Vegetation on a leaflet Days 4-6: The scariest bit yet

Oh my. What a difference a year makes. I’m very conscious, and very grateful, that I’ve just watched Great British Bake Off without a care in the world. Well, when I say not a care, my bathroom is a shell and I have the entire contents of my kitchen to find a space for before it is ripped to bits on Thursday, but life is good. 

A year ago tonight, I discovered what fear was all about. 

It was Bob’s 6th day in hospital and we had had a fair bit to take in. I’d assumed that once they’d pumped him full o antibiotics, he’d be out the door. He was still very sick and weak, but he was showing signs of stabilising. 

A lovely Irish doctor explained very gently to us that he’d be in having the 12 grammes of antibiotics by intravenous drip for at least the next two weeks. 

We were just processing that when a nurse and an ECG machine came flying into the room. Remember the poor people locked in broom cupboards watching the heart telemetry that Bob had been wearing since Day 1? They had seen that Bob’s heart rate was going through the roof and they had to find out what the hell was going on. 

This was a scene that was repeated several times with great drama over the course of the evening. 

He was shell-shocked. I can honestly say that I had never been so terrified about anything in all of my life. Now, I’m a worrier who is scared of everything, but it turned out that all the fear I’d felt before in my life added together didn’t touch this. It was obvious that the medics were worried as they did that purposeful scurrying that you see in hospital drams with ever more pills and potions and needles. And if the medics are worried, you know that this could be serious shit.

For hours, his heart rate went nuts and they were trying all sorts to get it down. 

I will never, ever forget the kindness and calmness of the nurse in charge that Monday night. I couldn’t believe that when she had a million things to do, she went and brought me tea and biscuits and sat with me radiating all the good and peaceful vibes you could imagine. 

Long past official visiting hours, I was so scared. Bless my Mum, she offered to come up. I thought that that might scare Bob even more. Not because she is particularly frightening but just that if random family members started turning up after hours, he might think that there was a reason for it.

The last thing I wanted to do that evening was leave. I eventually did at somewhere near 11. The lovely nurse would have let me stay, but that would have been really cruel to a teenager who had no idea what was going on. 

I had to force myself to walk away. I was convinced that the next I’d hear was that he was in intensive care. 

I wish I’d known that a year on, I’d be missing his Radio Grapevine radio show (he’s covering for Debra tonight) to watch some bloke put sprouts in a pie. 

Here are the Facebook posts.

1 October 2016

Today wasn’t particularly easy for Bob until about 3 hours ago. Since then, he’s been up and chatting and has even given me cheek. Only a little, but it’s a start. I had missed it.

Let’s hope tomorrow continues like this.

This was his first day of what would end up as four weeks on Ward 9. Here was a new set of people to get to know. The nurse looking after him was absolutely wonderful. Every so often he’d spike a temperature and they ‘d do what they could to get it down. 

There were signs that he was getting a little better, though. 

2 October 2016

Bob continues to make progress although it will take some time for him to recover fully. He has only had two fevers in the last 30 hours which is a massive improvement. He is not in as much pain and is significantly brighter

We were able to watch the Malaysian GP today and to do our best not to take too much pleasure in what happened on lap 43.

The nurses who have been looking after him are so kind. They have a huge amount to do yet they still so obviously care about the people they are looking after even when they present challenges, like singing Danny Boy at 5am. That wasn’t Bob, I hasten to add.

The food in St John’s is unexpectedly appetising and delicious. Bob loved the roast dinner and trifle he had for his Sunday lunch.

I now have the delights of Ed Balls’ Charleston to amuse me before I go to sleep.

3 October 2015

So, this is how we thought it would all pan out. When Bob hadn’t had a fever for 24 hours, they would chuck him out with a tonne of pills.

We were brought down to earth a bit by a lovely doctor who explained that he would be in here for at least two weeks having four hourly industrial strength IV antibiotics.

In addition to that, he has some monitors on which somebody keeps an eye on 24/7. They have all been going a bit wild over the last few hours. Bob actually feels no worse but he is being very closely watched. We both feel very confident in the quality of the care he is getting.

He is eating well – loved the vegetarian lasagne earlier. The food is really good in here.

3 October 2016

What is it about the tea they give you in hospital that is so soothing?

