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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Monkey brain

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Sitting in a kind of seminar room with S in the Mustard Tree, tears materialise from outer space. I say that because I didn’t somehow have access to them from within myself, they kind of landed on me. Fear? Grief? I talk to S who is a counsellor about how I am, and about the looming treatment. I tell her about my needle fear; isn’t it odd that in descriptions, fear so often pricks, as do tears? One of those tiny things that is imprinted in my mind from the initial ambulance training course is that we never say the word prick when using a needle in case it’s taken the wrong way, whether for a blood glucose measurement or cannulation. We say sharp scratch. But sharp scratch doesn’t quite express what’s going on. I think of Sleeping Beauty pricking her finger, of the thorns that grew around her. A scratch is on the surface, it doesn’t pierce, break the boundary.

We talk generally about the treatment, and I explain how I deal with claustrophobia in my previously normal life, the life where I choose to swim into the cave and when the swell picks me up and pushes me to the roof I bob beneath the surface and swim through aquamarine, above constellations of starfish. I’m not pinioned by a mask staring at the geometry of the ceiling; that bright white chequerboard of tiles and lights boring down before being pushed into the machine that will irradiate a part of my brain, and I hope, tumourous Hunt’s Cheshire Cat smirk. A slight digression here; it was properly amusing to hear Dennis Skinner MP savaging Jeremy Hunt over his smirk when giving a statement over the Junior Doctors’ strike.

I’ve lost my focus in the past couple of weeks, scattered the rays across the political spectrum and spent too much time on social media. There’s that air of time disappearing, of desperation as more and more political nightmares vanish beneath the carpet and are replaced by others. The fear as the NHS crumbles and it’s blamed on the doctors. The thought that I’ll die and I won’t ever know what happens to it, that it’s lost forever. I can’t bear it. S talks about mindfulness, about moving back into the moment, not dwelling in the past, or in the future. The thing is, I don’t actually want to be here in this moment.

I’ve been trying also to tie up the mounting heap of admin I have, and the displacement of scattering political bullets over Twitter and Facebook has pretty much ensured I’ve not completed anything I meant to, including my tax return. Back to the days when Hunt grew in my brain, before I knew he was there, those days where I judged myself for that inability to complete tasks, or even get to grips with them at all. There’s also the advice given by a friend years ago when I found myself crying on the phone to her having chosen my then dog Bubble from the local dog pound and had to leave so many others behind; focus on your sphere of influence, she said. You can help one dog, do it well. And I did look after Bubble, give her a lovely life, train her, love her, feed her, walk for miles over the hills of Scotland and Dartmoor.

So I sit in a chair, close my eyes and relax as S talks me into my left foot. There I focus on each part as she mentions it, breathe into it, note sensations and move on. The focus comes over a few minutes, and I manage, as she reminds me, to notice when my mind wanders, to acknowledge it has, to bring it back to my left foot. It’s good that we started there, because My Left Foot is one of my favourite films. I have monkey mind, and the types of yoga I’ve done in the past tend to be active ones. When sitting and breathing, meditating, I can’t overcome the cramp from having tight hip joints nor the boredom of staying still and focussing on breathing. I start to fidget, daydream. Here, I’m managing remarkably well. I breathe into my foot, then out, and we move to another body part. S has previously wondered whether my medical knowledge will prevent me from breathing in and out of random body parts that aren’t lungs; but having a writer’s imagination I assure her it’s no problem, as long as I’m in the mood.

When we reach my chest a few minutes’ later I’m stuck. That shortness of breath blocks me as I move around it, sticks whatever it is that does the moving around. I’d tried to explain to S that my breathing is short, and that really is the best way I can describe it. A deep breath, a diaphragm-flattening breath, isn’t possible. I feel my steroid babies, the waistband of whatever too-tight clothes I’m wearing, and the abrasive quality of the air reaching my lungs, like tiny particles of sharp sand, or some chemical vapour scouring. The dull ache between my shoulder blades.

We move to my head. It’s uncomfortable. I’ve developed a headache over the past week, a fairly generalised headache still, but it’s moving, focusing more on the left than the right, and while it’s not a Hunt headache, it’s moving that way. Or is it? Is it in my abstract mind or my physiological mind? I’m imagining the Hunt-shaped hole in my brain. It’s closed, for sure. It was described as a space occupying lesion (SOL) initially, and the slight bulge I can feel over the craniotomy site, over which the palm of my hand fits nicely, makes me wonder. I’ve lost the carapace altogether now. But still I worry about Hunt’s return. The GBM is fast-growing, that’s why it’s so dangerous. And the fear of the GBM, the wondering. I can’t quite form the imagery beyond the Cheshire Cat smirk, an image of a vanishing as much as a materialising. So I get rather stuck in my head too. But I feel enough, enough to think I can manage. I’m to call and book another appointment when I know the timings for the treatment. It’s helped, not least to identify some ways in which I can regain some focus and get through the next six weeks.

