Cabbage Patch Kid

I’ve been feeling pretty horrid for a few days, with a constant, generalised headache and a face so swollen the sensation departed. The nearest description I can find for my face is a Cabbage Patch Kid, with sunken features tacked into overstuffed material (though in my case it’s red rather than white). My ankles and feet have also been puffy, so that the ligaments and tendons usually visible have vanished beneath over-proved dough.

I’ve been trying to sleep lying down with two pillows rather than semi-recumbent, and yesterday my left eye was swollen almost shut and I struggled to read through the blur.  Since that’s the side I sleep on mostly, fluid retention seemed the most likely cause and so I banked up the pillows again last night with the result that I came to at 6am feeling three-quarters alive and with no headache. My cheekbones are almost palpable beneath the swelling, which has been hard as bone for weeks, like celebrity implants that jut a good 2cm from the originals. They’ve reduced by half I reckon. I peer at my ankles, half expecting to see footballs where the facial fluid has sloshed downhill, but they’re  not far off the scale. So where’s it gone? I didn’t even wake in the night to pee. Cue Kardashian empowerment selfie of my bum… except in my case I fear the curvaceousness has merely inflated the twin cheeks of my steroid babies; one is perched above my stomach, and the other atop the abdomen.

IMG_3091Yesterday, I was invited by my former colleagues at the Tavistock Times for afternoon tea at the Horn of Plenty. A lovely afternoon chatting over quantities of lovely cakes and sandwiches, whilst admiring the view over the Tamar valley. Even our famous gourmand reporter was unable to polish off the last of the scones, jam and cream, and the steroid hunger failed me too. Thank you all for a lovely afternoon.

I heard yesterday that the treatment starts next week on Wednesday with a start of treatment review, and what’s called an onset verification or dummy run. Then on Thursday I start my six week radiotherapy and chemotherapy; the final appointment will be on the 8th June. It was a relief to know it’s coming, but I’m pretty apprehensive about the whole thing. It’s a bit like taking on an Iron Man but without the enjoyable parts to look forward to, and it’s largely out of my control. So I’m making the most of the remaining days, finishing off admin and planning some mini adventures.

Macmillan

A word about Macmillan, whom I don’t mention often enough. I went into the Mustard Tree Macmillan Cancer Centre at Derriford soon after being diagnosed. Since then I’ve had regular phone calls from the staff in both Plymouth and Tavistock. They’ve called when they know I’m waiting for news, they check up on appointments. I’ve had expert advice on negotiating the emotional and practical, benefits advice, and they completed and sent off my DS1500 form so I needed only to answer a few questions on the phone.

Tomorrow, I have an appointment with a Macmillan specialist who will help me with my radiotherapy worries and we’ll work on how to get through the treatment. Following that, I’ll see E who’s the first nurse I met. My Mum has also seen a counsellor to chat through her worries. There’s so much support there, and it helps that it’s not bound up with the emotional entaglements of family and friends. So if you are affected by cancer, do get in touch with them.

 

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Histology Results

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First, a warning; there’s some unexpurgated information about brain tumours here, including prognosis. It comes further down, under the Result heading.  It’s the kind of information that I didn’t want to know for sure at the start, although I did have some idea. It’s also the kind of information that I can’t resist forever. I’ve always wanted to know things, to find out. I’d balk at the thought of being completely in the dark; my paternal grandfather in the 1960s was never told that the illness that killed him was cancer. So there ensued a game of charades which from what I’ve been told involved various efforts to avoid upsetting my grandmother (a strong and capable woman) and various others, including my grandfather who was clearly dying and who said to my mother at one point of course you and I both know what I’ve got.

