Cheshire Cat Hunt: it’s a no brainer

Firstly, a warning that this post talks about prognosis for glioblastoma grade 4 (GBM4), so if you’d rather not know, stop here.

I’ve decided on an alliterative title today, don’t say it too fast.

On Monday, I met my consultant oncologist, Dr Sarah Pascoe, at Derriford Hospital. I had encountered her some years ago when she came to talk to us on a paramedic training day about the management of neutropenic sepsis, which is a life-threatening complication of chemotherapy treatment. She had made quite an impression then.

I like her at once; she’s friendly, warm, open, straight-talking and has a sense of humour. We talk generally, and in detail about Hunt the tumour and how he might behave in future. The treatment on offer is:

Six weeks of radiotherapy, which will be daily on weekdays, with weekends off.

Six weeks of oral chemotherapy daily, with a drug called Temozolomide; this runs concurrently with the radiotherapy and enhances its effectiveness by making the cancer cells more vulnerable to it. I will also get an antibiotic to prevent a type of pneumonia that is common with this treatment, which affects the immune system and makes you especially vulnerable to infections, and also means your body is unable to deal with them.

Following this treatment will be a six month course of chemotherapy with oral Temozolomide, taken for four days, with 24 days off.

A big concern for me as you know is in weighing up the value of treatment over months and which has some significant effects, with quality of life. That’s a particularly tough call when the prognosis for GBM4 can be limited to months. Dr Sarah is clear that my surgical result and fitness gives me a good chance of the proposed treatment working well and that I should tolerate it well too. The aim is to prolong symptom-free life.  Of course there are risks, in particular: infections; somnolence that might go on for 6 weeks post radiotherapy; sickness; blood clots; and fitting. Those can be managed however.

If I opt for no treatment I’d be looking at months, and I would be unwell with neurological problems for a significant part of that. The evidence, she says, supports the treatment in terms of quality of life. So, it’s a no brainer. Dr Sarah says that in some cases she would not recommend the treatment because it would not give a good quality of life, so we are clear on that.

When Hunt recurs, treatment options depend on where the recurrence is: this might be around the site where he originated, which is my right parietal lobe; or it might be elsewhere in the brain where he’s not accessible. So he might or might not be surgically accessible, or vulnerable to radiotherapy.

I ask about swimming during the treatment (and that’s the huge advantage of oral chemotherapy).

Are you swimming in swamp water? Asks Dr Sarah.

No, moorland rivers or the sea… 

She sees no reason why I can’t swim if I feel up to it, with the proviso that I must not swim alone because of the risk of fitting.

I sign the consents.

I go to have my bloods taken, and am given an appointment on Monday for a CT scan to measure me for my radiotherapy mask. This will hold my head still while the radiotherapy takes place. The treatment should start in the next three to four weeks.

DWP

Because I have a GBM4, Sarah will issue a form DS1500, which means I get full ESA including the support group rate and full PIP with mobility allowance, no questions asked. So my struggle with DWP is at an end.

As an aside, I had called them on the previous Friday because I still hadn’t got to grips with the medical and work assessment forms, and the deadline was 6 April. I had my histology, but was unsure whether I would get the DS1500. On this occasion I spoke to a lovely woman who was clearly old school, and who told me not to worry about anything, and annotated my files to ensure I’d not have any problems She checked I was in touch with Macmillan, which I am, and explained the support they can give including excellent benefits advice (in sharp contrast to the initial experience in which the advisor insisted that Macmillan ARE NOT BENEFITS TRAINED). It does highlight the culture of DWP which has changed from one of being there to help and advise, to one of being there to identify and punish scroungers.

I leave Dr Sarah, get my ticket for the bloods, and buy a cup of tea and a Bakewell tart with which to take my dex. I  walk to the table, and as I go to put the tea down, the strap of my bag slips from my shoulder and falls, so I spill half the tea over the table and my arm. Once the mess is mopped, I open the Bakewell tart. I peel off the layer of sugar icing, and find a heavy, tasteless, clag, like sawdust spilling from a corpse. I feel a bit shaky.

