Dying to be Dead?
You’ve probably, hopefully, never had cause to visualise yourself asking a Doctor the proverbial ‘How long have I got’? question.
Chances are, if you had imagined the scenario, you got it wrong.
Reason being: circumstances change with wilful randomness – both for yourself and the Doctor.
Yet Lord Falconer wishes to see passed a Bill with dire consequences for the answer to that question. He wants those who have been assessed as terminally ill – deemed likely to die within six months – to be given assistance to speed up the process. To die on a day of their choosing, with the assistance of Doctors.
Back in January, the 13th to be precise, I presented myself in front of a Doctor who is apparently an expert in the particular cancer I have. As expert as you can be in the very few cases that present themselves each year. More expert than I, that’s for sure.
She had in front of her the result of the ‘white heat of technology’ – a picture of my insides. Clever stuff. It told her that my cancer had spread from my womb to my ovaries, from there to my bowel – and now my lungs. Peering over her shoulder, I could only take her word that this was my insides we were looking at, with little ‘blinking lights’ identifying all the unlikely spots the cancer had now travelled to.
She had the benefit of what she could see sitting in front of her; me, gasping for breath, struggling to walk, pains in a variety of places that I could have done without, and desperately tired. All things considered, I appeared to be in line with the picture she had on her screen…
She adopted her ‘this is no joke’ expression and solemnly informed me that I was now terminally ill. There was nothing more that could be done for me. The answer to my question, from her experience, was ‘probably a couple of months’. Five little words that land like a thud in front of you.
I have to say that my first reaction was one of ‘Jesus, a couple of months of feeling like this”?
She said she would ‘make arrangements for me’. I was too stunned to ask what those arrangements might be…
Before the end of that week the first of those ‘arrangements’ arrived on my door step. Bright and breezy. There was a bit of paperwork to get out of the way: ‘best to do it first’ she said. A type-written sheet appeared on the table with a bright red banner across the top. The dreaded ‘Do Not Resuscitate’ order. I had never realised that in these days of medical negligence claims against the NHS, your first task on the road towards dying is to make sure that no one gets to sue the NHS for not resuscitating you, nor can you sue them for resuscitating you when you didn’t want to go on living. First things first, as she said.
Then we got onto ‘where did I want to be’ when the ‘inevitable’ occurred. (These girls have a positive Thesaurus of alternatives to the word death – it never crosses their lips). Hospital, Hospice, Home? ‘Well, of course I ‘will be’, not ‘want to be’ – at home’, I said. I have not the slightest intention of going into hospital or even a hospice. Lips tightened slightly – hers not mine. ‘Could I have a look at your bedroom to see if it is suitable’, she said. I’m sure this bedroom has been found suitable for a number of people to die in since it was constructed in 17 something or other…
Regular readers will know that since last October Mr G has been working like a demon to renovate this cottage, a full scale renovation, and we are still in the throes of it. Moving doorways has necessitated climbing through the back of what used to be a wardrobe to get to the new bedroom door…I doubted that it would be suitable for her purposes…
But hey, what did I care? I was happy here; Mr G has created a wonderful bedroom from where I can watch the boats drift past, it was warm, it was comfortable, and it bore the unmistakeable marks of his craftsmanship – I couldn’t think of anywhere better to end my days. Was it going to be up to the demands of a full scale NHS tick list? Probably not – my resolve tightened as we climbed the stairs…
One more word that annoyed me and I was going to ask her to leave; somehow I managed to bite my tongue as we ran through the difficulties of installing a bath lift in that little bathroom tucked under the eves of the thatch – why would I need a bath lift for God’s sake? She didn’t answer. She thought a bed downstairs would be ‘easier for the nurses’. Maybe, but I wouldn’t be able to see the boats any longer…
The following day, I got a phone call from the hospital telling me to collect a prescription from my Doctor – they had discovered there was something else wrong with me as well as the cancer – hypothyroidism if you are interested. Causes breathlessness, pains in the back and make you extremely tired….
Two days later, more of the ‘arrangements’ arrived. A Blue badge for my car, signalling my ability to park wherever I damn well pleased, and a letter awarding me an extra 80 pound a week on my pension…’because my Doctor had informed them I was terminally ill’.
