“Yesterday it was my birthday, I hung one more year on the line …” (Paul Simon)

And what a year it was. I’m grateful to have come through it more or less intact, of course, because it wasn’t necessarily going to be in the bag as far as I was concerned – or as far as Stuart was concerned. But as my poet friend Martin said to me, “It’s been a charnel house of a year” in terms of those we’ve lost. Casting my mind back to November 2023 I bring them to mind: Dale, Chris, Dennis, Jimmy, Marianne, Ertie, Linda, Kathy, Jan, Janice, Doreen, Richard … all collected by The Grim Reaper and dispatched down their various corridors – Cancer, Motor Neurone Disease, Alzheimer’s, Old Age, Cancer, Cancer, Cancer, Cancer, Heart Failure, Stroke, Old Age, Cancer. I don’t actually think of the Reaper as being that grim; rather, as an efficient administrator with a neutral expression, a sharp suit on under his cloak and a folder full of labels that he attaches to you (see above) before pointing you to where you need to be. Next, please. And those of us left behind, the families, partners and friends, stand up, shake ourselves off, have a cry and dutifully take our places a bit further up the queue. (My mother’s response to hearing that someone had died was to say that ‘the shortlist just got shorter and we’ve all just moved up a place.’ Ever the pragmatist, was Joan).

So Happy New Year, chums, and as you will have gathered by now, I’ve been ruminating on ‘what it’s all about’. If you have a religious faith, you’re probably sorted on that one. If, like me, you don’t, the water is a lot muddier. As usual, I look to the arts to help me out on whatever I can’t work out for myself, and though there are no ‘answers’ available, there are lots of extraordinary poems, novels, films, and so on, whose creators have been wrestling with the same subject matter, and on whom I am happy to lean. Legendary Japanese director Hirokazu Koreeda had a rather lovely take on it with his 1998 film After Life. In this gentle and deeply humane film, he imagines that after dying, we head to a sort of benign bureaucratic organisation which processes us for the next part of our journey. Kindly officials take our details and ask us to recall our absolute favourite memory. Once you have described it, a group of earnest actors and belt-and-braces film makers sets about recreating it on film. Along with everyone else waiting, you are invited into a cinema, where the memories are reproduced on screen. As ‘your’ memory plays, you get the chance to re-live those moments once more before suddenly and quietly disappearing, having been moved on to your next destination, leaving behind an empty seat. If you can’t bring to mind such a memory, or if you just refuse to, you remain in this benevolent Limbo for as long as it takes. (There are a number of films with the same title, so make sure you get the right one if you want to check this out).

My dear friend Kathy and I talked about death and dying for the full eleven years from when we were diagnosed with breast cancer the first time. So many words! We thought we’d got it taped. But as she neared her own death last summer, we were both confounded to discover that we couldn’t find the words to express what we wanted to say; after all of those conversations. What I do remember is that once she was told that there was no more treatment that could be offered, she smiled at me and said “At least I know what my job is now.” I turned that phrase over and over in my head as I drove home. What she meant, she told me, was that her “job” was to die well and to leave her husband and family in the best way she could. For her, it was the process rather than the event that she was determined to focus on.

I was recently introduced to a project by film maker Doug Aubrey, who, having lived his life on the edge for decades – just about every major war zone in the world during his time – was confronted by a diagnosis of thyroid cancer, and found himself engaged “in a completely different kind of war.” Using an avatar, graphic novel imagery and many, many pieces of footage from his past life and career and from his cancer treatment, he has created Legacy of an Invisible Bullet, over 170 short films exploring his reactions to his diagnosis and his reflections on his life experiences. The result is an extraordinary and often unsettling cinematic journey which we are invited to join, and to share his strivings to uncover what it’s all been about. No spoilers, but one of the themes to which he returns on repeated occasions could be summed up as “what matters is what is left behind”. If you are fortunate (and brave) enough to experience Doug’s project in a cinema or arts venue, it will be life-changing. If you can’t, he has helpfully created an app that can be downloaded free from the Apple Store, whereby you can join in at any point on his film journey.

As for me, I also have a creative plan for examining this whole death and dying conundrum during the coming year. Over Christmas 2022 I was propelled by a sense of regret and loss relating to two people who had once been very close to me but had since died, to write a one-act play called Dear Madeleine. It’s about two former friends and lovers who meet each other for the last time when one is in a hospice, having not seen each other for years. They easily fall into their old friendship, but what isn’t easy for them to work out is what they are going to say to each other on this final meeting. Mind, this was before I had been diagnosed with neuroendocrine cancer, before the scary spinal surgery and before Stuart’s cardiac events. Along with my pals in Da Choys drama group – Jacqui, John and Barnum – we started to rehearse it with a view to staging it at Mareel in the summer of 2023. The subsequent carnival of diagnostics, tests, scans, biopsies and other surgical interventions scuppered it well and truly, and it has been on our several creative ‘back burners’ ever since. Whisper it (because as I said last blog, you never know who’s listening) but we hope to get it on to the stage, and possibly on to film, in June this year. Meanwhile, a sobering number of films and books have been screened and published dealing with the same subject matter since then, and my ego is left ruefully fearing that the audience will think I nicked these ideas … (cue over-lengthy and probably over-the-top denials and self-justifications in the ‘writer’s statement’ section of the programme). So for the record, I have never seen The Unlikely Pilgrimage of Harold Fry (unless you count repeated exposures to the trailer, after which you don’t really need to watch it all) or The Room Next Door (although in that case I wish i had seen it).

Just saying, is all.

“You’re being a bit maudlin,” said Ripley, looking over my shoulder at the screen.

