Wednesday, January 30, 2013

The Northern Lights Optimal Exit Strategy

Day 52  

General status update: 

Hair: having a nervous breakdown after a fair bit of it came out on the comb after washing yesterday. Reminded it that we knew thinning was imminent, and that it is not yet coming out in actual handfuls. It is still possible we may get through to the end of chemo with just thinning, and no actual bald spots, or just balding on the crown of the head. And that is what Smurf hats, snoods and hijabs are for. We are completely prepared for this. And it WILL grow back, and be better, by all accounts.  

Nausea demon: Bit of a fight-back today after I forgot to take my meds at lunch time, but has subsequently been re-corralled.

Despair and Rage demons: burned themselves out yesterday, and have moved on to party elsewhere – happily, they tend to be only short term visitors during days 5 -7 of each FEC cycle. 

Chemo Muse: after her tactful retreat yesterday during the hair-related emotional melt-down, got me up and at it this morning, and has kept me working all day. She does have her uses. 

Chemo Brian: was very comforting yesterday, when I completely lost it after several days of extreme physical unpleasantness culminating in hair loss-related weeping extravaganza. He gave me a Lorazepam, and let Chemo Rat Brian sit on my shoulder. 

Chemo Nano-Rats: these have been giving me hell for the last few days – a clear pattern has now emerged whereby the nausea dominates for the first five days, but then from days 5-7 extreme internal toxicity takes over: the inside of my stomach feels like a toxic slurry pit, the sides of which are constantly being abraded by the claws of those tiny Chemo Nano-Rats. It is the most unpleasant physical sensation I have ever experienced, and I would take nausea or toothache over it any day. I think the toxic slurry pit is going to be the hardest thing to forget about chemo. Also, it induces such huge distress that the Despair and Rage demons become rampant around it; this cycle has been by far the worst, and for the last 3 days I was very close indeed to breaking point. If it hadn’t been for R, I would probably have reached it. This problem has now abated to a bearable level, and by Friday, probably, will effectively be over for this cycle. 

Sleep, lack of: n/a. Getting back to normal. 

Anxiety level (1-10): Hah – when the Four Horsemen of the Apocalypse have actually dropped in for tea, and are sitting on your sofa digging into the egg and cress sandwiches and the lemon drizzle cake, what on EARTH is there left to worry about? 

State of mind: much better, today, because the physical stuff is now at a more bearable level. By tomorrow I will be positively chirpy, I shouldn’t wonder.
 

It’s always good to have a Plan B, especially in highly unpleasant circumstances into which you have not entered voluntarily, and over which you have no control. Regular readers will know that my public Plan B, since the start of this nightmare in August, has been running away to Goa, there to sit under a palm tree, in flagrant denial of the realities of breast cancer, and eat mangoes and health-giving vegetable curries until the cancer gets bored and goes away, or Jesus reaches down and takes me for an angel, whichever occurs first. 

Have passport, have credit card, really don’t want anything to do with any of this, will travel. I'm still finding this quite tempting, from time to time.

There’s another Plan B, though, hitherto a purely private Plan Band this is the result of the following thought experiment:
 
 ‘What would you do if at some point along the line, it all becomes too much to bear – if the cancer comes back, despite all this hideous treatment, and makes a triumphal procession from your bones via your brain to your liver, as breast cancer loves to do, given half a chance? What then? Would you have more chemo, and then yet more chemo, and then end your days trying to persuade the doctors to give you enough pain relief so that you don’t actually die screaming?’ 

My answer to that is, most definitely, no. I’ve had enough problems just getting the doctors to prescribe the right kind of drugs, and enough of them, to deal with the nausea from chemo; if it ever gets to the stage where my death has to be managed, then I’m going to be in charge – I will manage it myself. 

Something that has been on my mind for quite a while now, since long before I was diagnosed with cancer, is the extraordinary cruelty with which some of the dying are treated. Terminally ill people are forced to suffer unspeakable deaths that we would not inflict on animals; to give one of the most egregious and well-known examples, people with advanced motor neurone disease have fought several highly-publicised court cases in an attempt to prevent themselves from being forced to die by choking to death. Each of them lost, and at least one of those people ended up starving himself to death instead, because it was an 'easier' way out.  

I’m not going to debate the ethics of euthanasia here: it’s an enormously difficult, perhaps intractable, issue, and I’m all too well aware that the legal safeguards against helping people to die to exist for very good reasons – the human capacity for evil is considerable, helpless, vulnerable people need to be protected, and the shadow of the atrocities committed by the Nazis in the name of ‘euthanasia’ still looms large.