There’s something quite final about being officially terminally ill, to the point where even the government will admit you’re not going to recover. The Bakewell tart feels like the shape of things to come.

 

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Histology Results

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First, a warning; there’s some unexpurgated information about brain tumours here, including prognosis. It comes further down, under the Result heading.  It’s the kind of information that I didn’t want to know for sure at the start, although I did have some idea. It’s also the kind of information that I can’t resist forever. I’ve always wanted to know things, to find out. I’d balk at the thought of being completely in the dark; my paternal grandfather in the 1960s was never told that the illness that killed him was cancer. So there ensued a game of charades which from what I’ve been told involved various efforts to avoid upsetting my grandmother (a strong and capable woman) and various others, including my grandfather who was clearly dying and who said to my mother at one point of course you and I both know what I’ve got.

My grandfather was a man who’d grown up in extreme poverty and violence; he was one of eight children whose father had lost a leg in World War One; he and his brothers would go to school via the soup kitchen in Plymouth for their only meal of the day. He worked his way to Australia on a ship aged 14, spent a couple of years on a sheep ranch, and returned to Devon to join the police, where he attained the rank of Superintendent. He was 6’5” tall, always smartly-dressed, hard-drinking, charming, tough to the core, and funny. A few years ago I was called to an elderly Plympton man, who I took to hospital in the rapid response car. He’d been an apprentice barber around the time of the war, and it turned out my grandfather Jack Roper used to go to that barber’s for his haircut, where he’d always spoof the barber for the cost; sounds about right said my Dad when I told him. A man who knew life.

That pressure is on everyone. What an odd notion, that you are protecting people from accepting, understanding, planning, tying up loose ends. Isn’t that opportunity a golden one? It’s denied those for whom death comes suddenly, but I’d argue it’s a chance to prioritise, consider what’s important, right a few wrongs. I spoke to a few people I felt I needed to clear misunderstandings and arguments with (one contacted me) after being diagnosed, because each was a little thorn that I held and I couldn’t let them fester. It was a good thing to do and I’m glad I had the chance. Of course I’m an extravert who communicates – I say what I think, I discuss, I’ll talk about more or less anything. Many people are more private. Atul Gawande talks about that, and around the end of life it’s about identifying what is important to you. For that to be easy, those closest to you also need to understand and it’s one of the difficulties with the crisis management of end of life, how others respond and what kind of process is kicked off; Gawande talks of end of life patients being maintained in intensive care right to the end in the US, which is of course utterly futile, and horrible too. Avoiding the acceptance of death (and ageing) is an art form in our culture. Each important person in your life will go through the process of accepting your death in her or his own way, and at their own speed. But the conversation has to be had in some form, and your wishes have to be made clear.

I’ve had a few message conversations about death with kindred spirits from Facebook whom I don’t know personally. Isn’t that odd? Or is it? As one says, maybe it’s harder to talk about your feelings with people you feel responsible for – certainly that was how I felt today, leaving my parents in the café while I got the news, then relaying it over tea and lemonade afterwards. But they knew the score, and I felt I had to process the information myself without worrying about how they were taking the news. So the protection instinct is there, modified.

I’ve slightly diverged from talking about prognosis; I imagine some would rather not know in anything other than vague terms, and since there are no definites in game of percentages, median survivals and averages, that would appear to be a reasonable strategy to take. I already know the prognosis for metastatic breast cancer, and of course there are many variables there according to where the mets (what Mr F calls seedlings) lodge in your body and so on. I looked up the GBM4 a couple of weeks ago, peering at the information rather as the babysitter in a 1970s slasher film peers around the basement door to investigate a noise. It was the point where I felt I needed to know.