My grandfather was a man who’d grown up in extreme poverty and violence; he was one of eight children whose father had lost a leg in World War One; he and his brothers would go to school via the soup kitchen in Plymouth for their only meal of the day. He worked his way to Australia on a ship aged 14, spent a couple of years on a sheep ranch, and returned to Devon to join the police, where he attained the rank of Superintendent. He was 6’5” tall, always smartly-dressed, hard-drinking, charming, tough to the core, and funny. A few years ago I was called to an elderly Plympton man, who I took to hospital in the rapid response car. He’d been an apprentice barber around the time of the war, and it turned out my grandfather Jack Roper used to go to that barber’s for his haircut, where he’d always spoof the barber for the cost; sounds about right said my Dad when I told him. A man who knew life.

That pressure is on everyone. What an odd notion, that you are protecting people from accepting, understanding, planning, tying up loose ends. Isn’t that opportunity a golden one? It’s denied those for whom death comes suddenly, but I’d argue it’s a chance to prioritise, consider what’s important, right a few wrongs. I spoke to a few people I felt I needed to clear misunderstandings and arguments with (one contacted me) after being diagnosed, because each was a little thorn that I held and I couldn’t let them fester. It was a good thing to do and I’m glad I had the chance. Of course I’m an extravert who communicates – I say what I think, I discuss, I’ll talk about more or less anything. Many people are more private. Atul Gawande talks about that, and around the end of life it’s about identifying what is important to you. For that to be easy, those closest to you also need to understand and it’s one of the difficulties with the crisis management of end of life, how others respond and what kind of process is kicked off; Gawande talks of end of life patients being maintained in intensive care right to the end in the US, which is of course utterly futile, and horrible too. Avoiding the acceptance of death (and ageing) is an art form in our culture. Each important person in your life will go through the process of accepting your death in her or his own way, and at their own speed. But the conversation has to be had in some form, and your wishes have to be made clear.

I’ve had a few message conversations about death with kindred spirits from Facebook whom I don’t know personally. Isn’t that odd? Or is it? As one says, maybe it’s harder to talk about your feelings with people you feel responsible for – certainly that was how I felt today, leaving my parents in the café while I got the news, then relaying it over tea and lemonade afterwards. But they knew the score, and I felt I had to process the information myself without worrying about how they were taking the news. So the protection instinct is there, modified.

I’ve slightly diverged from talking about prognosis; I imagine some would rather not know in anything other than vague terms, and since there are no definites in game of percentages, median survivals and averages, that would appear to be a reasonable strategy to take. I already know the prognosis for metastatic breast cancer, and of course there are many variables there according to where the mets (what Mr F calls seedlings) lodge in your body and so on. I looked up the GBM4 a couple of weeks ago, peering at the information rather as the babysitter in a 1970s slasher film peers around the basement door to investigate a noise. It was the point where I felt I needed to know.

Result

I’m sitting in Fal in the bay again, waiting for Mr Fewings, and Louise Davies the neuro oncology nurse. I chat to a woman awaiting breast cancer surgery; she’s having the same kind of op that I had first time around, in January 2011. Full circle. I don’t mention that this might be related. We talk about the surgery, and about the woman’s grandchildren. Finally, Louise appears and calls me in.

It’s a small room, white cement, metal windows. I sit in a black chair by the desk.

We begin with how I feel, the weakness and the strange numb/burning patch on my leg. The weakness is steroid related, classic. It’s no longer predominantly left sided, and the upper arms and thighs are most affected. Mr F also notes I’ve put on a noticeable amount of weight since he last saw me, in the classic steroid pattern, and related also to the effects of a significant dose of dexamethasone over six weeks or so. My cheeks are so swollen they’ve gone numb. The leg is a nerve problem, which he demonstrates. It’s a nerve that crosses the bulge in one’s gut over the pelvis, and it can become stretched. It enervates precisely that area. It’s the side I’ve been lying on, and makes total sense. So I’m glad to know that’s not Hunt-related. I’m to reduce the dexamethasone as of tomorrow, 4mg in the morning and 2mg at lunchtime over a week, then 2mg and 2mg. That should improve how I feel in myself, reduce the effects and improve the weakness.

The nausea I had intermittently shortly after reducing the dose last time can be treated with Ondansetron if I need it, thus avoiding upping the dexamethasone again.

Now we move to the results.

