Sick

One of the more subtle symptoms of my brain tumour is a vague, intermittent nausea. It’s one of those feelings I’ve been able to ignore perhaps because it’s not that troubling, and I’m used to GI symptoms.

The nausea worsened with steroids which are pretty irritating to the gut and my GP Dr H prescribed domperidone to help alleviate it a couple of days after the diagnosis. That helped, and enabled me to eat more which in turn made me feel better, certainly later in the day once the steroid doses were done.

But in the past two or three days the nausea has worsened considerably, from a slight annoyance to something more; for most of the day I’ve grown an acid gremlin that sits in the pit of my stomach and threatens to shoot. It’s not reflux, and eating doesn’t help. This afternoon I thought I might actually vomit if I laid down.

The duty GP at my surgery is Dr E, a man I know and like very much, partly because I’ve seen him a few times in recent months with my various troubles during which he has been excellent; he also works for the out of hours GP service locally. On the occasions when I’ve called him regarding a patient – one of which was especially complex and and involved an extremely upsetting mental health crisis where as ever we had no access to specialist resources – he has been unfailing in his willingness and ability to sort the most intractable situations.

Dr E had called me within 20 minutes, at 4.45 on a Friday, which was the point where I realised the domperidone was no longer working and that I have another weekend to get through. We discussed the options. His solution is to hit it with the big guns, because as he says, the point is to alleviate the symptoms for this period until I undergo surgery. So, within an hour my brother Dave has collected Ondansetron from the pharmacy.

It’s the first truly effective, multi-purpose anti-emetic that paramedics here were authorised to administer, and I have used it in a number of situations to great effect. I’m to take it prophylactically – with the aim of preventing nausea rather than treating it – starting with 4mg twice a day, with the option to double either or both doses.

Another  big up for our NHS.

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Dreams

Talking to my recently-bereaved friend H earlier, she tells me of a striking dream she had which a friend analysed for her. I’ve always had lucid dreams, and some of those have been recurring, nightmare types where I can often change an event, though not necessarily in a way that avoids the horrible tangle at the end. We have a meandering conversation, comparing dreams and our ability to control them.

I realise that I’ve not dreamed since the diagnosis, and I wonder if that’s the steroids, or something else. I always wake thinking about my situation, but from an apparent head void. I get up and write; I can’t focus on reading as I normally would because those circular thoughts intrude almost at once.

I tell H about the man. He’s always to the left side of the bed, the direction I face most often when sleeping. During the night I’ve been aware of a gradual weight on my chest, a pressure that builds and begins to squeeze the breath from my lungs. I wake but cannot see his face. He’s been there for a year or so, and sometimes, infrequently, in the past.

Since the summer, the man has stopped sitting on my chest, and instead grabs me in a cobra strike from the side, hands clawing my neck, snarling face, silent. It’s the hand that comes for me, fingers spread, arm locked. Sometimes I feel the impact on my neck and I’m so sure he’s real but I can’t move to stop him. My heart pounds till I can consciously pull away from the vision, building the courage to turn on the light and banish him to the night. He’s been there sometimes nightly, more often two or three times a week.

Over that period, I had been having random bouts of depression, struggling to achieve anything concrete. It was a difficult time. I’d lost my job owing to OA and a back injury, and was trying to get a business off the ground. Usually, when I take on a mission, nothing will stop me, but I’ve been unable to stay with anything. Antidepressants made me feel dead in my head, so I stopped taking them. My GP suggested CBT, which I attended, aiming to work on planning my days and achieving some direction. My therapist was confused by me.

“I don’t think you’re depressed, it doesn’t fit. There’s all this anxiety, and maybe that’s related.”

By this time, I was randomly bursting into tears about the refugee situation in Syria and elsewhere, raging at the government for their inactivity. For the first time in my life I stopped watching the news because I couldn’t bear to see those smug faces. I was on Facebook and Twitter for hours posting on thread after thread, feeding trolls on websites in an attempt to get the message across that these are people who are desperate victims, and being called a lefty feminist Hunt repeatedly. I felt hopeless. My therapist tried to direct me to areas where I could make a change, to focus on my own projects, let go of the things I can do nothing about, or regulate the time I spent thinking about it.

Through it all, the nightmare man appeared with increasing frequency. I never felt I’d had a good night’s sleep, ever. A warning about Hunt?

 

Mirror, mirror

IMG_2694The pillow’s kind of in the way, but I doze off for half an hour. My face feels squashed somehow. I wake to find I’m prodding some padding beneath my cheekbones, and have ditched the pillow. In the mirror is a harvest moon, where once was my face.