“No, I’m being pretty damned positive actually. About books and poetry and plays and stuff. And films – especially about films.”

“Does that mean you’re finally going to watch my sequels after all these years?”

“Nope.”

“Well that’s hardly being positive, is it?” she said, raising a judgmental eyebrow.

“As far as I’m concerned, Rip, the story goes as far as you and Jones the Cat, asleep in your hibernation pods, sailing back to earth from space, whereafter you retire and you both grow old together in peace on the couch. That’s the only sequel I can manage. Call me a wuss, but -“

“You’re a wuss,” she said, picking up Genghis and carrying him to the sofa. “But hey, we can pretend.”

Or, in the words of the late, great Irish poet, Derek Mahon, whom I have probably already quoted somewhere further down this blog, “There will be dying, there will be dying / but there is no need to go into that… / …. the sun rises in spite of everything/ and the far cities are beautiful and bright …/ …Everything’s going to be all right.”

So lots of love from several places further up the shortlist. Especially to those of you who are missing someone whom it was a privilege to know. Grief, as my friend Joan M said to me, is the price we pay for loving and having been loved. That seems fair.

Normal service will be resumed when the days get longer.

“The moment I wake up … before I put on my make-up – I say a little prayer for you …” (Aretha Franklin)

There’s a sequence at the beginning of The Simpsons in which Homer is clinging to a branch, trying to fix his power line. He grabs it. It shocks him. He grabs it again. It zaps him. He grabs it a third time. This time he sizzles and you can see his skeleton, X-ray style. You get the picture. The animators’ point is a simple one – Homer never learns. And neither, it seems, do I.

In my last blog I was damn near boasting about how well Stuart was doing after his cardiac “incident” in January; I was virtually chortling about his daily walks to the community hall defibrillator. Well. It seems he might be able to vary his walking routes pretty soon because it looks like he’ll be striding out with his own personal miniature defibrillator tucked somewhere inside his person, which will give him a blast every time his heart decides to go insanely high like it did last Saturday. It appears to work a bit like my canine neighbour Loki’s collar, the difference being that Loki only gets a blast of citronella scent if he misbehaves; citronella is not going to cut it for Stuart. It seems that once again I have tempted the devil, and he has cheerfully and promptly responded, except that my husband has been his target.

As I write this, Stuart is in the Aberdeen Royal Infirmary Coronary Care Unit, where they are doing their damnedest to try and work out why his heart suddenly starts to race towards the finishing line. And as I wrote earlier this year, nothing, but NOTHING is worse or to be feared more than something happening to the person you love most. Driving home at 1.00am last Saturday/Sunday, whilst himself was being flown to Aberdeen, I was once again overcome by that sense of existential dread that engulfs you when your loved one is in danger. I recall writing about this in an earlier blog, referencing the many widows, widowers and bereaved folk of my acquaintance (there have been more since that episode), and being profoundly amazed and deeply moved by the way they have stumbled on after the worst has happened. I can’t begin to put in adequate words the respect I feel for them.

The worst hasn’t happened to Stuart, and it is very likely we’ll see him back here by the end of next week, with his bionic implant, setting off the alarms in airport security. But it’s hard not to be obsessed with the “what ifs” whilst awaiting his return. How do people pick themselves up and carry on after such a loss? My friend Peter described to me how he’d suddenly stopped in the middle of mowing his lawn recently and asked himself why he was doing it; grief won’t even let him finish the household chores without challenging him to a duel.

I can’t recall if I have told you the following salutary story before, but it bears repeating.

Late one summer, all the swallows gathered together to begin their migration south to warmer climes. All except one, who decided he’d stay a bit longer, and then a bit longer still. Sunshine: who needed it? As the autumn wore on he thought better of his rash decision and started his journey southwards; but he’d left it very late, and winter came early that year. He got caught up in an arctic storm and plummeted, frozen solid to the ground, where he lay paralysed with ice. At this moment, a large cow came along and, as if to add insult to injury, landed a large load of dung on his head. But here’s the thing; the dung was warm and it thawed the little fellow out. Shaking himself free he began to sing out his thanks for what had just happened. How he chirped! A hawk heard him singing and quickly plucked him from the ground, killed him and ate him. And the moral of this story is: not everything that lands you in the shit is bad; not everything that gets you out of the shit is good. And most importantly, if you’re warm and happy in a pile of shit KEEP YOUR MOUTH SHUT.

Which is what I should have done (are you listening, Homer?). So I’ll just quietly mime the softest and most heartfelt ‘thank you’ to all the NHS staff who came to Stuart’s assistance and those who are still doing their best for him. And a similar silent hug to everyone who has sent their love and best wishes to him.

Because you never know who’s listening.

“… Gonna electrify me … Ah’m gonna go off like a Roman Candle!” (George ‘Baby Face’ Nelson, O Brother, Where Art Thou?)

It’s been a while since Ripley and I updated our situation. There are reasons for that, the main one being that almost as soon as I’d finished the last instalment on an upbeat note, I was visited by another medical phenomenon, and I honestly didn’t want to come over as a hypochondriac. “But you ARE a hypochondriac,” said Ripley, which I thought was just a little unsupportive, but – her ways are mysterious and we’re stuck with each other).

But let’s start with some good news, eh? Stuart has recovered well from his ‘cardiac incident’ in January and his stent is doing a champion job. He has done, and continues to do everything his cardiac nurses told him to, including, alas, the lifetime ban on most cheese. (You have no idea of the magnitude of this sacrifice). It also includes strenuous walks first thing in the morning five times a week. As a matter of note, he walks to the Quarff Community Hall where there is a handy defibrillator outside the front door; if he’s planning on using it he’ll be the only man in medical history who’s defibrillated himself. Anyway, he caught the eye of one of our neighbours who drove past him and telephoned her husband to tell him that “Stuart must have had a heart attack.” When he asked her how she knew, she replied “He’s wearing grey track suit bottoms and white trainers: ALL men over 50 who’ve had heart attacks go for walks dressed like that!” She ain’t lyin’.

