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.

 

 

 

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Dredging

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Finally I felt ready yesterday to talk with a friend who’s been living with metastatic breast cancer for some time. I was putting it off because I couldn’t quite get to grips with the idea that my apparently non-invasive breast cancer (I had Ductal Carcinoma In Situ, or DCIS, diagnosed in Dec 2010) is the most likely  reason I’m in this situation now.

I researched DCIS in depth at the time, obtained copies of my histology reports and made some key discoveries, which I discussed with my surgeon. I was treated conservatively in the first instance, which is wholly justified in the majority of cases of DCIS; indeed there’s a strong argument that surgery is unnecessary for a significant number of lower grade DCIS (low grade means not very active so you can leave it and wait and see; high grade is aggressive and needs to be treated). Mine was found to be high grade and larger than the expected 10mm, at between 50 and 60mm. For that reason, I was recommended to have a mastectomy by the multi disciplinary team (MDT) while my surgeon was away; he disagreed with their recommendation because there were clear margins around the lesion.

For various reasons involving the type and grade of DCIS, I went with the MDT and also persuaded my surgeon to perform bilateral mastectomies. It was complicated, and involved an open discussion. I had felt always that I’d been lucky because my cancer had been caught by accident (I’d had a benign cyst which sent me to the clinic where the DCIS was picked up on mammogram) and the mastectomies meant no further treatment. In particular, I avoided radiotherapy which would have been necessary had I stuck with the original wide local excision surgery (known colloquially as a lumpectomy). Radiotherapy isn’t pleasant and has significant side effects.

I was signed off from the breast cancer clinic after a year, having had a brief check-up and review, thinking phew, that’s that over with. And over all that time my mother was going through treatment for a new aggressive breast cancer in her left breast, having been treated successfully 18 years earlier for three different types of tumour in her right.

So the talk with my friend involved some acknowledgements of the thought that I haven’t been so lucky after all, along with the missing primary tumour option; of course my primary tumour has long gone with the original lumpectomy and then mastectomies. So the thought of what Mr Fewings called a seedling landing in my brain via the bloodstream, and perhaps some in my lung via blood or lymph, is quite surreal. The MDT meeting for my case was yesterday, so they know the answers, it’s just that I don’t yet. And of course it’s Easter.

Living with cancer is something my friend understands. Waiting for scan results is her worst time, and of course that’s a regular occurrence. But mostly she lives her life, tries to stay healthy and fit, plans a little ahead but not more than a year. We discuss the positivity thing, it’s uses and the downside. Be kind to yourself is her thought. Don’t blame and pressure yourself for not being well. Penny Brohn is one of her recommendations, and my friend found it incredibly useful for her state of mind, for coping with the fear and anxiety. So I will be looking at that once I know what’s happening next (always once I know what’s next). There’s also a minefield of treatments, all tied up with Big Pharma and its massive power to charge for expensive drugs for which the evidence is not always clear. I can highly recommend reading Dr Ben Goldacre on that topic. My friend has done her own research, and in some cases has asked a doctor friend to do it for her where she knew she’d find information she didn’t wish to know. She’s asked for one treatment in particular that wasn’t recommended in the mainstream, but which has been excellent for her. So taking charge is key.

It was a kind of dredging to let the flood waters speed through discussion for me. Half formed and suppressed thoughts soaking the ground and forming a quagmire. Such a wise woman, my friend. So good at articulating and thinking beyond the obvious. It’s not been an easy journey for her, and to gain the benefits of her experiences is beyond price for me. We are part of a small group of women who met through having breast cancer on the Breast Cancer Care forums. We all had mastectomies in March 2011, and supported each other virtually via a secret Facebook group. We’ve been through a series of cancer and non-cancer related life events since, and have met in person in London, and for a spa weekend in Wiltshire. More genuine friendships and support via social media. It can be such a marvel.

I suppose in summary, I’m in an odd place this week. But I feel a breakthrough.

Head and Boggy

My boggy head bubbles pop and blip and bloop less often, then disappear rather suddenly. Removing the clips had released some scalp pressure, and washing my hair 24 hours later was bliss; the touch of water easing it all, the cleanness of it, is a catharsis. All those icky sticky bits, blood, bugs, staleness, washed away. It’s sore rather than painful, certainly the least painful surgery I’ve had.

Then the head feel changes again. The vestiges of the Hunt headache have dissolved to a wisp of ectoplasm, and now there’s the tightness over the site of the craniotomy. When I pressed the dressing accidentally on day 3, I felt a definite squidge and it was hard to resist squidging it some more to see what happened. I felt it when travelling by car, centrifugal force pushing fluids outwards. Now the squidge has gone and in in its place is a firm, circular pressure. I guess this is the bone, screwed back into place, starting to re-grow to fill in the gap. I’m still sleeping propped up, because the sensation of pressure increases as I lean towards the horizontal.