Ten years younger, lines plumped out.  People pay a fortune to look like this. I peer into the speckled glass.

Mirror mirror on the wall, whose is the fairest face of all?

I prod and note the bulges beneath my eyes and the pads filling what was once the gap between cheekbones and jaw. Ah, the jaw. There’s a chin there, but on either side hang rococo swags. A further, more generous arc of whatever this is curves and wobbles like an oedematous granny in a hammock slung between the angles of my jaw.

The whole is coloured in a spectacularly healthy-looking windburn shade of the type sported by mountaineers striding over crags. No fading Victorian maid for me then, no romantic drape of wan helplessness across a velvet chaise longue (Mum actually has one of these which I had been planning to put to good use later on).

J and A arrive; “Don’t you look well!”

Bloody steroids.

We head off for a walk down the Walkham, me wobbling slightly but feeling quite good, were it not for the nausea that keeps returning today and the Hunt headache. I wonder whether it’s related to biscuit consumption, which has, in the past couple of days, been high. I decide to avoid sugar for a bit, it’s certainly not a good idea to OD on it with steroids. But it’s so comforting.

Bun fossicks in the woodland and swims with J & A in a gorgeous, green-tinged river pool. This one features a chalybeate spring, where iron colours the otherwise palest blue-grey rocks a dramatic rusty red. I examine the spring, and the tumorous galls on a sapling rooted next to it, feeling a connection. I’d love to leap into those lush bubbles, but the chill of winter river temperatures (perhaps between 5 and 7 degrees) is hard to counter when you can’t forge through in a strong and warming way. Plus, I’d most likely have emerged looking like Adam Walker.

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Buck passing

“I understand you have a problem with Derriford Hospital?”

The call is from Geoffrey Cox MP’s office. I’d though I’d been pretty clear yesterday that I have no problem whatsoever with Derriford Hospital, but this of course is the mindset of our political class. Where does the buck stop?

“No, I have no problem whatsoever with Derriford Hospital, nor with anyone else in the NHS. I have been treated amazingly from the first visit to my GP till now. I have a problem with government cuts to social care which is the prime reason that Derriford is being forced to cancel urgent neurosurgery.”

“So what would you like Mr Cox to do?”

I explain again, far more succinctly that I did yesterday, that I’d like to know Mr Cox’s thoughts on the situation with the social care crisis. I’d like to know what the government is doing to solve this crisis.

I would like to know who in government will take responsibility for the situation with the NHS and social care.

I would Mr Cox to ask Jeremy Hunt to take responsibility for the current state of the NHS, and to identify the issues and address the funding gap and the bed shortage. This is his job. I would like him to manage the situation without blaming anyone else, whether that’s trusts, or junior doctors, or nurses.

“I realise this is a political point, but it’s a key political point. My personal situation is the direct result of the failures in government health and social care policies since 2010.”

I tell the aide that I’m not doing this to queue jump, to kick up a stink about my own situation. I’m doing it for all of us waiting for urgent neurosurgery this week, and next.

I can expect a letter, the woman says.

 

Still no beds

I’ve still not heard about my op, and so I call Tony my neuro oncology nurse. He says it’s impossible to say when the surgery will be, as Derriford hospital has had to cancel 90% of its neurosurgery ops this week. I will hear as soon as there’s news, he promises, but it might well be next week now.

Bed-blocking is a key issue, and this is bound with 6 years’ of cuts to social care budgets and the concomitant increased pressures on district general hospitals who have to take up the slack. If there is no care there, and the community hospital beds have been cut repeatedly, managing frail elderly people becomes increasingly a case of shoving them into ‘spare’ beds which exist for acute conditions, surgery and so on. To have 90% of the neurosurgery in a top district center cancelled in a week is pretty devastating.

For my type of diagnosis, NICE guidelines state that I should be referred within two weeks of the diagnosis; this was easily exceeded and I saw my first neurosurgeon within 3 days, specifically because he did not want to leave me hanging around over the weekend without having discussed the plan. He (Mr Titus Berei) then called me personally on the Tuesday morning to tell me he’d spoken to Mr Fewings who is now my consultant. Mr Fewings saw me three days after that. So, nothing but excellence and compassion there. Ditto for the referral from my GP, which was done at 5pm on the evening of my request for an urgent appointment, and the full neurological assessment had been undertaken including all the scans and bloods by 5.30 the following afternoon in the AMU at Derriford.