I left you last time having discarded my OT aids like the beggar in the gospels who chucked away his crutches and tap-danced for joy after a miraculous intervention. I too could walk! Granted I looked a bit like Frankenstein’s Monster (or the scary guys at the end of Night of the Living Dead) but I was under my own steam and usually ended up more or less where I’d been pointing. And that was the moment when I got tasered in both legs, or at least that was what it felt like. Seemingly out of nowhere something was sending nasty shocks through my legs, and crackling static through my abdomen and both arms. This unwelcome phenomenon was most likely to occur if the muscles were asked to do anything in the least bit strenuous. The shocks to the legs were the worst and fairly made me yelp. Cue panic, a frantic email to my kindly neurologist and an incoherent (on my part) conversation with my GP. I was fervently hoping that this would turn out to be something that was really common for folk who’d had spinal decompression, but the truth was actually more baffling.

It turns out that I can add ‘Functional Neurological Disorder’ (or FND to the cognoscenti) to my roll-call of co-morbidities. No, I’d never heard of it either, but Dr Duncan assures me that many, many people endure it, although it can manifest itself totally differently from person to person. He told me that the things I was experiencing were actually happening and that I wasn’t imagining them; but they did not indicate any serious underlying neurological condition, such as MS.

“Think of it as your brain’s software malfunctioning,” said he. “It’s sending messages to your body to respond in a particular way, and then when it does, it keeps re-inforcing it.” I asked him how we were to tackle it. Him: “Distract yourself.” Me: “You are joking, aren’t you?” Him: “No, you have to try and concentrate on something else and distract your brain away from what it’s doing.” Me: “How do I do that when it feels like a riot policeman is holding a cattle prod to my leg?” Him:”You’ll think of something.” (I paraphrase, of course). So I did.

A week or so later I was heading to the car park on the Lerwick Esplanade when the damn thing struck, big time. “Distract yourself quick!” I thought, and instantly decided to make up a song and sing it as loudly as i could. To the approximate tune of “In the morning, in the evening, ain’t we got fun?” I came up with the following:

“Don’t think about, just don’t think about, don’t think about your legs! Pleae don’t think about, no, don’t think about, don’t think about your legs! For although they’re feeling quakey, it won’t last long – you’re feeling shakey, but just – keep – singing this song ….” And repeat, ad nauseam. The effect was extraordinary. First of all, the tourists all fell back out of my way (I was like Moses parting the Red Sea) and then, the symptoms actually subsided. I couldn’t believe it. I rushed in to see the incomparable physiotherapist that is Margaret Gear and gave her a live demonstration. And because she is the font of all wisdom, it was down to her to point out that there was a fatal flaw to my strategy – yes, I was actually thinking about my legs, which … yep. So I graciously gifted her the song to bestow on any of her clients who have FND of the elbow or any other body parts which were NOT legs.

My new strategy is counter-intuitive but I think it might be starting to work. When the shocks and tremors start, I start berating my legs as though they were toddlers having a tantrum in the supermarket. “Nope. I’m not going to take any notice of you. You can do what you like, I really couldn’t give a monkey’s… go on, shock away, see if I care!” And I keep walking, keep walking, whatever’s going on. The static in my diaphragm has largely subsided. The legs will take longer, but we’ll persevere. Margaret tells me she has had many, many clients with this condition and that the great majority of them RECOVER. I intend to be in that number.

Meanwhile, Dr Duncan has requested another MRI scan to be on the safe side. He says he doesn’t expect it to show anything untoward (which is a relief because each time he’s ordered one before we have unearthed a different life-altering condition). Once I’ve had it and the results are in, you’ll be the first to know. Well maybe not the actual first.

“Follow me for more life hacks.”

“Get up, stand up / don’t give up the fight …” (Bob Marley)

Sorry to have been away for a while; recovery has been a bizarre mixture of things to do (and not to do) and people to see (if they can come round to your house, which you did, bless you, in gratifying numbers).

I left you post-op, my spine having been decompressed by the Adorable Mr Bhatt. After a week in the Aberdeen Royal Infirmary, followed by ten days in Ward 1 at the Gilbert Bain in Lerwick, I was finally released into the care of Stuart and Genghis at the start of March. You don’t get home without passing all the exams though. These include things like bowel and bladder activity (don’t they always?), and being able to shuffle along with a modicum of style on your zimmer frame. This all took some time to achieve, and when the former was accomplished (me having scooted purposefully in to the loo on my zimmer), the after-party was somewhat compromised by my appearing, triumphant and yelling “I did ’em both!”, only to discover a queue of physiotherapists, occupational therapists and general visitors right outside the toilet door. They were mostly smiling.

You don’t get out without the close attention of said therapists, which was very necessary as I was the spitting image of a beached walrus for several days, being too weak to haul myself up in bed. Fortunately, the nursing staff on Ward 1 are consummate weight lifters (and have a sense of humour, thank God); but I couldn’t go home until we’d worked out how I was going to do this for myself. Cue the OTs, the physios, and a roll-call of gadgets and devices that felt like all my birthdays had come at once. So here, ranked once more in no particular order, is what came home with me:

A metal hoop thingy for pulling yourself up in bed (game changer, this).

A “rollator’, or granny-walker in my terminology. Shiny, lightweight and with an integral seat for when you run out of puff, it gets you around in the house (but can be tricky outside if there’s a camber on the pavement).

