught at catholic school was rubbish. People die, end of. If I couldn’t accept that, how could I really live.

Anyway, I’m just blabbing…maybe this is me trying to counsel myself too.

I read this last night, reading it with the mindset ‘it is what it is, facts. This is life, don’t cry’. Well I got to bed and I cried my fucking eyes out. It’s just it’s you, yunno? And Sarah and the kids. And I knew you went through all that but to put it in frank, honest writing makes it really hit home.

I’ve just got on with life since that day. I think I know you enough to know thats what you’d want. I haven’t changed anything except my own attitude to life and you’ve inspired me to do so much more than I’ve dared to before.

Sometimes I feel guilt because I don’t spend enough time with you and family. Even tough I don’t see you that often, you have such an effect on my everyday life. Before you go anywhere, I hope that you get to see me stick and succeed at something and provide a good life for Oliver because I think that’s, not only the best thing I can do for me, but for you. It’s you thats given me the strength to do that, so I want to show you what you’ve given to me.

That’s been my mindset. But I don’t know if that’s right. Maybe I shouldn’t be thinking about stuff like that. Maybe I should be coming for more lunches, spending more time. Are you busy next thursday? xxxxx

Reply

Emily,

Yes it is difficult when people say those kind of mindless sympathies, and you find yourself biting your lip (or not) I just try to remember it’s a reflex response.

I’m glad you feel inspired, even if it’s more to do with your perceptions of me than the actual reality. Maybe you should look down and see how high you’ve managed to climb on your own achievements and take the confidence from that to keep going.

To be honest with you, (and this sounds so wank) it’s funny now that I have realised I don’t have much life left, I finally stopped wanting to be so selfish, and if I can help make even one small difference to one person between now and my last breath then I might feel it wasn’t all complete waste of time. That’s the point of writing all this mental effluence down.

I better stop before I start my own religion off and become my own worst enemy.

Reply

Oh and funnily enough, the thing that stuck with me the most when reading it was “OMG he publicly wrote he flirted with a nurse” and then you joked about how it was the only thing Sarah picked up and that and it really made me laugh!

Reply

Well… you know my thoughts on all the points raised in this article. Ditto, ditto, ditto – apart from “Lesson number 4″ which you should have learned before now for goodness sake! (Ps – to everyone else, on reading the first draft I did not even comment on the mention of this so called “cool nurse” – Whatever! ;-))

I do as I know you do, hope that it if nothing else this gives at least one person a reminder about the importance of Insurance, not just to cover the mortgage but to make sure that your family would be able to put food on the table and pay all the bills in the event of a catastrophe. Or to educate themselves on the particular cancer in order to be able to ask the right questions to ensure that you or your family are informed correctly on specific choices/treatment/prognosis by the medics available to you.

I could go on about how great you are but I know that’s not what you want to hear so…

I hope you write a Chapter 2 as I’m sure there are more “Lessons” to impart further along your journey.

Love from your proud wife who has held and will continue to hold your hand along the bumpy road. <3

Reply

Thank you Mrs Martin,

I know it sounds like I must be on commission from the National Insurance Association, I never thought I’d be promoting that business so vehemently.

The second issue about educating yourself and asking the right questions was probably not given enough stress earlier on. If I had have been a bit more proactive and a little less head in the sand, it wouldn’t have made much difference to me, but it would to most other cancer sufferers and two years undiagnosed could make the difference between life and death.

Thanks for everything, even publicly turning a blind eye to the cool nurse flirting…

Reply

Another wonderfully written piece.
As one of the 1 in 3 club (that I would rather not be in!) I was not sure if I would be able to read it all….but I did!
Some great points, some great advice and as always I can hear you speak as I read your words.
I am no longer a betting woman. I was given the ‘97% of these cases are nothing to worry about’ line….but finding myself in the 3% bracket was a shock! I have just had all my latest tests and all OK as we type!!
Loved the ‘Slippers’. My daughter (9yrs at the time) told me we needed to go and buy whole pants ‘no half pants/thongs for hospital and nightdresses’. Kids really are amazing.
I look forward to your next instalment.
Love to you and Sarah

Reply

Brilliant news Lorraine, I’m really pleased for you and your family.

