Wednesday, 29 October 2014

Grazing

I am grazing.

You will think it is the dream life. I am struggling with my rebellious bowels in a kind of crocodile-esque death-thrash. I have to be ingenious with my induction of calories to the point of a masters degree in nutrition.

I have to ingest thousands of calories a day to have a chance that enough will cling to the edges and think fat. Maybe 3 or 4 thousand calories a day gives me some chance of simply maintaining this precarious 38 kilos I'm dicing with.

The TPN (total parenteral nutrition or IV feed, I'll stop explaining it soon honest) looks very likely as clearly this kind of lifestyle isn't sustainable or desirable. However much you much you might think it would be.

So, I have to have a steady and extremely appealing list of delicious high cal treats to convince me to keep munching, cow-like, stuffing my little foie-gras liver. At the same time, these endless banquets of tapas and sugar need to leave so little residue as to pretend they were almost never there at all. I need to sneak the calories in, hidden behind loops and valves and whatnots, trick my guts into not noticing.

But even more ingeniously, I can't just munch on additives and chemicals and false cheese. Nope. Whatever I get has to be the "made-in-someone's-kitchen" variety, ergo the most expensive in almost all cases. If I don't follow this crucial rule or try to fudge it, the whole exercise is pointless anyway as it just makes me more ill. So basically I need a healthy, unhealthy diet with thousands of calories and no residue. I challenge the best dietitians to better mine. When I can bring myself to do it properly.

On the odd quiet month where there might be a little more about for good food I might make sure I get a grazing selection twice in the month. This is nowhere near enough, I need about 2 or 3 a week every week.

So favorite examples would be a rocking cheese plate. Nibbles on high cal cheese and barely-there water biscuits with the odd grape as a treat if I'm feeling rebellious. Homemade fudge, ice creams of enormous cream and sugar content, honeycomb, fruit jellies drenched in sugar, fresh squeezed lemon and honey with hot water (and a pinch of salt for the electrolytes. Add ginger and garlic & chicken stock for a super-food broth.

Marshmallows, jelly babies, jelly beans, bruschetta type crackers, antipasti under oil in jars. mop up the oil too. I have found these tiny hot red chillies stuffed with anchovy paste so salty it makes your eyes water. They're suspended in a chili oil  (I need lots of salt too.) Cured hams like parma or prosciutto. Toast on a light bread like a bloomer. Piled with as much butter and jam/marmalade/honey/chocolate spread as I can balance on. Dipping tea biscuits like Rich Tea in golden syrup because it's yummy. Having tea-dunking biscuits by you at all times so you can dunk a biscuit to dissolvey mush pretty much hourly.

For food, mashed potato or the middle of jacket potatoes with butter and cheese sauce, bacon sandwiches with crappy white bread. In this instance, the crappier the better. Stuffed pasta parcels with butter and fresh sage, tinned fish of all kinds, (quick pause there as 10 year old came into bedroom to give me an olive. We all play this game.) When they go to the fun fair, they wouldn't dream of coming home without a candy floss for Mummy.

Croissants with lots of french butter and as much jam/marmalade/honey/chocolate spread as I can balance on (yep, that's a theme. Balancing). French butter is an even-higher-level treat but if I have some I pretty much put it on everything I eat until it's gone. Smoked salmon, avocado, bananas, yoghurt, custard, rice pudding (you guessed it, with as much extra sugar or cream, preferably both, I can tolerate.)

If energy allows, and this isn't really one of those periods, stuck as I am in bed in a sort of in-hospital-from-home limbo until I can be made a little more stable, I make soup. Pretty much from anything I have combined with chicken stock, onions and some spices or herbs. Whizzed up, most delicious veg are fair game and this is where I get the most nutrients. I can't even eat much in the way of fruit or veg, so this way ensures I get all the nutrients I can from what I can have. Ditto casseroles. I can steer clear of most of the meat in a casserole, eat the very soft veg like parsnips or carrots and get all the goodness from the meat and the vegetables in the gravy.

But now we're in the functioning-relatively-normally-if-able-to-eat-hot meals-stage.

At the moment, if I can't keep it by my bed, or get it in the fewest movements possible from a fridge, cupboard or freezer, it's not really much use to me.

Nothing I need to eat is on most people's necessity list. Every last item is deemed a "treat" or a "luxury". No-one needs to buy peanut butter ice-ream and salted caramel, the idea is so far from what we learn about absolutely everything that resembles a "normal" diet. We're programmed to think of these foods as "bad" or "fattening" or "unhealthy". The stigma is huge.