A grabby stick/claw thing for getting things off shelves. Also good for pinching people’s bums as they walk past.

A padded stool for sitting on in the shower.

A trundly tray on wheels thingy for getting your dinner from the kitchen to the sitting room. Fine if your floors are level. ours aren’t.

And last, but most gloriously – THE RAISED TOILET SEAT. I had been a bit derisory about this before leaving the hospital (yes, yes, you could say I “poo-pooed it” … happy now?) but it was, not to put too fine a point on it, The Dog’s Conkers. It was the quintessential “throne”, where you could sit in comfort and glory, watching the world go by and stroking the cat. I loved it, and when it was time for it to go back to the hospital it had to be wrenched from my clutching grasp.

Anyway, they were all tremendously useful (but in some ways a poor substitute for the riots we had in Ward 1 pre-discharge) and I could start the fancy physiotherapy which was all about fine motor skills – picking little things up, recognising small objects with your eyes closed and so on. I applied myself to all of this with my Main Objective firmly in mind … to get back behind the steering wheel again. This was the quandary: my discharge letter from the ARI stated baldly that “Mrs Hubbard must not drive and must inform the DVLA”. What – must not drive EVER? For two weeks? A month? Serious research began, starting with the DVLA web site. You are now entering The Labyrinth. Cunningly designed to lead you back to where you started without ever getting to be where you wanted to be, it provokes more bad language than even working with sheep does. And if you know (sheep), you know, as they say on Facebook.

Under the section pointlessly called “Guidance to Clinicians” there are over a hundred ‘reportable conditions’. Mine wasn’t one of them. There was, however, just a hint that if you hadn’t sorted yourself out three months after your procedure, you would have to send your license back. As it was six weeks by then, I thought I’d write, helpfully explaining everything and asking who could assess me as being fit to drive. Two more weeks went by in silence (although I was getting very adept at picking up tiny plastic things by then). At the two months point, I had to face the inevitable: the forty five minute wait to speak on the phone. They tempt you with the ‘Press 1 for us to call you back’ option but I wasn’t falling for that – we were going to SPEAK. And as usual in these situations, when you finally do get through, there’s a really friendly person at the other end doing his best to help you (in this case, John from Swansea). Yes, they had received my letter; it was being reviewed by their caseworker who would get back to me. No, John wasn’t sure when they would do that. And my condition should have been on the reportable list, sorry. But eventually we got to the nugget – if a GP said I could drive, I could drive. Hallelujah. i made him repeat that twice more. I was jubilant, although it did seem a bit unfair to load such a responsibility entirely onto our overworked GPs; if I turned out to be a maniac behind the wheel and ploughed into the queue at The Cake Fridge, she’d be held responsible, and I’d only get hospitalised. But she bravely said ‘yes’ – and finally, I could start feeling like life was getting back to normal again, nearly three months after my operation.

As it turns out, ‘normal’ has been harder to achieve than I imagined at that point, but I’ll leave that for next time. You’ve all had enough. And no. No matter how much you plead with me, I will NOT tell you about the incident where I managed to wipe my bottom with a spider. No way. This is a family show.

“Looking back over my shoulder …” (Mike and the Mechanics)

… is frankly something I can no longer do thanks to the scalpel-wielding ninja that is Mr Pragnesh Bhatt, who has fused three of the vertebrae in my neck together and carved out the boney bit that was compressing my spinal cord into the narrowest of banana shapes. Yes, the Scary Spinal Surgery is now done and the recuperation is underway. This is taking longer than I had anticipated due to my not pressing Mr Bhatt to be more specific about his prediction that I would be “somewhat incapacitated for up to six weeks after surgery”. Always ask the next question was a rule that I used to live by back when I was a probation officer, but when it comes to someone trivvling with your spinal cord my old motto went out of the window, closely followed by any scant remaining bravery I may ever have had. Mr Bhatt, realising how utterly cowardly I was being about the whole thing (“this is a once in a lifetime event for you, Mrs Hubbard, but for me it’s my job…”), even offered to delay the process for a few months, but the certain knowledge that I would only be a bigger wuss in three months’ time, PLUS a stern look from Ripley convinced me that we should go ahead now.

I’m not going to bore you with the whole story; Ripley and I both think that this would be unforgivably self-indulgent. But there are a few “firsts’ and a few random acts of kindness that we would like to share, that left a deep impression on us. I can tell you straight up that during the seventeen days I spent in hospital (seven in the Aberdeen Royal Infirmary and ten in Ward 1 of the Gilbert Bain Hospital in Lerwick, I was treated with the utmost care, compassion and professionalism from every member of staff I encountered (even the two sharp-shinned young physiotherapists in Aberdeen who, having with the utmost difficulty, hauled me up to what resembled a sack of Maris Pipers in a sitting position then proceeded to beam at me and say “See? You did that yourself!” I didn’t; they knew I didn’t; I knew they knew I didn’t; but let’s let bygones be bygones, eh?). Let me deal with the kindnesses first.

I’ll tell anyone who’ll listen that I adore Aberdonian taxi drivers: they are friendly, expansive and talkative. In as long as it takes you to get from the airport to the hospital you can be treated to why they are on their third marriage, where they went on holiday, a debate on which kind of car they should buy next, how to deal with abusive drunken passengers (top tip – a baseball bat under the driver’s seat), you name it. I just love them. So I wan’t surprised that on our way to CLAN (a sanctuary for cancer patients from the islands and the north of Scotland where I was staying the night before being admitted) the driver shared with me his own brush with cancer, for which he was successfully treated. I congratulated him and told him that although I am an active cancer patient, I was actually coming down for neurosurgery: spinal decompression of the neck to be exact. Well, it turned out that he had been through a very similar procedure and he went to great lengths to assure me that it had been 100% successful and that I would be so glad I’d had it done once it was over. When we got to CLAN he pulled my baggage out of the boot then gave me a massive hug and said “You’ve got this. You’re going to be all right.” I nearly cried right in front of him.