After that I saw E in the Mustard Tree, and she pointed out that I’m looking ahead always to the radiotherapy effects on me, and seeing the worst case. It might not be that, so once again I have to move to the present, take a day at a time. I’m upset again, definitely out of control. She wonders if I hold grief in my chest. I hadn’t thought of that.  I tell her about the needles. We talk about space; I don’t feel I can let go in my parents’ home, because I worry about them and it’s too complicated. I’m certainly not easy to live with in any case, and less so when grumpy on steroids and scared, and feeling pressured since I’m used to doing my own thing mostly without reference to anyone. Now I’m expected to organise, I am organised by others, constrained. Not in a mean way, but in a way that I feel deeply. Conflicts where you least expect them.

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.

 

Maps and blankets

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Our wild swimming group made its first patchwork blankets for Jackie when she got married, and then for Linda when she became seriously ill. We decide on a broad colour scheme and square size, and individuals either crochet, knit, felt or applique squares and add ons which they post or bring to a bee for stitching together. Yesterday, a few of us met at Castle Drogo to see the Grayson Perry and Louis XIV tapestries currently on display there and I was given the fabulous blankets made for me by my fish friends afterwards.

IMG_3055I once saw a fairly prosiac mainstream film called How To Make An American Quilt that resonated despite its shortcomings. I hadn’t previously considered heirloom quilts or the stories they carried. In this film, the quilt is stitched as a wedding gift for the heroine by her grandmother, aunt and their friends, to a theme. So our patchwork blankets continue that collaborative, individual and social tradition of such crafts.

Sun King
Sun King

Receiving such a gift after spending time examining, discussing and enjoying the tapestries Drogo added some extra context. The Char de Triomphe was created for Louis XIV, the Sun King, and took six people three years to weave by hand. It’s been renovated by a small group of experts over a five year period. The faded sun, with the ghostly face of Louis barely visible, is particularly poignant; the colours originally would have been vivid.

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detail from Map of Truths and Beliefs

Grayson’s tapestry Map of Truths and Beliefs is machine-woven via a photoshopped computer map from his drawings, and represents the clash of the everyday and pilgrimages in a kind of modern altarpiece. Also on display is a lithograph of Grayson’s entitled Map of Nowhere, and based on the Mappa Mundi. I’m fascinated by Grayson, and adore his documentaries in which he manages to be erudite, eclectic, approachable and brilliant in drawing truths and insights from his subjects which he translates brilliantly into art with reference to artifacts from the past.

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My beautiful blankets, and the muffler and bag, represent a map of friendships forged through a common love of water and nature. It’s about shared adventures, shared confidences, shared scares, shared perspectives. Some of those who made and sent squares are wild swimmers I’d only ‘met’ online.

There are all kinds of styles, interpretations, and approaches to both crafts and the world stitched in, with flashes of inspiration and unique embellishments abounding. I love them. It’s overwhelming to receive such a gift. My Mum was completely overcome when I showed her and spent ages looking at each element.

Kari’s square came attached to a piece of ribbon; she made it from sterling silver and copper. It features the MRI scan of my brain tumour, Hunt, replete with cerebral oedema. How Grayson is that?

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Thank you from the bottom of my heart to all who crafted my blankets. Cuddly maps of minds, friendships and aquatic adventures.

 

Radio Gaga

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Today is oncology again, for radiotherapy planning. Derriford Hospital is built into a hill so that level 6 is ground level at the front, while oncology is tucked at the rear into a cul de sac on level 2, with the weight of the full 12 stories pressing down; a 1970s brutalist hobbit hole.

Inside it’s pinched in the middle, so the café, manned by a friendly young man, bulges to the left as you enter then narrows before opening out at the far end. There is a semi-circular reception area with an office behind, from which fan sets of doors through to other areas, offices, CT, bloods, and treatment rooms, stairs to the Mustard Tree. Gaggles of people sit either in the café around low tables, or along the walls on metal and leatherette chairs. Some are talking, some just sit; the old hands look at home, others look as Alice in Wonderland as I feel. Some are trying to be cheerful; there are out bald heads, and jaunty turban scarves covering baldness.  Staff nip up and down, calling people through, sometimes catching sight of someone they know and having a cheery chat. Every so often a tannoy echoes; Julie Brown for treatment please!

Today I get tea and a rock bun – the size of my stomach and clearly home-made. This is the trick; to buy your buns before the nice stuff has been eaten. A Bakewell tart stares at me from its wrapper, jaunty cherry and white icing hiding the truth, and I laugh in its face.

I’m called through to a small room by two people who are going to make my mask. Now this sounds pretty simple, and I wonder whether this is all they do. I discover that they are dosimetrists. Their role is to plan radiotherapy for all areas of the body, and the making of the mask for me is but one tiny fragment of their work. I had no idea such people existed. The man tells me that patients sometimes get cross with them because there’s a two or three week wait between the initial meeting and the first radiotherapy session; they recently held an open day and a couple of their patients commented that they’d had no idea how much critical detail and planning was involved. The complexity and accuracy of course is key. It pays to ask questions, always. I’m very happy to know these professionals are going to be planning the anti-Hunt missiles with such care and precision.