By the time the palliative care lady had returned to check on my progress towards death’s door, the thyroid drug had worked it’s magic and I was improving dramatically day by day. I put down my paint brush and made her a cup of coffee. Different lady this time, with a sing-song estuary accent. ‘Had I made a bucket list’ she inquired. ‘Yes, I had – to finish painting this kitchen, and get on with the garden’. ‘Ooooh’, she cooed, ‘ well don’t you want to travel abroad, or perhaps visit some family – have you got family’? ‘What exactly do you ladies do’ I asked. ‘Oh well, we organise your end of life care’.
Indeed they do – Monday to Friday 9am to 5pm but not including bank holidays…..’what happens if I decide to die at 6pm on a bank holiday’ I asked. ‘We have a telephone message service’. (Dear God!) (‘Hello, this is ‘Terminal No 896’, it’s 6pm on Easter Friday and I’m just letting you know…)
They are not alone in trying to organise my departure (I can do euphemisms too…) another week passed, another flower-bed got dug, and the ‘District nurses’ called…they too wanted to inspect the house. She did have a feint hint of a sense of humour as we climbed through the back of the wardrobe, but it didn’t last long. She was there she said ‘because Dr X was concerned about me’ – she was talking about the GP I’ve never yet met, never had cause to. It’s gratifying to know that a GP I’ve never met is concerned about me – but isn’t it all a tad ‘premature’. I’m fine, really I am. What will be, will be – and in the meantime, I’d just as soon get on with living rather than making extensive plans for dying…we agreed that she’d phone before coming again, and indeed she does phone, once a fortnight, regular as clockwork, and the answer is always the same…I’m fine, thank you.
The March scan came and went; a particular pleasure, for it was, as you will have worked out by now, two months since ‘two months’ was pronounced. There might have been the faintest smirk on my face. The tumours had doubled in size – but hey! the garden was almost completely dug over; the greenhouse had been steam cleaned and was even now rearing tomatoes, the hay field had been bludgeoned into something resembling a lawn, and Mr G had conjured up a remarkably fine kitchen downstairs….
In May I had another scan – again the tumours had doubled in size from March, but you know what? I was feeling better than ever. Mrs Consultant said that I had three treatment options, two she didn’t recommend, and the third involved doing nothing…I left feeling rather dejected. The following day – the following day! – a kind reader sent me a paper cutting showing that the oncology department at the hospital I go to had, that very day, been put in some sort of ‘special measures’ on account of the poor service they were offering cancer patients…
On the Monday, I got a phone call from Mrs Consultant. She ‘had been reflecting’; now she thought there might be something they could do for me – there was a drug which had had spectacular success with a different cancer, in a different place – they had no idea whether it would have any effect on me, but would I like to give it a try? Its called Letrozole, if you are interested.
I shan’t know until the end of next week whether it is actually doing me any harm, and not until August 16th whether it is actually doing me any good…..in the meantime, its making me feel like a piece of ****, which is why I’m not writing very much! I’ll make a decision in August as to whether I persevere with it or not.
I do know that next week marks the end of the six months in which the consultant confidently thought I couldn’t possibly still be alive, and it has made me reflect on what I would have done had Falconer’s bill been made law. I shall be celebrating it by going to the FACT conference in Cardiff this week-end, and my 67th birthday on the Monday…
I felt terrible, I looked terrible, back in January when a consultant certified that I was terminally ill. I don’t dispute that I am – the scans don’t lie. But according to Falconer’s Bill, I should have been entitled to ask a Doctor to make up a prescription of lethal drugs to kill myself with.
People will say – ‘its’ OK for you, you are one of the lucky ones – what if you were paralysed’ – well Falconer’s Bill would do nothing for me if I was not terminally ill – paralysis is not a terminal illness.
‘But what if you hadn’t had Mr G to care for you, if you were all alone in the world’ – if the 9 – 5, Monday to Friday palliative care service was all I had to rely on, that I would have found depressing – are we really suggesting that ‘assisted dying’ as bumping you off early is called, is the answer to depression caused by isolation and a tick box approach to care?