The percentages business is like the lottery in reverse isn’t it. Someone wins every week even at 14 million to one, “Why me?” is a waste of philosophical energy.

Reply
David Hardstaff
February 8, 2014 4:08 PM

Like Matt, I ‘actually read all of that’, too!

Much of the day-to-day catalogue of events was new to me, so it was interesting (probably the wrong word, but you know what I mean!) to learn more about how it all came about. Mainly, though, it comes across as an honest, open and superbly written piece – if ever I find myself in such a situation I hope I can conjure up a similar degree of creativity!

At the risk of saying something totally pointless – thanks for sharing! It would have been good to hear more about that nurse, though …

Reply

Thanks for that David. Although when I wrote it I had no idea how captured everyone would be by the nurse! Now we just have to decide who’ll play her in the film…

Reply
Adrian Morgan
February 9, 2014 9:21 AM

One of the many questions I had wanted to ask but didn’t have now been answered.

Now I had better get that life insurance sorted!

Reply

Hmm maybe I should have set up a commission based insurance link here:-) I could have made a few quid!

But seriously from everyone I have ever met, you know better than any how life can be turned upside down in a heartbeat. I don’t need to convince you of anything I’m sure.

Reply

Well now I’ve finished all that bloody baking for Donna’s birthday, I have read the whole article too.

And it took me 10 minutes to write that opening line too.

A finely crafted, well balanced, emotional (sod it, I mean it) and thoughtful article. But you knew that and better placed people than I have said that. So can I bring anything interesting to the party? You raise points about counselling or being sensible about counselling so I’m going to dive in and say thanks for illuminating a little dark corner of my soul.

I’m 41 now and there’s something that’s been grumbling and groaning in my subconscious that, until I started reading your blog, I have failed to deal with.

Simply put: Death…sudden terminal death. None of this malingering, slow, cruel death you (or we?) have, but that, ‘I’m alive!…now…not so much.’ kind.

Of course it will never happen to me, for many years you’ve known me Eamonn, from a young, neurotic, uptight youth (yep…missed out on a lot of drinking) to an older, neurotic, drunker man (I have more whisky now), and you may recall back in May 2001 my older brother Matthew, a vibrant, successful, well liked man of 32, proposed to his girlfriend in an Edinburgh hotel, posed for a photograph, slipped on a rug, fell out the window. The fall didn’t kill him said the coroner, he died of a heart attack before he hit the ground.

It was all vaguely absurd. Pythonesque even. I remember everyone, including you and Sarah, offering words of support (even on the day of your marriage in 2005, which was magical btw) but not actually doing anything about it.

I mean literally nothing.

I still have no will written to this day and only have the obligatory life insurance attached to the mortgage. Irony is that, Matthew, god love him, didn’t….despite having a mortgage.

He could sell ice to Eskimos that lad. My how we all laughed as a family as my Dad had to settle his affairs out of his own pocket. It wasn’t a particularly good time. I did the sensible thing though, surrounded everything with a mental ring fence: all the events, the many, many tears, talking with the fiancee, the rows with my oldest brother, put it a fence around it all and quietly shut off the lights and hoped that it would go away with time.

It hasn’t, it’s still there. Your writings, Double O Martin, have forced to look at the whole sorry saga again with a more focused eye.

I do solemnly swear that, before you kick the bucket, I will have a will and sorted out the means, to a life insurance policy that has something substantial to it. And then I’ll reminded Adrian M. that he said he’d do one too ;-)

It is important to recognise, that while it is a terrible terrible thing that has provided me with a kick up the backside…..it is a kick up the backside. We all need it, or someone to provide it. You and Daniel (who has been giving me hugs while reading your post) have done it for me today.

