Hunt, pain and unwanted hair

12768215_10207758659699014_1052815699497730846_oI’m thinking mostly about the Bed situation and still haven’t heard from neurosurgery. Today we go to Bantham for the first day of the wild swimming advert filming, and had I not had this day to look forward to I’d have been in a spin.

It’s a complete diversion, during which we film a piece in the Sloop Inn where we discuss cholesterol, before heading outside and filming the two swims and a good deal of cavorting (I’m not very good on cavorting at the moment). The brief for the ad involved swimmers aged over 50, and so a key question we’re asked to discuss during the filming is age; how we feel about it, how we exercise. We are all active, though the majority are certainly not athletes. Attitudes to aging and illness interest me greatly, and I did have a pang of supposed to be ill-ness about today because I’m not working – I really can’t – yet I spent a long day yesterday doing what I could manage. I wasn’t sure I’d do the swims, but am so glad I did. Overhanging it all is the thought of time; how much do I have left? Do I wait to die? Will Hunt be able to grow over the weekend to the point where it’s too late it matter that I have no bed and therefore no op?

The crew, led by Becka the Director, is fabulously funny, professional and friendly with that kind of boundless energy that suffuses all. They run backwards over sand with cameras. We also get a lovely lunch at the Sloop. I have fish pie, thinking again of brain food. It had struck me as I chopped nuts for muesli earlier that the things I eat to ward off dementia (bogeyman) might well be helping Hunt, since he’s likely to have mutated from those same brain cells.He’s a weaselly man, and I’m not keen on the idea of him beefing up. I do know, however, that he lacks moral fibre, which is reassuring.  I ask the gang what they think and we decide that I need to keep my brain in as good a state as possible so it can fight in tip top condition.

The odd thing since the brain swelling has reduced is that I can feel Hunt in there in a way I couldn’t before. My headache, which has been present for months, felt like a viral thing, generalised, annoying, a bit sickly. I have had stabs of neuralgia in my right cheek for ages, and an aching neck. Now I have a slight ache on the right of my head, with a tighter area over the place where I know Hunt is skulking, and which jells into a wobbly point down the back of the right side of my neck. It’s draped over one side like a comb-over and is a slightly sinister orangey ochre with a sheen like a Haribo and a rippled surface.

Because my mind has constructed this image from the ether I wonder if it’s a real pain, if there is such a thing. Pain is a complex and interesting phenomenon, sparked by a stimulus, sent along nerves for interpretation and action, often diverted to a random spot elsewhere (my favorite referred nerve pain is the one that manifests in the tips of the shoulders when a person has an acute abdomen, say a burst appendix, or an ectopic pregnancy). All pain is mediated by a good wallop of psychology and emotion.

I struggle with the first river swim, because it’s at the time of day (late morning and early afternoon) when I feel worst, related I think to the steroids. The water is cold too, and I can’t really swim enough to warm up. I have no core left, it wobbles in a most odd way. I was left holding a GoPro while Dave and Kari showed off their butterfly and couldn’t manage to coordinate holding it and swimming at the same time.

The sea part at the end involved walking into the white horses and screaming gale while our legs were sandblasted. I managed to stay upright, while earlier I could barely balance to pull my boots on. I’m invigorated and exfoliated, but when I check in the hope the abrasion has been sufficient to thin out my leg hair I find them to be as woolly as ever. I daren’t shave because manual dexterity is a bit of an issue, as is balance. So naturally in the current way of things, unwanted hair assumes a prominent place in my mind. Kari has now promised to pluck any unruly facial sprouters if I’m unconscious. Later my friend M, who’s been at the vino, messages out of the blue and tells me she’s just been checking the world record for bearded lady’s beard with her daughters, and it’s 14.5″. She reckons hers is nearly there and suggests we join the circus. Steroids thicken hair, and I’m starting to feel the shafts barking up like giant redwoods. More imagery that appears from nowhere, inconsequential worries made tangible.

I wonder as the late afternoon sun splinters and glares off the sea whether this is my last opportunity to get in it, certainly for some time; I find myself consciously storing the memories, forming that image in my mind and holding it there like a lantern. The light, the crazy currents and foam, the Avalon view of Burgh suspended in spray, those sea bells, the scent and fizz of ozone as I breathe.