 

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Vegetation on a leaflet, Day 3: A wonder drug, 2 moves and multiple interrogations with a bit of drama on the side

And so we continue our journey through Bob’s stay in hospital this time last year. 30th September was, as days go, pretty unpleasant.

Here is what I wrote on Facebook with a bit of elaboration underneath in italics:

30 September 2016

Today has been pretty horrible. Bob is feeling really unwell. The light at the end of the tunnel is that they have now identified the drug that is going to zap these bugs out of his system so let’s hope he feels better soon.

In the midst of feeling awful, he has been moved and will be moved again by the end of the evening.

It also means the end of unlimited visiting for me which I am finding really hard.

30 September 2016

Finally home after finding that a kind nurse and a set of circumstances made the visiting restrictions slightly more elastic than they first appeared. Bob was sleeping peacefully when I left. Let’s hope that he stays that way when he gets moved, which is still to happen.

Think I will watch Bake Off while I have something to eat.

Now, about this wonder drug. The way it had been sold to us is that the microbiologists were beavering away working out what drug was going to blast the nasty bugs to kingdom come. They had made it sound like it was some designer concoction. So glamorous. They eventually told us about tea time that they had got the new drug sorted but he would have to have it 6 times a day rather than 4. By this point we didn’t care. We just wanted Bob to feel better. 

So when the miracle wonder drug arrived, I couldn’t wait to see its name. I was slightly perturbed to see that it was good old Flucloxacillin. More a workhorse than a sexy young new kid on the block. Also, he’d had shedloads of that on the past for other conditions, so I was a bit anxious about whether it would actually work. 

Before we got to that point, Bob had been moved out of the nice side room into a bay. This put an end to my unlimited visiting which worried me a bit. He was still pretty weak and I was, I think, able to do various soothing things and help him when he needed stuff. 

There was a bit of drama just before lunchtime when he started to have some chest pain. I fetched the nurse who had an ECG machine there practically before I got back to the bed. 

The readings were fine but it was a scary experience. 

Since Bob had been admitted, we had been amazed by the diligence and the knowledge of the medical students who were examining him. I hadn’t realised that your hands give off huge clues as to what is going on in the deepest recesses of your heart. Students spent hours poring over every millimetre of his hands and nails. How long had he had that lesion? How long had the skin been that colour?

There were also interrogations about every tiny abrasion on his body. They were trying to ascertain how he had got himself into this sorry mess. A blood blister on his foot emerged as the prime suspect, although the verdict was the Scottish “not proven” rather than anything else. 

Around dinner time after an exhausting day, we were told that he would be moved again that night, some time before midnight. I was obviously keen to see him settled in his new ward and as visiting time ended, I thought I’d take my chances and see how long I could stay before they threw me out. In fact, there were two other lots of visitors in the bay and I guess if they threw one out, they’d have to throw us all out, so we all benefited from each others’ presence. 

My luck eventually ran out at around 10:30 when Bob still had not been moved. I know it’s not ever so stressful being pushed in a bed to new surroundings, but when there are bugs staking claim to your heart, you feel like hell and you just want to be left alone, it’s maybe more of an ordeal than people think. 

He was finally moved much later, in the middle of the night. We’ll pick up the story tomorrow. 

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Vegetation on a Leaflet. Day 2. Don’t be silly, of course he doesn’t have a heart murmur

Day 2 of my meander down Nightmare Alley as I remember Bob’s stay in hospital last year.

This is what I put on Facebook for Thursday 29 September last year.

29 September 2016

Bob had a very tough night and morning but a better afternoon and evening. He has even just been for a slightly unsteady walk up the corridor but it was good to have even a brief taste of freedom.

The medics now think they know what’s going on so let’s hope for progress in sorting it out over the next couple of days.

Thanks so much for all the good wishes. He has read every single one and really appreciates it.

What follow, in italics, is my exposition of what was actually going on.

When I say tough, I mean that he was spiking horrific temperatures every time the Paracetamol showed any sign of wearing off. 

And then there was that moment when the Doctor asked “How long have you had the heart murmur?”

They must have meant someone else, surely. Of course he didn’t have a heart murmur. He was fine. He only had the Flu, after all. 