Now, the guidelines state they have 31 days in which to start treatment, the first part of which is excision of my tumour. Until such time as this can take place, I have no histology, no certainty about what I’m dealing with, and no treatment plan. Imagine hanging there, swinging on gibbet hill, waiting for your neck to snap. Derriford hospital neurosurgery department was ready to smash that target too, were it not for circumstances outside their control, circumstances caused entirely by austerity, government mismanagement of the NHS over the past 6 years and swingeing cuts to social care.

That, bearing in mind my mental state, resulted in a surge of anger. Anger that the real story is not out there. Rage that this government continues to lie and spin and hide evidence and divert the blame onto Trusts for financial mismanagement, stopping bursaries for nurse training, attacking junior doctors over some ridiculous meaningless mandate for a ‘truly 24/7 NHS’ that was predicated on the willful misrepresentation of a report claiming 16% more deaths for those admitted at weekends which even the report’s author countered.

Meanwhile, notice how Jeremy Hunt and Cameron et al take no responsibility, ever, for their briefs. They are paid public servants, yet they are not accountable for their mismanagement of the NHS and other public services, it’s always Labour, or Trusts, or feckless poor people, or doctors, or nurses, or people expecting to be paid fairly for what they do. The (un-mandated read my lips no top down reorganisation of the NHS) Health and Social Care Act 2012 actually removed the responsibility of the Secretary of State for Health to provide free health care for the population. Are you angry? You should be.

Having spoken to Plum this morning, I had posited the idea of contacting my (Tory) MP, and she encouraged that idea strongly. So I dialled Mr Geoffrey Cox QC MP’s surgery in Tavistock and launched into a frighteningly coherent rant through lips which are today especially rubbery, and which I feared would simply degenerate into the tears I have yet to shed (because if I start to cry, I suspect I might not be able to stop).

I have asked several key questions, and made some very specific points about accountability, transparency of government, ideological actions and ignorance of, misrepresentation of or burying of evidence.

I have asked what is going be done to fund social care so that this type of nightmare no longer occurs. And I won’t take the £600k bail outs currently being handed out to Tory-run councils only as an answer to that.

I have asked why we have among the lowest beds per head in Europe.

I have asked how exactly government policy is aiming to deal with the current crisis and who in government is going to take responsibility for it.

I have asked for absolutely no spin or bullshit, nor devolving of blame; I have asked my elected parliamentary representative for straight, open answers on the situation as he sees it and the actions that his government is going to take to address them.

I have pointed out the stupidity of the 24/7 NHS in situations such as this. I didn’t mention the shambolic and pathetic attempts by the Dept of Health advisor the other day to explain in corporate business speak to a committee of MPs exactly how they had failed to cost any of the 24/7 NHS, nor to account for whether or not the £10 billion so-called bail out of the NHS included this money.

I did point out that junior doctors have my support, 100% (the strike next week might potentially affect my surgery too, but I’ll take that), and that this is not about money, it’s about saving the NHS from destruction prior to privatisation.

I warned Mr Cox to be straight, since as a paramedic I know what goes on, I know first-hand the effects of coalition and Tory cuts so he can’t fool me.

I pointed out that anyone can suddenly find themselves in my position – and that’s when you need the NHS.

I mentioned that had we been under an insurance-based system as in the US that I would most likely be sunk now (the least efficient, most expensive, and least equitable system in the world really only seems like a great model with which to replace our incredible, equitable, cost-effective NHS when you’re a politician with personal interests in giant private healthcare and insurance corporations, as numbers of our representatives of all parties are, doesn’t it?)

The NHS, still surviving after years of big investment by Labour, was still a great value system in 2014, but note the plummet to  28th in the world by this year. Now the spiral of crises in funding and beds is hitting terminal velocity; yet it’s not the government’s fault. Regardless of that, if I lived in the US, and if I had managed to get insurance, it would have been massively expensive and studded with exemptions to enable them to avoid paying my bills because of my past medical history.

The advisor I spoke to took the rant with good grace (and rather too many casual ‘okie dokies’ if he is, unlike politicians, subject to a performance review target culture) and is passing the information urgently to Mr Cox, who will be looking at the situation in Derriford, and then I hope addressing some of my policy points and – crucially – the social care crisis.

I’m still feeling rather calm, but it would seem I’m going to really need that shrivelling prayer.

Oh, and I’ve just posted off my DVLA form B1 and driving licence to voluntarily surrender it on medical grounds.

 

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.

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