The last supper

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I had an amazing weekend, during which I waded in the Dart up to my waist. I felt the burn of cold water, but didn’t feel able to dunk my shoulders, although I came close. It’s the breathing again, I think; how deeply it affects me. I went with L and K, a friend and a friend of a friend visiting from up north, and then they took me to Kari’s son’s house where we stayed, wallowed in the wood fired hot tub, chatted about all sorts, ate a lovely Indian takeaway brought by Kari, and hung out. I found another convert to Atul Gawande in K who is a hospital consultant – it’s changed the way she works. It’s so interesting to feel the power of these ideas, and the ways in which they affect the perspectives of individuals both personally and professionally.

I’ve been receiving daily emails of the Brain Tumour Digest (the joys of becoming a brain tumour patient…) from Macmillan. This is a link to recent posts on the Brain Tumour forums, in which patients, and often, relatives, post experiences and questions. It’s not a representative group, of course, and mostly I’ve been watching the GBM4 groups. It’s not curable, it’s highly aggressive, treatment is difficult and often insufficiently evidenced: but the language very often follows a lexicon where the metaphors involve fighting; not giving up; finding and paying for chemotherapy drugs that aren’t funded; a battle to halt the inevitable decline and death. The stories are often horrible and the posters are deeply upset. I haven’t posted anything, I can’t. How do you deal with so much terror, so much grief, and so much desperation? The fight for what, a miracle cure when the tumour isn’t curable? We need a new narrative, one of accepting and finding out what matters most to the individual – that fundamental question that Atul Gawande asks.

Another regular question involves the ketogenic diet, (note that this is an explanatory link, it’s not necessarily an authoritative) where there is some interesting research regarding the ways in which certain tumours metabolise and the fuel they use. This is behind the prevalent cancer loves sugar meme.  However, there’s very little evidence, and there are several clinical trials ongoing in order to see where and how the diet might help. If the diet is helpful, it will depend very much on the individual, the precise type of tumour and a whole host of other variables. It also involves a very restrictive diet and in the case of GBM a small gain in length of life; as someone who loves food, and who is mostly veggie (with the odd fish) I don’t consider this diet worth it. Food is more important to me than gaining a couple of months, if that works in my case and that’s a gamble. There’s a link here debunking some of the myths, again I can’t vouch for its robustness but it will give you some idea of the debates and an alternative view.

This is the case for the majority of treatments, which are now tailored to genes and types of cancers, and is the reason why there’s no point in fighting to receive an expensive drug that won’t work in your specific situation. Sadly there are too many charlatans out there who cite ‘evidence’ that really doesn’t exist, and who make claims for ‘cures’ of cancers which are simply not curable. You might reach a stage of no evidence of disease (NED), but the cancer is still there. Milking desperate people of course is also a market (including Big Pharma and the massive expense of such drugs for what’s often a tiny delay in death at the very end of a life when you are dying and unwell). It’s all too easy to go with the charlatans who suggest you put coffee up your rectum, or to look to the US where medical centers operate and treat people at vast expense, all too often with little in the way of published results and thus evidence for their claims either. It’s based on your ability to pay, and their ability to sell to you. Being Mortal highlights this issue.

So, what is most important to you? If you’re currently well it’s a question worth asking yourself, discussing with your family and friends. If you’re unwell, it’s an essential question. Do you want a prolonged and frantic death, where you take drugs that have horrible side-effects till you die, holding out for as long as possible? Or is it trying what you can that has a decent chance of working for you to give you some quality of life till you know it’s the end of the line? Once you accept death is coming, make it comfortable, manage the process? Let go.

Onset Verification and Dummy Run

Today is the day of the dummy run, when I’ll see how my mind has decided to behave with the actual radiotherapy machine. I’m to be screwed down in the mask while the radiology staff take and set final measurements based on my scans from the other week. I begin the day by sewing through my left index finger with a jeans needle while attempting to install a big zip in some soft furnishings for my brother’s van. The loss of manual dexterity didn’t help. Luckily the needle broke and the zipper foot bent so there’s no actual stitching, and it missed the bone. I let it bleed, then did some first aid with micropore to stop the bleeding. Hopefully, I won’t get an infection.

We pass the junior doctors’ picket line outside the hospital, and I wave and give them the thumbs up. They cheer.