You, Sarah, Jonah and Megan are always in my thoughts and prayers (Yeah? Tough you heathen bastard!) and you’ll find no platitudes from me!

Cheers all the same though
Adrian R.

Reply

Adrian,

I knew about that part of your family’s tragic history, though truth be told I hadn’t thought about it for a long time. However, it is another example of how pointlessly, swiftly, and surprisingly a life can end, and how it impacts so many people, so deeply for so long.

Your situation was very different when your brother’s accident happened, in that you didn’t yet have a family to support, but your comment highlights something that I discovered myself doing over the last two years. Even though you should be conscious of fragility of life and the need not to take anything, your mortality especially, for granted; the uncomfortable contemplation and inconvenient conclusions mean that we still end up putting it in a mental drawer, out of sight.

I won’t bore you with the details of how that manifested for me right now (maybe save the sequel), but if writing this article has jolted a few people into an action they know is right for them, then my work here is done!

For fear of sounding like a meeting of Alcoholics Anonymous, thank you for sharing.

Reply

Incredible piece Eamonn. The bits that I find really interesting are the facts the you have a terminal illness and that you are an atheist almost makes your plight easier to accept and manage. Quite the opposite to common thinking but also totally understandable. I really hope this piece can help others, I think it will. If I were in a similar position I would refer to it daily.

Reply

Thanks Adam.

I know, there are so many counter intuitive realities I’ve discovered through this experience, and I go into that particular topic in a lot more detail in another article, Terminal Velocity.

Reply

I would be really interested to read the book written by your psychologist. Have you seen it ? Please can you pass on the title………..thanks Eamonn

Reply

I Like yer Style Bro …Cheers
AsboMick

Reply

picked this up from mcmillan site and glad i did! like you i’m opting for symptom driven treatment and its six years since i finished chemo and about four since i did a week on a trial (never again!). i expect to do more chemo but i keep stretching it out, its the weighing up how good you feel now with what might be gained, a tough balancing act.
hope you decide to keep up with your blog, really interesting and articulate.

Reply

“So, you’re f****d!” MacMillan booklet! Man that really had me in stitches! I wish I had the nerve to mock that booklet up and leave it in the little turny thing that holds all the MacMillan booklets! :D :D

How about “Coping with nurses who put their head on one side and ask condecendingly “how are you”

or “Sex a guide to…………………..WHAT YOU ACTUALLY THINK WE HAVE THE ENERGY/INCLANATION/SECOND THOUGHT FOR SEX!”

Nice one Eamonn xx

P.S. I do love MacMillan and all they do for me, just incase my nurse reads this!

Reply

Oh dear Jayne, you are sparking the mischievous gremlin in me. Just the idea of people’s faces double-taking those pamphlets secreted amongst the real ones is enough to keep me smiling all day, if not actually starting up Microsoft Publisher! Especially your idea for, “How to stay sexy during cancer!” or something similar. Genius.

P.S. I too can’t say enough good things about MacMillan, in fact everybody that has been involved since my diagnosis. We are lucky to have them I think.

Reply

Another classy piece Eamonn-thank you.
Seems you are surrounded by what you really need-a good woman,great family and damn fine friends.The fact you may die before your 3 score and 10 is irrelevant as you will leave more than many people who surpass that age(not referring to your insurance “win”).Your boys will read this one day and have so many thoughts I’m sure but mostly how you just got on with it all and didn’t “die” on the day of diagnosis.
Jer

Reply

Thanks Jeremy,

Yes you are right I am very fortunate to have a great family, friends and wider support structure around me. Having delved a little further into forums on both the MacMillan and Cancer Research websites, I see that there are a lot of people out there who are not as fortunate and really struggle. If I was so inclined, I would count my blessings:-)

