24 Sep 2016

Cancer

Cancer is a fight. A battle. A conflict between the brave victim and the merciless disease. Cancer is a war to be won, or lost.

Cancer is often depicted as some insidious evil, worming its way inside, unseen. Like a horror film, the monster that crawls inside in the dead of night to burst out when least expected for shock value. Cancer, however, comes from within.

So what is cancer? Cancer is a vast collection of diseases that get put under the same umbrella because they all stem from the same root cause - some cells in the body go wrong.
You have a multitude of different cells in your body, and the majority multiply by splitting into two perfect copies of the original. The scope for this simple, taken for granted act to go wrong is enormous - one wrong protein in your nucleus and you've got something your body didn't plan for. Most of the time you, immune system will spot the error and kill the imposter. These irregular splits happen thousands of times a day and you're none the wiser.
Unless. Unless. Unless.
Mutations, for that is what they are called, build up over time. A slightly irregular cell doesn't get blasted by your immune system, it splits into two more slightly irregular cells, and so on and so on. This is why cancer becomes far more common with age - mutations have been building one on top of the other for years and years, and one day, something shifts and it goes from unusual cell patterns to a tumour.
Some substances make these mutations more likely. Smoking, drinking a lot, eating too much red meat, eating insufficent fibre, asbestos, etc etc. You've heard of everything causing cancer, I'm sure, and in some cases they're justified.
Some people have a genetic susceptibility to cancer. They have a gene fault that makes either the irregular cells as standard or that makes the irregular cells multiply far faster than normal. This is why people who have never smoked get lung cancer, and why people who have always smoked don't. This is why young people suddenly get cancer for no apparent reason. Genetic mutations in your DNA can be inherited (like the BRCA gene for breast and ovarian cancer) or you can develop them in utero. Perhaps cancer is simply stamped on our genetic template long before we are people.

There are only three treatments for cancer, and they're both simple and terribly complicated. You can cut a cancer out, provided it hasn't spread. You can burn a cancerous tumour away. You can poison your body, to kill the cancerous cells. A tumour removal can be a ten minute minor operation for a skin cancer, or it can be an intricate hours-long operation on your brain. There are as many types of chemotherapy as there are cancers, and some are designed to cure and some merely to buy time, and chemotherapy in itself is dangerous and often difficult. Radiotherapy is most useful in tumours that are difficult to get to, to burn away what couldn't be cut away. There are other treatments, particularly in reproductive cancers that are heavily influenced by hormones, but these are the big three.
We speak of curing cancer. We talk of wanting a day where nobody dies of cancer, where everyone can be treated and live forever. Cancer has existed as long as life has. It is the paradox, that what gives us life, this constant replication of cells, can kill us. The longer lifespan our species has, the more likely cancer becomes. We speak of hope, of treatment, of cure.

But we don't speak of what happens when there is no cure. We speak of those who have died, but not those who are dying. It hurts too much. It is difficult to admit there is nothing to be done. Cancer is always framed as this eternal battle between the darkness and the light, and when no cure or treatment is available, it is concealed, somehow wrong. Failing. Losing. Giving up. There must be SOMETHING that can be done? Surely, in this day and age, there is SOMETHING?

The nature of medical intervention changes. There are no treatment plans made, only plans for comfort. Suddenly home is a hospital - a hospital bed in the dining room, Class A drugs through the arm, syringe drivers under the stairs, medication that would fell an ox when previously she wouldn't take paracetamol for a headache.

My mum hasn't given up, even though we have known there would be very limited scope for treatment from the very start. She is doing everything she can to stay well, to recover from setbacks and to live properly through this. Our family cluster around. Those who can't ask for updates, but there are no updates people want to hear. It becomes harder to talk about, because we can't put the discourse in terms of What's Next treatment-wise. Sometimes, I wish she could have chemo just so I had something to tell people when they ask how she is. She's planned her funeral to the last detail, but what happens after that is the Mordor in the distance. We, her children, are attacked by grief at unpredictable times. Grief and rage and unfocused pain, but love and laughter, black humour and togetherness. Dying isn't the same as death. We can't imagine her absence while she is still so alive. We live in stasis, a bizarre limbo where there is no hope, only now. Only today.




I write these blogs partly as release, but also to inform. We are collecting for Macmillan, but if you are in Lincolnshire, please also consider donating to St Barnabas Hospice whose nurses are currently looking after Mum at home.

