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.