Days of whine and roses


Here goes then; Andy Williams on the iPhone and an emotional emitus of sorts. I’m trying to be honest about how I feel, but sometimes it just isn’t going to work and I have to divert away because I don’t know how to control it, nor what to think, nor how to express my world at the moment. I’m not even sure where I am, other than it’s a liminal sort of place between the me that used to be, and the me that is very not as she used to be.

My world is here, in a house that’s not mine, with some of my things, and my parents and dog. I can’t drive,  or walk far. I’ve not had many physical visitors since Op Hunt Saboteur, and I’ve not felt engaged in any real sense with people other than occasionally; it’s like looking in through windows streaked with years of grime. I’ve been angry rather than sad, knowing it’s not going to be good news next week, yet not really knowing how bad it might be and how I’ll react if that’s the case. I’ve picked up on campaigning Facebook posts, something I really didn’t want to do, and become involved with people who are cross with me which I can’t deal with. It’s a struggle to type them, but I can see to read online far better than I can in a book. I’m so angry with the government I can’t really think, the scale of their perfidy in selling all our assets off. Fear at what they’ll do next, then the thought that actually why do I care? I doubt I’ll be here for the revolution.

Displacement of course, but then I’ve always been displaced by injustice. I’ve still heard nothing from Geoffrey Cox QC MP. But I have so many other administrative tasks to sort out, and I can’t get my head around them at all. One is my tax return, due now I think. Apparently I’ll get fined if it’s late, but it’s impossible to speak to them without hanging on the phone for literally hours which I can’t do either. The second is benefits because I’m afraid I’ll lose my £73.10 per week if I do Airbnb in an effort to keep my cottage although it’s only going to pay the bills, and maybe not always in full.  Then there’s the mortgage cock ups that I thought I’d managed to address with Nat West, who have admitted the repeated failure to take my DD was their fault, acknowledged that I wouldn’t have noticed what with everything else going on in my head, and paid me £50 compensation, before sending me a letter telling me that credit reference agencies will be informed of my late payments. I ended up crying.

Oh, and I have to complete my work assessment for the DWP by 6 April, which also involves knowing what treatment is next. And I have to tell them about Airbnb, which means I need another appointment with the Macmillan benefits advisor. So I woke up worrying this morning about that.

My world is the same every day. I wake at about 3am, I get a mug of ginger tea and oatcakes with some cheese. I fiddle around with my iPhone on twitter or Facebook. I blog or write about whatever’s in my head in a document that I might use parts of in another blog. I wait for the first light to creep beneath the blind, for the bird band to strike up. Then I get up and make tea and toast, take my steroids and other meds.

I have breakfast, Mum tries to chat and I’m grumpy because I hate mornings and want to be left alone. Then I try to be chatty for a bit. I go back to bed, doze or sleep for a couple of hours. I get up, take more steroids with more food, go out with Bun maybe; wander really slowly feeling the air abrasive in my chest, count my respiratory rate (higher than usual), wonder what the nodules on my lungs are.

I go back to bed in the afternoon if I can, sleep or doze, think a bit, Facebook and Twitter, mostly political. I get up for dinner, chat for a bit, go back to bed sometimes, sometimes just sit here and listen to music. Then I have a snack and go to bed at 11 ish till 3, and it all starts again. I am terminally bored.

My left side is noticeably weaker as of Friday, and my arm and leg start to feel hollow. By yesterday I had realised my left arm had no muscle tone at all, and my left knee started to buckle. I think often about what to do. Both hands had developed a mild tremor. I’d ended up having to clean my cottage with Mum, and although I did the light work I felt shattered. But it was developing before that. Prime suspect is the tailed dose of steroids; is the brain swelling returning? I feel unsafe on the stairs. I already know that dexamethasone can cause myopathy or muscle wastage quite quickly in some people, especially if they develop Cushingoid features which I most certainly have (Cushing’s syndrome of moon face and belly fat, rather than the more cadaverously dashing Peter Cushing). But I have been tailing off and on a low dose of 2mg twice a day for four days, so that’s less likely.

My left arm is noticeably smaller than the right, although I still have a pretty good bicep on the right. My left knee has swollen from the osteoarthritis and the muscles are not defined at all, though I can still see muscle on the right. My face is more numb than before (the inside of my cheeks and mouth have been that way for some time, but my rubbery mouth had improved with the steroids). I dribble water when drinking, twice. When I flex the right arm, the bicep feels strong. On the left, I can’t feel it at all. My left hand is also more numb.

I think it has to be some returning cerebral oedema. The limb deficits I have are left sided, apart from the weak and strange writing, so my left side is going to be more affected by weakness in any case. But the right side isn’t feeling much different as far as I can tell. I consider calling the out of hours GP, but decide against it for now.