15 Sep 2016

Life

Quality of life is difficult to define. In conversation, particularly when discussing degenerative illnesses like dementia, you often hear phrases like "I wouldn't want to live like that", sometimes to the point of being asked to be euthanised if they occur. Nobody wants to suffer. Suffering looks awful.
There are scales that are used to try and quantify what constitutes a life worth living, mainly as a way of channelling resources into palliative and end of life care. It should be noted that palliative care is any care that is intended to provide comfort rather than cure and can be offered alongside curative treatment, whereas end of life care means just what it says. Many people who are disabled or seriously ill may find that they have no quality of life according to these scales.

When discussing the theory of quality of life, what tends to be discussed is what makes people feel they are experiencing good quality lives, rather than focusing on the physical limitations they may have. These things tend to change throughout the life course, and are usually classified as hedonic (focused on immediate pleasure) and eudaimonic (focused on long term fufilment). I find my children immensely important to my quality of life in a way that my teenage sibling does not, indeed cannot. Fifteen years ago, my quality of life depended solely on my ability to be able to go out and get ratted. That is...slightly less the case now. Then you can take wider environmental concerns into accounts; things like living in a decent quality house, being able to find work, living in a low-crime area. It's difficult to have good quality of life living somewhere that makes you frightened. It's difficult to have a good quality of life if your main goal is wealth but you are poor. It's difficult to have a good quality of life is you are not able to do what you want through disability or illness.  Quality of life is a multifaceted idea that can't really be quantified. Though, sociology being what it is, they keep trying.

My mum's quality of life at the moment is objectively crap. She can't eat much. She's mainly confined to bed. She's on some hardcore pain relief. Using the various oncology ratings for quality of life, she scores very poorly. She has hospice nurses coming in to cast their knowing eye over her medication and help support my dad. She has district nurses coming too, for clinical care. It would be very easy to look at her life at the moment and sadly shake your head and sigh at how bad she must feel.

You'd be dead wrong.

She has my dad. My mum and dad have been married for almost 32 years. They weren't together long before they got married, and I daresay a few people shook their heads and muttered that it wouldn't last, but it has. They are still in love, still in tune, still in harmony.
They have seven kids. Seven! They have nearly ten grandchildren, and some of their children haven't even got started yet (we breed like Weasleys). And believe me, if our love could heal, she'd be fine.
She has her twin back, which has completed her.

She lies in the garden, come rain or shine, with a cigarette in one hand and a book in the other, plumped up on cushions and watching the birds (or sometimes, the cat EATING the birds). When it gets dark, Dad puts on the fairy lights and she lays in her grotto and she's happy. Tired, sometimes in pain, but happy.

Cancer has stripped away most of the stresses of life. Now she is living for now, with no eye on some future anxiety, with no grief for what she cannot have. She is not afraid. She has faith in God and believes that she will go on.

The day I found out Mum had cancer, my friend (unknowingly) shared this poem on twitter and as I have watched Mum come home from hospital and take root in the garden, it becomes more and more apt.

The Peace of Wild Things by Wendell Berry

When despair grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds,
I come into the peace of wild things
who do not take their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting for their light. For a time
I rest in the grace of the world, and am free.


9 Sep 2016

Another Brick In The Wall

The stories in the news at the moment about selective education has made me ruminate on my Grammar school education.