Yeah, well. They were the professionals with the medical degrees and the stethoscopes actually listening to his chest. I might have a string of Highers in Languages and an HNC in Business Studies to my name but that didn’t really cut it in this environment. Of course they were right. They heard a murmur. But, of course, I tried to rationalise to myself, he was fighting an infection. It would all settle down, now, wouldn’t it?

It was somewhere around noon that a doctor said that they were looking at the possibility of the infection being in his heart. As we spoke, some microbiologists were finding out what they could grow in his blood and what would kill it. In a couple of days, we’d have the drug that would sort this mess out. That gave us a bit of hope.

I was thinking that I would much rather that there weren’t bugs in something so flipping essential. Except I didn’t quite think flipping. But my mother might read this. 

There is nothing more horrendous than watching someone you love in pain. Except watching someone you love in pain and battling a life-threatening infection. I think that’s why I couldn’t write this all down last year. I didn’t know how the story was going to end. I mean, J K Rowling knew how Harry Potter was going to end, right from the start. She knew how it started and how it ended and took a few thousand riveting pages to find her way between these points. She might have taken her time, but at least she knew where she was going.

Not knowing where you are going is pretty terrifying. Not as terrifying as knowing you are heading to a bad place, but still, bloody scary.

Now Bob knew his way round the hospital. He volunteered with its radio station, Radio Grapevine. He found himself on the other end of the airwaves when his colleagues came round looking for requests. 

He managed a very shaky walk up the ward corridor that night. Only just beyond the nurses’ station, but still further than he’d managed for a few days. 

It shattered him, though, so I left him plugged into Radio Grapevine, slumbering gently. 

 

 

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Vegetation on a leaflet: The first day

Earlier this year, I copied and pasted all the Facebook posts from when Bob was ill last year into a single document. I meant to post them up here with a bit of elaboration. Then some daft woman called an election so that idea went out the window.

What I shared on social media at that time was a very sanitised version of the absolutely terrifying truth. Bob and I would agree the day’s post every night before I left the hospital.

There was, of course, much more to it than that. A year on from his admission to hospital, I am going to tell the story as it happened in a series of posts that will take us to the anniversary of his homecoming in November.

As I said the other day, the anniversary has hit me like a train. I mostly managed to hold it together and portray calmness and serenity while it was all happening. A year on, I am a mess. I’m hoping that writing it all down will help finally process it all.

So, here are the first day’s posts – with some elaboration in italics.

28 September 2016

They don’t think there is anything major wrong but the ambulance people have taken Bob to hospital for some tests. I am heading down now after him. They were very good and checked him over thoroughly in the house.

So I got back from Witney, where I’d been out campaigning for the wonderful Liz Leffman, at about 11pm. I knew that Bob had taken ill again and I was trying to get him to phone the doctor. He wouldn’t – and kept insisting that he just had Flu. 

I spoke to him several times during the day and became progressively more worried. When I arrived home, he didn’t seem as bad as I expected, but there were three things that worried me about him and I started googling “Sepsis.” What I read alarmed me enough to ring NHS 24. Their call handler was significantly unworried by what I was describing and put him on a 3 hour call back. 

When a nurse eventually rang, it took her about 10 minutes to decide to call a blue light ambulance. It drew up at about 4:30 am. The paramedics examined Bob who was insisting that he didn’t need to go to hospital. They didn’t think there was anything major to worry about as his ECG was normal, but they felt that he was a bit dehydrated and could do with some fluids. I told Bob that I thought he should go with them and followed him down in the ambulance – once I’d settled Hazel down. She had not been delighted to find strangers in her house sticking things on her Daddy. 

By the time I got to the hospital 20 minutes later, he was hooked up to a drip and wondering what all the fuss was about because he only had the Flu. 

Then all hell broke loose. 

A doctor came in and told us that a blood test had revealed a high level of Troponin, which would indicate that he’d had a severe heart attack. They were completely bamboozled, however, because his ECG was fine. They were also worried about the obvious signs of infection. So they started to treat him for a heart attack and an infection. 

I remember sitting there open-mouthed. Neither of us could work out when he could have possibly had a heart attack. He had certainly had a significant amount of pain in his shoulder over the day but he’d attributed that to the shivering. 