Result

I’m sitting in Fal in the bay again, waiting for Mr Fewings, and Louise Davies the neuro oncology nurse. I chat to a woman awaiting breast cancer surgery; she’s having the same kind of op that I had first time around, in January 2011. Full circle. I don’t mention that this might be related. We talk about the surgery, and about the woman’s grandchildren. Finally, Louise appears and calls me in.

It’s a small room, white cement, metal windows. I sit in a black chair by the desk.

We begin with how I feel, the weakness and the strange numb/burning patch on my leg. The weakness is steroid related, classic. It’s no longer predominantly left sided, and the upper arms and thighs are most affected. Mr F also notes I’ve put on a noticeable amount of weight since he last saw me, in the classic steroid pattern, and related also to the effects of a significant dose of dexamethasone over six weeks or so. My cheeks are so swollen they’ve gone numb. The leg is a nerve problem, which he demonstrates. It’s a nerve that crosses the bulge in one’s gut over the pelvis, and it can become stretched. It enervates precisely that area. It’s the side I’ve been lying on, and makes total sense. So I’m glad to know that’s not Hunt-related. I’m to reduce the dexamethasone as of tomorrow, 4mg in the morning and 2mg at lunchtime over a week, then 2mg and 2mg. That should improve how I feel in myself, reduce the effects and improve the weakness.

The nausea I had intermittently shortly after reducing the dose last time can be treated with Ondansetron if I need it, thus avoiding upping the dexamethasone again.

Now we move to the results.

I asked to record the meeting on my iPhone, so what follows is the transcript with some extraneous phrases removed. I didn’t listen to it again till this morning, and what’s really interesting is that, despite being focussed and concentrating, I actually got a couple of key points wrong on asking Plum to spread the news. Then from Plum’s post there were a range of interpretations, some of which I think missed the negatives altogether. The lesson is clear; no matter what your interest, you hear some things that haven’t been said, you miss some things that have been said, and you read the message in your own way. (Of course there are implications there for informing those close to you about your wishes as I’ve been discussing)

So my cancer discussions are going to be recorded from now. Back to Mr Fewings.

He’s matter of fact, and talks clearly; we had already discussed the two options after the surgery so I am prepared.

I’m expecting this to be metastasised breast cancer.

It’s not.

It’s a Glioblastoma (WHO Grade 4), abbreviated to GBM4, an aggressive, primary brain tumour. This is the one that most people thought Hunt was not.

It’s 45mm x 30mm x 23mm.

Mr F:

Usually with a glioblastoma there’s an area which is obviously the tumour… and then around that is a patch and a rim of obvious tumour, intertwined with areas of brain, and then as you get away from the tumour there’s still patches of tumour, and then microscopic rootlets through a widespread area.

[He’s drawing a diagram as he speaks; there is a lot of scribbling].

Yours however looking on the scan and from the operation, was very well demarcated with a clear plane and so the main bulk of it, phhhhp! has plopped out.

So because it is a glioblastoma, you will still have to be managed as per the glioblastoma, which is chemotherapy and radiotherapy.

But with respect to your prognosis I would expect and hope that it would be better than the average, because it’s all been removed, with the caveat that it won’t have all been removed there will still be some microscopic rootlets.

Better than average means half the people do worse than average and half the people will do better than average. But I expect you to be in the good half rather than the bad half.

Unfortunately this problem, despite this being removed, is incurable.

The treatments are aimed at keeping you as well as you are now for as long as possible.

Without treatments, it’s likely that this disease process would take your life within a number of months, maybe six months plus or minus a wee bit, but with treatment your life should be considerably longer than that, say add on about another year…and as I’ve said hopefully in your case maybe even longer than that.

I ask Mr F about the oedema and the blood brain barrier, as I’d read that oedema constitutes a failure in the blood brain barrier. So is there cancer all around my brain?

No, just the tumour site, that’s all.

I ask about the tumour; the fact that it’s grade 4 is the most important information, because that describes its high level of aggressiveness.

I ask for and am given a copy of the histology report.