‘But what if you had been in pain’? Then I would have taken more pain killers than would have been good for me, and probably a bottle of single malt whiskey as well and if that had assisted me in dying then so be it – but that is a world away from the DNR notice, the inspections by palliative care, the Blue Badge and the 80 quid a week arriving accompanied by a sheaf of papers asking if you would like your consultant to make you up a little cocktail for later….
This Bill won’t do anything for those people who genuinely can’t commit suicide unaided, none of the people who go off to Dignitas in Switzerland are incapable of committing suicide in England – they all have to be certified fit to travel and to take medication unaided – it won’t do anything more than speed up the process that begins when you are told you have ‘less than six months to live’. It seems to me to be nothing more than a sop to those who wish to believe that you have control over your life, not God, not fate.
I can’t imagine anything more depressing, nor less likely to have made me enjoy the last six months than being handed the paperwork that enabled me to chose which day I died on. Which would surely have been before today?
As it is, the sun is shining, the yachts are gliding past my office window, and I am off to the Fiat garage – some little scroat has wrenched the door handle off my precious Fiat 500 – and I need it to be able to drive to Cardiff for the conference on Saturday; and back for my birthday on Monday. Mr G is taking me to a rather superb fish restaurant.
I’ll die when fate dictates, I’ve no wish to decide which of these days I want to miss out on.
The Bill, of course, will be decided by people who have no idea what it is like to be told you have two months to live…nor how precious every day becomes. Especially six months later.
More grapes for the Raccoon please. They seem to be working a treat.
- Joe Public
May 26, 2015 at 2:04 pm -
Long may you continue to entertain your readers.
Letrozole may be making you feel like a piece of ****, but thankfully it’s not supressed your creative humour.
I (and probably most other regulars here) do believe your grim determination to ‘hang on’, is madame’s two-finger salute to those who have to guess an expiry date.
- Carol42
May 26, 2015 at 2:17 pm -
Glad to hear you are doing ok Anna, have you considered changing your hospital? The one you have doesn’t sound much good to me. I am a bit conflicted about the right to die but I would like the option. You could do it yourself of course but it would be a bit hit and miss unless you knew exactly what to take and how much plus you couldn’t risk having you family there in case they were suspected of assisting suicide. Dignatas is expensive so restricted by income and, since you have to be fit to travel, time restricted too. If having made up your mind I cannot see a good reason why it is not available here with strict safeguards of course. Clearly despite the Cancer you have a reasonable quality of life but not all do and I have seen some truly awful deaths. No doctor can tell you how long you have , my cousin was given a year five years ago and she is still here, like you making the most of her life despite some very harsh treatment, I honestly don’t know how she does it. Good luck with the new drug fingers x it gets you back into remission, things are changing so fast and immunotherapy is looking very promising too. Enjoy your life and worry about anything else if, when it happens. Stay as well as you can.
Carol - Den
May 26, 2015 at 3:35 pm -
Anna. What to say? I admire you so much and think I love you – Don’t tell Mr G
Your admirer,
Den.
- Mudplugger
May 26, 2015 at 3:36 pm -
On January 13th next year, when we all gather in the Raccoon Arms to celebrate the first year of terminal survival, we’ll raise our glasses to the Landlady with the same spirit that she has raised a couple of fingers to both the tumours and the ‘experts’. We all have to leave sometime, but it doesn’t always go according to schedule – I suggest we plan an annual celebration in the Snug and continue to salute our Landlady with two-fingers proudly raised for as long as it takes.
Keep the faith and ongoing wishes best to you and Mr G. - The Blocked Dwarf
May 26, 2015 at 4:27 pm -
.in the meantime, its making me feel like a piece of ****, which is why I’m not writing very much!
and yet you take time out from dying to email those of your regulars (I know I’m not the only one) who haven’t been in for a drink for a couple of weeks just to check that they are ok, to offer any aid or assistance you can and to remind them that they have your cell phone number just in case?
If I were Mr G and you weren’t so ill, I’d slap you upside the head with a soggy beer mat, girl.
- Ancient+Tattered Airman
May 26, 2015 at 6:14 pm -
Anna, forgive me but I feel you are more a tigress that a raccoon. Confuse and confound the lot of the naysayers! My kindest regards to yourself and of course Mr G.