The second taxi driver story concerns the one who picked Stuart up from the airport to take him to the Premier Inn near the hospital on the eve of the operation. Once again, they talked about why he was there and about my imminent surgery. When they arrived, the taxi driver asked Stuart if he wanted a receipt; Stuart said no. The taxi driver asked him if he was sure about that because wouldn’t he want to claim it back from Shetland NHS? Stuart explained that he was not an official patient escort, but essentially he was someone who chose to be there. To which the driver responded “That’s ok chief, have this one on me” – and wouldn’t charge him. Honestly, these guys are the best.

The third act of kindness I want share (and honestly, there were so many) occurred at the ARI a few days post-op. I was a quivering wreck awaiting some unpleasant procedure to be done unto me, when a young Healthcare Assistant appeared by my bed just as it was about to begin. She picked up my hand and held it, and started to tell me all the things she loved about life, whilst said unpleasant procedure got underway at the business end. She was from Nigeria and hadn’t been here in Scotland that long. I asked what her name was and she smiled and said “My name is Comfort.” I can say with the utmost sincerity that never was woman more aptly named.

Anyway, some personal ‘firsts’:

1) CATHETERS. The less said the better, but see previous paragraph.

2) a trip in the air ambulance, strapped to a stretcher. The plane is tiny, like being in a big MRI scanner – the paramedic with you has to crouch as there’s not enough room to stand up. First Officer Ripley was, of course unimpressed, being used to huge interstellar craft, but she had to suck it up in the cargo space.

3) at 68, having your bottom wiped by a lad who couldn’t have been more than 21. (My brother is of the opinion that there are some people who would pay good money for that. I am not one of them).

I’ll say more about the stay at Ward 1 in the Gilbert Bain next time, but for now, as the wound in my neck gradually heals, it remains the case that I can no longer look back over my shoulder. A small price to pay for what the alternative would have been, and as Ripley commented, it means that from now on I shall have to keep looking forward. “And frankly,” she said, “it’s about time.”

Damn. I hate it when she’s right.

“I’m just going out and may be some time …” (Captain Lawrence Oates)

According to the Bible, some bits of which I can still remember, (in this case Matthew, chapter 25, v13) Jesus said “Therefore stay awake, for you do not know the day or the hour …”. Well, I have news for Jesus. I DO know the day and the hour but I’m awake all night anyway and will be for the immediate future. Yes, spinal decompression surgery looms on 14 February (ok, so I fibbed about knowing the actual hour), and sleep is frankly … elusive. 

What began as a Cold Wet Leg, several chapters of this blog previously, turned into a double whammy of existential dread as investigations continued throughout last year. First of all, the spinal cord running through my neck is being gripped tight by ‘certain boney protuberances’, so I need a re-bore, or some titanium Lego bits inserted, or both (I stopped reading the surgical information booklet after page 2 because … well because); I’ve asked my delightful neurosurgeon Mr Bhatt to just do what he has to and give me a slice by slice account afterwards over a cup of hospital tea and a Bourbon biscuit. The other discovery was the cancer, but I’m leaving that locked in the mental broom cupboard just for now. 

Ripley is coming with me, naturally. She has been persuaded to stay on the ward whilst the deed is done, because if we let her into the operating theatre she’ll start interfering and trying to tell Mr Bhatt what to do, which won’t end well for any of us.

So – although I’ve frankly been dreading this since I found out about it last spring, I know I really, really have to get it done. My new motto is “Everything Must Be Faced”, and so it must. If all goes according to plan, I will, at some point in the near future, be able to go out and work with the sheep again (currently verboten by the neurologist), get out walking without fear that a fall Might Cause Significant Harm (he’s a lovely guy, is Dr Duncan the Neurologist but he puts the fear of God up me when he speaks in words All Starting With Capital Letters). 

Stuart will be there when I wake up from the anaesthetic (and yes, he’s recovering well, I’m delighted to report, apart from his devastation at being banned from eating cheese), and our heroic friends and neighbours are stepping in to feed birds, sheep and Genghis. The Khan has been formally discharged from veterinary oversight now, so is probably more healthy than Stuart and I put together.

Anyway, I’m off on Monday afternoon’s plane carting a suitcase full of medication and the full range of how-to-prevent-a-hypoglaecemic-incident substances. Everything must be faced, sure, but not without jelly babies. Will thrill you with the details when I get back. 

Meanwhile, thanks to everyone who has offered kind words of support to all three of us; wish me luck and I’ll see you on the other side. No, Ripley. Not THAT other side. Jeez …

“And now the air is clear, my dear, and you’re still here … with a certain surprise …” (John Martyn)

“You should have realised,” said Ripley with a barely concealed hint of accusation in her tone of voice.

“Realised what?”

Ripley put her coffee down and regarded me as one might a small child in whom one is disappointed. ”You’ve been telling anyone who would listen for the past three months that there was only one thing that would scare you more than this cancer and spinal surgery stuff.”

“Yes,” I replied. “And that is if something life threatening happened to Stuart.” She raised an eyebrow and gave me a meaningful stare. ”What? You think somebody or something was listening and decided to teach me a lesson?” No response; but the meaningful stare grew more intense.