We briefly discuss radiotherapy which should be over 6 weeks with a tablet chemotherapy drug called temozolomide alongside. On Thursday morning I have an outpatient’s appointment with my oncologist who is, Dr Sarah Pascoe. She will go over the plan, discuss the options, and then most likely the planning will start so I’m to look forward to spending a few hours at the hospital. Louise my nurse tells me that fatigue is the main side effect of brain radiotherapy. Mr F says there may be an indicator for stereotactic boost as it’s well-defined, so more focused radiotherapy is a possibility.

I feel I have enough to think about at this stage, ready for my appointment with Dr Pascoe who is the expert.

I then ask Mr F about the lung nodules, which showed on the CT scan and which was a part of the reason I was drawn to the idea that Hunt was a met from my breast cancer. That and the bad luck of having two unrelated types of cancer within 5 years. Is there a god?

Whilst they noted them, a 3mm nodule and a 5mm ground glass nodule, it was noteworthy but of no major concern. However if this had turned out to be a seedling tumour, they would be other seedlings, but because this has turned out to be what it is I’m happy to ignore that. Also you have the abdominal lymph nodes related to your microscopic disease, the gut stuff.

At your operation when it was removed I said, ‘ah it’s going to be a met’ and the others though the same. About 1 in 20 are like this, and as I say they do tend to do better than average because the main bulk has been removed. If one can remove about 90% of the main mass of it that does confer some benefit, and with respect to the actual area of abnormality, 99.9% of yours has been removed.

Me: So that’s as good as it can be really.

Mr F: Absolutely yeah. So it’s not great news, of course it’s not, I’m not going to pretend it is…

Me: Yes I was ready for that, I knew it wasn’t. It’s nice to know it’s got a positive to it than just being shit and more shit.

Mr F: Indeed! You are well, no cognitive problems or neurologic problems, you’re a bit crap at the moment if you excuse the expression – courtesy of steroids which we’re happy to reduce down – and you’re seeing Dr Pascoe on Thursday for a plan of action for your other treatments.

I thank Mr Fewings and the other staff who have been excellent.

So in summary:

Only around 1:20 GBM4s is demarcated from normal brain tissue in the way that Hunt was. 99.9% of the tumour was therefore removed. A very good result for the more usual GBM4 would be to remove 90% of it.

Hunt is surrounded by an area of microscopic tumour rootlets, which can be treated by radiotherapy and chemotherapy in tablet form; potentially some more focused radiotherapy can be used in this case.

With no treatment, I would expect to live only 6 months, give or take.

The median survival for a GBM4 is one year. 50% of patients will live for less, 50% for longer.

I am expected to be on the longer side, which could mean 18 months, or even more. There are no guarantees.

So my news wasn’t as I’d expected at all. As Mr Fewings said: you never know.

I feel slightly shell shocked, suddenly tired, and half relieved by the thought that what remains of Hunt can be irradiated and chemically shrivelled, with of course my shrivelling prayer joining the fray. I feel some visualisation coming on particularly after a funny message last night in which kneecapping featured for the real Hunt. Now I see Hunt the tumour as the Cheshire Cat’s ghostly smirk. You haven’t got rid of me yet, he leers. I see the smirk exploding in stars with stereotactic rads and some blue stuff that burns, forms an acrid, fizzing smog and makes him cry. Sometimes only vicarious violence makes me feel better.

For now, Louise and I head to another office, and she runs through my folder of information. I can plan and monitor everything using the folder, including my food intake, signs and symptoms and pretty much anything else I can think of, but I suspect I won’t if past form is any indicator. Louise ensures I’m ok, explains the steroid reduction for about the fourth time, and points out that she’s written it in my folder. The page is cleverly marked. Now it’s a case of allowing everything to sink in, and preparing for the oncology appointment.

I am glad to know what’s what, even relieved. Of course few of us knows when or how we’ll die though I can probably predict with more accuracy than most that I’ll be dying of smirking Hunt as he re-materialises, sooner rather than later.