- The Blocked Dwarf
May 26, 2015 at 6:44 pm -
Returning to the whole ‘Right to Die’ debate, what annoys me the most is that it is , by and large, unnecessary. Especially when ‘religious’ arguments get touted and spouted. Not so long ago people started wearing neon rubber bands around their wrist emblazoned with “WWJD?” on them. What Would Jesus Do?
Well, after many years of studying the Holy Scripture, I can reliably say what Christ would have done; he would have healed the lame, the palsied, the blind and cancerous. If we as a society put as much money, time and effort into finding a ‘cure’ for spinal injury as we do into, say, Hi-speed trains to Geordie land or Shiny new missiles named after toothpaste brands then I reckon we could find a cure or a technological ‘work around’ (I mean like that Star Trek episode where Worff breaks his spine and is fitted with ‘transmitters’ to relay the nerve signals) within a really short space of time…years not decades.
Instead of spending countless millions funding lobby groups for the pharmaceutical industry like “CancersRus-your tumour keeps us on the gravy train” , we put that money into real research to defeat cancer and not worry about preventing it by banning one thing after another.
Apparently a couple of Czech doctors have already found a possible ‘cure’ for severed spines ( involving injecting nasal cells into the damaged area of the spine) , would it be too much for the EU to drop a ton of money and resources onto them? If they had come up with a new and novel way of killing people they’d probably already be ensconced in a multi-billion $ lab with working air conditioning in a secret bunker somewhere in Roswell.
Yeah ok, I’m rambling, but this really pisses me off. Why should some bloke with a neck tumour even have to consider ending it all?
As a former girlfriend was wont to say : “FFS! We put men on the F***ing Moon and yet they still can’t cure the common cold!” No but the recent ‘ebola’ thing did show how quick ‘cures’ can be found if TPTB suddenly want to.
Of course not all crippling/terminal illness can be cured by simply beating it to death with a big suitcase full of money but I bet a lot of them could.
When I am made King Of The World then I shall proclaim to the governments under me : “You want the next new shiny bit of Mega Death dealing German made hardware then first make the lame walk and the blind see, then and only then can we talk about you being allowed to buy things that can maim, cripple and kill”.
- Don Cox
May 27, 2015 at 11:54 am -
Throwing money at research doesn’t necessarily speed things up. It can produce a great deal of mediocre work by third-rate scientists who have joined a campaign that is good for their careers.
One major problem in cancer research is the endless variety of tumours. No two cases are exactly the same. There will not be a cure for cancer, but there may be a thousand cures for a thousand different types of cancer.
- Don Cox
- Mike
May 26, 2015 at 7:49 pm -
Anna
I think your post ought to be obligatory reading for all of those involved in terminal care. The bit that really struck me was that your room ought to be made more convenient for the nurses…
- Mrs Grimble
May 26, 2015 at 8:28 pm -
“Apparently a couple of Czech doctors have already found a possible ‘cure’ for severed spines ( involving injecting nasal cells into the damaged area of the spine) ”
The team were Polish, and the report doesn’t mention that Darek Fidyka, the patient, was one of three who received this treatment – the other two had only minor improvement. And Fidyka is not really walking – he has to use a frame, has had lots of physical therapy and still has only partial feeling in his legs. We’re not told whether he had any feeling or muscle control in his legs beforehand.
This research has actually been going on since at least 2000, when Australian researchers used the technique to restore some movement in the hind legs of paralysed rats. Since then, it’s been tried on humans with hugely varying results. The best outcomes were with patients with only partially severed spinal nerves, who already had some movement in their legs – we don’t know if Fidyka’s injury was this type – and even they ended up no more mobile than he presently is. So although this treatment will undoubtedly restore some mobility, it isn’t (yet) a miracle cure for paralysis.- The Blocked Dwarf
May 26, 2015 at 8:50 pm -
So although this treatment will undoubtedly restore some mobility, it isn’t (yet) a miracle cure for paralysis.
My point exactly ie not yet there but imagine what a C-5 Galaxy full of cash could do? Oh sorry, times have changed and the C-5 Galaxys are passe…we have the A400M that cost a mere €20bn to develop and looks like costing a lot more to redevelop. €20bn would buy an awful lot of cold beer and paralytic mice. No idea what nasal stem cells cost though.
