One down five to go

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Yesterday marked a whole week of radiotherapy/chemotherapy. With the build-up, the dread and the various tales of what might or might not happen, I’d expected something worse. I have a long way to go, yes, but while it’s not pleasant, overall I feel – here it comes – positive about it. Dad and I have got into a kind of routine where he drops Bun and I off on the moors, goes to do the shopping, gets his papers and returns to collect us. We then do our Derriford stint.

The timing of everything seems inordinately complicated, to the point where I’m considering volunteering the problem as a SATs question for 6 year olds. But how much is due to my still slightly less than agile brain? I have to take my usual meds, which include the steroid, early. For these I need some food so I have toast and tea. I have to take the Temozolomide one hour before the radiotherapy starts because its role is to render the cancer cells more vulnerable to the radiation. The radiotherapy time varies between late morning and mid afternoon, and is planned to the minute. So I take the T on the five minutes before the hour, because by the time I’ve opened the four little sachets a couple of minutes have passed.

Now, I must also take the T on an empty stomach, which means at least two hours before the last food (which includes drinks with milk and so on, though water is fine I think). So when Dad offers me shortbread, I’m not supposed to eat it… ooops. I must also not eat or drink tea for one hour after I’ve taken the T. Oh, and then there’s the ondansetron. The T makes me feel quite nauseous in a stomach-churning way. So I take ondansetron thirty minutes before the T.

Yesterday, Dad and I had a plan involving going into oncology early so I could have my weekly bloods taken (reading up on this, there’s a point called the nadir when blood counts, and thus resistance to infection are lowest, and this is from 7 – 10 days). So I’ll take the T en route, grab my ticket, get the bloods done, and we’ll dash off to B&Q to pick up a few bits including the paint for my front door which my brother Dave is going to paint for me. Then we’ll return for rads at 1.38.

I open my sachets as we pass Runway Road, and promptly drop a capsule which slips between the sachet and my mouth as I hold my water bottle up to wash it down.

Stop! I’ve dropped one! Dad obeys, and the water slaps from the water bottle over my face and down my front. We stop in the bus stop but I can’t find the capsule. It’s not on the floor, it’s not in my scarf, or hiding in the folds of my coat, or by the side of the seat, or under the mat.

In your bag? Says Dad? I must admit that very many lost items show up in my bag, including swimsuits and elderly bananas. So I empty it – and yes, there it is, a glimpse of lemon yellow, nestling right at the bottom in the seam. I yam it fast with the remaining dribble of water.

We arrive at 12.25. I grab my ticket, number 22 for bloods, and 21 is on the display so things are looking up. Fifteen minutes passes. No change. Do I ask? I know they have other things to do, and maybe there’s a problem. So I wait. It’s now 1250, and they close for an hour from 1-2. The phlebotomist appears and places the bag over the ticket machine – so I tell her I’ve been waiting – oh I didn’t know you were here I was looking for 21 and they’d gone! I’ve been restocking, you could have come in straight away! Drat. My veins are still missing on the right.

So, bloods done, Dad and I race to B&Q at 1. I choose the paint colour (I was torn between a lovely bright turquoise, a burnt orange and pink, but plumped for the pink – I have standards to maintain). I leave my request at the paint mixing counter and we dash off for the rads…except there’s a complete jam outside and we can’t get out of the car-park.

Finally we creep onto the road with minutes to spare, and I make it through the doors at 1.36. The minute I check in with my barcode I get called and wander down to the waiting area, stopping for a wee on the way – I don’t want to be uncomfortable. I’m getting to know some of the faces in the oncology waiting area, and wonder at the constitution of the waste products being flushed down these toilets. Not much can be alive in the sewers beneath Derriford; the recent research that mentions the amounts of medication finding its way into the water supply via excretion have nothing on this cocktail. These must be among the most toxic toilets in christendom.

Having wondered about the type of tree in the ceiling light panel of the radiotherapy room, I have noticed that each radiotherapy treatment area is named for a tree. Mine is Acer. There’s my clue then. On the wall by the tiny waiting space is a series of oak plaques carved with a poem. It’s taken me five days to decipher with the odd fluorescent light casting shadows in the wrong places, but I rather like it. There’s also a second hand book shop run by POOCH, a fundraising charity founded by a local man I know called Dave Hocking.