So imagine if you will you're a work colleague of Dave's or a friend from the school gates and you come round for an evening. You know the wife/new acquaintance is extremely unwell, but not much more than that. You know it's her bowels and she has lots of operations. You go round to visit and she spends most of the night sucking sweets, eating ice ream, nibbling cheese and parbaking croissants. You'd almost certainly conclude any problems she might have were of her own making! That is so far from the idea of "healthy", I usually end up giving dietitians recipes.

You have to eat often! As soon as symptoms allow, you're right back at it. So you can't really ever be far from your grazing stash without planning. It's not just me. I've found a whole world on social media who have to eat like this every day and know exactly what I'm talking about. People who effectively stuck in bed, people with poor mobility, people who are very isolated and have little help at home, all of whom are a little too old or frail or unwell to keep weight on easily.

I always think to myself that if I was rich, it would be fine. I'd potter through farmer's markets and gorgeous little deli's in cobbled high streets buying various beautifully wrapped little mouthfuls of gorgeousness. I'd hover from Rosette to Michelin star eating delicate mouthfuls of perfection that even I can eat 5 courses of and still fancy a kebab. I'd sip high-calorie cocktails and eat Belgian chocolates for breakfast.

But as it is, I generally feel too guilty to do it, even though I need to. It's hard to spend lots of money on rubbish you won't let your kids eat. It's hard for 50% of the budget to go on your capricious whims or fancies of the day. On food you might not even get around to managing or that reappears rather sooner than it needed to.

As a final word to all high end, high cal food manufacturers : Lots of people who literally can't punch their way out of a paper bag for one reason or another buy your products. We can just about manage  folded paper packets and rippable foil, but frankly, anything more complicated or durable than that will effectively bar us from actually eating it at all. If it needs a knife, pair of scissors or brute strength, lots of us won't even be buying it.

So I manage to have a condition where the thing I have to do is sit in bed all day every day, preferably waited on hand and foot with people literally peeling my grapes and braving great quests to get exactly the brand or type of something I desire. Talk about a princess. It's a worry really.


Saturday, 18 October 2014

So How Am I Now?

Regular Twitter followers will know that I finally managed to get home on Monday. After all of the tears, meltdowns, loneliness and fear, I finally made it through to the other side.

My operation was last Tuesday and as I explained in a previous post, the worst scenario was that I would wake up with a permanent stoma (many can be reversed in time, but mine would have been forever) and that I would have to be fed into a vein (TPN or total parenteral nutrition) for the rest of my life.

The best scenario was that there would be enough bowel left for the stoma to be reversed and I would only require the TPN a few days a week.

The scenario-that-dares-not-speak-it's-name was that I would never eat again. Somehow my bowel would be so damaged that it couldn't manage anything orally at all.

Surgeon Pimpernell was on call last week, so we knew that was his best chance of fitting me in. Otherwise I would have to wait on what's called the "elective list" for an unthinkable 6 to 8 weeks. I had just 140 cms of small bowel left (most people have 4 metres) and less than 100 cms is "Not viable" Regular readers will know that I always resisted knowing what "not viable: actually meant. Mr Pimpernell said he would have to take 70 cms away, leaving me with just 70 myself.

First Mr Pimpernell tried to fit me in on the Monday. I got to the ward door before the anesthetist decided he couldn't trust when I said I'd last eaten and he wouldn't risk the anesthetic.

I was incredibly frustrated. Us bowel disease patients know very well that we're very likely to be "bumped". Bowel cancer is often such a vicious cancer and in many cases, by the time patients get a diagnosis, it's too late. But being bumped for no reason, being bumped because yet another health care professional decided "he knew best" was almost more than I could bear.

Just as I was coming to terms with my misery, porters arrived again. This time it was about 8pm and I got all the way down to the anaesthetic room before they told me there'd been an emergency. Some poor soul had died in recovery, so was already intubated and unconscious and needed one last shot to save his life. Frustrating though it was, no-one minds being bumped for this.

I was woken up the following morning at 8am by yet more lovely porters. This time, all went well and the next thing I knew, someone was calling my name and telling me it was all over.

If anyone remembers the horrors of post-op pain relief I had at the Other Place, might like to know that my pain pump wasn't quite ready for me to use when I woke up. The loveliest nurse assured me "I'll be your pain pump Sue, you don't have to worry about a thing" He never left my bedside, giving me 10mg boluses until the pump was ready.