I also know that many doctors do, quietly and humanely, ease the passing of those who are close to death, and for whom continued existence has become a physical and mental torment. But you can’t count on it, that’s the problem: you only get the one death, and if you're dealing with the wrong doctor, then you're s*** out of luck.
Many people, every day, suffer quite unnecessarily hideous deaths, and that's a not a risk I will be willing to take, if it comes down to it.  

(There’s a whole separate issue about futile, unnecessary, invasive medical interventions which prevent people who are dying anyway, particularly the elderly, from having peaceful deaths, in the name of ‘doing everything possible’, and avoiding litigation from the bereaved; we’ll come back to that another day, as it bears thinking about by any of us in advance of a time where we may be called upon to make decisions on behalf of a dying relative in such a situation.)

If I do ultimately find that this cancer manages to turn itself into a death sentence, then I hereby give notice that I will find a way to make my exit at a time and in a manner of my own choosing.
 
The great problem with devising one’s own departure from life, however, is that so many ways of doing it are extremely unpleasant, and the less unpleasant ones won’t necessarily work. Dorothy Parker famously summed up this dilemma as follows:

Razors pain you;
Rivers are damp;
Acids stain you;
And drugs cause cramp.
Guns aren’t lawful;
Nooses give;
Gas smells awful;
You might as well live.

There’s also the problem that many methods of self-disposal are likely to involve distress or inconvenience for other people, and such acts have always seemed to me to be extraordinarily selfish: just how disturbed does the balance of your mind have to be not to care that by throwing yourself in the path of a tube train you are sentencing the poor b***er who’s driving it to a lifetime of grisly nightmares? Similarly, although the noble Roman method of opening one’s veins in a hot bath (accompanied, perhaps, by a distinctly un-Roman bottle of vodka with some nice painkiller chasers), in a well-appointed room in a big, anonymous hotel, has a definite appeal, being both simple and definitive, I couldn’t do that because of the cleaner.  

Someone has to find you, and it would be some poor woman from Ecuador or Lithuania, working endless hours as she struggles to survive and support her family on the minimum wage or less, who would find my corpse in a bathful of blood as she did the morning shift. I couldn’t do that to anyone. 

Then there’s the Dignitas route, but I gather it involves going through an awful lot of tedious process before they permit you to fly to Switzerland and end your life in a bleak, bare little flat somewhere, supervised by people who sound distinctly creepy (the novelist Susan Hill, in whose recent work end-of-life issues have been a central theme, offers a fascinating account of a Dignitas-type exit, aborted at the last minute, in one of her excellent Simon Serailler detective novels; this has completely deterred me from ever trying it myself). 

Which brings us to plan B the second or, as I like to call it, The Northern Lights Optimal Exit Strategy.

If I hadn’t inconveniently been diagnosed with cancer this autumn, then I would have found a way to go and spend a few days up in the Arctic circle, watching the Aurora Borealis, or Northern Lights: this year they have been predicted to be particularly active, and a sight of quite historic splendour. There have been lots of special holiday brochures offering trips to see the Northern Lights, in Norway, Finland, and Iceland, combined with cross-country skiing, or whale-watching or, my own preference, husky-sledding, something I have long desired to do. 

Why haven’t I done it, then? What, exactly, was stopping me? I could have done it at any time in the last 10 years when I was blithe and fit and solvent and healthy and cancer-free – epic Fo fail. Please note, reader, for your own reference – ‘carpe diem’ applies to you, now.

So, this is The Northern Lights Optimal Exit Strategy: 

1. During the winter months take a plane to somewhere in the Arctic circle ideally suited to viewing the Aurora Borealis – perhaps northern Finland. Before you board, remember to purchase large bottle of vodka (or other potent alcoholic beverage of choice) in the duty free shop, and some strong pain-killers from the pharmacy. 

2. Transfer to luxury hotel somewhere within the cold, snowy northern forests, with facilities for husky-sledding (or other activity of choice) and Northern Lights-watching. 

3. Spend a couple of days husky-sledding. Do NOT fall in love with dogs, start worrying about what happens to them when their sledding days are over,  and immediately metamorphose into classic demented Englishwoman of a certain age abroad, determined to set up sanctuary for retired sled dogs – remember, you will be too ill by this point to make this a feasible alternative life plan.  