I’m getting to know my radiographers now, and we chat about this and that. I know exactly where to put my bum on the gel pad (much closer to the head than you’d think), and I know when I’m central, and which part of my neck needs to press into the rest, and the angle to place my nose and chin so the mask clamps without pressing. As one of them said, correct positioning is as much about me knowing it’s comfortable as it is about them measuring and lining up. The mask clamps, I wiggle my head slightly, there are some minor adjustments as they check either side, everyone except me leaves the room and we’re off.

I tend to close my eyes for the first minute or so, then once I feel okay with the pressure of the mask, I open them. The circular head of the machine begins overhead, then moves across and the imaging plates appear to the sides. This is the checking and lining up phase as far as I can work out. It’s similar to the feeling I get while sitting in my rocking chair at home, when people passing on the bridleway peer in through the sitting room window. Some even shade their eyes to get a better look.

Then the whirring starts. There’s a clunk and a jerk as the slab I’m on moves into position. At this point there’s nothing in front of me beyond the blurry bone-coloured plastic and the dark ceiling; in my peripheral vision to the right appears the machine head, like a sun rising. Pure 60s sci-fi, ominous, detached yet intrusive. When you feel someone’s eyes boring into your skull, this is the physical manifestation of how that feels, being probed by an alien you can’t quite see.

The machine head swings over the top, close to my face. The central area, glass-covered and framed by white plastic, turns. The machine head moves to the left, tilts on its axis, then begins to swing across and back to the right. The beep comes, and then a sound like a dying wasp trapped in a glass. This is the sound of the radiation, the particles being accelerated perhaps. I can feel it, a slight tingle that oscillates with the frequency of the wasp sound. All the while the dishwasher whirr continues in the background. There’s another beep, and the machine returns from right to left, tilting and stopping just above my left temple. Then it’s back to the middle, the machine staring straight at me from a foot above my face. There are some holes, some grey plastic parts. The reflections hide much. A blank, empty stare. What’s it thinking? The radiographer reappears, unclamps the mask, and I wait for the head to be raised so I can sit. All done. It’s taken maybe 20 minutes in total.

We return to B&Q, but not before I’ve eaten a rather nice fruit scone and then a Crank’s egg and salsa wrap from the oncology café. At this time of day I’m always hungry, and able to eat. Later on, I start to feel yeuch and eating isn’t an option. At the weekend with just the T and no rads, I felt slightly less nauseous. I’m unsure how much is T and how much is rads, but I think there’s a definite effect from the rads. I’ve taken to eating around 8, having popped an ondansetron a bit beforehand.

After three or four sessions in Acer my scalp is becoming sore, and I can feel some heat on both sides. The scar is reddening. Last night I used cold-pressed coconut oil as recommended somewhere on line, and gently covered the warm and sore areas along the right parietal area, and on the left where the rays have come through. These are the areas where my hair will fall out after 2 – 3 weeks, which will actually make it easier to oil, so there is a god.  It felt better, post oiling, although I did look like a Brylcream girl. I washed it out with my gentle shampoo this morning, and it feels far less sore. I also get a right-sided focal headache that begins shortly after the treatment, and worsens till I go to bed. I’m taking paracetamol for that, but it’s perfectly bearable.

Another bonus is I’m sleeping. I feel generally drained, and tired in a can’t-be-arsed to do things kind of way. I can walk pretty well in the morning, but less so in the afternoon. I don’t feel sleepy. When I go to bed, I nod off in minutes (I never do this normally) and wake between 6 and 7.30. I can quite happily nod off again in the morning if I don’t get up. I’ve lost my morning heat sensitivity too, which I think is more down to the low dose of steroids. This morning I showered Bun, who was pretty manky. After that we went for a walk at Long Ash, but it was so hot I couldn’t bear the sun. I’m rocking the keep out of the sun look, but each time I move the hat blows off.

Today I have my weekly review with Dr Pascoe, and she’s happy with how I’m feeling and my blood counts are fine which is nice to know. She asks about headaches and nausea, and warns it’s likely to worsen since I’m only at the end of week one; however, the area being irradiated is relatively small. She shows me the prescribed area – the larger one I noticed at the start is actually a slice taken vertically through the brain rather than horizontally as I’d thought. This corresponds to a 3cm margin around the tumour site. Sarah says we’ll try to stop the dexamethasone altogether by the end of this phase of treatment if everything continues to go to plan.