We’re off to lunch with my brother and family, and I double my lunchtime dose of dex back to 4mg. We have a lovely meal of lemon sole Jamaican style with rice and peas and plantain. He’s a mean cook my brother. I’m still wobbly as we arrive home, but I can feel some tone in my left bicep. Before I had that odd sensation of energy vanishing like water draining from the muscles. By 6 I feel more steady on the stairs, and the hollow in bicep and knee has started to fill. A most weird thing, and a huge relief. By this afternoon, on the doubled dose, I’m able to walk Bun a little way on the moors.

The weight isn’t going to help, but I can’t stop eating. My vision had improved to vaguely smeared, but it returned to blurry most of the time within a day.

Looking out of the window at the hammering rain that heralds Storm Katy, the wind begins to bluster. I feel that need to sniff the air and get my hair tangled in the tempest, to be elemental. But it would probably blow me over, and I’d have to get past my Mum, who at 78 is stronger than me. I wonder whether I’ll ever feel okay again, enough to walk up tors, or swim in a strong current or jump into the river. I open the window and let the storm in.

This week I’ve resolved to see people, if only for a short time. It’s the endless sameness, the need for sleep every morning and afternoon. I sleep. I spend most of my time in the bedroom, like a transitional teenager.  Sausage, the dog formerly known as Bun, spends the day on my bed with me, then the evening downstairs with Mum and Dad.

Part of the problem is that I can’t read books or watch films, something I do normally. I can see screens better than books, but can’t concentrate enough to sustain it. The audio books make me fall asleep. I listen to Radio 4 and music.

My music choices are odd too; I’m not usually into folk, but have somehow downloaded a fair bit, including some of the kind that I hate involving fair maidens with child and dastardly men who skip away scot free. I’ve discovered Purcell’s Dido and Aeneas with Jessye Norman as Dido, and play that over and over (thanks Fi). Madame Butterfly is always on my list, and that’s remained. Then there’s Anthony and the Johnsons who are calling to me at the moment; Andy Williams, Dusty, a bit of Adele, Birdy, Kate Bush, Eels, Fleet Foxes. Rachmaninov. Bowie. Nadia Reid, Tanita Tikaram, Ricki Lee Jones, Mozart’s Requiem. Also some Sicilian music I discovered via watching Montalbano on BBC 4; Olivia Sellerio, and the amazing Requiem by Fratelli Mancuso and Armoniosoincanto which is Sicilian folk and Latin choral music combined. It seems to replace my emotions rather than eliciting them; vicarious unfeeling.

I want this weekend to be over. I know I’m not going to hear anything till Tuesday at the earliest. But I don’t want to wish time away. I received a beautiful bunch of tied flowers in the post, from my school friend Pip’s parents; bay leaves, yellow roses, white somethings and purple fresias and irises. They lift me when I look at them. My colours.


Help and Operation Hunt Saboteur

One of the most important pieces of advice I was given just two days after diagnosis came from my Macmillan supporter, who suggested I should ask for and accept practical help. It’s grown in a way I never envisaged, through my IT guru – who comes with a leg-shaving guru – to lifts for dog walks, to people dealing with admin concerns that I can’t get my head around.

These acts of friendship and kindness, together with visits and messages and calls and thoughtful gifts, have done more than anything to keep me going through a hideous time of fear and general shite, worsened by feeling fairly horrid most of the time. Little things to look forward to allow me to make it through to the evening, then the night. I also have a swimmy patchwork blanket under construction which I think will be visible from space (more on that another time).

Money, however, was has been an overarching concern. One friend has already helped me more than I can say with a loan, topped up without asking the other day. Then I had a call from Plum saying that various people had contacted her about helping me out in a practical way by donating money to a fund. I felt I’d begged especially because I’ve blogged about it, and refused. Plum being a formidable opponent in a debate on almost any topic (Burgh Island Hotel too expensive? You’re doing me a favour, been wanting to go for 20 years and never had an excuse), talked me round to her way of thinking, which is that people want to give me money and it makes them feel better too; it’s something I’ve done myself, and till recently when I could no longer afford it, I’ve always given a monthly sum to several charities. I know that makes me feel good, and feel that where I can’t do much personally about a situation there’s someone out there who can and they need that money. Then there’s the thought that maybe you could do something, but by handing the money over you don’t need to bother, it calms your conscience. There’s also something about accepting financial help from people you know, (and in this case some people you don’t) based on an illness with all that potential for emotional blackmail, that I find extremely problematic. My decision to blog, warts and all, felt like a part of that impetus.