I had the fortune to grow up in a town that had two secondary schools - a standard co-ed high school and a co-ed, no-fees grammar school. At the beginning of year 6 (I think) we all went and sat the 11+. I assume it was an optional exam, but it's not an option I can remember discussing. It was my first experience of a proper exam, all formally spaced tables in a large and alien hall on a Saturday morning. It terrified me. The stress of waiting to find out if I'd got in or not was ruinous to my mental health, as an already anxious 11 year old, but when I passed, I got one of the highest marks in the school. The following September, off I went in my expensive uniform clutching my expensive and heavy set textbooks that I never used.
Now, we didn't have a lot of money when I was little. We weren't on benefits because my dad earned a little too much, but that money was spread among a lot more people than is standard. We were very working class, and most of my friends' parents were horrified at this tall, sweary, untidy and hideous urchin befriending their special snowflake. Conversely, my mum absolutely HATED all the posh  friends I made. Until I was in year 9 or 10, I didn't have friends round very often, but neither did I make the friends that I kept for life until then, so no great loss.
School, for me, was something of a hideous nightmare. There was the bullying - daily do I give thanks that I never had to catch the bus to school. There was the bullying from staff, who occasionally joined in. There was the constant feeling of not being quite good enough. I have an old school report which says that I got 75% in a geography exam, and I was 22nd out of 25. This all got ramped up considerably running up to my GCSEs when all staff decided that the best way to get good results and finally beat Louth to the top of the county league tables was a campaign of demented terror. Every teacher became fucking Saruman, standing at the front of the hall, gravely intoning the awful fate that would befall those who could not be arsed. We might end up...poor.
I got 11 GCSEs. I went on to do five AS levels, but again was hobbled by a mixture of anxiety, discovering sex, and being taught in half my subjects by my nemesis. This teacher, in hindsight, was fairly innocuous and trying to get work out a woman who was far more interested in gigs and sexting and whose grandparents were dropping like flies. Alas that her main way of getting work out of me was to humiliate me in front of the class pretty much every week, in small ways like refusing to believe I had read a Nobel prize winning book in one evening, or just giving me the evil eye. I was never going to be a good student, but being taught by her meant I just didn't go to half my lessons all year. Then I got a B in her main subject, by essentially teaching it to myself.
But it was too late by then, I had given up, quit, and left after AS study leave. What I should have done was dropped a couple of subjects or switched to the other teaching group, but being teenage and grumpy and dramatic, I thought my only option was carrying on miserable or quitting. I had an idea I would go to college and become a nursery nurse, and even had a placement secured, but then my mum said I should stay at home and look after my sister instead. I agree, and also applied to do a nursing diploma at university, against some opposition from my boyfriend and family at the time. I was rejected, which fair broke my old heart. I ended up looking after my sister for over a year, and then moved away and got my first and only real job. The only reason they offered my shy, teenage self the job was because I'd been to Grammar school,

I'm still poor. I still ended up divorced. I still ended up on benefits. My kid's still disabled. I still live in a hovel. These are things that are supposed to be assuaged by a better class of education.

I mean, aside from getting a decent job by dint of being employed by a Grammar snob, I met my future husband at school. I learnt to write persuasively there, and I learnt to be intensely critical of everything, particularly myself. But my love of learning, of academia, of pushing myself did not come from school. That came later. I didn't go to university when my peers did, making me feel inferior, not to mention lonely. I remember going to a careers advice interview in year 12 and telling them I wanted to do a nursing diploma, and they stared at me aghast. Why not...go to med school? Why be a nurse when you can be a doctor? What sort of fucked up attitude is that? It is a blessed miracle I have a high-grade maths GCSE at all; there's no way in a thousand years I could get the grades for med school, even if I wanted to.

I now live in a city that doesn't have a Grammar, but does have a private school that takes a minimal amount of students on scholarships. It has twelve other mainstream secondary schools. There is fierce competition over which secondary school children go to, as there was in the area I previously lived in, where there were only three secondary schools and a private Grammar covering an enormous rural area. Our local secondary school is over the road, and I would no more willingly send my child to it than send him to a lion pit. That's my prejudice, my snobbery, but also based on its appalling GCSE grades. This is despite the fact that I KNOW that GCSEs grades do not necessarily equate to a good school experience. I was the most miserable girl on my throne of good grades.

The problem was succinctly put in a tweet I saw this morning from Professor David Andress of Portsmouth Uni: "What we see in the 'grammars' debate is an underlying certainty that it is impossible to educate everyone well, & a waste of time to try." It is so difficult to maintain any sort of standard in secondary education, whether because of appalling staff culture, the problems of academisation and having schools run as PR campaigns, or simply having too many students without motivation to try. Whichever area you live in, whether it be an area where having a two tier system is normal, or an area which is awash with average high schools, league tables are still used. Performance is still rated. Schools are compared by parents, who strive to get their children into the objectively best schools, hoping to give them a better start. Parents like the option of a Grammar school, not always because they are snobs or victims of class culture, but because they want to give their children a better education and they perceive that to be beyond the scope of standard high schools. Maybe instead of bollocking on about Grammar schools, the predominantly privately educated government needs to raise the profile and status of standard secondary education. Children do not deserve to be written off at the tender age of 11 because they went to the 'wrong' school, or failed to pass an entrance exam because they were stressed, or anxious, or upset about something else entirely.