I have a review with a radiographer first, in which we discuss the chemotherapy and radiotherapy, go over the side effects again, and confirm consent for both. I’m given a long list of dates and times for my treatments, including 2.30 tomorrow when I’ll be given my week’s supply of Temozolomide and other medications, before having the first radiotherapy treatment.

In the radiographer’s file are some colour prints of my brain which show the area to be irradiated in yellowy-greens and blues. These are as always a mirror image, and show transverse slices through the brain from, I think,  top to bottom. I’m astonished at the size of it, which in the centre slice crosses the centre line of my brain. I think perhaps it relates to the area of oedema from the original MRI scan. The radiographer says it’s based on various things, including the recent CT in which they imaged the blood supply. I can’t really get the answer I want, which has to do with something I read about oedema as a sign that the blood brain barrier has been compromised. I wonder about the vascularisation of that area, and whether the tumour cells are calling up the reserves. I think about my increasingly focal left-sided headache, and the onset of periods of nausea over the past three days. I am now on 2mg of Dexamethasone only though, and both might be related to that. The radiographer says to keep taking that, and that it’s likely the dose will increase with the radiotherapy.

I’ve also been conversing with a friend of a friend who is a few days ahead of me with treatment for the same type of tumour. He struggled with his mask, and the staff where he’s being treated have cut eye holes in the mask which has helped him no end. I’m glad to have that information. He feels okay after two days’ worth which is also good to know.

Walking through to machine, there are several smiling and friendly staff who set me up on the slab with the various pieces of kit in place. I shuffle up and down and am tweaked into position from all directions.  At this point one of them lowers the mask over my face and clicks it into place. Above me there’s a circular machine (the one that produces the rays), and behind it a very clean and bright white tiled ceiling, and some illuminated photos of autumn leaves against a bright blue sky. I love the colours; oranges and blues jumping out. I can’t focus enough through the plastic blur and my slightly dicky vision to see what type of trees they are. Maybe sycamore? There’s some more fiddling, marking, a green crosshair above me on the machine. It’s to the left, while I want it to be in the centre. Of course that’d be no good since it would miss Hunt altogether. There’s some more space around my cheeks, as the dex swelling has reduced massively over the past few days. I feel comfortable, and relaxed. I start to worry my head might move, but it’s well and truly trapped over the forehead.

The staff all leave, telling me to raise my hand if I need them. I get Blondie’s Maria quite loud which I rather like. The machine resembles a flying saucer but is on an arm. The slab with me on it rises up to meet the machine as it moves into position above my head, with a background whirring sound like the hum of a distant dishwasher. It reminds me of the Southpark episode with the anal probe. I must find out what it’s called, this machine. A rectangular piece approaches the side of my head from the left. I see the sky above. I’m totally relaxed, there’s no enclosure and no darkness, and I have a little more space over my face. I feel the pulsing of my heart in my face but it doesn’t reach my head as it did before. I’m going to be fine.

The whole session takes around 25 minutes, and the staff tell me the actual treatment doesn’t take long – just a few minutes, plus the setting up. I can manage. We also discuss hair loss. I should have a band across the right parietal area, and a reciprocal band on the other side where the radiation exits. The chemotherapy shouldn’t affect my hair. I can have an appointment to be fitted for a wig, but I decline at this stage, mainly because as a hot person I find the thought of a wig unbearable. I can of course change my mind.

Next is a blood test; I’m fine with that too, despite the veins having vanished in my right arm which meant a second go. It helped to have a chatty and funny phlebotomist. I told her about my diagnosis and we discussed doing fun things while you have the chance.

I feel such relief. Tomorrow is the day the treatment starts.

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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.

 

 

 

Endless soap

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Waiting and waiting.

On Monday, I met four friends for lunch, my first outing since Op Hunt Saboteur. It was fantastic to be out with people, eating, talking, laughing and being generally human.

One topic of conversation was the Archers slow burn storyline of coercive domestic abuse as Rob begins to undermine and control Helen, gradually increasing the pressure to the point now where he has hit her. One of my friends had been unable to continue listening.

For many years, I loved East Enders. I enjoyed the bleakness, the characters, the writing and storylines, the families and their relationships. As a writer, I learned a great deal from the ways that those plots interwove, the need for ancient soap history in order to unscramble some of the current issues, the building and releasing of narrative climax.  Soap narratives are always open-ended, there’s never a happy ever after, the end – not even for death.