I asked to record the meeting on my iPhone, so what follows is the transcript with some extraneous phrases removed. I didn’t listen to it again till this morning, and what’s really interesting is that, despite being focussed and concentrating, I actually got a couple of key points wrong on asking Plum to spread the news. Then from Plum’s post there were a range of interpretations, some of which I think missed the negatives altogether. The lesson is clear; no matter what your interest, you hear some things that haven’t been said, you miss some things that have been said, and you read the message in your own way. (Of course there are implications there for informing those close to you about your wishes as I’ve been discussing)

So my cancer discussions are going to be recorded from now. Back to Mr Fewings.

He’s matter of fact, and talks clearly; we had already discussed the two options after the surgery so I am prepared.

I’m expecting this to be metastasised breast cancer.

It’s not.

It’s a Glioblastoma (WHO Grade 4), abbreviated to GBM4, an aggressive, primary brain tumour. This is the one that most people thought Hunt was not.

It’s 45mm x 30mm x 23mm.

Mr F:

Usually with a glioblastoma there’s an area which is obviously the tumour… and then around that is a patch and a rim of obvious tumour, intertwined with areas of brain, and then as you get away from the tumour there’s still patches of tumour, and then microscopic rootlets through a widespread area.

[He’s drawing a diagram as he speaks; there is a lot of scribbling].

Yours however looking on the scan and from the operation, was very well demarcated with a clear plane and so the main bulk of it, phhhhp! has plopped out.

So because it is a glioblastoma, you will still have to be managed as per the glioblastoma, which is chemotherapy and radiotherapy.

But with respect to your prognosis I would expect and hope that it would be better than the average, because it’s all been removed, with the caveat that it won’t have all been removed there will still be some microscopic rootlets.

Better than average means half the people do worse than average and half the people will do better than average. But I expect you to be in the good half rather than the bad half.

Unfortunately this problem, despite this being removed, is incurable.

The treatments are aimed at keeping you as well as you are now for as long as possible.

Without treatments, it’s likely that this disease process would take your life within a number of months, maybe six months plus or minus a wee bit, but with treatment your life should be considerably longer than that, say add on about another year…and as I’ve said hopefully in your case maybe even longer than that.

I ask Mr F about the oedema and the blood brain barrier, as I’d read that oedema constitutes a failure in the blood brain barrier. So is there cancer all around my brain?

No, just the tumour site, that’s all.

I ask about the tumour; the fact that it’s grade 4 is the most important information, because that describes its high level of aggressiveness.

I ask for and am given a copy of the histology report.

We briefly discuss radiotherapy which should be over 6 weeks with a tablet chemotherapy drug called temozolomide alongside. On Thursday morning I have an outpatient’s appointment with my oncologist who is, Dr Sarah Pascoe. She will go over the plan, discuss the options, and then most likely the planning will start so I’m to look forward to spending a few hours at the hospital. Louise my nurse tells me that fatigue is the main side effect of brain radiotherapy. Mr F says there may be an indicator for stereotactic boost as it’s well-defined, so more focused radiotherapy is a possibility.

I feel I have enough to think about at this stage, ready for my appointment with Dr Pascoe who is the expert.

I then ask Mr F about the lung nodules, which showed on the CT scan and which was a part of the reason I was drawn to the idea that Hunt was a met from my breast cancer. That and the bad luck of having two unrelated types of cancer within 5 years. Is there a god?

Whilst they noted them, a 3mm nodule and a 5mm ground glass nodule, it was noteworthy but of no major concern. However if this had turned out to be a seedling tumour, they would be other seedlings, but because this has turned out to be what it is I’m happy to ignore that. Also you have the abdominal lymph nodes related to your microscopic disease, the gut stuff.

At your operation when it was removed I said, ‘ah it’s going to be a met’ and the others though the same. About 1 in 20 are like this, and as I say they do tend to do better than average because the main bulk has been removed. If one can remove about 90% of the main mass of it that does confer some benefit, and with respect to the actual area of abnormality, 99.9% of yours has been removed.