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IMRT treatment area through the horizontal plane
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IMRT treatment area through the vertical plane

I take my Temozolomide and go up to the Mustard Tree to await my radiotherapy slot; there I get chatting to two women with breast cancer. It’s the first time I’ve really engaged with anyone in the center generally, which isn’t like me at all. I wonder if it’s to do with the can’t be aresed-ness this week. Making conversation isn’t something I feel like doing. Nonetheless it was good to chat. Both of them volunteered that if things don’t work out for them (and I don’t know the details) they’re intending to stop treatment at the point when they become ill, to make the most of what they have left and to let nature take its course. Me too I say. We talk about wills, and about advance directives, both of which I need to address. I also learn the details of their recent marital breakups and we agree that friends and family are where it’s at when you have cancer. All in 20 minutes, cancer’s as much of an icebreaker for letting it all hang out emotionally as wild swimming.

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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.

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…

 

Negative positivity

I’ve been thinking about positivity a lot recently. It feels good to have positive vibes heading my way from all directions. Yet positivity is also a kind of scourge of our age.

The expectation of a positive outlook can exert a huge pressure onto a person like me, who is in a situation where life is literally subject to the whims of fate. Positivity given is always meant well in my experience, but how often it has the opposite effect. I tend to be positive, to take positive – if not crusading – actions. But sometimes I want to scream, or lie on the floor and give up. That starts to feel like a failing when you’re being held up as a paragon or an amazing person for getting on with it in whatever way presents itself. If that involves three months of crying constantly, then I don’t have a problem with that. It might even be a positive act.

I know I’m lucky; lucky to be able to write and to have found a wonderful writers’ group in Stirling where I attended the university as a mature student in the 1990s. The writers at the local, council-supported group were instrumental in the development of my style and interests. One of my favourite quotes on how to be a writer is from the late, great Maya Angelou whose writing I first encountered via the group:

“Some critics will write ‘Maya Angelou is a natural writer’ – which is right after being a natural heart surgeon.”

It’s being able to write, and being able to adapt to the brain swelling-related deficits in that area, that’s enabled me to keep going with my head pretty intact through the trauma of the past few weeks. It’s also given me a purpose where the various elements of my fairly random life path have melded into this blog.

One aspect of dealing with the big C word is the power that word holds; I described it as a Jihadi snuff movie in an earlier post. Having already had breast cancer in 2010/11, this isn’t a new experience. There are plenty of other illnesses that are equally or more life-threatening, yet they don’t carry the punch; If there’s a disease of the age, cancer is to us as TB was to the Victorians. However, considering a brain tumour is quite another thing. It’s affecting me in a way that breast cancer never did (I didn’t even know that was there), because it’s messing literally with my mind and also my body. I feel ill.

When I was on the speedily efficient pathway towards neurosurgery at the start, I had a momentum. That came to a juddering halt two weeks ago when the meteor of the bed crisis walloped into my path, cracking the earth beneath my feet and setting up a series of tremors and reverberations that continue to circle. Circling is not what I need, I need a positive pathway towards discovering the nature of Hunt and then a treatment plan. So to be hit by the arrows of mindless positivity really does grate at the moment. As does being told how well I look. It’s the steroids. I neither feel, nor am I well.

Hunt the tumour made himself known as the steroids reduced the surrounding swelling which had caused me so many problems over the past months.  I felt Hunt initally as a pliable, generalised right-sided entity, but now he has assumed a more weighty form. He’s curdled and crusted into a hard-edged, dark presence like a bakelite light switch. His carapace still wobbles at the back of my neck, but I can feel him exerting pressure and the focus of my headache is there. Worse I can feel him growing. Little prickles, an outwards force from the centre. All in my head? Yes. But whichever way you interpret that, it’s not positive.

I’ve had to continue ask people to back away from messaging me, because I can’t connect with them at the moment.  While they’re all asking me not to reply, I feel bad not doing so. The utter desolation from Friday’s cancelled surgery meant that each kind thought and positive message made me feel more like Saint Sebastian, under barrage from ironic arrows as everyone tried to tell me it’d be alright. It won’t. So much love and support is what’s keeping me going, of course, but I can’t always engage with it because this is my world, and as Kari keeps telling me, it’s bloody hard, and it’s going to get harder. I like that. I need to know the worst too. I need to deal with that.

Addenda

Yesterday my cousin Sarah and heavily-pregnant goddaughter Kayleigh visited. We talked for hours about our childhood, and about Kayleigh’s baby and plans for the future. We also talked about some of the darker aspects of life. I’d call that a positive experience overall, with some balance.

My GP also called to see how I am, having seen the BBC Spotlight interview. My white cell count is slightly raised from the bloods he took last week, and so he wants to do another blood test this week in case I’m brewing an infection. Hopefully though it’s just the effects of the steroids. He has emailed Sarah Wollaston MP, who was a Devon GP and whom he knows, on my behalf. The NHS is still there for me.