Remember the return of Dirty Den, whose body had been recovered from the canal a year after his shooting? That British kitchen sink realism contrasted so perfectly with the glamour of US soaps, notably Dallas and Dynasty in the 80s, where characters were horribly burned in car crashes to return as a new, flawlessly beautiful actors after burns surgery. Den just reappeared, teeth bared as usual,  having apparently faked his own death. Then the trope of improbable plots became deliberately hilarious with Footballers’ Wives – the fake tan baby swap was the pinnacle of British soap piss taking meets pantomime.

But East Enders began to change. The Dawn Swann and mad doctor May storyline went on, and on, and on and on. I could no longer suspend disbelief, or even enjoy the disbelief as an end in itself. I stopped watching, because I simply couldn’t take any more of the dragging out. This is a recognised phenomenon, and it’s the one S was mentioning at lunch. It has several names, including ending fatigue. It prevents us from ever attaining the emotional resolution we need, because there never is one.

Waiting, endless waiting. Always waiting.

I love a good story, a good drama. Some writers have that ability to tell tales in such a way that they reveal deeper truths, surprises, twists, new perspectives. Writers like Hilary Mantel, Kate Atkinson, Joanne Harris and Stephen King know how to do that, understand the balance, the importance of characters and situations. Then there are those highly popular storytellers who lack finesse or skill, who just offload a good story in narrative chunks, tell rather than reveal;  Jeffery Archer and Barbara Taylor Bradford are two who rely on that tactic. It might be a rollocking tale, but it leaves me cold because I’m interested in the wider truths. Stephen King describes finding a story as digging up a fossil using a range of suitable tools; if you hack at it with a mallet you’re going to lose lots. (If you look down on Stephen King, read ‘On Writing’; he’s wonderful, and he’s a darned good writer).

My own reveal has been prolonged already; gradual awareness, inquiry, thought, explaining away, and then the start of the resolution for the first part of my narrative; I have a brain tumour, here it is on the MRI scan. I fossicked to find more, was met with honesty, a few suggestions, no definites. That’s the beginning of my narrative as its progressed and I’ve begun to take in what is going to happen. Meanwhile the possible outcomes have narrowed.

At each stage, I’ve met setbacks. The delayed operation, the result of a wider political culture that’s hell bent on privatising and putting finance above social care and public welfare impacting directly on my personal story. Then the cancellation for no bed as I was prepped and ready to go. The melodramatic decision to go on Spotlight. The wait for the next op date, the stress of sitting and waiting, wondering whether the bed would be there for me.

The operation went ahead, I came through remarkably well. I’ve learned that there’s no magic abcess to let me off the hook and as information has dripped in, I’ve understood that this is most likely the illness that will kill me. But I don’t know for sure; maybe I’ll get run over by a bus, or trampled by a Galloway on the moors. I know I will have radiotherapy on my brain first off, I know that I have cancer cells roaming my brain because the protective blood brain barrier has been breached.

I know the prognosis for a GBM4, the type of primary tumour this might be, is poor. I know the prognosis for metastasised cancer (most likely this will be breast cancer, but not for certain) is variable, but poor. I know I have nodules on my left lung that might be further mets. I don’t know how treatable they are, whether the disease process can be slowed in my case.

So here I am, living the endless soap of setbacks and delayed resolutions. As S said about the Archers, the stress comes with the lack of an emotional release, the resolution delayed to the point where you’d rather stop listening.

After my prolonged Easter weekend wait, the two bank holidays, the not hearing, I tried on Tuesday afternoon to discover when my appointment would be. There is one Neurologist Oncology nurse covering the SW this week, one.  I eventually got hold of a secretary in neurology, who told me that I have an appointment next Monday, but as yet no time; she will let me know. Another weekend. My soap opera storyline continues. I wonder whether I might be killed off now, and perhaps return next year as a new actor without cancer.

Sharing

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I’m half floating, and half leopard crawling through mud beneath a cam net. Yet when I wrote Days of whine and roses, I ended on a floral positive – I just cannot help myself – and felt that endless cycle of effort exert itself, the wanting the next part to be over, conflated with knowing I’m wishing my short life away.

Then this message arrived, from a woman I’ve never met and who became a Facebook friend via wild swimming (what else), and who also broadly shares my political views. She’s given permission for me to blog it; I very nearly cheered in a hurrah kind of way, like the deep purple irises bursting from the top of my flowers.