I think of some of those sudden deaths I’ve been to as a paramedic; the young lad driving home from work on a Friday, losing concentration momentarily, thinking about his night out perhaps, and clipping the verge. Hanging from the car, still alive but I can’t reach him and I doubt he’ll survive. I talk to him, touch his shoulder, chat about all sorts and tell him he’ll be okay while the fire fighters get him out. I hope he doesn’t know what’s happening but if he does he’s not alone.

The elderly man, a non-injury fall, sat on the floor next to his bed at 3am, unable to get up. I’m not a happy bear, I’ve not been a happy bear all day… as we lift him he goes into cardiac arrest. His wife knew he was going she says.

My grandmother, ooh, I’m going, I’m going…we hold her, tell her she won’t fall, misunderstanding.

And the baby, handed to me by a woman whose eyes beg me to help, while they know it’s too late. I see the tiny mouth, blanched almond white from attempts to breathe life back; the little nub at the centre of the lower gums where the ghosts of tiny teeth will never appear, the minute finger nails, dark blue.

The unhappy bear knew he was about to die. The baby just stopped breathing in its sleep, warm, fed, loved. The young man? Maybe an oh shit and disbelief, the terror. And the loved ones…

I’m still not dreaming. I don’t have nightmares, or terrors. I wake each morning in the early hours thinking about my illness. But I don’t dream. Why aren’t I dreaming? Or why aren’t I registering the dreams I have?

My fear, the slasher in the basement, is that I am going to lose my mind after all.

Death and all his enemies

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Yesterday I went to have my scalp clips removed in the MIU, and saw my old Dartmoor Rescue mentor J who’s a nurse there. While the MIU student removed the clips very professionally and with little in the way of discomfort, I explained the two main options of what my cancer might be (a GBM4 or a metastasis from an unknown primary), and about the physical weakness I have now, the ways I’d tried to carry on being that physically strong person I’d been for most of my life. Now I’m not. I haven’t been for months and months. I told her how I’d tried to find ways of getting over it, the I must lose all this weight I’ve gained, I must push it up hills instead of giving in and ambling, I must get fitter and get to grips with my increasingly fragile mental state.

The acknowledgement that I’ve been feeling this way because I have cancer is a momentous one that affects me in so many ways.  It means this is not anything I can overcome through physical effort or force of will. As J pointed out it’s purely about keeping my body as well as I can for the treatment, I can’t get fit. And my mind is aligned by blogging.

Yesterday I walked around the small beech banked area of Plaisterdown with Sausage the dog formerly known as Bun. I guess it’s half a mile, and it took me a good 20 minutes. I tried to engage my core and drop my shoulders, but I wasn’t up to arm swinging. As I moved I felt loss rather than gain in energy; the feel of mizzle seeping through my limbs to the ground, or the final dusting of glitter dropping from a Christmas card on twelfth night.

I’m weak from the op I know, but there’s not a huge difference from beforehand. I have medication in Kepra (last dose this morning) that makes me dull and tired, and the steroids that have blown my face up to the size of Jupiter and my feet and ankles to cushions, and blurred my vision. But I’m fundamentally weak.

I don’t need to be told by anyone that I’m strong and positive, I don’t need to be buoyed by well-meant words. I need to be realistic, until I find out for sure what treatment options I have and whether the potential benefits will outweigh the side effects. Yet I still like positive thoughts. One more cognitive dissonance. I spoke last eve to Kernow Stef who’s been sans broadband thanks to a house move. She likes to send me waves of positives because we usually swim in the sea. Last year we met at Whitsand and were playing in some quite poky surf, where she suggested taking the wave on backwards; as I leapt up it hit me in the back of the head and shoulders, and positively smacked me face-first into the foaming water and then the sand. That’s the danger with positive waves.