I didn’t hear from the hospital which is beyond disappointing, and I got no reply to my calls, leaving a message on Tony’s answerphone in the end. After Friday, I think they owe me a call even if it’s to say, as I suspect, that this week’s not looking good either. My friend from Friday, however, texted and has had her new date confirmed, which cheered me no end. She also advised me to contact my Macmillan nurse to chase up what’s going on; Ellie had come to see me as I waited for surgery on Friday, but didn’t know it had been cancelled. I’d forgotten about Macmillan in the rush, because I wanted to get the surgery out of the way and it had been full steam ahead. I can also have some complimentary therapies there. So my plan today is to access some of that holistic support offered by Macmillan.

 

Burgh Island &the naming of Hunt: 1

A text from my friend Plum, who’s suggesting she comes down for the weekend and we go somewhere nice. Yes please.

Out of interest, how do you feel about dressing for dinner?

Dressing for dinner? I have no clothes, I’ve grown out of all my dresses…

Well, I was thinking of the Burgh Island Hotel and I’ve always wanted to stay there so you’ve given me a bloody good excuse.

Seriously?!

She calls back a bit later – not only has she managed to get us in for one night on Saturday we’re also booked into the Mermaid Suite, which overlooks the famous Mermaid Pool, built by damming an inlet on the side of the island so that it remains filled with sea water.

Naturally, being wild swimmers who regularly frequent this area, we’ve visited and enjoyed this private pool before on a number of occasions. The difference is, we’ve been there in a slightly less than official capacity. The normal raid involves swimming round the back of Burgh and swimming covertly (ish) up the gully to the dam, before scaling the rocks and sneaking in. I think we might have to skinny dip just to make our official swim less legit.

Mum makes one of her famous treat lemon tarts for the morning, we’re to be there by 12 latest as the weather’s looking iffy and there is only the landrover to get us across because the sea tractor is out of order.

I retrieve a couple of dresses from the cottage, and actually I’m not quite as fat as I thought, though it does look rather stuffed around the middle. My big gold velvet shawl will sort that. We joke about being told off at dinner for various sartorial crimes an or having unsuitable restraining underwear.  Plum of course has made a call to the hotel and discussed our dressing for dinner worries with one of the staff. The gist of it is don’t wear jeans and make a bit of an effort, but you don’t have to go mad, although you of course may.

I’m so excited! Texts Plum. So am I. Once we’re there, we’re picked up by our Slovakian driver and over we go. I think of the Simpson’s episode where Homer joins the Masons. Another world of luxury is revealed, different entrances, different approaches.

A glass of chilled sherry, bags carried up, and there’s a bottle of Sauvignon Blanc on ice from Kari in the siting room of our suite.

We start with a postprandial sauna, then wander sweatily to reception for our green outdoor towels.

“You’re going swimming? I’ve already been today!” laughs the receptionist in a strong eastern European accent, arms waving and eyes rolling. Many of the ice swimmers on the various outdoor swimming social media are eastern European, the kind who saw a hole through ice with a chainsaw and pay a man to row around all night so it doesn’t freeze over before the morning dip. But this woman is clearly not of that ilk.

The staff are so funny, beautifully polite and attentive, with a formal style of speech that’s modified by twinkles in the eye, as much banter as you like and an eccentric edge to their dress and hair which makes me feel at home.

We have a wild swimming friend called Queenie, and the most famous regular guest in the Mermaid Suite from the 30s is her namesake, whose bedroom furniture was left to the hotel and now lives in the suite. Walnut art deco curves, gleaming and gorgeous. It’s not my favourite era in terms of style, but to see this icon from within emphasises how place and time can sometimes throw up a crazy perfection from such disparate elements. Back to constellations? Such formality, clean lines and control in Art Deco, such wildness and edge on this piece of heavenly Devonly coast. The colours and the light form the mainstay of the connective tissues, and the whole seems to hover in the spray while simultaneously bursting forth with pure glamour.

We sneak into the pool, as spray splats over the little dam and across the surface.

I don’t feel confident in my balance or movement but am able to swim a little, puffing, while Plum heads across to the wilder side. It’s blooming cold, we reckon 6 or 7 degrees.