Shared experiences don’t have to be about the same types of life-crises, or about that imaginary hierarchy of illnesses, the one that makes people apologise for daring to compare when they feel their own life event is less significant. It’s not, and that’s not how it feels when you have to live through it: I remember so many times being unable to sleep or eat for worry over an upset that a week later was gone, sorted out, and of little consequence; long chats with people who have faced worse than I ever had, understanding their differing perspectives and how they reached them; potentially serious but recoverable illnesses, in which I was faced by a difficult but finite period of feeling unwell and physical and emotional recovery; worry about ageing and my deteriorating fitness: endless discussions with friends about dementia, and arthritis, and osteoporosis, and how much wine we drink; all of these brought me to the place I am now, hard cored the track I’m stumbling down.

Sharing experiences is so important on a human level, as is that acknowledgement of the need for slumps. The indulgence of the negatives. It’s a beautiful message.

Birdsong, and another day.

I’ve just read ‘Whine and Roses’. I think some of your gloom may be post-op blues (see, there’s even a name for it); you’re bang on time… Mine hit me in waves after my hip replacement, on day 3 (mostly withdrawal from the surgical drugs, I think), day 11ish and week 5. It’s well described in the hip and knee replacement forums, and very widespread. I think it’s it combination of things: drugs, or withdrawal from them; relief after confronting surgery; fear of what’s still to come; sleeplessness and exhaustion; loneliness; grief; and in some cases – definitely me and I guess you – loss of independence… I wept and wept… And you have far more ‘real’ reason than I had.

It’s difficult to handle, but it’s probably what you need. A sort of emotional tempering, like water on heated metal. If your news is bad, you’ll need resilience, and you’ll have more of it if you’ve sat down with your fears and got to know them. If your news is good, well, your feelings need honouring anyway.

Liminal states are difficult, always, and often scary. They are also magic times, I reckon, since you are closer to truths and wisdom, if you let yourself be. Your instincts are good, but your usual coping strategies aren’t available in the same way: you know to “open the window and let the storm in”, emotionally as well as meteorologically, but you need to find some alternatives for walking in the rain and swimming, temporarily at least. Jacuzzis and drawing were my new discoveries… Yours will probably be different…

The summer following my surgery was transformative for me. I’d never been bored before, since I had always been an avid reader, but I stopped being able to read. I hadn’t had two hours to myself for more than a decade, since I’m a working single mother; but that summer, hours alone stretched into days, sometimes. I’d never just SAT, but sit I did, in the sunshine, doing nothing but healing. Quite extraordinary. I was like some kind of pupa, only recently a wriggling caterpillar, not recognising herself, waiting to emerge as – well, maybe not a beautiful butterfly – let’s say a moth!

We’re used to thinking of boredom as something to be prevented or kept as short as possible; but that summer, I discovered that boredom can be transformative…

I’m waffling now, so I’ll stop. What I really want to say is that, although you’re in the loneliest in-between place, it’s ok; it’s where you’re supposed to be right now. If that doesn’t make sense, just ignore me!

Sending love and courage. Xx

I also received a beautiful card that arrived yesterday via Moorgate Ward: it’s the photo on the top of this post showing the path to Bantham beach from the dunes, a view I know so well, and where I walked just a few weeks ago. It’s from an NHS worker in the Midlands who follows my blog, and who thanks me for telling it like it like it is. I thank you back, NHS worker, for your lovely card, for your support, and for carrying on with the bigger fight, to save our NHS.

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.

Notes on social media

It’s now day six post-op, and I’ve been blogging retrospectively to catch up, since I could only experience it and recollect, scrawl notes most of which I couldn’t read, and try to remember the key points of how I felt, the surreality. Once I start, it pours.

This is my primary means of communicating with most people, and consequently I’ve grown a rather weird disconnect with the world, because my head is in a completely different place over the past three days from my blog posts.  I’m being supported from so many quarters, but I had asked not to be messaged directly for a while, though some people have done it anyway, and I appreciate that. It was the volume that I couldn’t deal with. I love the Facebook and text messages, but there is a pressure to respond, regardless of peoples’ assurances they don’t want a reply that doesn’t exist in the same way as if you receive a card through snail mail; it’s one of those social media things that can become quite a negative if you don’t control it. When you send messages rather than talking in person or on the phone, it’s a two-way communication and you don’t know the state of that person’s head. You know they’ve seen the message, and they know you chose not to answer or to call back later. I’ve come a cropper on Facebook posts several times, where I’ve meant something to be humorous and it’s been taken the wrong way. It happens in real life too of course, can be misconstrued so much more easily in the absence of physical or verbal cues. I still like getting messages, and I have replied to some, but forgive if I ignore or just do an xx.