I’ve finished the Kepra now, and am on day 3 of the low dose of dexamethasone; just 2mg twice a day. This morning I’ve felt able to resist my first breakfast (the 3am one) which is a breakthrough; while hungry, I’ve lost that horrible gut gnawing. The steroids have all but wiped out the osteoarthritis in my hands and knees, although I can feel the lack of muscle around the knees. My back, trashed by a decade on ambulances and the site of recurrent injuries – most recently a bulging disc – is an absolute dream. I was also due to have shoulder decompression surgery and the pain from certain movements and from lying on my left side (the side I have to lie on at the moment) was a constant; no longer. If it weren’t for the cancer I could probably do cartwheels. If I lost weight, that is…

 

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.

 

 

 

 

 

 

And we have a plan

Today I’ve seen Mr Paul Fewings, my consultant neurosurgeon. The surgery is next week, and should be confirmed tomorrow.
He’s an approachable, friendly man, straightforward and confidence-inducing. He interjects with a gag from time to time while writing up his notes as Tony the neurology oncologist nurse, Mum and I talk. I don’t think I need worry about the cape.
He thinks mets are unlikely, tells me I have gut inflammation (which I have had before) and which is the reason for the notable lymph nodes on my CT scan – the ones I was thinking reinforced the concerns about metastasised cancer. There is no sign of primary tumours elsewhere. I feel huge relief about that, because the thought of coming straight in with stage 4 cancer was pretty scary. Mr Fewings says the CT is “very reassuring”.
He’s categorical that we don’t know what the tumour is till we get it out: “Could be anything” and explains the craniotomy, the bit where he takes out a chunk of my skull “like an upside down horseshoe”.

I won’t be able to see the actual tumour (I was hoping to trap Hunt in a little pot where I can give him the evil eye), but will be able to get pics of the slides which will be nice. Nice? Seeing Hunt magnified?
So it’s wait and see, with a more positive second option. I know I’ve done too much research and thinking, and I did drag too much information from Titus the first surgeon. Not making that mistake again. I was up blogging from 3 am last night, no chance of sleep at all. Hopefully I will sleep later – and from tomorrow my dose of dexamethasone is halved which will most certainly help. The blog feels cathartic, get it all out now. And my mental state is okay, but so random.
Mr Fewings hasn’t emphasised the likely malignancy of the tumour either, although I have been clearly warned. But then, likely isn’t definitely. I see no value in being wholly unprepared for the possibilities, and most especially in blanking the likelihoods of what’s to come, but equally I seem to have wound myself to a tangle of accepting that one of the two worst options is going to be the outcome. Of course those extreme potentials also contain hosts of other variable factors, as do the lesser ones.
People assume that if you have any kind of medical background you know everything about your illnesses (and often theirs). As a paramedic I know lots about different conditions because I encountered most of them, some only tangentially, many repeatedly. Trauma, MIs, strokes, diabetic crises, mental health crises, people at end of life from diseases or age, social problems, disability. I know what to do in the crisis, I know how to assess, manage and treat the immediate, life-threatening concerns, manage the situation and the incident, access the right care pathway (if it still exists in the face of austerity). I’m fascinated by it all, and I research anything I meet, chat to doctors about how I might have managed a condition better, or whether a certain intervention might have been better avoided, or talk generally about a condition. But medicine is a vast area of highly specialised and rapidly-advancing knowledge. I know nothing. Yet I know too much.
I hadn’t realised till today how caught I was between the polarised negatives. I know it’s still potentially nasty, but there is some hope.
I’ve signed my consent form which says there’s a 1 percent chance of death or serious disability, post operative bleeding and infection.
A 3 percent chance that the deficits I have will be permanent in some form, or become worse, but a good chance I will recover once the tumour and associated swelling are gone (it’s the swelling that is causing my symptoms).

Once Hunt is out and identified, the treatment plan proceeds, and I should get the results hopefully on day 3 after surgery and be able to go home on the same day if all is well.
I feel my head is lighter somehow.
I have prepared myself for the worst, but I can also hold on to some hope that there’s a future. Whether that’s a long future or a curtailed one, it’s still a future. And one other paramedic insight – you have no idea how many random, flukey things can happen to you out of the ether, nor when you’re going to die, nor what from. The C word is one to muse on later, but there are some equally bad, and many worse illnesses that don’t carry the same Jihadi snuff video potency. In the meantime, if you are interested in such debates about how we frame our experiences and are in turn framed by them , the late Susan Sontag, when she had cancer, wrote a book called Illness as Metaphor about this very topic. I’m intending to re-read it in the future.