Cheshire Cat Hunt: it’s a no brainer

Firstly, a warning that this post talks about prognosis for glioblastoma grade 4 (GBM4), so if you’d rather not know, stop here.

I’ve decided on an alliterative title today, don’t say it too fast.

On Monday, I met my consultant oncologist, Dr Sarah Pascoe, at Derriford Hospital. I had encountered her some years ago when she came to talk to us on a paramedic training day about the management of neutropenic sepsis, which is a life-threatening complication of chemotherapy treatment. She had made quite an impression then.

I like her at once; she’s friendly, warm, open, straight-talking and has a sense of humour. We talk generally, and in detail about Hunt the tumour and how he might behave in future. The treatment on offer is:

Six weeks of radiotherapy, which will be daily on weekdays, with weekends off.

Six weeks of oral chemotherapy daily, with a drug called Temozolomide; this runs concurrently with the radiotherapy and enhances its effectiveness by making the cancer cells more vulnerable to it. I will also get an antibiotic to prevent a type of pneumonia that is common with this treatment, which affects the immune system and makes you especially vulnerable to infections, and also means your body is unable to deal with them.

Following this treatment will be a six month course of chemotherapy with oral Temozolomide, taken for four days, with 24 days off.

A big concern for me as you know is in weighing up the value of treatment over months and which has some significant effects, with quality of life. That’s a particularly tough call when the prognosis for GBM4 can be limited to months. Dr Sarah is clear that my surgical result and fitness gives me a good chance of the proposed treatment working well and that I should tolerate it well too. The aim is to prolong symptom-free life.  Of course there are risks, in particular: infections; somnolence that might go on for 6 weeks post radiotherapy; sickness; blood clots; and fitting. Those can be managed however.

If I opt for no treatment I’d be looking at months, and I would be unwell with neurological problems for a significant part of that. The evidence, she says, supports the treatment in terms of quality of life. So, it’s a no brainer. Dr Sarah says that in some cases she would not recommend the treatment because it would not give a good quality of life, so we are clear on that.

When Hunt recurs, treatment options depend on where the recurrence is: this might be around the site where he originated, which is my right parietal lobe; or it might be elsewhere in the brain where he’s not accessible. So he might or might not be surgically accessible, or vulnerable to radiotherapy.

I ask about swimming during the treatment (and that’s the huge advantage of oral chemotherapy).

Are you swimming in swamp water? Asks Dr Sarah.

No, moorland rivers or the sea… 

She sees no reason why I can’t swim if I feel up to it, with the proviso that I must not swim alone because of the risk of fitting.

I sign the consents.

I go to have my bloods taken, and am given an appointment on Monday for a CT scan to measure me for my radiotherapy mask. This will hold my head still while the radiotherapy takes place. The treatment should start in the next three to four weeks.

DWP

Because I have a GBM4, Sarah will issue a form DS1500, which means I get full ESA including the support group rate and full PIP with mobility allowance, no questions asked. So my struggle with DWP is at an end.

As an aside, I had called them on the previous Friday because I still hadn’t got to grips with the medical and work assessment forms, and the deadline was 6 April. I had my histology, but was unsure whether I would get the DS1500. On this occasion I spoke to a lovely woman who was clearly old school, and who told me not to worry about anything, and annotated my files to ensure I’d not have any problems She checked I was in touch with Macmillan, which I am, and explained the support they can give including excellent benefits advice (in sharp contrast to the initial experience in which the advisor insisted that Macmillan ARE NOT BENEFITS TRAINED). It does highlight the culture of DWP which has changed from one of being there to help and advise, to one of being there to identify and punish scroungers.

I leave Dr Sarah, get my ticket for the bloods, and buy a cup of tea and a Bakewell tart with which to take my dex. I  walk to the table, and as I go to put the tea down, the strap of my bag slips from my shoulder and falls, so I spill half the tea over the table and my arm. Once the mess is mopped, I open the Bakewell tart. I peel off the layer of sugar icing, and find a heavy, tasteless, clag, like sawdust spilling from a corpse. I feel a bit shaky.

