The weekend effect

It was all going so well… I had a lovely visit from one of my mastectomy friends who came from Cambridge on a walking weekend and stopped off, bearing cake, including the best Bakewell tart ever. It was lovely to see her. I was feeling okay till dinner time, at which point the nausea and headache struck. Ondansetron and paracetamol didn’t help, and by 10pm there was no change so I took a second Ondansetron. I slept sitting up, and woke at 4 with a headache and nausea. So the weekend effect strikes again; I have my weekly review on Thursday afternoon and then everything changes ready for the weekend.

So on Saturday I doubled the Ondansetron to 8mg morning and evening, to no effect. I toyed with the idea of calling the out of hours GP, but I’m pretty sure the cause is brain swelling from radiotherapy. I wonder whether having the weekend off will help, but Dr Sarah has already explained that it’s about fractions of doses of radiotherapy, and those build. So I took a second 2mg of dexamethasone at 12. I still felt nauseous and headachy on Sunday, when I took 4mg of dex in the morning. I also dropped one of the steroids while trying to take it, but couldn’t find it on the floor. Then I noticed a small white blur in Bun’s water bowl; there it is, the mostly dissolved little pill. Just imagine the results of that, Bun on roids!

I feel down about upping the steroids which as you know make me feel all-round crap. At that dose they start to cause steroid myopathy (muscle weakness especially in the thighs and upper arms). I’ve got a lovely trip planned next weekend, and I was thinking that it looked hopeful that I could do it. Still, the focus has to be on getting through this six weeks, and on managing the signs and symptoms. Maybe the myopathy won’t reestablish itself for a couple of weeks. As Plum said I know it’s worth doing this treatment in terms of extra good time, so I have to stick my head down and get through it. Also as of Thursday I’ll be two weeks in which is a significant proportion.

I’ve over-committed myself, voluntarily, and and spent much of the weekend failing to finish the feature I’m writing for the Tavistock Times, and fighting to make some curtains for my brother and sister-in-law’s bus. It was curtain Armageddon, with a series of disasters involving some pink tailor’s chalk that turned out to be wax and wouldn’t come off, shrinkage in the wash that took 3cm from the length (I told you I should have washed the material first Mum), and unpicking 1.8m of machine-stitching using a pin and some dressmaking shears, wearing a Petzl head torch because I can’t see well enough and we’d lost the stitch unpicker, and the shops are closed. It was all okay in the end, and the curtains were duly installed in the bus using the only ten curtain hooks we had. The two cushions I’d made in the week also looked pretty good. I managed to eat dinner (currently the meal I have trouble with) but then went through 3 hours of being unable to keep my eyes open, which kept happening in the two weeks before Hunt was diagnosed. It’s more than tiredness. Bun asked to go out, and I just couldn’t summon the energy to get up from my bean bag. In the end I rolled onto the floor on all fours and forced myself to go downstairs an inch at a time like Peter Crouch’s robot goal celebration in super-slomo.

I did sleep last night, and woke at 6 feeling as alert as I ever do in the mornings. So today I’ll speak to one of the oncology staff about what to do, bearing in mind I now have another five fractions of IMRT coming up.

Kari returned from Iceland full of stories about her new best friend whom she’d met with near her home in the far north of the country.  Kari found this new friend via Facebook after she was told about her by a man she met – who’s probably quite famous but she can’t remember his name – on a tv programme she appeared on as a part of her Diamond Duke of Edinbugh ambassador role. This woman tans hides in the north of Iceland in a disused herring processing plant. She’s tanned seal hides including from a near-term foetus found inside its mother, all of whom drowned in fishing nets; such a horrible thought. This woman teaches Inuit how to tan hides too, since much of their knowledge and skill has been lost.

There are geothermal chimneys in the fjord near to the woman’s home, that are normally only found in the very deep ocean, but which here are just meters from the surface. The sea is still utterly freezing, however. Kari is utterly enthused. I want to swim over the chimneys, and to meet Kari’s new best friend. Something to look forward to.

 

 

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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.

Histology Results

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

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

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

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

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

Result

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

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

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

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

Now we move to the results.

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

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

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

I’m expecting this to be metastasised breast cancer.

It’s not.

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

It’s 45mm x 30mm x 23mm.

Mr F:

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

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

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

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

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

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

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

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

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

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

No, just the tumour site, that’s all.

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

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

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

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

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

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

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

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

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

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

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

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

So in summary:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What is Hunt made of…

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My appointment is at three.

Days and weeks swirl, entwine, unravel, knit into new forms.

There was a melt down, and I write that in the passive because that’s how it feels; a passive, dissociative melt down with a brake. I know what’s coming isn’t good, I know. But do I?