“Ripley … I know you have your reasons for being a conspiracy theorist … but -“ And she does, to be fair. How many people do you know who get lured to a dangerous planet, forced to allow the admittance of an unknown peril to your spaceship, see your pals getting picked off and chewed up one by one by said unknown peril, get attacked by a murderous robot accomplice – and then get menaced by a salivating seven foot xenomorph whilst you’re wearing only your Sloggis? You’d feel justified in believing that it was not all just an unfortunate co-incidence. 

So now that it’s all out in the open I am able to formally confirm that yes – something happening to Stuart is definitely more terrifying than whatever is happening to me. That ‘something’ happened last Monday whilst Stuart was in the middle of his weekly swim at the pool in Lerwick. Forging through the water like a barracuda (his description) he suddenly felt very unwell indeed, heart racing, pale, breathless, the works. Having been employed in the NHS for over thirty years he knew This Wasn’t Right, and with commendable sang-froid he clambered out of the pool, got dressed and drove himself to A and E, a two minute drive from the pool. That made me blanche when I found out, until I realised that telling a lifeguard, getting them to phone 999, scrambling an ambulance etc, would probably have taken the best part of fifteen or twenty minutes; and where hearts are concerned, the sooner qualified medics can get started on you the better.

By the time I got there (“No need to panic, but we’ve got Stuart here …”) the fabulous Aimee Sutherland and her great team had him wired up to various bleeping monitors and pumped full of something to bring his soaring heart rate back under control. Seeing that he was calm and smiling I nipped out for my appointment with the medical imaging team, returning just in time to hear Aimee telephoning for the air ambulance. “Aberdeen would like to see him in the Coronary Care Unit because -” (and here she took one look at my panic stricken face) “- his results are … a bit baffling.” 

That’s us – whatever medical conditions we encounter always seem to be either ‘weird’ or ‘baffling’. But this was doubly scary because barring the odd virus, bout of flu, etc, Stuart is NEVER ill. Well, he was now. Having come straight from the swimming pool he had no spare clothes (worse, he was wearing a pair of loud, 60’s style psychedelic underpants … whatever would they think, my late mother would have asked). No phone charger. No books or toiletries. I had imagined (and so had he) that he’d be coming home with me once they’d regularised his heart rate, along with a referral to his GP. 

Watching him get wheeled out, strapped on his gurney, was without doubt the most terrifying moment of my life. For his sake I kept it together until the doors closed behind him, and THEN I bawled all over poor Aimee.

It was a very long week; he came back on the first plane on Saturday, stent duly inserted, and with a carrier bag of medications that matched mine in quantity and variety. And it gave me loads of time to mull over that item in one of my ‘What If’ lists that deals with partners who lose the love of their lives and have to carry on without them forever. I know so many; they are living my nightmare and they have my deepest respect. I am honestly in awe of them. There is not a day goes by that I don’t think of at least one of them and silently extend my love and admiration for them; I hope they somehow feel it through the ether, experience that faint ripple in The Force, even if they don’t know who sent it.

I’m also in awe of the tsunami of offers of help from friends and neighbours, who formed a protective force field around us both. Sincerest thanks from us both to you all. And here’s another announcement – we have THE BEST neighbours. Fact. Ailish and Eleanor and Robert immediately took charge of sheep management, and the feeding of Stuart’s beloved wild birds. Ailish was even up for dealing with Genghis’ litter tray, which is little short of heroic (it’s a big tray for a big cat). Thankfully, it didn’t come to that, and by the time I go for my operation we intend to have re-introduced him to the joys of outdoor toileting.

So – to sum up: 1) Stuart has had a heart attack but thankfully is now recovering; 2) Genghis is nearly recovered from his cruciate ligament misanter and shows no sign of being thankful to anyone; 3) I am awaiting a date in February for scary spinal surgery and I’m still a hopeless wuss; 4) the NHS are bloody marvellous.

And Ripley, I don’t care WHO hears this – it is definitely more terrifying when something awful happens to the one you love than when it happens to you. Again, Fact.

“The road is long, with many a winding turn … that leads us to who knows where?…” (The Hollies)

Right. Ripley says I have to stop being a misery-guts and she is correct as usual. These past couple of blog instalments have not been the most uplifting; time to get my Big Girl’s Pants on and woman up. 

Last time (or maybe the one before that) I was musing on the difference between fear and anxiety; this time I’m considering the difference between control and management, because I need to do less of the former and do much more of the latter. Those of you who know me well recognise the unpalatable truth that I am a control freak – in project management, in life generally. I’m not proud of it, honestly, but it has stood me in reasonable stead for decades. It does go well with the Catastrophising ‘What if ..’ list making I mentioned before: I have to have contingency plans for the contingency plans. Well, now I’ve come up against something I can’t control. So I’m having to learn to manage it instead. Check ME right out of my comfort zone. I’m very lucky indeed to have so many good friends, good professionals, and extraordinary loved ones who can help me learn to do that.

My first step out of Glum Festive Mode was to create a spreadsheet (yes, you read that right) for managing my current, and seemingly ever evolving medication regime. I’ve heard counsellors speak about ‘journalling’ as an aid to regaining your equilibrium, and I guess, to a certain extent, this blog is a kind of journal. But I can speak up for the power of the Excel Spreadsheet in helping you get yourself together. First of four insulin injections (check, inc. time and dosage), Metformin tablets (check), first of two Mirtazipine tablets (check), second stingy Octreotide injection (check) and so on, and suddenly, there you are – sorted. We can manage this. We can.