There’s also a pressure in that I feel bad if I don’t ‘like’ every social media comment on a blog post, and soon with those mawkish Facebook and Twitter like-escalations into ‘loves’ that fire off smaller hearts, nothing less than physically appearing in the poster’s house and snogging them will do. Yet it’s social media that built many of my friendships and connections, often with people I’d never have met otherwise, through two Facebook groups in particular; the Outdoor Swimming Society in the UK and Did You Swim Today from the US. It’s mushroomed into a vast, informal international network of swimmers whom I now ‘know’. Many have appeared in Devon asking to go on swims, and through shared adventures have become true friends of the type who are there for you when you realise you have a brain tumour. We’ve travelled and met with other swimmers who share so much of our own world view that we can’t help but become friends. That shared interest in living life, in exploration and adventure soon branched off into art and writing, and craft projects. How would I know these lovely people without Facebook?

I haven’t seen anyone bar family since the op, with the exception of one of my swimming friends, Fi, who dropped in on Sunday as she lives in London and had made the trip to swim and to see me and I while she had a work gap. She negotiated down to 10 minutes, but of course stayed an hour. It was so lovely to see her, and she brought spring hedgerow flowers that smelled divine and some of her famous kombucha. We talked about lots, and in particular, death, which is something I need to do. I’m tired, sleeping when I can (mostly in the day) but still in need of human contact. So the balance between social media, iPhone, and actual people is quite hard to manage. The less I see people the more I need to check Facebook which quickly becomes a compulsion. Mum finds visitors stressful because she’s of the generation where her house must always look perfect, and I find her hoovering and polishing at all hours (which she does anyway, but she thinks she needs to do more each time someone appearas). I genuinely don’t care if my house is a bit of a mess. All extra things to negotiate.

Today I washed my hair…

Hair and head bogs

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Sometimes, Mum would wrap my freshly-washed hair around bits of toilet paper and tie them up at bedtime. She’d complete the effort with kiss curls; coiled strands just in front of either ear, pinned in place by two crossed Kirby grips. The photo is from my cousin Sarah, on the left here, showing the two of us in 1964 aged three, on the beach at Bude. See my ringlets! Mum used to say: we all must suffer in the cause of beauty. I can remember her in the same era backcombing her hair, layering it in spray, adding hair pieces and grips and big doughnuts like roadkill moles, the constructions needed to achieve the Dusty look. Sometimes I got the Audrey Hepburn topknot (hair covering the mole that was as big as my head, and wrapped beneath, skewered with curved pins into my scalp), or the dreaded ringlets, which meant a night with knots hurting my head, unable to get comfortable, and the tussle between those and the pulling of individual strands of hair was some kind of torture. And tonight, my first night home, l’m back there in that powerless state with my new dressing catching now dry hairs all over and irking the Hunt scar in a way it hasn’t been irked before. So I grab the dressmaking shears and cut through one side of my hair, releasing it as Mum shrieks. Finally, a rebellion. Relief, but the dressing’s fallen off from the top. Mum manages to re stick it using one of the new dressings, but when I press the feeling is horrible, a kind of squidge and bubble. I decide to ignore it, and get the dressing redone properly at the Minor Injuries Unit in the morning.

I sleep till 4.30 which is some kind of miracle, then wake and write. As an active resister of routine, at the moment it’s quite comforting to know that I have one. Meal times aren’t usually a feature of my life – I eat when I feel like it. But here at my parents’ home meals are eaten at the dining room table, and they’re planned. I have extras thanks to the steroids which give me a gut-gnawing hunger, and so I start with my first breakfast of oatcakes and cheese – at the moment I have a passion for cambozola – somewhere between 3 and 4am, with a mug of ginger tea. When Mum gets up to make tea somewhere between 6.30 and 7.30 I have my second breakfast of toast with marmite or peanut butter and a mug of builder’s tea with steroids on the side. Then at 9 ish I eat oats with chopped nuts, dates, live yogurt and banana, with a cafetiere of coffee and a glass of apple juice. A whole day’s food by 10. Then there’s the pre-lunch snack with steroids on the side again, the lunch, the pre-dinner snack, dinner and late night snack, and the other meds I take, two of which are tailing off at different rates. It’s hard to keep track. I’m going to be an elephant, anyway, but one with a routine.