Later, it’s the Bed that wakes me at 3.30am, while Hunt stabs at my neck.

This from a friend on Facebook (excuse the big up):

“This, my friends, is a fine piece of writing that eloquently and poignantly shows the effect of our government’s squeeze on the NHS and social care system. It shows the real effect, on a real person. Not the hype, spin and lies that are put about by the government, but the simple, painful fact that in a system that is not properly funded acutely unwell people cannot access treatment in a timely manner.

And it is, as is so much in life, all about the money. It isn’t about junior doctors, and seven day working, and ‘health tourism’ (not that health tourism exists anyway). It’s about this government providing less and less money to fund the healthcare that we all need and pay for. And we have that money, it is a myth to suggest that we don’t. Ask yourself this… If the money that had been provided to bail out the banks had been provided to the NHS instead, what would our society look like?

Now that’s a simplistic question, I know that. And I don’t subscribe to the view that banking is of no use or value in our economy. But if we hadn’t bailed them out to the extent that we did would our society have fallen off a cliff? I doubt it. But we chose to bail them out, while simultaneously choosing to starve the NHS of the resources it needs.

And if we can’t keep our population (ie workforce / tax payers) well… Then what effect will that have on our economy?”

And one –  positive – finally, from the DWP:

“We confirm you will get Employment Support Allowance. We’ll send you a letter about this. Please send your medical certificate.”

Official, but human. No mention of the dreaded Fit Note. Thanks for that.







No Beds

1262504_10151822703488251_1557854932_oThe op date will be confirmed today and I might have 2 more days, or not. All action at home; we’ve moved the room around and there’s a desk space which was a key job to finish.

Honey aka Bun, has been behaving oddly, asking to go out at 1.30am and vanishing for ¾ an hour then lying on the frosty grass. While dogs are acutely sensitive to vibes, she is otherwise secure, has stayed here often since I got her, gets fed sausage and other delicacies (I once arrived to collect her after a run of shifts to hear Mum exclaiming: “Damn! I’ve overcooked Honey’s asparagus!”)  I’m concerned there’s something else going on. We go to the Vet’s and have her anal glands checked, finding that they are indeed full. That’s a relief for her and me.

Wandering up the footpath with my walking pole for security (I negotiated with Mum that I could go out alone provided she knows where I am and I have my phone) I feel horribly weak. I have a fine, internal tremor, one that I’m unsure is physiological. Sub-butterflies perhaps, combined with the general knock off in strength that I’ve been struggling with for several weeks. I ring Kari and as ever we end up laughing and she suggests we go off on a trip to Budapest’s thermal baths, and also Rekjyavik. Maybe in a couple of weeks? I tell her about chatting to my friend yesterday, discussing menopause symptoms. C had listed hers:

“And I think… is there something wrong? No, it’s just the menopause”.

“Or it might be a brain tumour.” I reply and we end up guffawing.

Taking the advice of my Macmillan supporter, I have accepted practical offers of help, and so a friend who’s an IT bod came with his partner and dogs for lunch, bringing fabulous cakes from Exeter including one called Ginger Dick. So voice recognition is now set up on the netbook, and I have extra memory on order to speed up the operation which M will put in next week sometime. We look at transferring all my Mac files from the Macbook, and I list all my passwords and email addresses attached to accounts in a notebook. Another massive relief. It’s as ever, lovely to chat about my stuff and gain another perspective, and also to talk of their lives and our dogs and swimming expeditions.

No call from neurosurgery, so I rang at 4 and was put through to Mr Fewings’ secretary who tells me she will call as soon as she knows, but that there are no beds.  They’re in a meeting now, trying to discharge some people, and there are six of us on the list this week to find beds for (along with emergencies, of course).

The NHS has been dropping beds since 2010 and the start of austerity. We have among the lowest number of beds per head in the developed world. By beds, I mean not just a bed, but also the staff and equipment to man it. This is related to cost, and it’s of course considered inefficient to ever have an unoccupied bed. But a hospital is not a Premier Inn; for the system to operate properly there must be resilience, some flex in the system, so that in addition to the unpredictability of acute illnesses and admissions, there is also the ability to contain people who cannot be discharged when expected.