Eventually, Plum made the point that if I didn’t agree to the fund, cheques were going to start arriving through the post so I might as well give in, let people help me, and make all of us feel better. I capitulated, with the stipulation that if everything by some miracle turns out to be okay, I will return what I can and give the rest to Macmillan.The fund was set up, and it produced an overwhelming response of donations and lovely messages that I could barely deal with. I couldn’t answer the phone to Plum because I couldn’t speak. Not everyone has money to spare, and I worry about them feeling pressure, and I’m sure some people have gone without on my behalf. But the relief of knowing I can cover the bills and not worry about cashflow for a considerable time is impossible to exaggerate, even for me… So thank you for removing that deep worry, and thank you for the big and little acts of friendship which play a vital role in my ability to swim on through the tons of nasty plastic in the sea.

Poverty is on my mind in other ways, not least because I know I have people who can help me, while, many in my situation have neither the resources nor the emotional support. I read some fascinating research on the effects of a severe scarcity of a resource, whether that’s food or money, on decision making. I won’t go into detail here now, but do read the linked article. It’s the reason I bought a bottle of wine on the day in December when I’d just lost a whole load of online marking and any hope of paying the bills. And it’s the reason for giant tvs, pay day loans and fags when you’re out of work. Note too that there’s a government group studying this – so why the hell is the government ignoring their own research?

Yesterday they forced through a cut of £30 per week to a particular form of Employment Support Allowance (ESA) that will affect disabled people directly. Apparently this cut will ‘incentivise’ disabled people to find work. The impact assessment has not been carried out, and the Lords were going to insist is was before reconsidering the legislation. The government used their financial veto to overrule the Lords. My own MP Geoffrey Cox, and Jeremy Hunt, were among those MPs who voted this through, as was Dr Sarah Wollaston, a Tory MP whom I had met in a professional capacity a couple of times in her work as a GP, and for whom I had a great deal of respect.

So, with no evidence whatsoever, the lifeline of financial support for a highly vulnerable group of people has been removed. I can tell you categorically that this nasty, ideologically based (I can’t help but see arbeit macht frei over the gates of Nazi concentration camps) persecution of members of our society will cost all of us in the end; it will cost the welfare of the individuals involved, and it will cost the ambulance service and often the police who go in to pick up the pieces, and the social services already in crisis because of six years of cuts, and the other NHS hospital services and GPs who are trying to manage the complex health conditions that arise, time and time again, because of poverty.

Poor people need help and support because poverty is the cause of their problems. Disabilty causes poverty – try getting a living wage job when you’re disabled (yes, I know there are exceptions, just as there are a few people in parliament who aren’t men). Poverty is not a sign of some inherent personal failure, some genetic or welfare state-induced predisposition to workshyness and fecklessness. Poverty is the cause of it. And to refuse to even assess the impact of such a cut is quite simply criminal.

My friends are wonderful and I truly believe that most people would behave decently if they were in a personal interaction with the focus of their hatred and disgust. Thank heavens I don’t have to rely on the government to support me.

Our regulars as paramedics are the people who suffer from long-term, chronic illnesses, and whose longevity is reduced accordingly by poverty. Some of them are chancers, but why are chancers who are wealthy accepted while those who are poor are not? You survive how you can.

I also received yesterday a letter from DWP, who have at least stopped referring to my need for a Fit Note, and who now want a long work-related assessment filling out to check whether or not I might be able to work at all. Now I have trouble writing at the moment. I can’t control a pen all that well. I don’t know what treatment I’m going to have, nor how it will affect me, till I’ve had the surgery so I can’t tell DWP what they want to know by next week, or my benefit might not be paid.

One more stress, while the government assumes I’m faking till I prove otherwise.

Clearly it’s a travesty that I’m asking taxpayers to support me in my time of need. And some of the taxes I’ve paid over the years have gone to clean MPs’ moats and redesign their duck houses, and pay their 11% payrise last year, and the 1% this year. The welfare state is insurance, insurance against the crappy hands that life deals some of us. Its value is not financial, its value is as a service that doesn’t hound people like me, or add to our already stratospheric levels of stress. If you don’t need it ever (and research shows that most of us get back more than we pay in to the NHS over a lifetime), then brilliant. You don’t expect to get your car insurance back if you’re lucky enough not to crash.

Do I happen to know all the nice, caring people? Are others really that horrible in real life, that they could look someone in the eye and believe that this person deserves to be persecuted and live in penury because a load of super-rich bankers got even more greedy and stole all our money? How have they managed to blame it on those of us who have the bad luck to have hit the bottom?

I wanted to write about a couple of families I knew but with Operation Hunt Saboteur imminent (Friday) I’ve had other commitments to deal with today. So this post is rather ranty, and less personal that I’d wished. I hope you can forgive that. It’s a day of random emotions and no little relief, but also one of anger at what’s being done to our NHS. It’s day one of the junior doctors’ strike. I’m with you, junior doctors.


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.