And still there is admin, and negotiation, and worries about extraneous things. I haven’t sorted my work questionnaire for DWP, who are back on the Fit Note references. I had a warning letter because time runs out on 6th. But I can’t do it, I can’t work out how to organise it, need to speak to HMRC, can’t work it out. Can’t decide.

I went to the Tavistock Macmillan drop in on Friday, they will write me a letter. I was talking about all sorts, but not really. My brain is in control in some sense, but I’ve lost me in there.

I sense skeins of spider silk, spinning from my brain, around my physical body, back through the mind, a kind of pupa perhaps. Such a weird physical, mental, emotional space. An evisceration of the idea of mind-body dualism, where I cannot tell cause from effect, psyche from physiology. My body is constrained by loss of sensory function in my face, legs and hands, dead numbness, equating to the numbness in my mind. I have an oval area about a foot long, laterally above my left knee, which is dead, yet burns intermittently; I thought it was an area of steroid-related sandpaper skin, of which I have several. But the skin there is soft. There is an absence of muscle, a flatness. The tight area in my skull where the craniotomy heals tugs gently across the diagonal.  I’m weak. I sit and feel the weakness, draining, draining. Steroids? I’m still less than three weeks from the op. Permanent or temporary? A mix? My strong body is gone, and my mind struggles; and I know not whether either will return.

A swimming friend, whom I know only via Facebook, sent me Atul Gawande’s book Being Mortal in both written and audio form. I read and listened, in short bursts over the past week or so. The gift was in response to my blog post Death and all his enemies about social care and our elderly people in particular, and the way we torture people at the end of their lives in such a misguided mess of enforced treatment and isolation. The book is astounding. I am already open to such ideas, yet the range of evidence and approaches, and some of the things I’ve personally done to persuade people to accept care, hit me too. How complicit are we all in this?

Then, where the book turns to treatment for illnesses such as mine, and the purpose of it, then to the boundaries of palliative care, I find myself reconsidering much about the treatments I might be willing to accept now – in particular brain radiotherapy which I know is the primary treatment for me whatever the outcome today. While Gawande talks about the market-driven US (not exclusively – his explanation of the extended family and their care for his own elderly forbears in India is englightening), there are plenty of vested interests at play anywhere Big Pharma and the medical model hold sway. Enmesh those with our current cultural refusal to discuss or accept death, and we have a complexity that is beyond us.

There are many people attempting to address these issues, and a few are succeeding in inspirational ways.  But in a climate where failed austerity policies simply use such ideas as spin in order to justify cuts, and where profit trumps all other value, there will never be anything other than a mess. That’s the real choice; most of us will end up either dying from an illness, or decomposing into loneliness and frailty where the point of our lives is lost. That will most likely be you one day. So would you like a tax cut and a nightmare end?  Or would you prefer to have excellent social and health care that ensures your happiness and a managed decline during which you aren’t locked in a nursing home without your pet, or the ability to wander off when you feel like it, or to drink your nightly G&T? It’s about control. Social enterprise, decent social services in the public sector. It’s not about profit for offshore hedge funds, or investment rooms in nursing homes.

I’ve no idea what’s going to happen later on when I find out exactly what Hunt was made of. But I know that I have choices, and I have plenty of research to undertake. I’m going alone to the appointment; I know it’s going to be hard, but I have to remove myself from the worry of how anyone else there is going to take the news too, and I can’t. So I’d rather take it in myself, make notes, and then explain later on.

Thank you for the lovely messages, and to D for the book.

 

 

 

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

IMG_1459

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…

 

The dog formerly known as Bun

IMG_2701“Bun Bun! Come!”

I attempt a whistle, and for the first time in weeks manage to make a fairly piercing sound (thanks again roids). You’d never know, however, since Bun continues to hoover up rabbit poo on the far side of the field and betrays no sign of having heard me whatsoever. I try again.

Oblivious.

I pull the bag of sausage slices from my coat, and shout:

“Sausage!”

Bun comes bouldering towards me, 300m at full sprint, a polar bear after a seal. She skids to a halt and sits, head and ears perked and tail straight back, so I can drop the sausage into her mouth.

Honey Bun came to me aged 3 1/2 as the victim of a family breakup, loved but largely untrained and with little in the way of socialisation with other dogs. She’s now 9, and is well-behaved, loving and generally gorgeous, funny, tolerant of other dogs, but with a sniff and food obsession and high intelligence commensurate with her labrador and standard poodle ancestry. She sometimes needs a firm hand, as in this case, where usually I would go to her and make her come to me, then run through a few commands just to remind her who’s boss (?). She is trained through constantly reinforcing wanted behaviours, and then tailing off the treats so that the dog is never quite sure whether she will get one but thinks it’s worth a punt.