This latter point is a huge one. Bed blocking is the result of massive cuts to social care budgets since 2010. The extra strain on the NHS makes a mockery of all those claims of ring-fenced budgets which are in any case misleading because there is no contingency for increased usage nor for inflation – Southwestern Ambulance Service’s usage rises 7% annually, and has done for years.

The average loss (devolved to councils so that the government can lay the blame with their budgeting rather than the 35% central cuts to local services) from social care budgets is between 30-35% since the coalition took over in 2010. Incidentally, Tory run councils including my own are receiving bail outs from government to protect some key services, while Labour run councils are not.

If there is no safety net when a vulnerable person (frail elderly being the most likely group to be in this situation) is discharged, then they can’t go home. Elderly people usually do not need to be treated as medical emergencies and it’s not in their interests either. I’ve taken many elderly people back in to hospital in the 24 hours after discharge, because they can’t cope. Local, community hospital beds play a huge role here, because they provide a place of safety where assessment and treatment can take place, in a location where friends and family can easily visit. These people need to be supported, to have their conditions managed, to be loved, not dashed through a system that’s there to try to cure them; there’s no cure for old age.

Community hospital beds are like gold dust, and ambulances are routinely forced take elderly, frail patients (“off legs” is the generic term used, meaning anything from a urine infection, to constipation, to heart failure) into the acute hospital which in this area might be 50 miles away. Often they’re confused, and on an inappropriate ward (surgical, oncology) where they become distressed and wander around. I once arrived on the AMU in the Royal Devon and Exeter to find a bank nurse specially employed for the task walking up and down the bays with a demented elderly woman who was wailing, and screaming that her husband had been killed. The other patients were clearly unwell and upset, as was this poor woman who had been sent in due to “increased confusion” from a residential care home, which clearly could not manage her.

In my area, Moretonhampstead wards were closed not long ago, on the basis that the Okehampton community hospital was ‘underused’. It most certainly would not have been underused had those beds been open – but they wer closed to save money. We could have filled them twice over, but instead all those people were being carted off to Exeter by an ambulance (25 miles rather than a local trip) which is then not available for 999 calls for well over an hour. And Exeter fills up, starts to breach the 4 hour ED targets, blocks at the AMU. Add to that the resultant travel concerns for elderly relatives who have to hike 16 miles by bus to visit patients who might well be end of life.

The justification for closing beds is always some combination of underuse/efficiency and the provision of social care in the community. The latter is often – but not always – a grand idea but it costs a lot of money to set up and run properly, and also requires huge support for carers. Imagine too living with a hospital bed in your sitting room, hoists along the ceiling through the doors to the bathroom.  It’s an ideal, but the impetus is key. Currently care in own homes is used to justify cost-cutting closures, when it’s anything but the cheaper option. The costs are moved elsewhere  (GP, ambulance service, emergency departments, acute medical units). And at the end of the line is someone like me, awaiting urgent surgery, but without a bed. Planned surgery will of course have already been cancelled. This is anything but efficient. It’s a massive waste of costly theatre time and all those massively expert staff who are now waiting around rather than doing their jobs.

So here I am in the wee hours, with no idea whether my op will go ahead this week at all.

Last eve my brother Iggy, sister in law Sarah and nephews Lee and Max arrived along with Lee’s gorgeous partner Louise. It was lovely to see them, though it felt rather like the last supper (with salty snacks rather than supper). I showed them my text from the DWP. Their faces said it all.

Reading over this post it sounds flat, and reflects I think a slight separation I feel from my soul. I’m off to Bantham today because I’ve been doing a job for the Outdoor Swimming Society helping to set up for an advert involving wild swimmers. I’m really going along for the craic, because I’m not up to a whole lot physically or emotionally, but I’m so looking forward to spending a day with the production crew and my friends. I guess in my head I’m floating down the Aune Swoosh, one of our favourite swims, and ahead of me is the estuary rip and the reefs and breakers of Burgh and Bantham. But I’m seeing and feeling it from the drone that filmed this swim last year, swooping overhead and in and out of different parts of the action, unable to quite hear the water, taste the salt or see the fish.

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