I kept saying that it was a lot to process and Bob kept pointing out that I had already said that. It was a very strange feeling, like we were frozen in time while all these people kept bustling  in with pills and potions and needles and drips and monitors. He was taken up to a ward and put in the room right next to the nurses’ station while a succession of doctors came in and examined him. He was put on telemetry which monitored his heart 24/7. Some poor person in a broom cupboard had to watch them all and, as we were to discover, act if something went awry.

28 September 2016 – morning

Bob is dozing and they are pumping various drugs into him at a spectacular rate of knots. He is in a lot of pain & we are a long way from knowing what the hell is going on. Thanks for all good wishes.

Pretty much everyone we came across at the hospital was brilliant to us. There was one person who wasn’t, though. I nipped home to get some stuff for Bob and when I came back, the car park was full. I went into the other car park. You had to buzz at an intercom to get the porters to lift the barrier. I said that I was there  to  see my husband. “Dear, ” came the disembodied, pained voice of a porter, “This car park is for patients. You are not the patient. You can’t park here.”  These people maybe need to realise that some people visiting the hospital are really stressed and in the biggest crisis of their lives. It’s a time for kindness, not cold, wearied condescension.

28 September 2016 – early evening

Still not much in the way of answers but Bob has improved a lot with IV fluids and antibiotics. He isn’t in anything like as much pain. He hasn’t yet got to the stage of giving me cheek but this all feels a lot better than it did 12 hours ago. Let’s hope this keeps up.

He really appreciates all the good wishes, as do I. It all just underlines how lucky we are to have such brilliant friends.

Seriously, if you ever wonder if messages left on Facebook actually help in a crisis – believe me, they do. Bob was aware of every single one of them and I would not have survived the next few months without the support of my friends from all over the world.

28 September 2016 – mid evening

Home now, having left Bob sleeping peacefully listening to Radio Grapevine as a patient. Now trying to summon up the energy to take Miss Hazel for a walk. I don’t think I’ve actually had a good night’s sleep since Saturday so feeling pretty knackered.

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It’s been a year, everything is fine, so why am I such a mess?

I can’t believe it’s been over a year since I last wrote anything on my own personal blog.

A year ago, I was blithely taking a photo a day of the last year of my 40s and having loads of fun.

Then there was all the frenetic build-up to Conference in Brighton. The day after I got back, all of a sudden, my husband said that he was feeling terrible and took himself off to bed. You know how when you go down with ‘Flu or something, it just hits you out of nowhere? That was what we thought was happening.

By the Friday morning, he was still feeling lousy, but able to be up. At the weekend, I ended up having to take my son to Comic Con in Glasgow. On the Monday morning, I was due to head to Witney to help in the by-election and do some stuff for Lib Dem Voice encouraging  people to go. I wouldn’t have gone if I had thought for a moment that Bob was still ill. He really seemed to be recovering. He was still a bit weak, but he thought he would cope. You can imagine how I felt in retrospect about that decision.

Unfortunately he was very sick indeed. When I got back on the Tuesday night, the resulting call to NHS 24 resulted in an ambulance being called. He spent the next 51 nights in hospital receiving treatment for an infection in his heart and then open heart surgery to repair the valve that the infection had damaged in its wake.

Vegetation on a leaflet, the cardiologist called the problem. How we laughed at the irony that a Lib Dem should have something wrong with a leaflet. We laughed because the alternative, of actually processing what was going on, was beyond us at that point.

Thankfully, he recovered very well from the surgery. His heart throws the occasional strop which means he ends up in hospital again but we really have been incredibly lucky.

For most of the time, I was pretty calm. I am by nature a worrier, but I found more strength than I ever thought I had and  got through, if not quite unscathed, certainly unbroken. I had a couple of major wobbles, but I decided that if I should have another, I would just get up and clean my house. It wasn’t sparkling by the end. Adrenaline is a very powerful substance and I probably survived on it for about four months.

Another huge factor was the brilliant support I had from so many friends. If someone posts on Facebook that they are going through some trauma and you are wondering whether to say something, do. It really does help.

Then there were the people who made it their business to look after me in real life – Linda dragging me for curries and phoning me up to make sure I was ok, all those who came to visit Bob in hospital and who offered to do all sorts for me, my Mum and Dad for endless tea and sympathy and dinners.