There’s something quite final about being officially terminally ill, to the point where even the government will admit you’re not going to recover. The Bakewell tart feels like the shape of things to come.

 

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What is Hunt made of…

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My appointment is at three.

Days and weeks swirl, entwine, unravel, knit into new forms.

There was a melt down, and I write that in the passive because that’s how it feels; a passive, dissociative melt down with a brake. I know what’s coming isn’t good, I know. But do I?

And still there is admin, and negotiation, and worries about extraneous things. I haven’t sorted my work questionnaire for DWP, who are back on the Fit Note references. I had a warning letter because time runs out on 6th. But I can’t do it, I can’t work out how to organise it, need to speak to HMRC, can’t work it out. Can’t decide.

I went to the Tavistock Macmillan drop in on Friday, they will write me a letter. I was talking about all sorts, but not really. My brain is in control in some sense, but I’ve lost me in there.

I sense skeins of spider silk, spinning from my brain, around my physical body, back through the mind, a kind of pupa perhaps. Such a weird physical, mental, emotional space. An evisceration of the idea of mind-body dualism, where I cannot tell cause from effect, psyche from physiology. My body is constrained by loss of sensory function in my face, legs and hands, dead numbness, equating to the numbness in my mind. I have an oval area about a foot long, laterally above my left knee, which is dead, yet burns intermittently; I thought it was an area of steroid-related sandpaper skin, of which I have several. But the skin there is soft. There is an absence of muscle, a flatness. The tight area in my skull where the craniotomy heals tugs gently across the diagonal.  I’m weak. I sit and feel the weakness, draining, draining. Steroids? I’m still less than three weeks from the op. Permanent or temporary? A mix? My strong body is gone, and my mind struggles; and I know not whether either will return.

A swimming friend, whom I know only via Facebook, sent me Atul Gawande’s book Being Mortal in both written and audio form. I read and listened, in short bursts over the past week or so. The gift was in response to my blog post Death and all his enemies about social care and our elderly people in particular, and the way we torture people at the end of their lives in such a misguided mess of enforced treatment and isolation. The book is astounding. I am already open to such ideas, yet the range of evidence and approaches, and some of the things I’ve personally done to persuade people to accept care, hit me too. How complicit are we all in this?

Then, where the book turns to treatment for illnesses such as mine, and the purpose of it, then to the boundaries of palliative care, I find myself reconsidering much about the treatments I might be willing to accept now – in particular brain radiotherapy which I know is the primary treatment for me whatever the outcome today. While Gawande talks about the market-driven US (not exclusively – his explanation of the extended family and their care for his own elderly forbears in India is englightening), there are plenty of vested interests at play anywhere Big Pharma and the medical model hold sway. Enmesh those with our current cultural refusal to discuss or accept death, and we have a complexity that is beyond us.

There are many people attempting to address these issues, and a few are succeeding in inspirational ways.  But in a climate where failed austerity policies simply use such ideas as spin in order to justify cuts, and where profit trumps all other value, there will never be anything other than a mess. That’s the real choice; most of us will end up either dying from an illness, or decomposing into loneliness and frailty where the point of our lives is lost. That will most likely be you one day. So would you like a tax cut and a nightmare end?  Or would you prefer to have excellent social and health care that ensures your happiness and a managed decline during which you aren’t locked in a nursing home without your pet, or the ability to wander off when you feel like it, or to drink your nightly G&T? It’s about control. Social enterprise, decent social services in the public sector. It’s not about profit for offshore hedge funds, or investment rooms in nursing homes.

I’ve no idea what’s going to happen later on when I find out exactly what Hunt was made of. But I know that I have choices, and I have plenty of research to undertake. I’m going alone to the appointment; I know it’s going to be hard, but I have to remove myself from the worry of how anyone else there is going to take the news too, and I can’t. So I’d rather take it in myself, make notes, and then explain later on.