After a while, Dave came in looking relieved and happy. He told me to take a look at my tummy. As I peeled back the sheet, eager to meet my new stoma-buddy, I saw there wasn't one there at all! I panicked, asking Dave what had gone wrong. Had they not cleared the blockages after all? Would I have to go back to the pain and vomiting of before? I honestly didn't think I'd be able to bear it if I did.

But no, clever Mr Pimpernell had managed to salvage an extra 20 cms, so in all, I had 90cms left after all. Whilst not quite the metre I need, he thought it was worth giving me a chance to see how I went before I had to face such drastic after care.

So no stoma at all wasn't even an option on my consent form, I felt like an actual miracle had happened. What's more, they wanted me to see how I went with eating before they set up permanent TPN, so I dodged that bullet too.

My recovery has been superb - possibly the best of all the operations I've had. The most remarkable thing seems to be that all the pain and vomiting of before has gone. It's hard to believe, but I already felt better 2 or 3 days after the op, despite all the surgical pain.

So it's early days and I've got a long way to go yet, but things look so much more promising than I dared to hope. I'm convinced that the hundreds of goodwill messages and prayers carried me through, so a million thank yous to all of you.










Monday, 6 October 2014

Clegg the Innocent

Never has there been a better example of naive little fishes swimming in a vast, Machiavellian pond than Nick Clegg's "Orange Bookers".

It's easy now to forget just how shocking and incomprehensible we all found even the concept of a Tory/LibDem coalition. To forget those 5 surreal days our democracy was in hiatus, holding it's breath while just 4 men decided the future of our countries behind a locked door. For 5 days and 5 nights, Cameron, Osborne, Alexander and Clegg hammered out their agreement. A vacuum where one day, history would be. 

Four men. After 29 million, 691 thousand, 380 people had voted, in fact they may as well not have bothered. The manifestos they thought they had voted for were discarded along with student trust and the last drop of belief in our political system. The party of civil liberties  were artfully convinced to give them up for the promise of a few tempting beans. 

Cameron and Osborne, foxes in tails holding knives and forks and licking their lips. Clegg and Alexander eager as 6 formers convinced they are ready to play men's games. 

Clegg went into the room with a left of centre economic position, that passion for civil liberties, a determination to see electoral reform in both the Commons and the Lords, and a pledge to scrap tuition fees. He came out having ceded to Osborne's right wing economic strategy, with the promise of a referendum on AV that was dependent on boundary changes that would see the Tories gain an almost indefinite majority in the commons, tripling tuition fees and supporting a welfare reform bill that would throw all but the most fortunate to the wolves.

Almost every policy  decision for the next 5 years was decided in that room, by those 4 men. Since then, each time democracy has tried to object, she has been silenced with either bribery, dishonesty or the Whip. From using financial privilege to overturn Lord's amendments and increasing government surveillance measures, to threatening the BBC and deleting old speeches from the internet. 

They ripped up disability living allowance and replaced it with personal independence payments in that room, agreeing to slash a random 20% of people with disabilities from the budget - it was in neither manifesto. They awarded themselves 5 years of power with virtually no possibility of challenge the very day they left the room. 

I remember Nick Clegg saying at the time "I asked a mutual friend "Can I trust this guy" [Cameron]. The friend said he thought he could and before we knew it we were feeling queasy at the sight of that new bromance flowering in the rose garden. I had always assumed that the very first thing they learn in politician-nursery-school is "You can't trust anyone."

Nothing has demoralised me more than watching previously centre left politicians with apparently, well, Liberal values, file into those lobbies, one by one, in support of slashing payments for disabled children, selling off our NHS in piecemeal chunks and slashing legal aid. I watched them argue over how terminally ill you have to be to qualify for disability benefit. I watched them decide that there was no longer any need to treat profoundly disabled children who would never work as though they had contributed national insurance, ensuring they were always entitled to support in their own name. After all, it was argued, they "might inherit".

But that just demoralised me. What disgusted me, was being assured through it all that the Lib Dems had somehow stopped the worst excesses of the Tories. I have found myself living in a country that has allowed sick and disabled people to die in hunger and despair and they dare speak to me of mitigation? 

I think in a funny way, the UK public did vote for a coalition. I just don't think they trusted either the Tories or Labour to govern with free reign. The gave Clegg a once-in-a-generation opportunity to show that coalition could work. They "agreed with Nick". A unique chance to dictate how and when he and his MPs would support the Conservatives and how and when they would not, issue by issue. Instead, he was smoothly convinced that his job was first and foremost only to "think of the markets" and "put stability above everything." He didn't even see the handcuffs coming. Or, it seems, such familiar right-wing euphemisms for stuffing the poor. 