Oh and ‘restore some mobility’ or remain totally paralyzed…tough choice, difficult one to call. Not.
- JimS
May 26, 2015 at 11:27 pm -
The wonderful thing about technology, (and the engineers that apply it), is that it, (and they), know(s) no boundaries. The electronics that guided the first space flights led to the present day ‘chips with everything’, for instance.
If all the money spent on things you don’t approve off was routed instead to medical research there would be an awful lot of unemployed engineers and an awful lot of medical researchers staring at body fluids wondering if they were better out than in because they sure as heck wouldn’t be able to do much else without the ‘spin-offs’ from other fields of technology.
- The Blocked Dwarf
May 27, 2015 at 1:11 am -
If all the money spent on things you don’t approve off
It isn’t a question of whether I approve of anything or not, and I certainly appreciate all the useful spinoffs military technology has given us…I doubt , for example, computing would have advanced so rapidly if there hadn’t been a need to break German military codes, to say nothing of ArpaNet . Pretty sure some of the drugs that have saved my life on various occasions have military origins too but it is too late to google.
But if we don’t replace Trident for a few more years , would the defence of the Realm be seriously compromised? Really? Is anyone really going to risk an attack on the UK because they think our arsenal is out dated and the bombs may not function? British subs being stocked with possibly ‘dodgy’, and past their Kill-By date, weapons is probably a very good reason not to fuck with us. And no, I am no kind of CNDer or even a pacifist.
What if Spain (?) doesn’t replace that A400M that crashed the other day? Would Spain be any less ‘safe’? Will hordes of Orcs descend from Mordor because they know it might take the Spanish Armed Forces a few hours longer to transport whatever they ‘needed’ an A400M to transport? No idea what an A400M costs but it has to be ‘telephone numbers’. What dire consequences would result from Spain simply saying; “sod replacing it, we’ll put the money into nuking cancer instead”? Would the aerospace industry go tits up? Would technological progress be halted? I doubt it.
- JimS
May 27, 2015 at 9:23 am -
If we don’t replace the Trident submarines then there won’t be a UK submarine builder when we want to replace the Astute class boats (and we DO use attack submarines to fire cruise missiles).
The idea that budgets can just be switched from one activity to another at will is just plain daft. Sure you can close a factory and lay off workers in the space of a month but you can’t then ‘switch on’ medical research. I doubt if the research programmes really are fund-limited anyway.
My point is that technology knows no boundaries and that the transfer between fields is unpredictable. It is not impossible that problems presented in the design and manufacture of the A400M have produced solutions that are directly applicable to medical research. This last week there was a TV programme about blood in which engineers working on fluid flow problems (the stuff that makes A400Ms fly) had created a new design of stent that didn’t ‘fur up’. Of course we could have sacked all the engineers and just let the surgeons carry on with hacking out bits of blood vessel over and over again with their flint knifes.
Perhaps next time we have a major disaster someone somewhere might be glad of the carrying capacity of the A400M?
It is worth looking up ‘The Story Of The Pencil’, a tale of how various unrelated activities somehow come together without planning to produce pencils. Similarly my nephew always wanted to ‘save the world’ and I keep telling him that we all do our bit – the brain surgeon needs the floor cleaner, the floor cleaner needs the bus driver. I’m afraid your directed economy just won’t work.
- The Blocked Dwarf
May 27, 2015 at 12:59 pm -
there won’t be a UK submarine builder
and your point is? We shouldn’t buy in from abroad?
Sure you can close a factory and lay off workers in the space of a month but you can’t then ‘switch on’ medical research.
No one is talking about shutting whole factories (aside from when I’m in ‘rant’ mode), you know what they say ‘a million here, a billion there and very soon you’re talking real money’. Spain doesn’t replace that A400M -which will probably still be grounded the next time Nepal goes shaky – maybe the UK buys one less trident submarine, perhaps the Bundeswehr could order a couple less helicopters to replace the ones they have that won’t fly (which apparently is most of them). Apache gun ships fly round here sometimes, if one of them crashed over the fields of East Anglia and they didn’t replace it….Medical research doesn’t require switching on, it is on going. It does however some need redirection and some joined up thinking with other disciplines (that’s where ‘your’ engineers could really make a difference). Slowly we are getting to see geeks and doctors working together – there is that robot hand for paraplegics that usb ports into their skulls (one does hope WIFI is the next step).