Me: So that’s as good as it can be really.

Mr F: Absolutely yeah. So it’s not great news, of course it’s not, I’m not going to pretend it is…

Me: Yes I was ready for that, I knew it wasn’t. It’s nice to know it’s got a positive to it than just being shit and more shit.

Mr F: Indeed! You are well, no cognitive problems or neurologic problems, you’re a bit crap at the moment if you excuse the expression – courtesy of steroids which we’re happy to reduce down – and you’re seeing Dr Pascoe on Thursday for a plan of action for your other treatments.

I thank Mr Fewings and the other staff who have been excellent.

So in summary:

Only around 1:20 GBM4s is demarcated from normal brain tissue in the way that Hunt was. 99.9% of the tumour was therefore removed. A very good result for the more usual GBM4 would be to remove 90% of it.

Hunt is surrounded by an area of microscopic tumour rootlets, which can be treated by radiotherapy and chemotherapy in tablet form; potentially some more focused radiotherapy can be used in this case.

With no treatment, I would expect to live only 6 months, give or take.

The median survival for a GBM4 is one year. 50% of patients will live for less, 50% for longer.

I am expected to be on the longer side, which could mean 18 months, or even more. There are no guarantees.

So my news wasn’t as I’d expected at all. As Mr Fewings said: you never know.

I feel slightly shell shocked, suddenly tired, and half relieved by the thought that what remains of Hunt can be irradiated and chemically shrivelled, with of course my shrivelling prayer joining the fray. I feel some visualisation coming on particularly after a funny message last night in which kneecapping featured for the real Hunt. Now I see Hunt the tumour as the Cheshire Cat’s ghostly smirk. You haven’t got rid of me yet, he leers. I see the smirk exploding in stars with stereotactic rads and some blue stuff that burns, forms an acrid, fizzing smog and makes him cry. Sometimes only vicarious violence makes me feel better.

For now, Louise and I head to another office, and she runs through my folder of information. I can plan and monitor everything using the folder, including my food intake, signs and symptoms and pretty much anything else I can think of, but I suspect I won’t if past form is any indicator. Louise ensures I’m ok, explains the steroid reduction for about the fourth time, and points out that she’s written it in my folder. The page is cleverly marked. Now it’s a case of allowing everything to sink in, and preparing for the oncology appointment.

I am glad to know what’s what, even relieved. Of course few of us knows when or how we’ll die though I can probably predict with more accuracy than most that I’ll be dying of smirking Hunt as he re-materialises, sooner rather than later.

I think of some of those sudden deaths I’ve been to as a paramedic; the young lad driving home from work on a Friday, losing concentration momentarily, thinking about his night out perhaps, and clipping the verge. Hanging from the car, still alive but I can’t reach him and I doubt he’ll survive. I talk to him, touch his shoulder, chat about all sorts and tell him he’ll be okay while the fire fighters get him out. I hope he doesn’t know what’s happening but if he does he’s not alone.

The elderly man, a non-injury fall, sat on the floor next to his bed at 3am, unable to get up. I’m not a happy bear, I’ve not been a happy bear all day… as we lift him he goes into cardiac arrest. His wife knew he was going she says.

My grandmother, ooh, I’m going, I’m going…we hold her, tell her she won’t fall, misunderstanding.

And the baby, handed to me by a woman whose eyes beg me to help, while they know it’s too late. I see the tiny mouth, blanched almond white from attempts to breathe life back; the little nub at the centre of the lower gums where the ghosts of tiny teeth will never appear, the minute finger nails, dark blue.

The unhappy bear knew he was about to die. The baby just stopped breathing in its sleep, warm, fed, loved. The young man? Maybe an oh shit and disbelief, the terror. And the loved ones…

I’m still not dreaming. I don’t have nightmares, or terrors. I wake each morning in the early hours thinking about my illness. But I don’t dream. Why aren’t I dreaming? Or why aren’t I registering the dreams I have?

My fear, the slasher in the basement, is that I am going to lose my mind after all.

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…