‘Oh my God,’ whispered the woman, on hearing the news. ‘That is so sad. Is she in the Hospice?’
‘I bloody well hope not!’ said Susan, ‘She’s meant to be cycling into town across the park to buy a couple of Indian ready meals and starters and a bottle of wine from Marks and Spencer for the weekend!’
We laughed about it afterwards but it summed up exactly the mismatch between the reality of palliative care (or ‘end of life care’, or ‘care with a life-limiting illness’ or ‘hospice at home’ care) and the common perception. And I have had this perception as well until very recently. If as a social worker I was told that a service user was in receipt of palliative care, and also in receipt of the infamous ‘less than 6 months to live’ form DS1500 (incidentally, can anyone tell me if DS stands for Death Sentence? I asked the woman in the JobCentre and she laughed maniacally and tried to google it but found nothing…) I would immediately have imagined someone palliatively pale, lying in a pale shaded room under a pale sheet, fading away before my eyes into a pale silent death. Probably within days. We laughed about it afterwards but it summed up exactly the mismatch between the reality of palliative care (or ‘end of life care’, or ‘care with a life-limiting illness’ or ‘hospice at home’ care) and the common perception. And I have had this perception as well until very recently. If as a social worker I was told that a service user was in receipt of palliative care, and also in receipt of the infamous ‘less than 6 months to live’ form DS1500 (incidentally, can anyone tell me if DS stands for Death Sentence? I asked the woman in the JobCentre and she laughed maniacally and tried to google it but found nothing…) I would immediately have imagined someone palliatively pale, lying in a pale shaded room under a pale sheet, fading away before my eyes into a pale silent death. Probably within days.
So when Dr Macleod offered us her three treatment options in late April, it would have been lovely if a fourth and equally valid option had been offered in the same spirit, perhaps even as the first option, rather than simply being the default position of refusing radiotherapy and chemotherapy.
I do think it is worth quoting the World Health Organisation definition of Palliative Care here. I love this. They define it as follows:
‘Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care:
- provides relief from pain and other distressing symptoms.
- affirms life and regards dying as a normal process.
- intends neither to hasten or postpone death.
- integrates the psychological and spiritual aspects of patient care.
- offers a support system to help patients live as actively as possible until death.
- integrates the psychological and spiritual aspects of patient care.
- offers a support system to help patients live as actively as possible until death.
- offers a support system to help the family cope during the patient’s illness and in their own bereavement.
- will enhance quality of life, and may also positively influence the course of illness.
Another nice account of it all comes from a New York hospital (Icahn School of Medicine at Mount Sinai NYC,) who write on their website, ‘This type of care treats pain, depression, anxiety and any other symptoms that may be causing distress. The team will help you gain the strength to carry on with daily life. In short, palliative care will help improve your quality of life.’ Nothing to argue with there. Our cash-starved NHS may not reach all these lofty aims but even to hit a few will be amazing and already they are doing pretty well in my case.
Palliative Oncology is also a real ‘thing’, a perfectly valid career option for an oncologist to pursue. Yet it too is hopelessly underfunded (not an attractive research prospect for the drug companies obviously). Research studies into end of life care get approximately 0.03% of all research funding money. (And 8% in Canada and USA.) It does not fit the remit of Big Dramatic Cures and Headlines, it is not a ‘Kick Cancer’s Ass!’ Fundraising Moneymaker. It is not sexy because it is acknowledging that we will all die regardless, and there is a deep reluctance to promote something that does not extend life or cure illness.
Yet the start of the Hippocratic Oath, signed up to by all doctors, is ‘Above All, Do No Harm’. I like it in Latin too, ‘Primum non nocere.’ Another slogan for the T-shirt alongside ‘Unfortunate Dist of Dis’.
Everyone will die. Most of us live as if this was not the case, but some of us know that we don’t need to buy Christmas cards this year. Apparently in the Himalayan Buddhist kingdom of Bhutan the people have a practice of thinking about death 5 times a day and have been named the happiest people on earth.
And OK, that is all well and good. But the reality of knowing I will die probably within six months is not all serenity and acceptance and plucky poignant inspirational blogs. It is also a sucker punch in the solar plexus. Sometimes I cry because it is just so bloody unfair and I am not ready to stop living yet. Although of course I can offer no clarity on when that point might have been reached. 60 is better than 40 and worse than 75. 25 is far too young. After a point the numbers become meaningless. The shock is surely knowing there is only a very short time remaining. A countdown. Perhaps that is the unwelcome information. But again, why is that so troubling?
My main symptoms, other than fatigue (of the type unique to cancer), are related to the three brain tumours and it is not possible to predict how this will pan out as they will continue to grow and at some point will cease to respond to steroid treatment, the only treatment I am receiving. Already my vision is affected, worst when I wake up, and when I am lying down. Dark shapes like the Outer Hebrides, or a long black veil, loom in front of my face, and drift down over my head, causing me to jump in fear. I blink, screw up my face, close my eyes and quickly open them again to try and surprise it all away. There are gentle white clouds of ‘smoke’ that waft towards me like an inconsiderate vaper.
They recede, but one day they will just stay, and then I will have lost sight in one eye. At that point I will don an eyepatch like a pirate. Susan will find me a stuffed parrot and a whole new image will evolve. My other eye should stay ok for a while but that is not guaranteed either. So I may find myself blind. This I cannot imagine. Audio books. CDs. Conversations. Finger food and a lot of mess.
I may lose mobility and fall over. I may lose my memories and not be able to speak about things. I may wet the bed for the first time in sixty years. A dozen other things I cannot anticipate may occur, at any point from now on.
But today the sun is shining and I saw a squirrel on the telegraph wire. Later I meet a pal for coffee. At the end of the month I will be a Married Woman with a Wife and an expensive luxury hotel holiday to look forward to. Very occasionally planes fall out of the sky onto Scottish towns and bombs are detonated in mosques and shopping centres. Lives can change in an instant. Hideous things happen to people all the time in poorer countries where palliative care is a fanciful impossibility in the midst of destroyed hospitals and no doctors and trashed infrastractures and piles of rubble and dodging bullets on the way to school. We are lucky.
This is us now. I will not make the ‘three score years and ten’ but I’m not missing it by much. We are now in the next and final stage, with a curious sense of having arrived, of ‘OK - this is us, now’.
When Susan and I used to have our evening glass of wine we always proposed a toast - to something good that had happened or would happen, or to something absurd, or simply to us. Now we just say Happy Birthday! Despite it being no ones birthday (yet) we are honouring our births and lives. Restaurants across Perth will compare notes about the two eccentric birthday women who appear to celebrate their birthdays every week!
Now I’d love to stay and chat but I need to cycle to Aldi for some organic broccoli, and then to the independent fish shop, before the Macmillan nurse comes for her regular visit. I am going to make a smoked haddock and leek risotto for dinner. Palliative care in action. Dying is not just sitting there waiting. Happy Birthday!
Go to part four here.