Now, we start to see the predictable sight of the little fishes trying to swim like mad away from the shark. http://www.independent.co.uk/news/uk/politics/the-lib-dems-attack-tories-are-borderline-immoral-danny-alexander-gets-sweary-and-nick-clegg-accuses-cameron-of-being-a-poor-mans-thatcher-9775322.html?origin=internalSearch But it's too late to pretend they're in the wrong pond now. 

In fact, they've forgotten the idealistic, self-righteous little minnow pond they started from altogether. Now, when Danny Alexander is "pissed off" with Conservative economic policy, it is only because they stole it from him. In 2010 it was because - as he rightly pointed out - that same policy would delay recovery by 3 long years. 

Tim Farron, the last remaining token voice of the handful of centre left Lib Dems who haven't deserted the sinking ship describes the Conservatives as "borderline immoral". Any politician that thinks finding people in comas fit for work and scrapping the social fund is only "borderline" immoral has a very different definition of immorality to me. 

The total disdain voters in Scotland showed for Westminster in the recent independence referendum rang a warning loud and clear. "Reform or Die". From the actions of all 3 parties at their recent annual conferences, it seems the message is as far from getting through as it ever was. 

Sunday, 5 October 2014

Occidental or Accidental?

There's the sweetest young Chinese girl in my bay at the moment.

The gulf between the Chinese approach to healthcare and ours is so vast I'm not sure it could ever be bridged. Where their approach is holistic ours focuses mainly on symptoms and disease. Where they treat the whole person, we treat just a part. Where they value prevention, we seem all too often to only see the cure.

I can only imagine what she must think of our lack of respect for our older generation and as I tried to explain the pressures on our own NHS and the frustrating delays, I felt miserable and embarrassed.

However, today, she asked me how she should pay for her food. I laughed and said it was included. She asked about her medicines too. All included, I explained. "But what about my procedures and tests?" I explained that was all included too. "But included in what?" She asked, "How do they decide the final bill?"

I said there was no final bill. Healthcare in the UK was free at the point of use.

She clearly found this concept as hard to understand as I would have found the approach of her doctors back in China.

As a full time degree student, her healthcare is free too. Before anyone starts jumping up and down in outrage, I can assure you the fees she is paying for her course would make you pass out in a clean faint. Students like her keep most of our universities going. So she's paying alright, just not here and now.

However much I may have squirmed as I tried to explain the waits she was finding so mystifying, it was matched by the pride I had in describing the most equitable health service in the world.

Friday, 3 October 2014

The Handover Issue

For the 25 years I've been staying on and off at Her Majesty's Pleasure, Healthcare Branch, I learnt almost immediately never to ask for painkillers within 15 minutes of handover. At least. 30 minutes is better.

Handover is the term for when one shift goes home and the next take over. In this hospital handover starts at 7.45 am and 7.45 pm. This means I always make sure my painkillers and anti-sickness medicines are PRN, meaning I ask for them when I need them, they are not brought automatically at certain times of the day.

This means I have to ask for painkillers well before 7.30 (am or pm) should they happen to fall due around that time.

It's very hard to explain to someone who isn't in pain how totally unlikely it is that you should "forget" this crucial detail. When it feels like someone is holding a red hot poker deep in your solar plexus, you tend to make a note of the exact minute you asked and make totally sure you don't ask at a time you are likely to be left with that poker indefinitely.

But after all these years, I just can't understand why we still do it that way. 

How can we possibly guarantee that 62 patients will be able to suspend the various issues that brought them in here for 45 minutes or so twice a day? Why on earth do all 7 or 8 trained staff nurses, charge nurses and sisters take handover all at once?

Would it not be immensely sensible to ensure that handovers are either staggered, or that we ensure that 2 trained nurses sit out and remain available on the ward while everyone else is unavailable?

I mean, surely in 25 years this has occurred to somebody? Most painkillers are what are known as "controlled drugs" and are locked away. Only two trained nurses can administer them to avoid mistakes or abuse.

If any other business had to close for 45 minutes, twice a day, loss of profit alone would ensure pretty damn quickly that cover was arranged. Surely avoiding human suffering is at least as important as a balance sheet?

Thursday, 2 October 2014

How Many is Too Many?

Do governments routinely cost the lives of their citizens? If so, how many lives are acceptable?