Here’s the weird thing. I never lost my appetite. Even the day Bob had his operation, my mother was filling me up with her delicious  home made lentil soup which I guzzled with enthusiasm even though everything about me felt liquid. I remember asking her how on earth I could still eat. She smiled and said, simply, “You’re your father’s daughter.” That’s fair enough. I don’t think I’ve often seen him lose his appetite either.

There is much to be written about our experiences of a year ago, and, who knows, I might even get round to it as the story starts to unfold itself on Facebook again.

However, it’s my experience over the last 24 hours which I want to share with you. I feel like I have been hit by a train. It’s like all the fear and terror has caught up with me and is standing in front of me, bouncing around so I can’t get past it. It seems determined to make me feel it.

Now, I suspected that this would happen at some point. The laws of the universe surely don’t let you away with your nearest and dearest having a life-threatening medical emergency without inflicting some emotional damage at some point.

So, I shared what I was feeling on Facebook, and, sure enough, my brilliant friends were there to reassure me that this is perfectly normal. Anniversaries of these things tend to do this to you and you just have to let yourself feel it and look after yourself.

In turn, I’m sharing their good and kind words with you in case you are going through similar or know someone who is.

I don’t know how long I’m going to feel this way. Maybe the little pinpricks at the back of my eyes that threaten tears, or the shudders of fear will disappear as suddenly as they have arrived, Knowing that this is something that just happens sometimes really helps, though.

We’ll get there.

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#339 to #335 to 50

Here’s another catch-up instalment of my photo a day of the last year of my 40s. We’re nearly caught up now.

#339

It was our 28th wedding anniversary! Bob and I headed into Edinburgh on our own and stayed out until after dark. I can’t remember the last time we did that.

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We celebrated in style at the Fizz Boutique before heading to the Gin Garden in St Andrew’s Square where we discovered the delights of the rhubarb and ginger gin fizz. Yummy.

We’d had dinner at vegetarian restaurant Hendersons. I didn’t even miss the meat this time.

It was a wonderful evening.

#338

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Saturday was mainly about catching up with some lovely friends. Euan and I had our birthdays at the end of July but the others were away. Shan baked us the most delicious chocolate cake which was the perfect end to Linda’s delicious Mexican meal.

#337

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How lucky am I to have somewhere like this to take the dog for a walk just across the road from my house?

#336

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This is not the clearest photo but I hope you can see that it’s Gordon Brown. Another trip to the book festival in blazing heat.

#335

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Don’t grass me up, but I left a Lib Dem meeting early to head to Pokemon Go night at the zoo. Obviously we were taking the kids. That thing you see in Bob’s pocket isn’t a massive battery pack that can power both our phones. Of course it isn’t.

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#344 – #340 to 50

Here’s the next catch-up instalment of my quest to take a photo a day during the last year of my 40s.

We are now back home in Livingston after a wonderful holiday.

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I went over for the second day of Pride Glasgow, which was a good deal drier than the first. In fact, by the end of the afternoon, it was glorious sunshine. We must have taken a wee bit of the Black Isle sunshine with us.

I was helping out on a stall, but also managed to hit the very classy tat stands and spent a fortune in flags and teddy bears and other stuff.

I had al lovely lunch, too – stories with black pudding, beetroot and oatcakes.

It was a super day – and great to see my friends’ sons having a whale of a time together.

#343

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It’s been a while since we’ve had a cute photo of Hazel.

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The kids decided to bake these sticky, gooey, jammy rolls. They were absolutely delicious. Seriously. I only had a tiny corner just to say I’d tasted it, but I loved it.

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I had been really rubbish about the Festival this year. Normally I’m never away from the Book Festival but the tickets went on sale just around the time of the Referendum when I was busy or scunnered.

Anyway, on Wednesday morning, I decided to see what was happening that day. To my utter amazement, I discovered that feminist icon Erico Jong (not pronounced Yong) was not sold out. And Vince Cable was!  I also managed to get a return for Vince. What a contrast. Erica Jong was so funny. Ruth Wishart, who was the skilful interviewer, got the best out of her.

Vince was as sage as ever, talking about Brexit and the economy. I don’t agree with him that we just have to accept that Brexit is happening, though.

#340

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Edinburgh at sunset.

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