My husband, Tim, and I are celebrating our 25th wedding anniversary today (17 December).
This is us 25 years ago; on honeymoon, on xmas day, in Venice. No wonder, we are smiling.
There was a time just a few months ago, when I thought we might not get here. Not, as you could be forgiven for thinking (given that nearly four out of 10 marriages end in divorce), because we might decide to go our separate ways, but because in July this year, he nearly – very, very nearly – died.
The details of his sudden illness are not especially relevant here (and that is his story to tell, not mine), but such a close brush with widowhood inevitably makes you reappraise some beliefs and confirms you in others. These are my reflections on a traumatic few months.
Things the medical profession should know, but doesn’t appear to
Patients’ families are not annoyances to be tolerated at best, avoided and ignored, if at all possible. Ill people are not islands. They come with baggage, called families, to which they hope to return. There is little point in doctors employing all their skills and expertise and precious NHS resources to save someone’s life if, by the time they have fixed them, there is no family to go back to because everyone is in pieces, having been driven to the brink of craziness by the medics’ failure to treat them with any kind of respect, or tell them what the hell is going on during what is the most important, difficult and frightening time of their lives.
It is not ok to say to the wife of a dangerously ill patient who was hospitalised while on holiday in Cornwall, that he may be stuffed in an ambulance and shipped 265 miles back to some random hospital in London, if they happen to need the bed over the weekend. Nor is it ok to tell a patient in the early stages of recovering from brain surgery that, now his life is not in immediate danger, you can’t continue to treat him for budgetary reasons. This kind of stuff does not aid a patient’s recovery, however marvellous the surgery performed or drugs prescribed.
To the consultant who couldn’t be arsed to turn up to an agreed meeting the day my husband was discharged, shame on you. It would have taken you 10 minutes. It would have saved us untold distress, when we had already been through quite enough, thank you. When someone is going home after an emergency craniotomy, it is not unreasonable to allow his spouse the chance to ask questions such as: do we have to watch him like a hawk, or can he be left on his own for short periods? Basic stuff, like that.
Things I probably should have known, but didn’t
You can survive a lot longer than you might think on a diet of chewy mints, Pro Plus and tea.
One of the earliest ‘selfies’. Wales, easter 1988. Our first trip together
Cornwall is lovely, but I wouldn’t advise getting ill there. Everything is so far away from everywhere else. My husband ended up in a hospital a three-hour round trip from where we were staying. (Even the closest hospital was an hour away.) If we hadn’t been able to hole-up in a charity-run hostel near the hospital (until I was less wired and more fit to drive), I don’t know what we would have done. Anyone thinking of retiring to Cornwall, might wish to take note.
Casualty is not necessarily a hellhole. It can be the NHS at its finest. When the A&E doctor takes you into a room with pastel sofas, you should brace yourself for bad news. But however bad the news, the fact that it is delivered with such sensitivity and kindness will be really, really appreciated. Casualty doctor, you were a credit to your calling. We met only briefly and in the most difficult of circumstances, but my son still remembers your name.
When it comes to arrogance, QCs (and I deal with them quite often), have nothing on consultants. I used to think the question: ‘What’s the difference between god and a surgeon? (Answer: God doesn’t want to be a surgeon),’ was a joke. I now realise this is not the case.
Sometimes, only a cliché will do. Nurse Cathy at Truro hospital, you were not just an angel, but a star and a marvel. Even in our distress, we know how hard you fought for us. When, after a hellish day’s waiting, a doctor we had not seen before, arrived to announce that no specialist hospital would take Tim, after all (but they would discuss his case at their next regular case conference in five days’ time….), your face was as much a mask of horror as my own. I honestly do not think my husband would be alive now if you hadn’t stayed beyond the end of your shift to argue his case in a way, at the time, I could not.
Having GP friends (even if they are hundreds of miles away) can be bloody reassuring, if you are ensnared by NHS bureaucracy. I will never, ever, forget the response of doctor friends to my increasingly desperate and hysterical phone calls, when we were told there was no transport available to move my husband to a specialist neurological unit. When I phoned them again, this time on the verge of a complete meltdown at the hospital’s intransigence, my friends had already organised the charter of an air ambulance and accompanying anaesthetist. (In the event, such DIY tactics were not needed because, after much pleading and arguing, the hospital suddenly found a solution…)
Intensive care is an amazing, humbling place. Witnessing every medical device available to the NHS devoted to keeping your husband alive and monitoring his progress, is awe-inspiring. Intensive care nurses have a unique ability to be constantly and reassuringly present, but unobtrusive and almost invisible. Nurse Alan was particularly impressive in this regard. We were also pleased to discover that, if needed, he could get in the face of an elusive consultant. When Alan saw the agony we were in, two days after Tim had been admitted to intensive care and still no doctor had come to talk to us (against the hospital’s own guidelines), we watched Alan go and just stand next to the doctor on the ward, until he agreed to come over to Tim’s bed. That was the first time anyone told us that, despite being intubated and apparently completely unaware, Tim would most likely make a full recovery. It would have been nice to have known a bit earlier that we were safe to dare to hope.
Sometimes you have to shout, literally, to be heard. Sometimes, you have to argue and demand and sob to get anyone to take any notice. Acting like a demented harpy is distressing and draining, but it may be what keeps the person you care about alive.
Things I was right about
That you should not believe all the negative crap you read about teenage boys (hello, Daily Mail!). Ours two sons are:
a) Fairly typical teens, and b) Wise, selfless and mature young men; fantastic in a crisis.
There is no contradiction between those two statements. I can think of no finer tribute to my husband’s abilities as a father than the way his sons reacted to his near demise. Whatever worries I may have for the future, those two going far wrong is not one of them. You were both brilliant, brave and resilient, and I have never been more proud to be your mum.
Animal lovers can be people lovers, too. Among our logistical nightmares, was what to do with the dog and the cat, while we decamped nearer to the hospital. Huge, huge thanks to the two complete strangers who run the local kennel and cattery. Their response to a panicky, middle-of-the-night, email was to phone first thing the next morning and say: ‘Just bring the animals, now. Do not worry about bringing food or bedding or anything else. We have everything here and you have enough to worry about. We will keep them as long as you need us to.’ Ladies, you helped save this family.
Things I was wrong about
There is an assumption that, when the chips are really down, members of your extended family will rally round to help. Not in every case, I discovered. A couple of other things: uninviting those who are in the middle of a medical emergency from a family wedding because they didn’t RSVP in time, not kind; leaving sobbing messages about how hard you are finding it to cope on the answer phone of someone who is stuck 265 miles away from home, with a husband in intensive care, and two teenage sons scared out of their wits that their father is going to die, also not kind. Nobody likes a drama queen – particularly in the middle of a very real drama.
Whoever said that while you can’t choose your family, at least you can choose your friends was spot on. I would, therefore, like to congratulate myself for my excellent choices. Friends, you are lovely, lovely, people – and I salute you all. We would not have got this far without you. To those who dropped everything to come to Plymouth, who sent flowers and gifts, and endless, endless, texts and emails, who visited the hospital so many times, who love-bombed us into surviving, there are no words. To the friend who, although more used to five-star luxury, came and shacked up with us in the hostel, without demur; who packed her Kindle and her unrelenting air of calm, and just sat in the waiting room for days on end, so I would have company when I emerged from the ward, I can never thank you enough. To my friend in France who really was there on the phone, day or night, with extreme good sense and wise counsel (even at 3am) – that’s a debt I can never repay.
It won’t be the silver wedding anniversary we were expecting. We’ll have to have that party we talked about another year, but happy anniversary, Tim. It probably goes without saying, we are so glad to have you back.