Mum and I are sat in the tiny MIU waiting area in Tavistock. We hear the shuffle, a clop clop clop. He appears in the doorway, sheepskin coat, tween cap, walking stick and pointy-toed gait. We smile and say hello.

They don’t tell you about old age, maids, tis a bugger! I used to be able to leap a five bar gate, now I couldn’t jump a straw! He gesticulates low down. These legs is dreadful…

I reckon he could leap higher than I could today, the life force is strong in him.

What happened to your cap then? There’s a triangular singe mark across the peak.

Got im damp and dried him by the fire, and he caught a bit. People’s always mentioning it, telling me I should get a new cap; well I got two spares but this bugger’s got plenty of wear left in im, he’ll outlive me! 88 I am!

He’s a regular, in need of social contact and dressings.The thing I miss most about my job is the contacts like this one; chatting and laughing with people who’ve lived incredible lives often, lives that have seen so many changes and upheavals. He shuffles off with the nurse to get his legs dressed, waving and smiling, muttering Tis a bugger.

A few minutes later and the MIU HCA is looking at my scar which is excellent, and in a flash she’s replaced the dressing with one that I barely notice. I have been worrying, because of the head bog. I’m not minor injuries trained, although a number of paramedics now are. It’s a specialised area, assessing wounds and how best to treat them. My approach is the classic ambulance one – clean, cover with something sterile and big to prevent infection that ensures nobody thinks you’re a Johnner (St John Ambulance are known for their most beautiful bandaging) and send them off for a professional assessment. When it comes to more significant injuries, and in particular head trauma, there’s one sign that we all look for; bogginess. It took me some time to work out what that meant when I started in the ambulance service, but once you’ve encountered it you know. We all talk about head injuries, but bogginess hints at the real concern which is compromise to the skull and thus an underlying brain injury. A boggy head wound goes to the ED, no questions. Now I’m feeling boggy myself and it’s most strange.

One of our favourite wild swims is down the river Aune or Avon from Aveton Gifford to Bantham. We go on the high spring from towards the top of the tidal reach, and swim down the ria three and a bit miles with the ebb. The top stretch is silted mud, and the water is opaqe, greeny orange and brackish. Here when you swim you feel the silt, press with your hands and mould it, release bubbles from dwellers in river mud. I know there’s a world under that brown gloop, a deeper, chthonian world I’m brushing with my hands as I pass. Lower down as the salt water sinks beneath the less dense and cooler river, there’s an area where methane from rotting vegetation is trapped beneath sand layered lightly by currents. As you tread you feel your feet are on clouds and streams of bubbles rise as you move, tickling your legs as you sink back into the water. My head contains a mix of those sensations, and perhaps some Dartmoor mire; one of the places I used to take my nephews bog-trotting, where you run and the ground wibbles and undulates as you pass.

It started with a need to blow my nose. I did so gently, and was surprised by bubbles blipping up from the left nostril beyond my eye. Air in the sinuses. Then when I touched the top of my dressing, the bog in my head began to bubble and squish. Reading the information on craniotomy, the piece of skull is replaced with srews, but is prone to lifting and moving till the bone heals and I guess that’s what I’m feeling, along with the swelling from the op (although I’m happy there’s not much of that as I have no major symptoms). The brain and spinal cord are encased by meninges or membranes, which have beautiful names: the dura mater is the tough mother, the outer protection; the arachnoid mater (spidered with blood vessels) sits beneath; and then the pia mater is the soft mother, the membrane covering the brain itself. Between the latter two is the subarachnoid space, filled with cerebrospinal fluid (CSF) that acts as a protective buffer. Those membranes have been cut, and I hope restored. Something I’ll ask about later, how do they repair such fine entities? To notice fluid moving from within is most strange. The potential presence of CSF in the form of watery bleeding from the nose or ears particularly is one of the signs we paramedics look for in our trauma survey and I’ve seen it on a number of occasions. So it’s especially odd to be feeling it, although in such a controlled way. Still, as Mr Fewings says, yes it’s brain surgery but if it goes well it’s fine. I think it’s fine. It just feels odd.