2 Sep 2016

Hospitals - Not For Tripadvisor

When you have to visit the same department of a hospital several times, you memorise the signs. I now know that domestic violence spikes during sports events, and what different nursing uniforms mean. I know that if you dare try and get NHS treatment fraudulently, Teresa May herself is coming round with the boys. I know that, despite brexit, we can still get EHIC cards. And I know whether or not I would recommend the department to my nearest and dearest.

Wait, what?

We have spent a lot of time in ambulatory care at Peterborough hospital of late. It's a strange, useful department, designed for people who are too poorly to be seen in outpatients but who don't require an inpatient bed. A lot of people in there are being followed up from A+E, or having transfusions. Almost everyone in there feels like shit and a lot of them look it too. It's not the sort of place you go for a picnic, or the stunning view of the car park and Macmillan unit next door. The water's cold, the outside benches were designed for people with waves for arses, and they really need more reading material, but I'm not about to go on Tripadvisor and leave an excoriating review of the amenities. It's not somewhere you go for a jolly - we are there because Mum has to be there.

And yet, would I recommend this department to my friends and relatives? What a bizarre thing to ask people in an acute care centre. A few years back, I had a brain injury and about two weeks later, someone rang me up and asked me how I would rate the A+E dept. I can barely remember being in A+E, so how I was expected to rate it, I do not know.

The NHS likes to bang on about choice, namely choice of provider. Sometimes this can be really useful - I was able to get my son re-referred to his old hospital for an operation despite being out of area - but mostly it is meaningless, particularly in terms of acute care. When dripping blood everywhere, who has time to ponder to which A+E they are going to drag their detaching limb? Who has that level of local choice outside big cities? Where I live, there is Peterborough, which is five minutes away, but the next nearest large hospital is Hinchingbrooke, which is half an hour in good traffic. In an emergency, there's no question of where I'm going to go. Offering choice in acute care is illusory. Being asked to rate it is meaningless.

Treating patients as customers within the NHS is a real bugbear of mine. A good patient experience is very difficult to quantify. For example, excellently executed palliative care still results in a dead patient. Conversely, a live mother and baby is considered the best outcome in maternity care (as well it should be) regardless of trauma suffered. Patients experience the same illness in very different ways, every clinician has a slightly different approach to treatment, illness progression and injury healing can be very difficult to predict. How high patients are likely to rate departments surely depends on their mood, their particular problems and their experience on that day.

To give an example, when my mum was in Scarborough hospital (rated as requiring improvement by the CQC), some of her care on the ward and in transit was substandard from a professional point of view, but we are all so grateful that they saved her life that we wouldn't consider complaint. If asked whether I would recommend their emergency care team, I would give them a very high rating despite seeing some negligent care later on, because of that gratitude. However, when we have been sitting in ACU at Peterborough for six hours, waiting for medication that seems to take days to dispense, while Mum cries and dozes on a bed, I am disinclined to rate them highly. It's not their fault, their care is always excellent, but my mood is never good there.

To rate patient experience requires more detail and nuance than a simple "How likely are you to recommend us to friends or relatives? 1-5" rating, like you get in bloody Argos. If my curtains take thirty minutes to come down the chute in Argos, perhaps I have cause for complaint. Perhaps my giving them a 2 rating is justified. But giving a hospital a low rating because I had bad news that day? Because a poorly toddler was screaming and it made my migraine worse? Because some drunk vomited all over the waiting room and it took a while to clean up? Because I was scared? Because I was in pain? No. That's not a fair way to rate a department.

When I worked in general practice, we had to do patient surveys. For a month a year, everyone on reception would sick of the sight of this stack of questionnaires, ignored upon the desk because nobody coming to an urgent GP appointments wants to rate the surgery - they want to get their medication and go home. So what ended up happening was that all the regular patients would fill them in, rating us generally highly because they absolutely loved the GP or rating all the reception staff poorly because everyone hates GP receptionists. It never felt like a particularly fair way to assess patient opinion, least of all with all the staff fearful of what they might write (I believe now the CCG sends questionnaires direct to patients).

The NHS is not a shop. It is not Argos. It's not even Amazon. It's a public service. Hospitals are not theme parks, or holiday homes, or somewhere you can reasonably expect to enjoy yourself (unless you're some sort of fetishist). Rating your care is so subjective as to be almost meaningless outside of detailed debriefs after the event. Complaining is one thing: I am a seasoned complainer, usually because of instances of negligence or misconduct rather than bitching about a receptionist's tone, and the NHS needs to be open to justified complaint, but giving a flash rating subject to emotion at the point of care is ridiculous. Make it stop.