A couple of days after my husband was sent home to die by the “world leading cancer hospital” that was treating him, this text arrived.
It has to be the final insult from a hospital who gave us false hope when there wasn’t any, kept dragging us in for pointless appointments which often ran over two hours late, hadn’t contacted our GP with an update since February, and kicked my hubby out in an ambulance with nothing but his pyjamas and a bottle of oxygen at 7.30pm on a Friday night after failing to spot a significant mass of tumour and telling us there was therefore nothing more they could do.
Without a fantastic selection of local friends – some of whom are our GPs and were brilliant at sourcing help from the district nursing team (and one even went the extra mile and took a night shift on the sofa so I could get some sleep in bed) – we would have been left completely high and dry. No contact from Macmillan, Marie Curie, or our local hospice, despite several referrals, not to mention several thousand pounds’ worth of fundraising done by our family over the last two years. Not even a leaflet to tell you what you might expect from dying (which – we have learned the hard way – is a process, not an event, and I promise you, nothing like it is in the movies.) God knows what people do when they’re completely on their own, because we were well supported by friends and family, and any medical questions were comprehensively and willingly answered, but the hospital didn’t know that, and you don’t know what to expect anyway until it’s 3am and you’re completely alone and helping the man you love to cough up tumours, or get to the toilet when he can’t support his own body weight, or calling an ambulance because he’s fallen out of the hospital bed which was supplied without cot sides or even sheets – two days after his discharge because they don’t work weekends. He actually slept in the kitchen for two nights until it finally arrived because he couldn’t get up the stairs. His one wish was to die comfortably at home, and the romantic and quiet vision we had in our heads was nowhere near the reality of what happened. We never knew he might lose all his cognitive functions. He never EVER wanted me to wipe his bottom for him, but I did that too (willingly, of course, as the “sickness and health” part of our marriage vows were taken seriously,) and after finding him lying on the floor without underpants, his catheter spilling out all over the carpet, had to have him hoisted back into bed by two strong neighbours which was distressing for everyone – except my husband, who by then, thank God, was blissfully unaware.
When you have a baby, part of the fun of looking around the delivery suite is being told that you might shit yourself during the process of birth, that it’s completely normal, and that a midwife would just come along and wipe it up. It sounds ghastly, but it happens to almost everyone, apparently. In death, it’s much the same. But did we know that a major bowel evacuation often happened shortly before the body shuts down completely? No, we did not. It wasn’t a sign we knew to look for, and I remember wiping it all away through the tears and feeling so angry on my darling husband’s behalf, because it was all so fucking undignified.
When they tell you to go and “enjoy the last two weeks,” they don’t tell you that you might only have a couple of days before his brain starts to shut down, and that the most quick-witted man you’ve ever had the pleasure of knowing won’t even know who he is any more, or that the man with the sexiest voice in the world would lose almost all power of speech. They don’t tell you that he won’t be able to understand simple medicine regimes or that you’ll have to give him his favourite drink (tea – milk, one sugar) from the toddler’s sippy cup you’ve had to borrow from a neighbour. They don’t tell you that the district nursing team are so tightly bound in red tape that they can “only treat what they see” when they get there, regardless of whether it’s taken them an hour to get to you after you call them in a panic because your husband can’t breathe (by which time you’ve just about got him settled again.) They won’t administer any drugs which might alleviate the symptoms if HE says he doesn’t need them, even if they’ve been prescribed by his best friend, and he won’t take anything orally because he doesn’t know what it’s all for any more, and thinks the nurses are all trying to kill him. He also said he was left handed (he wasn’t) and talked a lot to the people “over there” who didn’t even exist, yet the nurses couldn’t accept the word from two of the people who loved him the most – his wife, and his best friend, the doctor.
They don’t tell you that by law you have to have his DNR in the house and keep it safe – to be produced at will like it’s just some bank statement or other, or that you have to casually pop down to the chemist in your lunch hour to pick up the controlled drugs which will eventually finish him off, peacefully at least, and chuck them in the boot with the rest of the emergency chicken nuggets and milk you’ve had to grab from Morrisons so the kids don’t starve.
I have no regrets about my husband coming home to die – it was his wish, and I was happy to help him to be as comfortable as possible. If I couldn’t do that for him after everything he’d done for us, it would have been a pretty poor show. In some ways, it was lovely to be able to hold his hand any time, or to see the boys playing next to his bed in the sitting room like it was all completely normal. I just wish someone at the hospital might have talked things through with us so we knew what to expect, before they kicked him out. He didn’t know what was expected of him, and as his mind began to fade, he kept asking when he was supposed to die – reducing his little boys, and grown men friends, to tears.
I also wish they hadn’t strung him along with outlandish life expectancy predictions in the way they did, because the most heartbreaking part of all for us all was that he was not at peace with dying at all, was not ready, and resisted it all the way, but there was nothing anyone could do to stop it happening. They could and should have said to him months ago that there was no hope at all, at which point he could have begun to prepare to go gently and peacefully.
The outcome would have been the same either way, but if my husband had been discharged following a proper conversation about death, dying, and each of our roles within it, we’d have been far better prepared for the inevitable. It’s time to talk openly about death.
Until then, we chose option 7 – total fucking shambles.
Love Fanny x