The seas here are spectacular and often huge, and it is swimmable on the right tide at times when you’d think getting in was certain death. That’s why this is one of my favourite swims. Now I’m looking out at the wild sea where I’d more usually be found from the aquamarine stillness of the pool. I remember once  glimpsing the pool from the top of a huge wave while playing the lookout game; you swim gradually closer to the rocks then swim then allow yourself to be lifted heavenwards on an approaching wave as it towers and rears in preparation for crashing down into the rocks, suspended momentarily on the top of the world. It’s a life-enhancing experience to look over that precipice, and drop off the back before the final crash. But for now I’m cocooned with the mermaid.

 

Easy listening in the MRI

“Oh! You’re strong!”

The neurological registrar’s head flashes past my shoulder and comes close to headbutting the wall. It’s clear my paramedic wild swimmer superpowers remain in the right arm at least.

Not so in the left, which is slightly weaker so that when I pull him towards me the neurologist remains upright.

It’s during this examination I realise that my face is numb down the left side, along with my left leg and arm to the elbow.

“I don’t think it’s a stroke, I’m going to send you for an MRI scan. You’re not claustrophobic are you?”  Erm, well a bit depending. I’ll be fine.

The MRI is much smaller than expected; I lie on the slab and the radiographer has to put my left hand into my pocket because it keeps dropping off the table.

I plump for easy listening music, as the mask is placed over my face. The radiographer is smiley, friendly, chatting about the noisy aspects and durations of the scans, and places an alarm in my right hand so I can shout if I need her.

There’s a small mirror at eyeline in which I can see my supine body, and to the rear, a red-brown painting of slightly slanted wide brushstrokes. I start by trying to work out what it is: leafless trees? A squadron of Mr Hanky the Southpark Christmas poos? I’m plumping for the poos.

The music plays, and the echoing voice of my radiographer warns me this scan will be noisy and take a couple of minutes. Noise isn’t quite it. There’s clunking, whirring, banging, and the music oozing around. Vibrations work their way through the very cells of the inside of my head, neck and chest. It’s the kind of physical experience you get by standing by the speaker at a gig, only coarser and more discordant than most musical genres, maybe a bit Nick Cave? Or PJ Harvey.

I think of the Carpenters, a young and beautiful Karen, mutton-chop sleeves and maxi skirts, big hair, trying to stay at the back drumming while they push her to the front to sing as she disappears again with anorexia, all the while pouring forth that calorific chocolate voice. That’s her in the MRI, reasserting her drumming self in poltergeist form. I hope she’s having fun.

What can they see inside my head?

A dark grey silhouette appears, my brain in fashionably drab wall colours. Aside from being a woman with a love of colour, I could never live with a wall where I can’t see spiders. Can’t see the spiders on my brain chart either for that matter, so I turn it orange, then aquamarine. Definite improvement.

I start from the top and name the areas of the brain I can remember as I go. Then I return my cartoon map to orange, and start from the inside, working out, scrabbling for functions. Why am I seeing my brain in textbook form? It’s not something you usually think about, invisible yet ubiquitous, omnipotent…

I walk into the farm building. He’s lying on his back, 12 bore shotgun resting along his body from thigh to chin, a dark, petechial-looking rash of shot sprayed up, over what’s left of his nose, upper jaw and cheek.There’s a whiff of earth and death. His hair is quiffed  with blood and brains, dark and sticky, drying in the warm air. There’s a mess from the exit wound that’s blown the back of his head off, almost black and shiny in contrast to the dusty earth floor.  I look for signs of life, but know there are none. I grab my stethoscope to listen for heart and breath sounds before setting up the 3 lead ECG. My job here is only to note and remember the details for my records, recognise death, then complete the paperwork for the police. Then I’ll go and check on the people who found him, have a chat, make sure to contact the local surgery so they know there are people who might need support.

I go to move the man’s shirt, and notice the hunks of brain, satsuma to grape sized, dropped casually as if from the sky across his chest like a Masterchef plate. Greyish, alien, certainly not perfused with blood or alive, but unmistakably brain. Above his shoulder is a larger chunk that wobbles as I move my foot to squat over him; that’s why you won’t often see an experienced paramedic kneeling.

Brain, body, soul. One of the clear categories for not starting advanced life support for a paramedic confronted with a recent death is ‘massive cranial destruction’. That’s what I see here, and the death of the body is evident in any case. Brains are something else, the control centre, the mind, the self. I wonder what this man was like, how his voice sounded. Did he have a sense of humour? What drove him to this? What was he thinking as he pulled the trigger, how did he keep the barrel straight, not flinch? How did his brain let him die?

A new scan starts.