Thank you for the lovely messages, and to D for the book.

 

 

 

Days of whine and roses

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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.

 

Blurred

The blurred vision that hit me yesterday evening really did hit me. I tried to be calm, to contextualise it, but the realisation that such a thing could happen led to a kind of bleakness, especially because I couldn’t get on google and research it.

After dinner, I washed my face, and noticed I have eyebags that are protruding over 1cm, which started me thinking more about the steroids as a cause. By 9 I’d worked out how to see enough to read, and as I posted in a PS, blurred vision is on the list of side effects for dexamethasone – as is, rarely, breathlessness which has worsened recently as I said.

I can’t go with the cataracts, since it’s so soon and it developed in a flash, in both eyes (although I suppose it might have started in one, and the other compensated, till that went too).

I might suspect Hunt if it were in one eye, perhaps, but he’s in the wrong place for that unless generalised swelling were responsible. Over the past couple of weeks, though, the signs and symptoms associated with that swelling have improved steadily to the point where I know the steroids are working, so that doesn’t fit. So I feel calmer this morning, but the magnitude of the whole is encroaching on me by degrees and leaps as the dragging wait for surgery continues.

Back to that brain thing again, so many possible consequences for so many areas of my life, so that I’m back to bargaining (with whom? I don’t know) between preferable, tolerable and no way. I have a bloody good chance at least initially of recovering, but of course there are risks, and then there’s the whole cancer thing, and the effects of the treatment which can be permanent.

On a positive note, I’ve experimented with the ondansetron and it’s marvellous. I take 4mg about 15 minutes before breakfast and steroids, then again before lunch, and before dinner. If I take them twice a day as suggested, lunch is hard particularly because the second steroid dose is at one, and I most certainly need ondansetron for that. I forgot the dinner ondansetron last eve, what with everything else, and felt suddenly and dramatically nauseous at 9 till I popped the last pill of the day.

The saga of the Ms issue returned on Saturday; the final forms from the DWP arrived, following that tussle with the DWP advisor over the legality of a woman wishing to be addressed as ‘Ms’.  Under ‘title’, it says ‘Miss’. I’ve crossed it out, over-emphatically, in black biro and replaced it with and inch-high ‘MS‘. Take that DWP advisor! And I trust it won’t result in a delay to my benefits. I’m in no mood to compromise.

A final comment from my Mum, Jenny:

“Now don’t forget to take notes on all this, I’d say you’re sub-standard mentally and you’ll forget.”

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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Compassion

Text message to me from DWP:

“We have received your Employment and Support Allowance claim.

You must send your Fit Note asap  and then we will contact you with our decision by letter”.

Phone call between me and my GP:

“The DWP have asked me for something called a Fit Note.”

“Oh for God’s sake! Poor you, oh really! Malignant neoplasm, how about three months of not being fit and we can go from there?”

Jeremy Hunt, 7 March 2014:

The Secretary of State for Health on the important changes to support staff so they can raise concerns about patient care and safety.

“One year on from Francis, my top priority remains to support you in creating a more patient-centred, compassionate NHS. So this week I have written to all NHS Trusts to reiterate how strongly I feel that staff should be able to raise any concerns about patient care and safety. We have put in place reforms to give you that reassurance, but in light of recent media reports I want it to be absolutely clear that whistleblowers speaking out about poor care should be confident they will be listened to.

To support you in this we have made a number of important changes. We have ensured that all NHS employment contracts include the right to raise concerns about care and amended the NHS Constitution to strengthen the commitment to supporting staff who do so. We are also funding a national helpline – independent from employers and the Department of Health and completely confidential – to provide advice to anyone in health or social care who wants to raise a concern. The number is 08000 724 725. We are also introducing a new duty of candour, so that when things go wrong, organisations have a duty to admit mistakes and tell patients what has happened. The professional regulators will be working together to include a new consistent professional duty of candour in codes of conduct. Together, these changes are intended to support you by building the open culture we need and where you can be confident that you can speak up for the patients in your care.”