4. Once you have husky-sledded (or whale-watched – I think cross-country ski-ing would probably be out of the question by this point for most terminally ill people) to your heart’s content, make preparations for your imminent exit by writing notes to your loved ones, explaining that it is a far, far better thing you do, etc., and entreating them not to be cross about your chosen exit strategy.  

5. Eat a delicious and carefully chosen last dinner. Unfortunately, if you’re in northern Finland, this might involve eating reindeer, which would be a bit of a minus, but bear in mind that it would not be possible to carry out this plan in somewhere with greater culinary options, e.g. Paris, or Notting Hill - you can’t have everything. If this is really a problem for you, then you could always bring a small hamper with you from Fortnum and Mason. They do an excellent chicken, apricot and pistachio raised pie, or did. That would be nice. 

6. Wrap up well, and pack a small rucksack with a sleeping bag, alcohol of choice, painkillers, snacks and perhaps raised pie from Fortnum’s (see above). 

7. Quietly leave the building and, avoiding the places where organised Aurora Borealis-watching takes place, trek off to somewhere quiet, deep in the forest, where no one is likely to find you before morning (it might be best to scope out such a place in advance).

8.  On reaching your chosen spot, spread out sleeping bag as picnic blanket, and unpack provisions: vodka, painkillers, nuts, olives, and chicken and apricot pie (am liking the pie idea more and more – why not go to heaven via Fortnum and Mason? Sod the reindeer carpaccio, it’s always good to have a picnic).  

9. iPod optional here – you may care to go out with a musical accompaniment, but my own inclination is for the deep, deep silence of the Arctic night, and the Musick of the Spheres. 

10. Eat and drink your picnic, which will leave you happily anaesthetised against the encroaching cold - in northern Finland in January it will be very cold indeed, probably lower than -30 degrees Centigrade. Lethally cold, and that is the whole point. You may drink as much as you like, because there will be no hangover. But not too much, because the cold is going to kill you, not the booze and the pills. They are merely there to take the edge off, and to send you into that good night in a cheerful frame of mind, and perhaps just very slightly rat-arsed. 

11. Settle down to watch the incredibly beautiful pyrotechnics of the Northern Lights and, while you are so doing, freeze quietly, painlessly, and unobtrusively to death in a state of aesthetic bliss, inconveniencing no-one.

You will not even feel cold, because the beauty of hypothermia is that your brain tricks you into thinking that you feel warm. My research on this subject tells me that freezing to death is definitely not unpleasant. 

12. In this manner - well-fed, comfortable, warm, pain-free, and a little tipsy - you will gradually lapse into unconsciousness, and journey thence on a one-way trip to Eternity, whilst looking at one of the most beautiful sights on Planet Earth.  

Excellent plan, no? 

I have thought about this question a great deal, and really can’t think of a better way to go. I do appreciate that someone will have to find you, but they will at least be from the emergency services, alerted to your disappearance the next day by the hotel management. They will be accustomed to this kind of thing – drunken people freezing to death in the snow is a very common cause of death in Scandinavia and Eastern Europe – and your body will be a neat, well-wrapped, deep frozen package, which will not cause anyone undue distress to encounter. Remember to leave adequate funds available for the repatriation of your body, and if a family member feels impelled to come and fetch it, at least they’ll get the opportunity to see the Northern Lights. 

I can see that the Finnish tourist board might not be thrilled by a rush of suicide tourism, but I think it’s probably a fairly specialist niche market, anyway. And you could probably do a budget version of this in the Cairngorms, or somewhere similar, although it definitely wouldn’t be as pretty.
 
This, then, is the real Fo Plan B: I sincerely hope I'm not going to have to use it, but it comforts me greatly to know that it's both practical, and eminently possible.
 
It's always good to have a Plan B.
 

 

 

9 comments:

  1. Please dont entertain suicidal thoughts as more you ponder over them more they will appear as an easy escape from your illness.I will suggest rhythmic form of breathing meditation as a cure for your anxiety .Please try to procure "Complete Works Of Swami Vivekananda". Go through them completely . If things dont work out , well , in that case you have your plans to fall back upon .Please give it a sincere try .

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    1. Thank you, Sumeet, but don't worry - I am nOT feelnig in the least bit suicidal. this was merely thinking about loud about what to do if my illness should ever become terminal, which I sincerely hope it won't. This was not about suicide, it's about how one might manage one's own exit if death was very close, anyway.