Death is something we fight against because our culture doesn’t understand it. Camille Paglia (a controversial but always interesting woman) makes an excellent argument that, through banishing birth and death to masculine, clinical atmospheres like hospitals (they work, she says, in Apollonian ejaculatory straight lines) we have disengaged with the feminine core of life and of nature, the blood and guts and circularity of sex and birth and death, and the rounded, unbounded bodies of women. So we reject death, fear it, try to control and master it – and our bodies. In my experience you sometimes have to allow death to happen, and I have been present at deaths from a variety of causes where the person has fought, struggled, and not gone gentle into that good night. Others have just slipped away, and some were killed with no chance to do anything and probably no more than a split-second realisation that this is the end.

I’ve resuscitated people in their 80s and 90s whose lives are not what I’d call a life. How many conversations I’ve had over my years as a paramedic with frail, pained elderly people who want nothing more than to slip away. I wish they’d let me go… Usually they suffer deep loneliness, fear, pain, falls. It’s most often a fall that results in an ambulance visit, if only to get them up and check them over. Usually there’s all sorts going on. They tell you their woes. It’s one of the more sustained emotionally difficult parts of a paramedic’s job, dealing with such misery and hopelessness because there really is no solution but blessed death.

Then, later on when they do finally die despite the long lists of medications that regulate their heart failure, and their blood pressure, and their diabetes, and their pain, and their dementia, we are sent to perform advanced life support, to attempt to save them. From what? More of the prolonged death to which modern medicine has subjected them, usually without any meaningful discussion of choice (how about if I give you this drug you might stay alive for another couple of years, or you could not take it and this is probably what’ll happen?) That drive to improve longevity and give people a healthy, fulfilling retirement has turned many lives into a kind of purgatory of waiting for it to be over.

Resuscitation starts with taking what are called heroic measures to save a life. A paramedic’s job is essentially in this context to keep the patient oxygenated and perfused, and it’s the kind of drama that everyone thinks paramedics engage in all the time. When I worked in Newton Abbot I was doing maybe 20 a year, less in other areas. So it starts with the airway and breathing, then involves such interventions as intravenous or intra-osseous fluids to maintain blood pressure, followed by CPR as the lungs and heart give out. Of course you can arrive at any point in that decline, or you can precipitate an arrest by moving a dying person from their bed to take them to the hospital. If the person is fit and was relatively healthy, then a successful resuscitation is a marvel. If they were dying of old age or an incurable disease, it’s an utter travesty, and a pointless one. We do it because we can.

Advanced life support is now so well drilled that we get people back quite often. The insult to the brain and body is huge, and the survival rate of an out of hospital cardiac arrest is much smaller than you’d imagine, especially one where the patient is neurologically intact. Often, they weren’t neurologically intact when they died, and were languishing in a nursing home with dementia. Why on earth are we even considering resuscitation? There are many moves afoot to try to prevent this kind of thing, to allow a natural death, but the overstretched GP service which plays a key role here is fighting a losing battle with cuts and 10 minute appointments, especially in areas like the southwest where the retired population is disproportionately large and where resources have not been increased in proportion to house building and retirement complexes.  It’s certainly not an issue to cover in one of Jeremy Hunt’s 60 second on-line appointments. How do you deal with that in even 10 minutes? Add in the Daily Mail and co, and you have a minefield of misinformation, a blurring of lines between euthanasia, the killing of elderly people without their consent, and CPR as some kind of miracle treatment to sustain life. It’s an understandably emotional bog of fear and horror at the thought of a natural and timely death that makes no reference to evidence or genuine humanity. The Liverpool Care Pathway fell foul of that. There were most certainly communications issues and mistakes in some cases; yet we all love a hospice which specialises in exactly that kind of care for terminally ill people, but we can’t allow our elderly dying to be supported and leave the world calmly because somehow we think we’re murdering them unless we treat each stage in their decline as a medical emergency. They’re suffering alright, but not in the way you think.

The oldest person I’ve been forced to perform advanced life support on was 96, and I know of one that ran the full time aged 101. Give him a chance, he’s a fighter… is the kind of thing people who ask you to do everything you can will say. A chance? At what?