They show me a mask, and the thermoplastic mesh form that will become mine while explaining the process from the heating of the form in hot water to the fifteen minutes’ wait for it to harden. Then I’m cannulated ready for the CT scan that will follow the mask fitting; the radiographer will inject a dye in order to identify where the blood vessels are in the area of Hunt’s Cheshire Cat smirk. This is what the dosimetrists will use to focus the radiation.

I’ve never had a problem with needles before, though I’ve met many people who do. The surprise is that scores of them are bullet-holed by body and facial piercings, which goes some way to noting that the psychology of needles is far from obvious. I used to be pretty good at talking phobics through cannulation. Now, since the arterial line problem prior to my op, I’m in a similar place. My muscles tense, shoulders jerk up as I inhale. I try to let it go, partially relax, then jolt again as the needle begins to pierce the skin. The tensing makes the cannulation more difficult. Is it loss of control? I’m going to have to have weekly bloods taken, but hopefully no more than that.

Then there’s the claustrophobia. I’ve always had it, and I’ve never liked heights, although I’ve always climbed trees and enjoyed the thrill. When I had to teach on the climbing wall as an outdoor activities instructor I got over the problem pretty fast; on the crag it was different and I would freeze, not far up, and be unable to move. Then I worked out the reason was not the height; it was claustrophobia from the rock against my face so if I turned my head to one side I was magically freed. There’s a similar trick for caves, to which I’m fatally attracted, yet I could never leopard crawl through a tight one. I can, however, swim through as long as I go under the water when the space at the top gets too narrow for comfort. So how will I feel, held by my head to a board, the mask pressing against my face?

IMG_2882I’m laid flat on a shiny black glass table, with a neck rest behind my head, a gel pad under my bum and a knee rest. The giant polo of the CT scanner is haloed above my head. The staff fiddle with different neck rests, move me up and down, tweak, change the knee rest, and finally decide I’m in the right place.

The mask touches my face, soothing like a hot flannel, and Radio Gaga begins to play on the radio. Flash Gordon approaching! The mask, soft and warm, drapes over my nose, cheeks and chin, while the dosimetrist pats it into the contours. I hear a click, smell something sterile, like surgical spirit, with a fruity whiff – some kind of long forgotten sweets perhaps. The frame has been attached now, and the sides begin to cool. A cold dampness across my cheeks and jaw spreads forwards. I open my eyes, cream stripes and blurs, eyelashes touching, no real definition. A gradual awareness of something in the way of my breathing, and the pressure builds on my lips and nose. I shut my eyes, fast, try to breathe calmly. My face begins to pulse against the increasing resistance, leaving the ghost of the whooshing sound to escape my ears. It’s going some, maybe 100 beats per minute. I try to slow it. Radio Gaga clap clap. Flash Gordon I love you, but we only have 18 hours to save the earth!

The dosimetrists are still talking to me, and I think I’m answering. They begin to apply pieces of tape and to mark points on the mask with a pen. Spider scrabbling. Always spiders. There’s about seven minutes to go Lynne, do you want to wait and have a break before the scan? Or we can do the scan while the mask finishes cooling if you would like?

A snap decision – do the scan now. They prepare, set me up, and the radiographer injects the dye into my cannula. I don’t get the metallic taste she’s warned me about, but my mouth goes dry. Then the urge to urinate, which passes pretty quickly. She checks I’m okay, flushes the cannula, then tells me that they’re leaving the room, but if I need her she can hear me. Queen has been replaced by an insipid boy band who thinks you’re amazing…just the way you are.

A faint whirring, washing machine, jerking back and forth as the table slides…or is it the polo? The washing machine reaches full amplitude and swirls around the pulsing in my face which has now reached the top of my head. The grey dots behind my eyes turn to a royal blue splodge, that fades and bulges purple then grey as the polo blocks the light. I could move my body, but not my head. The man at the side of my bed is ready, I can sense him, the return of the night terrors of the past eight months which were my mind’s attempts to alert me to Hunt before I knew he was there. I banish him. He’s just a Cheshire Cat smirk and this mask will give me more time.

It’s over, I’m through it. Clicks, some more fiddling, then the mask is lifted and I open my eyes to the bright squares of light in the ceiling. The dosimetrists are back, and make some more marks on the neck rests before I’m helped to sit. I feel woozy and distant, but able to stand and walk to the chair. I take some photos of the mask which has hamster cheeks and the air of an alien egg.

The radiographer removes my cannula, and tells me to drink lots of water over the next 24 hours. I’m to stay in the area for a while till I’m sure I feel well enough to leave. It’s becoming normal for me to feel wonky and to not know how much is real and how much is in my head.

Later I talk to Kari who says I need to find a place to go in my head, somewhere to get through it.

It takes 36 hours for the effects to pass, the worst of which is a constant headache. Not a Hunt headache, just a nagging, generalised ugh and a shakiness. I should hear within 2 weeks when my treatment is to start.

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Cheshire Cat Hunt: it’s a no brainer

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

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

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

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

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

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

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

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

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

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

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

Are you swimming in swamp water? Asks Dr Sarah.

No, moorland rivers or the sea… 

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

I sign the consents.

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

DWP

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

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

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

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

 

Histology Results

IMG_1432

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.