“Lynne, we’re just going to pop a cannula in and inject some dye so the doctor can get some more definition. Is that okay?”

Uh oh. There’s something there then.

Cannula in with a sharp, welcome physical pain, dye in, poltergeist Karen returns.

What would be best? Stroke, maybe. I’m not in a majorly bad state, considering. I’d settle for that. If it’s a clot, though I’d have to take warfarin and won’t be able to eat broccoli or drink pink grapefruit juice. MS?  It’s in my family; my uncle died from complications in his early 50s. I’ve already discussed that with the lovely neurologist who says that a genetic link isn’t established but that the MRI will pick it up. I’ve had no visual disturbances either, and those tend to go with MS. There are plenty of other degenerative diseases of the nervous system which I decide to ignore. The various forms of dementia keep nudging, and I know that’s my worst nightmare. Losing my mind. Brains chunked all over the floor of my life.

Tumour? I try to blank that one. But it might be a small, benign tumour, treatable. Might not. I’ve been to people who have the nasty type, read up on them afterwards. I like to know, to understand the workings. If I have galloping dementia I won’t be able to do that so maybe there’s a bright side.

“There is an abnormality there” says my neurologist. I know that already. We’re sitting back in our little room in the AMU. The nurse – a proper Plymouth chap full of muscular banter and warmth, who looks to have dropped in from a passing frigate, has a serious face on for the first time today.

The scan appears on screen, as the neurologist selects the picture he wants.

“There? It’s a tumour”. He’s looking me in the eye.

I think I say “Oh”, then “do you know what kind?” It resembles a misshapen foetus but I reject that image at once, think of nuts instead.

“The white area around it is where the dye has been taken up, so that’s the blood supply. A blood supply usually means it’s malignant.” I know that all cells need nutrients and oxygen to grow, and cancers set up their own supply lines in the body, muster their troops.

“It might be a primary brain tumour, or it might be a secondary from another cancer somewhere else. So we need to do a whole body CT scan to check. There’s a large area of swelling, where the tumour is irritating your brain. That’s what’s causing you the problems so we’ll give you a course of steroids starting now.”

I had breast cancer in 2010/11, culminating in bilateral mastectomies. I think of myself as one of the lucky ones, because my cancer was supposedly not invasive, and was discovered almost accidentally. It turned out to be far bigger than expected when removed, and so the mastectomy became the best option. But there were good margins of clear tissue. My un-diseased breast mastectomy was my prophylactic choice based on my mother’s breast cancers on both sides, and my outdoor lifestyle and hatred of bra wearing. I got my histology reports and researched what I had, and felt I had a good idea of the risks. Plus I wanted rid. There turned out to be a risk factor for cancer in that breast too, so I felt entirely vindicated. Mastectomy also meant no radiotherapy which was a bonus.

So this is potentially a bit of a shocker, though of course it might not be relevant at all.

So there’s a wait, and then the CT scan.

The nurse asks me if I want a private room, but I choose the recliners in the treatment area where there are people. I watch him as a more traditional-looking female nurse glides by smiling. I love the contrast, the variety of styles and approaches. They all work together, doctors, nurses, care assistants. I’ve just had a chat with the cleaner too. It’s a team, where they fill in the gaps, relate to their patients who all need different things. No corporate bland for the NHS, despite the pictures along the corridors spouting mission statements and branding.

I don’t want to be alone. I’ve called Dad who’s gone to fetch Mum from the prison where she works. I call two friends and tell them, just to make it real and have some contact with voices I love. I haven’t cried or wobbled, I just feel stunned.

“Thank god for the NHS” I say to Kari.

“You greedy cow! You’re getting all our money – won’t be any left for the rest of us once you’re done!”

Alongside me to my left rests a young woman, recovering from a lumbar puncture. I ask her how it was and explain what CSF is when she wonders, admiring her funky bag. Then I tip my cup of water all over the floor next to her, narrowly missing the gorgeous bag.

The nurse has bought me a refill of water. I pick it up and spill it over the table.

“I’m so sorry” I tell the young woman.

“It’s fine, I overheard you telling your friend, don’t worry.” She smiles.

The nurse reappears, this time with a towel, and mops up the growing puddle.

“It’s not your fault, don’t you worry”. I want him to call me ‘Bird’ but he doesn’t.

He brings the steroids and more water. I pick it up.

“Right hand!” warns my young neighbour, giggling.

“Thanks Mum!”

Bless her. Young, probably scared and relieved the nasty bit is over, and confronted with the damper random effects of my brain tumour.