The majority of the cardiac arrests I performed Advanced Life Support (ALS) on were in their 70s and 80s, with a fair few in their 90s, and some much younger but with advanced COPD and cardiovascular disease, or complications from diabetes such as limb amputations that tell you their circulatory system isn’t functioning. You do get those sudden arrests in younger people, from MIs, or drug overdoses, sometimes strokes, sometimes with no obvious cause. Those are the ones that it’s for, the ones any doctor will work flat out to get back (doctors have the power to call time on cardiac arrests that we don’t), although the outcome might not be good. They’re young, they still have lives to live. That’s what we do the job for and there’s no greater reward than receiving a card or a visit from someone you brought back, especially when you thought they were toast. These have a reversible cause. Old age and terminal illness are not reversible.

Quite often, you’d get a fit octogenarian back, and they’ll be apparently okay, but I still wouldn’t like to be them; a sudden death in your 80s sounds like a dream to me from where I’m sitting. Resuscitation and a prolonged death through frailty and a mass of comorbidities does not. We’re supposed to die. If we don’t then we need to stop reproducing, and perhaps all retire to Teignmouth with squads of elderly paramedics (retirement age soon to be 70) resuscitating each other. I’m simplifying a complex argument to explain my current thought processes about my own situation (you can’t ever draw a line of course) and as always, communication and debate is what’s needed, with individuals and their families and friends. One to expand on later, and to consider in depth, without hysteria.

A resuscitation is not pretty. It’s not like the ones you see on telly. Usually there are body fluids from every orifice, stinking and spewing. Vomiting can be intractable, and continue to well as you compress the chest and clear the airway, suctioning frantically, trying to drain positionally, dashing to intubate if you can see at all. Shit and piss seep, so you kneel in it unless you squat, and then your muscles start to scream. There’s a pervasive scent of death. Strange gasps and squeaks; sometimes a spooky sigh; the thumps of good, deep chest compressions; cracks as rib cartilage, and sometimes ribs themselves, snap under the pressure. The sensation through your hands is disturbing, but you push through, compressing at 100 a minute, about 5cm down each time; you begin to sweat and pant after a couple of minutes, need to swap over to keep the effective compressions going.

You bag your patient, grip the padded mask to the face that was recently animated. Sometimes you need help to pull the slack skin of the cheeks over the mask to get a seal to oxygenate them before inserting an endotracheal or laryngeal mask airway. Your patient’s face won’t look alive, and it’s oddly coloured; maybe blue-grey, or tinged with purple around the lips and nose, or the colour and texture of a church candle. It depends on how long the down time is, or whether or not you’ve got a decent airway and chest compressions going. You might have no idea what this person was like, or you might know them well as one of your regulars, or someone from the area where you work that was a family friend. They’re dead cold.

You shock to re-establish an organised heart rhythm, not to restart the heart. In fact, the shock stuns the myocardial cells, all of which are firing away individually but out of synch or too fast to allow the heart to pump blood. You don’t, as they do on TV, shock asystole, which means a flat line – there is no electrical activity at all. That gets adrenaline only, via an intravenous cannula (IV), or maybe from an intraosseous cannula drilled into the humeral head or the tibial plateau.

Anyone who dies at that age is dead. Bring them back, resurrect, you prolong their death from frailty and old age. But somehow we’ve come to the point where too many people consider it a patient choice rather than a completely inappropriate and unjustifiable set of actions, which are not based on evidence in such cases. And we are supposed to practise based on evidence, not vague whims commensurate with the choice of 300 types of breakfast cereal in Tescos.