For the first question, do you ever think it's acceptable that government policy should cause any deaths at all? I image most will answer a fast and emphatic "no"

But think for a moment. It almost certainly happens all the time, all around us. Think of a short staffed hospital struggling under impossible cuts, with higher death rates than they should have. Did the government directly cause any of the deaths that may have resulted?

If homelessness rises, due to a failure of housing policy, leading to a higher than expected death rate on our streets, did the government cause them to die?

If pensioners struggling with rising bills and inadequate pensions can't heat their homes properly, and hypothermia cases soar one year, is it the government's fault?

We usually would blame the government. though coyly, we like to blame the policies, not those responsible for them. If we think of Mid Staffordshire Hospital or Winterbourne View, then government certainly took their share of the blame.

If hundreds of children started dying, there would be a national outrage, but would the public rally in the same way for homeless people? Or addicts? Is there a hierarchy within collateral damage that most of us subconsciously support?

Every day now, someone sends me a link to their local paper detailing that yet another sick or disabled person has died as a direct result of policy changes made by this government. Not as a contributing factor, as a direct result. Coroners reports regularly cite "changes to support and benefits" as contributing to or even causing deaths. It's not at all difficult to confirm what I say with a quick google search - there are hundreds of stories online, pages and pages of people claiming that changes to the social security system led to the deaths of their loved ones.

Yet here in the UK, in 2014, we're OK with at the very least hundreds of disabled people dying as a direct result of government action or inaction. Every day I read a new story, I get a little more frightened. Every new name that fades away, unnoticed by us, the public or by those who have a duty to tell their story honestly, makes me ask myself all over again "How many will be enough?"

Today, the name I will remember is Thomas O'Donnell you can read his story here http://www.mirror.co.uk/news/uk-news/disabled-man-left-malnutrition-after-3795893

RIP Karen Sherlock


Wednesday, 1 October 2014

So How Am I?

A bit like a Mum who doesn't want to tell her kids Xmas has been cancelled until Santa actually confirms it himself I've been putting this post off.

Most of you know I've been in hospital for 4 weeks so far and though I've gone into great detail about the patient care and various other aspects of NHS life, I've stayed intentionally quiet about what's going on with me.

I'm afraid the news isn't good. In fact news doesn't get much worse for a bowel disease patient. My sulky bowel has finally given up the ghost almost entirely. The metre or so left has gathered in a clumpy mess, never to be prised apart. If they tried, I would almost certainly perforate in several places, leading to sepsis and even death. The surgeon just wouldn't be able to guarantee he'd spot all the leaks. Bits that should squeeze have gone to sleep and bits that should sleep try to squeeze. Some bits are all narrow and impenetrable, others all distended with the pressure of blockages.

If I wasn't experiencing symptoms, they may have just left it to it's clumpy recalcitrance, but as I'm pretty much in permanent writhe mode, and have qualified to represent GB in the vomit Olympics, it's just going to have to go. Next Tuesday.

Normally, they'd cut the chunk out and join up the ends, but, well, I've run out of ends. There won't be anything much left to join TO. What's left of my colon isn't in bad shape which is something, but the slightly more crucial ileum will be no more.

So, that means a permanent stoma and being fed into my vein for the rest of my life. My medics seem to think there is an outside chance that enough ileum will be left to reverse the stoma at some point, but my surgeon was less optimistic, and let's face it, he's the guy with the scalpel. My medics also hope that the IV feed (TPN or Total Parenteral Nutrition - we might as well all start getting used to the term) may not have to be permanent or at least, I may get away with a few hours at night or even every other night.

I can imagine it's hard to believe that I've met this news fairly calmly. I have this feeling most of you reading this will be much more upset for me than I am for myself. But to be honest, the pain had become so constant and intolerable and the vomiting so grueling, I'd probably offer an arm too if they told me it might make it stop. It's not like I haven't lived with the knowledge for years that a stoma would be on the cards at some point, and I've known for a long time that the next chunk to go would probably tip me into "not viable," that cold term I'd tried for so many years not to ask about.

So don't cry for me lovely reader, the truth is I'll soon be freer.

This might give me a chance to get rid of all the pain - with a bit of luck and a following wind, maybe even for a long time. It should stop the vomiting and I certainly should be able to put on weight at long last with the IV nutrition - that might mean I even get a chance to get stronger.

A chance to climb trees again with my boys, play frisbee in the park, climb to holiday adventures on sunny mediterranean hilltops.

And if all of that doesn't cheer you up, if I've managed to make Ian Duncan-Smith's life this miserable at death's door, just imagine what I can do with a new lease of life.