I doubt if the research programmes really are fund-limited anyway.
Walking into my barbers this morning there was a new poster on the door. “Cycle to Beat Polio” , on the radio in the store adverts for a ‘Fun Run’ to beat breast cancer.I’m afraid your directed economy just won’t work If it were really a matter of economics then you’d be right but , TBH, it all has very little to do with the amount of monies , rather the amount of ‘Will’ , what priorities TPTB set. Does anyone really think Hs2 is going to usher in a new dawn for mankind or even just prosperity for Geordie Land (ie anywhere North of the M25)? Hell, maybe it will, what do I know but I sure as **** doubt it.
- The Blocked Dwarf
- JimS
- The Blocked Dwarf
- JimS
- The Blocked Dwarf
- Mrs Grimble
May 26, 2015 at 8:32 pm -
Anyway Anna, enjoy your retirement, however long or short it is. Long may you rant, complain and be thoroughly difficult! And long may you enjoy your lovely bedroom and the even lovelier Mr G.
I’ll raise a glass of ginger beer to you tonight… - Bellevue
May 26, 2015 at 8:32 pm -
You are an inspiration to us all. Keep well and keep smiling.
- Moor Larkin
May 26, 2015 at 8:34 pm -
£80 a week extra on your pension?
I so hope you live forever… - Single Acts of Tyranny
May 26, 2015 at 8:46 pm -
Keep strong brave girl, the gambler in me wants to buy you a Christmas card.
- Michael J. McFadden
May 26, 2015 at 9:48 pm -
Anna, you and your writing are an inspiration to everyone.
Thank you for being there and doing what you do.
– Michael
- Henry the Horse
May 26, 2015 at 9:56 pm -
Great piece. I’m in complete admiration of you Anna. Keep strong and enjoy the boats.
- adrianS
May 26, 2015 at 10:40 pm -
Keep as strong and pain free as possible, your writings have been so enjoyable. It’s to your credit that your looking death in the face with a determination not to let it win too much and break your spirit.
A virtual glass of port for you - Stewart Cowan
May 26, 2015 at 11:19 pm -
I agree with the Dwarf; it is unnecessary legislation for the reasons he gives and others. It all comes down to money – saving it – and it’ll be like abortion and all the other ‘slippery slopes’ where millions will end up ending their lives before their time.
I suffer from depression and I know there has been talk of depressed people being helped to separate their souls from their bodies via ‘assisted suicide’.
“I shan’t know until the end of next week whether it is actually doing me any harm, and not until August 16th whether it is actually doing me any good.”
That’s my birthday, so I hope for good news from you. Basically, I only read three blogs now incl. yours and will probably give up my own, so it has to work.
WWJD? – one answer is that He has already done it at Calvary: that those who believe will not perish but have everlasting life.
You help me realise I shouldn’t complain about my lot as much as I do. Thank you for your strength in being able to do that.
- Pericles Xanthippou
May 26, 2015 at 11:54 pm -
Horrified, Anna, to read of the recurrence of these tumours but glad — although not entirely surprised — to see you’re ahead in the race.
As you say, Falconer’s bill, whilst it might help the terminally ill with (officially) not more than six months left, would do nothing for some-one in Mr. Spector’s situation.
Although I cannot know, I imagine that, told I had under six months to live, I should be happy to live it out and — as you suggest — to take the morphia needed to control any pain, shuffling off (no-one used that yet) as fate dictated. On the other paw, the thought of years paralysed would be simply intolerable; I’m not convinced I could continue if unable, e.g., to go to the head on my own.
Very best wishes to you and Mr. G.
ΠΞ
- SagaxSenex
May 27, 2015 at 7:25 am -
Please keep spittin’ in their eye. Please keep parking on double yellow lines.
Hope the Fiat people can find a nice matching door handle for you.
Hope the conference is enjoyable.
Hope the plants grow and the weeds quail.
Thanks for the inspiration.
Please report to your fans as often as you can.
Just had that conversation (well, in Dutch) last week.