To give a human being who’s had a long life the dignity of a peaceful death is not giving up on them. I felt physically sick as I crushed the chest of a frail, failing 96 year old and her breast tissue sank beneath the ribs, which fractured and detached from her sternum as we continued chest compressions. Her chest was like a bird’s, protruding sternum and each rib curving back. She was in a nursing home. We managed to call a halt on that one after fifteen minutes or so, via the local GP. But paramedics have been called in front of the HCPC for making such decisions. Had we ‘got her back’ we’d have condemned her to yet more un-death, that vampiric existence of frailty and feeling, probably, the way I feel now but in spades.

I’ve had families overrule a DNAR for someone who’s got so many problems they’re in a living hell, and we’ve had to do our best to resuscitate them too. I’ve been asked to take many dying patients into a main hospital from a community hospital because nobody’s managed to have the DNAR conversation. So I have to resuscitate up to the point of cardiac arrest, at which point I can stop because the doctor has decided that CPR is not appropriate, while a trip to the ED is.  If that involves inserting an intra-osseous cannula into the humeral head of a dying nonagenarian who still feels pain, you can’t tell me that’s okay; it’s torture. To flush an IO causes severe pain, screaming pain. In that case I called the ED consultant and he overruled the other doctor whose instructions I had been ordered to follow, before calling the doctor and making his feelings clear. But I could have just done it. And some people would argue I should have.

Then there’s the flip side, the way we run our social care mostly for profit. It’s the carers, usually paid below the minimum thanks to no paid travelling, and tight, fifteen minute slots, who bear the brunt. Once I found an 18 year old who’d overrun on her slot by an hour already, and who’d been told by her manager to leave her elderly charge who’d wet himself when he fell, because he’d had his time when she picked him up and she wouldn’t get paid. She’d stayed anyway, changed him and washed him, then realised he wasn’t right and called me. Bless her heart and a pox on her manager. Patient care is at the heart of everything we do, allegedly. That one was passed via the GP to social services. We treat our elderly like packages or pets.

We were once called by the police who’d broken in on a concern for welfare to an elderly woman who’d grown into her chair; ammonia-soaked flesh literally made our eyes water as we entered. She was waiting to die. She’d dispensed with her social care such as it was, which is her right. Someone was coming and feeding her, doing the odd bit of washing. But mostly she sat in her own excrement and ate cake, waiting to die. We managed to persuade her that we should wash her and change her clothes, swap the chair cushion. We built it up with inco pads, called the local community nurse who appeared at once and tended to her. We got four visits a day from carers, in carefully-timed fifteen minute slots of course, there’s a profit to be made here. Sometimes she’d let them in, sometimes she’d throw things at them and try to hit them. She wouldn’t let a doctor in the house. She lived around another two years, and the last time I saw her she was clearly dying but wouldn’t let me in. I wanted to make her comfortable, but she hadn’t been comfortable for years, only death would end her suffering.

When you hold the hand of the dementia patient being sent from his community hospital bed where he’s dying to ‘investigate’ gastric bleeding at 4am, and tell him where he is for the 25th time, then when he asks tell him that no you’re not staying with him, you’re leaving him here with a nice nurse, whom you know doesn’t have time to sit with him, and watch the panic in his eyes, it’s pretty upsetting.

You can’t ever say that’s in the best interests of the human being whose death ought to be a matter of comfort, management of pain and distress, and familiar faces in a familiar place. We need to fund social care, we need to address loneliness, and the management and care of dementia. We absolutely should be allowing a natural death in the vast majority of these cases, not performing resuscitation and ALS.

I hope I can make the decision to let death come when it’s time; that’s likely to be sooner than later for me.  I don’t want to fight it in a hopeless attempt to stay here for someone else’s concept of life at all costs, when life for me is such a matter of experiencing the moment, taking risks, loving the adventure. You can keep a shell of a person painfully and horribly alive with a cocktail of medications for years, or you can decide to stop treating, to allow some dignity. That’s where the choice should lie; risking that wild swim into huge swell, the one where you drop off the back of a wave and are sandwiched between it and the rebound, or perching on a canvas chair in a car park on the moors, with the car door open in case something wild or dangerous happens so you can safely escape back to so-called civilisation.