Reply

Hi Eamonn just started reading your stuff from a link on macmillan.Made me laugh out loud and snigger too!And high five you about the number of people who say ,keep positive,keep fighting it,etc etc.Well I am doing my best!It just so happens I am a fighter and I am positive but if I wasn’t I couldn’t help that either.I am what I am and long before cancer came along and dropped its crap on me I was and am the same person! I am not brave!!!Show me the way out of it and I will run to it!!I am scared of every bloody new thing that happens. But I have to get on with it and generally its ok.It all becomes a new normal.But I have laughed a lot too.Thanks x

Reply

Hi Julie,

Thanks you for your comments; they come at the perfect time! The point of the latest piece The Cancer Club was that despite my initial intentions, it seems they are also of some interest to others with cancer. I guess it helps us realise we aren’t weird or unusual because we think counterintuitive thoughts or have unexpected feelings. Most importantly I’m glad it’s given you a few laughs too:-)

Reply

Thanks Eamonn, this is Mick from the , ” incurables ” beautiful , funny and insightful. I shall read more of this blog as time permits. As Bob Marley said, ” you never know how strong you are until being strong is your only choice ” Stay as strong as you can mate and cry when you have to . Oh and laugh a lot ……Cheers !

Reply

i was recommended your site as it seems to be lively than other sites :-)..reminds me to make something for the family..future..but what kind of insurance covers are there which can help people like us..life insurance (got one thro my employer)..but what about cover for kids..i dont know..have to search for it..let me know if u’ve any suggestions..
and hey..just so that you are aware..i met my colleague’s wife who was diagnosed with bone cancer some 11years ago..she had 7 surgeries so far and 6 months of chemo but living a normal life after that…she was given 4months notice to her life :-) but she is living normally for 11years now..so i hope you keep up your good health and influence this world….in another few years..there could be a total cure to this daemon and everyone will then need to consider this as just another illness…(if nothing comes up..thats ok..pack up peacefully!!!)

Reply

Hi Vinod,

I’m glad to hear someone enjoyed the site enough to send you this way; I hope you find the same.

Firstly, when you say ‘people like us’ I’m not entirely sure what that means. Do you have cancer? I’m certainly no expert on insurance and wouldn’t want to endorse any organisations or products in particular, however a good financial advisor is worth their weight in gold (probably literally!) and should make their commissions from the provider rather than you; so that would be the first port of call if I was going to offer any advice.

Secondly, thanks for the good wishes and while my cancer is progressing, and I am fairly pragmatic, I am already considerably past my official expiry date so continue to work on the basis of taking each day as it comes, and not writing myself off too soon. You are right, you never know what is around the corner.

Reply

From the states. Read your honest passages. You have so much more courage than I would have. My 79 yr old dad is not doing well. Fluid around his lung. Tube in his chest. Waiting for results. Your right about asking questions. These doctors WILL NOT provide you with more information than they have to. I guess it’s up to the patient to be prepared before he/she sees the doctor. In the US you’re just another number with $ in front of it. Praying for you and your family. You’ve done well.

Reply

Wow.

Wow. Thanks for putting pen to paper (well in this instance fingers to keys).

I have just come through to your site from the Britmums Dad write up.

In never ceases to amaze me the blogs I continue to come across.

What a gripping and humorous read.

Written with such humility that I am certain will help others. Just for me it has given me the boot up the backside I needed to update my life cover.

Am off to readyour other posts and thanks again for sharing your story :-)

Reply

Hi and thanks for your comments. Having never written a thing before this year, I’ve realised I have a lot to learn about putting something like this together. I probably would have done things quite differently to be honest, but hey heck, here we are:-) And yes, I am not telling anybody how to live or what to spend their hard-earned on, but the old life insurance was a very important box ticked that has given us one less thing to stress about.

Reply

Wow a third time. I would have thought you had been writing for years. For me discovering blogging has been like finding that missing link that others express themselves via a musical instrument or singing. Can completely relate to doing things diff with the blog if I had the chance again but thats just the perfectionist in me and at the end of the day regardless of what your blogs calles or how it looks rhe phrase Content is King really does hold true. Just seen your email will respond in a tick :-)

Reply

Don't just think it, leave a reply