Been briefing my dear daughter since then.
Look after yourself, you’re an inspiration. - Bill Sticker
May 27, 2015 at 8:14 am -
I think I’ve made a comment in this vein before when the grim reaper seemed to be not far from your door Anna. Last year sometime as I recall. So much for ‘six months’.
The best way of living longer is not allowing yourself to do the ‘D’ word.
- Billy the Fish
May 27, 2015 at 8:43 am -
I think I’d rather take a handful of months as an intelligent, thinking raccoon than a lifetime as a joyless NHS robot.
Carry on carrying on, Anna; the therapeutic power of sheer bloody-mindedness cannot be overstated! Plus, it doesn’t half annoy the ‘experts’!
X - GildasTheMonk
May 27, 2015 at 8:44 am -
Best wishes Boss. Hang on in there
- Magwitch
May 27, 2015 at 9:21 am -
Always a pleasure to see your name in the authorship spot at the top of the post – “the old girl’s still with us then.”
So they’ve handed you one of those ubiquitous DNR forms have they. Just a few years back these were spoken of in hushed tones, like rare manuscripts; we’d heard about them but none of us had ever seen one. Now it seems that anyone over 65 with “an illness” has got one. Apparently, after 20 years as a paramedic, I’m no longer allowed to use my professional judgement about resuscitation. If I were you I’d frame it and hang it in the toilet. That’ll upset nursie and friends.
Best wishes to you and Mr G. Long may you continue to show two fingers to death and the establishment.
- Backwoodsman
May 27, 2015 at 11:05 am -
Good girl, Anna !!!!!!
- Ms Mildred
May 27, 2015 at 3:56 pm -
There is no doubt that when the NHS persons come round being very bossy in your house about furniture placement , safety, which room you can use and so on it can be very infuriating . They mean well and it is good to see some of them. The last time this happened to us. I did an SOS to a handy friend and he came soon enough and put things back in their places. You really are a bold fighter Anna I hope you can be with us far longer than has been indicated to you. Your cottage seems to be coming along well. What is needed now is some warmer and less windy weather so you can enjoy the garden more than seems to have been possible so far.
- Dan
May 27, 2015 at 5:29 pm -
Much of what you write about dying at home mirrors the experience my wife and I had this time last year when she was dying of secondary breast cancer in the lungs and liver. She wanted to die at home, but found that many of the professionals were initially sceptical that we could see that through. Harriet wanted to keep living until she couldn’t any more – drawing, gardening, listening to music, sharing in family life – and she managed to do all of those things right into her last week. We politely asked the palliative care nurses to stay away unless we called them. I regularly reassured them on the phone that things were fine and that we were coping. They did supply a tupperware box containing hard-core painkillers, syringes etc so that anything that might be needed would be instantly available if we had to call the out-of-hours doctor. It was thankfully never used.
On the morning of her death Harriet breakfasted on peas from the garden; the children went to school. The district nurses visited and we talked about the fact that we all felt her death was imminent. Harriet decided to remove her nasal oxygen tube in the afternoon, taking that positive action herself. After that a local doctor visited and fitted a catheter as Harriet couldn’t get up to use the toilet any more. In the evening I told the children that she would probably die during the night. They said goodnight, goodbye, and went to bed. Harriet’s mother, sister and a close friend where with her. No nurses. No doctors.
Harriet died as the sun went down over our garden at 9.50pm. The four of us were with her as she died, talking to her, reassuring her. I woke the children, told them what had happened. We cried together for a while and then they came to see her body and to say goodbye again. They went back to bed and I called the doctor to pronounce the fact of death, and then the undertaker.
The district nurse team and our local GP surgery were fantastic once they understood that we knew what we wanted, and that we had accepted that the whole death-thing couldn’t be avoided. We partly got that across to them by unashamedly using the word death whenever we could, instead of its many euphemisms.
No-one knows how long you’ve got, what the arc of a particular individual’s disease will be. But that doesn’t mean that we can’t plan for the best death possible.
I wish you a good death, when it comes.
- Carol42
May 28, 2015 at 1:21 am -
Thank you for that, it’s what we would all hope for.
- Carol42
- Michael
May 27, 2015 at 11:21 pm -
Great post. Thank you.