A slightly different approach is needed for the “What If …” panic episodes. (You know the kind of things: what if a) my blood glucose sensor stops working; b) the wearable heart monitor thingy starts bleeping; c) we have an extended power cut; d) I miss the operation in February / I don’t miss the operation in February – and so on, ad nauseam. Well, my go-to plan for that is pestering my long suffering husband, Stuart (Ripley says I don’t deserve him – and that he doesn’t deserve being saddled with me. Once again, she is correct, damn her). Stuart is brilliant at breaking issues down into their constituent parts and testing each part in order to assess its likelihood of happening, its potential for harm, its positive aspects and its ability to be managed. That science PhD was not wasted. It’s like having your own security guard, but one without a uniform (and with a faint Brummy accent). 

This isn’t going to be a lengthy instalment (I have spreadsheets to fill in after all) but I am continually surprised and moved by what Huey Lewis and Jennifer Rush refer to as ‘the power of love’. Here’s a tiny example. Stuart, Peter and I were at the cinema the other night, to see a popular family film. Sitting right in front of us were three sisters, young, none of them looking secondary school age. Whilst the adverts were playing, I saw the eldest-looking one produce an insulin pen and calmly inject her sister. Then they all carried on chomping their snacks and enjoying the film. And I have to tell you, I found myself welling up and fumbling for my kleenex. No fuss. No drama. No catastrophising. Just managing their situation in a matter of fact, and very caring way. It was a life lesson for me, delivered in under one minute.

Thank lasses.

“… and I will try … to fix you” (Coldplay)

I intend (eventually) to draw a veil over the past two weeks and my total lack of ability to control my anxiety. Suffice it to say that as a lifelong list maker, I have discovered a whole new world of lists – namely, the Catastrophiser’s Lists. For a small fee – or no fee at all – have one on me – I can make you a Doomsday What If … list to be proud of, incorporating all your fears both rational and irrational AND make sure that it keeps you awake at night and dogs your every waking moment. You have to admit, that is some talent. Ripley admits no such thing. She’s never been closer to giving up on me during a fortnight that has seen me at the GP surgery (three times), outpatients at the Gilbert Bain Hospital (only once, fair enough), at the A and E Department (to my absolute shame), and at the Aberdeen Royal Infirmary (twice). More on all of this later.

I’ve now had three Lanreotide injections in the hope of limiting the spread of neuroendocrine cancer. They are meant to occur monthly, and to continue, basically, for as long as they are doing any good. The side effects from the first one were unpleasant but manageable. I coasted through the second one, and started to imagine that I’d got this cracked. The third one disabused me of that notion. The side effects, far from fading away three or four days after the event, just seemed to go on and on, and I was, to put it mildly, In A Bloody Mess. However, by the time I got to see the consultant for our arranged catch-up session yesterday, I had started to become horribly aware that what I had attributed to Lanreotide was almost certainly due instead to an insidious , debilitating and sustained attack of anxiety. I alluded to it in my last post, and loads of you sent me love, sympathy, empathy and many, many helpful tips for getting it under control – bless you, I’m steadily working my way through them all, even the batshit-crazy ones (my favourites).

It looks as though the Scary Spinal Surgery is going to happen mid February (that will spawn the Catastrophiser’s All Time Greatest Hits of What If lists), so here’s the plan, as conjured by Dr Abraham. First, we have a pause in the Lanreotide regime until after the surgery. Instead, we try daily, self administered, subcutaneous shots of something called Octeoride, which delivers short sharp bursts of whatever is in Lanreotide, rather than the month long slow release of the latter. We’ll see if I can tolerate it and manage the side effects a bit better, then pick up again on the slow release version after the surgery. These should start early in the new year.

Meanwhile, when I pause from mentally scribbling the latest Catastrophiser’s List, I marvel at the massive team of folk who are focused on helping me through all this. That team includes all of YOU lovely people, of course. But as it’s Christmas, and a time for being thankful for whatever you have, I want to express my gratitude to, and my admiration of, the cohorts of NHS staff who put up with whatever I throw at them and still come back for more. There aren’t the words (or at least I can’t summon them right now) to describe how blessed we are to have a national Health Service free at the point of delivery, regardless of your financial means. I joined an online support group for neuroendocrine cancer; it has over 9000 members worldwide, with the majority appearing to live in the USA. Some of their stories about being unable to persuade insurance companies to pay for life-changing treatments give me the heebie jeebies … and so they should. The Bad Guys have almost wrested the NHS away from large sections of the population in England, in a sustained, decades-long strategic and political attack. We should be manning the barricades in Scotland to make sure that doesn’t happen here. And if it costs us a bit more, or even a whole chunk more in taxation or National Insurance, then show me where to sign up.

So, to the sound effects of sleighbells and cheesy Christmas songs, here is my latest list. It’s a sparkling and tinsel-strewn THANK YOU list and it comes out to: Dr Heather Jamieson and her fellow GPs, Vaila and all the nurses and the reception and support staff at Scalloway Health Centre; to Dr Callum Duncan, neurologist; Mr Pragnesh Bhatt, neurosurgeon; Dr Pui San Yap and Dr Prakash Abraham, endocrinologists; all of their friendly and efficient medical secretaries; to Morag and Rachel, nurses at the ARI Endocrinology Unit; to Amanda Brown and the long suffering staff at the Gilbert Bain A & E department; to Rob Royall and all the medical imaging staff at the Gilbert Bain; to the ever smiling nursing and healthcare support staff at the Gilbert Bain Outpatients Department; to Beatrix Weber and Stuart Ferguson, consultant surgeons at the GBH; and a particularly massive thank you to the wonderful and wildly dedicated Dr Pauline Wilson, and Diabetes Specialist Nurse Alison Irvine at the GBH who stick with me through all my trials (the real ones and the imagined ones); and whilst I’m at it, to the whole army of hospital clinical and nursing staff, admin staff, estates workers, lab technicians, cancer tracking information analysts, IT staff, cooks and cleaners and indeed everyone, anyone, who contributes to keeping the NHS doing what it does here in Shetland.