I have mentioned our worries about her during the period since December where she was clearly upset by the changes in atmosphere and the moving of things from one house to another, and over which I now know I was unwell. The result of this is that she’s been fed more treats and generally overindulged.  Yes she’s spoiled (another memory is coming to stay here for a night and telling Mum I didn’t need clean bedding to which she replied: “But that’s Honey’s bedding”; Mum had been making up the bed in the spare room for her with her own duvet, cover and blanket, each time she stayed which was often then, when I was working shifts).

When we discuss dinner, Mum will say “Honey and I are having liver”, or “I’ll get a pheasant out of the freezer for Honey”.  That’s partly  because we love our dogs, and partly because my farmers’ daughter mother considers dogs who live in veggie homes to be nutritionally and emotionally deprived. Yet Bun is still expected to behave and knows her boundaries.

M and M arrive and Bun is in the garden. M calls her to say hello.

“Bun!”

She blanks M completely. I tell M about the sausage call.

“Sausage!” she says.

Bun screams into the kitchen, cornering like Guy Martin, and sits by the fridge.

So, as an unintended consequence of my illness, the dog formerly known as Bun now answers only to Sausage.

I imagine similar stories relating to kids.

Beds and blurring

I’d tried to rationalise the blurred vision, and was still unsure about what to do by the morning yesterday. An optometrist I know had contacted me to say she’s never heard of cataracts developing that rapidly, and to get my visual field checked by an optician as the tumour could be affecting that so I felt quite reassured.

I decided on the GP, partly from knowing that Derriford would be in full Monday morning chaos sorting mode, and partly because while I want them to know I’ve developed this new symptom, it felt more appropriate to get the other possibilities checked out locally. Also, the only thing that would stop it if it is Hunt-related, is removal of the tumour which they are doing their utmost to arrange in the fallout from £4.5billion of cuts to social care to the acute setting.

I was given a duty doctor appointment for 1130, where I saw another excellent doctor I know mostly in a professional capacity from his work for Devon Docs. He worked through my concerns starting with the breathlessness and checked my chest (clear as I thought) and general obs. My eyes looked good, and I was able to see at the peripheries.

We talked about the situation, and I explained that I’m half thinking these symptoms are in my head in more ways than one, as I continue to circle with the two top choices between a primary brain tumour and mets.

He ran over the very many side effects of dexamethasone, and mine are there. So the doc’s conclusion is that side-effects are top of the list, but that we’ll exclude a few other causes so he takes some bloods to check for various other problems including anaemia which is another cause of breathlessness.

I ask him about the blurring and  its specific cause. He’s not sure, but suspects that it has to do with changes to the pressure in the eyes, which are filled with jelly-like substances called the vitreous humour and the aqueous humour. Seeing the shifts in fluid in my body, it’s easy to translate into small changes within the eye that begin to distort the vision so that made total sense.

The bad news there of course is that I need the steroids. All medications have unwanted side-effects and risks. They are given on the basis that the benefits in a specific situation outweigh those negatives. In my case there’s no question in my mind that being a bit bleary-eyed is preferable to the problems I was having over the past few weeks and even months. So I am going to have to deal with the blurriness, potentially for a prolonged period. Already it varies, but I’ve only had a few hours of being unable to read completely. Otherwise it’s like the period an hour or so after you’ve applied viscous ointment to an eye and there’s a thin film over the lens. It’s only really noticeable if I try to watch tv which I haven’t been doing much of in any case, though I did desperately want to watch Raised by Wolves. I have Radio 4 podcasts, a cd book from my friend L, and my music. M has set up my laptop to read text (while other M shaved my legs, though I probably won’t notice the hair now).

I called Tony my nurse late afternoon and left a message, but it’s feeling pretty bleak in terms of bed prospects. While the neurosurgery department have been wonderful in so many ways, I do have this one criticism about information. I understand absolutely the situation they are in, the frustrations, and no doubt the many other people who are in the same boat, or who have had their less urgent surgeries cancelled due to events beyond the control of the department. Magnify the way I’m feeling by all those people, and it’s a whole lot of stress. Might it be possible to provide some kind of regular update for those of us strung up and swinging in the winds of this bed crisis? Perhaps a daily phone call, or a message board on line, or an email, even giving a simple message of we still don’t know? That would make a huge difference to me.

One other momentous event happened yesterday, which was an overwhelming day all round. More on that later. Now I’m off to give Sausage her breakfast.