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  2. Omigawd I feel like I am in Dr Zhivago, you know, the really cold scene. Last summer I took the decision to have one of the street cats (okay, he was coming inside on cold nights) I looked after put down as there was little dignity left for him and, selfishly, I hope someone will do the same for me should need be one day. Whether or not I myself can put another animal down is another issue...Anyhow, I looked online for options to have available and only came up with 'it's never that bad,' 'you should get some counselling,' and one about some guy's weed whacker that gave out on itself...If life is not worth living, there should be feasible options. I've thought a long swim would be good though, yes, there is the bloated body to deal with, gross. Freezing in Finland - I'll add that to my own list! My grandmother and aunt took their own lives, 20 years apart. For now, I have a job and a market to go to - are you sure you don't want some spangly shalvar to go with your head gear? Seize the day, yes! Market-day hugs, xxx

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    1. Actually, I LOVE those spangly trousers - I've always loved them. The only reason I never bought any was because my Turkish friend Tugce swore she would disown me if I ever wore such a thing..

      When the nomad girls come to town on market day in Ayvalik dressed up in their finest, they're like a flock of shimmering, spangly birds...

      So, yes please! xx

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  3. My own plan B is a lot more prosaic - a bottle of morphine I managed to secrete when being treated for severe pain. But I think it could be usefully combined with a camping trip to somewhere lovely and remote - thanks for the idea.

    I disagree with Sumeet. Knowing I have a feasible plan B is entirely different to entertaining suicidal thoughts - in fact, it is a source of great comfort and has freed up my mind from the hamster wheel of "what will I do if...? and my energies from fighting against lack of control over my life, allowing me to face the present and possible future with a much more relaxed and positive attitude.

    As for hair, I was really sorry to hear that yours was starting to protest yesterday. However, if the worst came to the worst, total loss would allow you to experiment with the hairstyles that you always wanted but were never possible/suitable with your own hair (known as wigs) while waiting for your own to grow back.

    xx

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    1. That's exactly how I feel about it - once you have a Plan B you can proceed happily in the knowledge that it's there if you ever need it. One thing I have really learnt from this nightmare so far is to avoid at all costs being at the mercy of overly rule-bound and/or unempathetic medics in extreme circumstances. If it should come to dying, I am not going to beg ANYONE for relief.

      The lack of control thing is so hard, isn't it? Every little tiny vestige of control that you can get back into your own hands is a minor triumph. xx



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  4. I would happily accompany you on that picnic, just to get you started. Then I would head back to my luxury suite and alert the authorities the next day that you had not returned. I believe everyone deserves company at the end! Far from being morbid, I find your thinking realistic, healthy and fanciful all at the same time.

    As for the hair, so sorry. I've never seen you, Caroline, so it doesn't make a difference to me. You WRITE just the same! But I know it matters to you, so I am sorry.

    Janet

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  5. Thanks Caroline for the heads up - another thing to add to me 'things to think about sorting out...' list. I'd heard similar from a friend about an elderly relative's plan to go peacefully in the great outdoors (lake district I think) - and there seems to be some evidence to hypothermia not being unpleasant.

    My contact so far with the medics has been pretty benign (ha ha), but agree about the control thing. My current hangup is going for test after test and having to keep asking what it involves (test is at 3.30, but then someone mentions that you actually need to be there an hour beforehand... well perhaps just tell me to be there at 2.30 then). And what to wear....! An unnecessary stress. Anyway its very rude of me to rant all over your blog.

    Thanks too for the tip off about Susan Hill, I'd never considered her books but might give them a go. I love a good crime novel to curl up with.

    Commiserations about the hair, after all the effort you have put in.

    Deborah (@leftontheshelf)

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  6. This is a great blog, and I feel your pain as I'm going through similar myself. I'm 25 and at first experienced a lot of anger - I was too young, I kept thinking - but now, every day that I can remember to wash clothes BEFORE tumble drying them, put cereal in the bowl and tea in the mug or remove socks prior to showering is a good day. (Stupid chemobrain). Things go up and down, but mostly on the up and I hope the same for you too. I've thought those Plan B thoughts, then get distracted. I want to do too much to consider how I might go - there's the masters to finish, the book to publish, the world to travel, the puppy to train and grow old(er) with. The world isn't ready for me to leave it yet, I don't think!
    As for the hair, you never know - I used to have lovely thick waist length hair, but that all came out. Turns out, I have a rather nice head and can pull off the skinhead look with relative ease. There are scarves and wigs, which you might find good for you, but I found it easier to not give a flying monkeys for all the stares I get!
    With many wishes for a resounding recovery,
    Evelyn
    evelynrose.wordpress.com
    @EvelynRoseFict

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