I may be not much more than the sum of my various neuroses just now, but when I stop twitching long enough to look beyond them … I see you all – and I know I’m one very lucky woman. Happy Christmas everyone. 

“If I lay here … if I just lay here … (Snow Patrol)”

… it would be a blessing to actually sleep. No chance. Bear with me for a brief meditation on the difference between fear and anxiety.

When The Lockdown started back in March 2020 it was my first sustained period of panic attacks. I’d had the odd one before then but with the help of a sympathetic GP I could usually talk myself down from it. Lockdown was a whole new level – lying awake at night for hours, convinced that I couldn’t breathe (I could, of course, but -) and tormenting myself with endless imaginings of Things That Might Happen. Only the dawn chorus brought any release and an hour’s respite. Night after night, the same thing, until I actively sought the help of another GP, another one who accorded me the respect of taking my fears seriously, and then systematically addressed them one by one, until I settled back into my ordinary self and started engaging again with the bits of the world that were open to us during that time. The fact that it was a gorgeous spring and summer was a benediction.

Plenty of water under the bridge since then, as friends and followers of this blog will know, including the onset of NeuroEndocrine Tumours and the promise of Scary Spinal Surgery for my compressed spinal cord, and hey – here we go again, frightened to turn the lights off at night as scores of ‘what-if’ scenarios bounce round my brain like some cerebral tumble drier. And I find myself niggling at the difference between fear and anxiety; out of the two, I have come to believe that the latter is the more corrosive.

Fear, it seems to me, is an honest emotion. It steps right up to you and calls it out to your face. And it challenges you to stare it down. After the shock of the cancer diagnosis I spent some weeks being ruled by fear and I really, really resented it. Something had to be done. If you’ve been following the blog you’ll know that what I tried to do was to put myself in some kind of perspective – I’m not the only one, things are much worse for other people, here are the things that make you lucky, etc etc. And to a great extent it worked. (Even Ripley was impressed). I will not call this ‘being positive’ as I find that an irritating concept, but it certainly helped me to crack on.

But anxiety has returned with a vengeance, and that is a whole different monster – sneaky, insidious, undermining, all-consuming and seemingly impervious to remedial action. It is determined to rob you of any peace, any rest, or any enjoyment of even the little things in life. It doesn’t confront you to your face, it just makes continuous sneak attacks so that you can’t forget it’s there. I’ll take fear over this any day (or night) of the week. Without the chemical assistance of Zopiclone I’d be scunnared – but the last thing I want to do is to develop a tolerance to the only thing that brings relief, so it has to be rationed.

So, here’s the thing. If any of you have any tips, advice or wisdom to offer on how to deal with this underhand and intrusive condition, I’d be glad to hear them. Ripley doesn’t ‘do’ anxiety so she’s no help; she understands fear, but we’ve already worked out a strategy for that.

Back to The Lockdown; one of the things that helped me get through it was poetry – reading it, and with the help of the patient – and formidable – Martin Malone, writing it. And the poet who helped me the most was the lovely, late Derek Mahon. Do yourselves a favour and read ‘Everything Is Going To Be Alright’ … and wonder at it. So I wrote the following, in his honour.

JESUS, JULIAN AND DEREK – April 2020

(for Derek Mahon)

“Consider the lilies of the field,” said Jesus,

To his panicked disciples. “Do they worry?”

And because he was who he was, nobody thought

It wise to point out that this wasn’t helpful. 

Because, you know, flowers aren’t … but they kept quiet

And stole a sideways glance at him in case he had

Been joking or was trying to catch them out.

And because I am who am, I didn’t 

Buy it either. I’ve faced death down on more than 

One occasion, convinced I’d come to terms with

What it meant. But staring from my window 

Across the valley at night, watching the lights

In the neighbours’ crofts and willing them to be OK,

I knew I hadn’t. Should we call for help, no-one will come;

Someone will phone and say “You’re on your own.”

“All will be well,” said Julian of Norwich; 

Oh will it, I said, watching the Hercules

Touch down to carry some of us away,

For a one-way journey to the mainland.

“And all will be well,” she said; but the man from

The health board is telling us to

“Have those crucial conversations with each other

now because if you’re on that plane it may already

be too late.” I fret for my family in Wales.

“And all manner of things shall be well,” said

Julian. But I am unconvinced, All right for you

I thought, you dodged a plague, and you’re dead already.

And then I read your lovely poem, Derek.

You in your bed, sea dancing on your ceiling,

Luxuriating in the gorgeous now of it, 

Grateful for sunlight, for poetry and for life.

And suddenly the birds outside seemed more exultant;

The flowers were crowding each other in the field

Like I had never seen before. Orcas jostled in the bay.

Tirricks buzzed like angry bees, the curlews partied

Right outside our door.  Sheep grazed, imperturbable.

“There will be dying,” you said, shrugging Death 

Back into his place.  “Everything is going to be alright.”

Everything is going to alright! I called out through the window.

The birdsong paused; the sheep raised their heads;

The flowers were still; the orcas broke the waves.

They knew exactly what you meant. 

And maybe I knew too, although I still can’t be certain;

The point is I believed what neither Jesus nor Julian

(Nor even Bob Marley) could convince me of. 

Sometimes you have to hear it from a poet.”

The shortest day is not far off – maybe things will look up soon. Meanwhile, love to all of you and thanks for your support. You are indeed, The Bee’s Knees.