- corevalue
May 27, 2015 at 11:29 pm -
It seems that you and I, Anna, cross paths often. Years ago, in the 60’s when you were around the western edge of Soho, I was living in Wardour Street. I had a close third-party connection to Savile, but never met the man; so do you. And now, I also have a terminal illness, mesothelioma, from building the recording studio where I was camping out in Wardour Street. I suspect we also attend the same hospital for “care” now.
In my case the quality of care has been second to none, as far as appointments and service from staff go. There is a big, big gotcha though. I was offered “palliative chemotherapy”. I thought I’d give it a try, after all the statistics showed an small but significant increase in lifespan to those who took it. I reasoned that if the scans showed no improvement after the third round, I’d give it up, which is what came to pass. THEN, when asked directly about the number of patients who benefited, the oncologist told me 2 out of 10, 2 get worse, and 6 have no radiological change. If those odds had been clearly expressed before the chemo, I wouldn’t have bothered. Two months of dire sickness to have a 1 in 5 chance of living three months longer?
It got worse. The tumour stayed stable, but the prophylactic antibiotic near destroyed me. Three months later, whilst on holiday in Italy, I developed severe tendon pains all over; ankles, knees, wrists, neck. Joints were popping, wrists and ankles felt like I had sprained them, and I had to drive back from the South of France. The symptoms increased, shooting pains, twitching limbs, acute insomnia, short-term memory loss. I’m not a good joke teller, sometimes I forget the punchline, but never before forgot which joke I was in the process of telling!
The antibiotic was ciprofloxacin, read about it here http://www.ciproispoison.com/
When I was first diagnosed, I asked my GP about plan “B”, the end game which we all know will come. I told him I intended to die at home, and I was not going to spend my last days in a drug-hazed stupor with tubes sticking out of me, thankyou very much. So I asked him about ways of self-deliverance, strictly in the negative so as to not compromise him; for example, “Would method X be stupid?” He was of course, horrified, and blustered about how good pain control was these days and their judicious use in the last days. The problem with that, is that I have now spent nine months or so in pain, whilst we try painkiller after painkillers, with none working. Now, like yours, my tumour has found it’s legs again, and that is starting to be painful in it’s own right. Today I have spent slumped over a table (I haven’t been able to lie or sit in an easy chair for several weeks because of pain), after taking a dose of the “gold standard” of cancer care painkiller, morphine. I have a full complement of side effects from it; nausea, vertigo, terrible constipation, in spite of medicines to counter these. It’s as bad as the chemo, so I’m stuck between a rock and a hard place. Pain or sickness?
I don’t trust the pharmacological business with the important business of providing a dignified end, and I certainly don’t want to be exposed to all the bureaucratic busybodies offering “counselling”. I’ll find my own way, thanks.
Congrats on the blue badge. Must have got mine about the same time!
- splotchy
May 28, 2015 at 1:24 am -
You’re entitled to do this any way you want Anna – it’s your home, your symptoms and still your life. If something is suggested to you, you can say: “……and what are the other options?” and then choose or reject as you wish.
I’m greedy and hope you continue to blog, but more eager that you do what you want.
Btw, letrazole is an oestrogen blocker – there are other similar ones. If you don’t get on with one, you might with another?
May you and your garden flourish.
- Alcantara
May 28, 2015 at 9:12 pm -
Anna, you’re an inspiration and a formidable force. You give the Blocked Dwarf a run for his moany, and entertain countless others, myself included. I don’t have the vocabulary to express what I feel, but I hope to approach death as full of life as you are xxx
- Mandy
May 31, 2015 at 5:48 pm -
Anna, we met you very briefly at the end of the FACT conference yesterday. I excitedly sent a message to Mark N saying we had met Anna Raccoon (all early members of Get Steven Home remember your name!) and he sent me a link to this blog. I would absolutely never have guessed you were going through all this. You looked amazing yesterday and, along with the other speakers, were a real help to us members of FACT. Thanks for managing to get there. Thanks for your support of that particular group, which is turning out to be a real source of support for us at a ‘difficult’ point in our own lives. Your position actually puts that into perspective.
Enjoy your birthday.
Enjoy your boat watching.
Very best wishes from my husband and myself.
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