Radio Gaga

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Cheshire Cat Hunt: it’s a no brainer

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

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

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

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

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

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

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

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

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

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

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

Are you swimming in swamp water? Asks Dr Sarah.

No, moorland rivers or the sea… 

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

I sign the consents.

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

DWP

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

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

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

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

 

Histology Results

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

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

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

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

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

Result

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

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

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

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

Now we move to the results.

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

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

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

I’m expecting this to be metastasised breast cancer.

It’s not.

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

It’s 45mm x 30mm x 23mm.

Mr F:

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

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

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

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

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

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

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

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

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

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

No, just the tumour site, that’s all.

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

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

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

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

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

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

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

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

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

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

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

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

So in summary:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What is Hunt made of…

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My appointment is at three.

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

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

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

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

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

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

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

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

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

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

 

 

 

Endless soap

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Waiting and waiting.

On Monday, I met four friends for lunch, my first outing since Op Hunt Saboteur. It was fantastic to be out with people, eating, talking, laughing and being generally human.

One topic of conversation was the Archers slow burn storyline of coercive domestic abuse as Rob begins to undermine and control Helen, gradually increasing the pressure to the point now where he has hit her. One of my friends had been unable to continue listening.

For many years, I loved East Enders. I enjoyed the bleakness, the characters, the writing and storylines, the families and their relationships. As a writer, I learned a great deal from the ways that those plots interwove, the need for ancient soap history in order to unscramble some of the current issues, the building and releasing of narrative climax.  Soap narratives are always open-ended, there’s never a happy ever after, the end – not even for death.

Remember the return of Dirty Den, whose body had been recovered from the canal a year after his shooting? That British kitchen sink realism contrasted so perfectly with the glamour of US soaps, notably Dallas and Dynasty in the 80s, where characters were horribly burned in car crashes to return as a new, flawlessly beautiful actors after burns surgery. Den just reappeared, teeth bared as usual,  having apparently faked his own death. Then the trope of improbable plots became deliberately hilarious with Footballers’ Wives – the fake tan baby swap was the pinnacle of British soap piss taking meets pantomime.

But East Enders began to change. The Dawn Swann and mad doctor May storyline went on, and on, and on and on. I could no longer suspend disbelief, or even enjoy the disbelief as an end in itself. I stopped watching, because I simply couldn’t take any more of the dragging out. This is a recognised phenomenon, and it’s the one S was mentioning at lunch. It has several names, including ending fatigue. It prevents us from ever attaining the emotional resolution we need, because there never is one.

Waiting, endless waiting. Always waiting.

I love a good story, a good drama. Some writers have that ability to tell tales in such a way that they reveal deeper truths, surprises, twists, new perspectives. Writers like Hilary Mantel, Kate Atkinson, Joanne Harris and Stephen King know how to do that, understand the balance, the importance of characters and situations. Then there are those highly popular storytellers who lack finesse or skill, who just offload a good story in narrative chunks, tell rather than reveal;  Jeffery Archer and Barbara Taylor Bradford are two who rely on that tactic. It might be a rollocking tale, but it leaves me cold because I’m interested in the wider truths. Stephen King describes finding a story as digging up a fossil using a range of suitable tools; if you hack at it with a mallet you’re going to lose lots. (If you look down on Stephen King, read ‘On Writing’; he’s wonderful, and he’s a darned good writer).

My own reveal has been prolonged already; gradual awareness, inquiry, thought, explaining away, and then the start of the resolution for the first part of my narrative; I have a brain tumour, here it is on the MRI scan. I fossicked to find more, was met with honesty, a few suggestions, no definites. That’s the beginning of my narrative as its progressed and I’ve begun to take in what is going to happen. Meanwhile the possible outcomes have narrowed.

At each stage, I’ve met setbacks. The delayed operation, the result of a wider political culture that’s hell bent on privatising and putting finance above social care and public welfare impacting directly on my personal story. Then the cancellation for no bed as I was prepped and ready to go. The melodramatic decision to go on Spotlight. The wait for the next op date, the stress of sitting and waiting, wondering whether the bed would be there for me.

The operation went ahead, I came through remarkably well. I’ve learned that there’s no magic abcess to let me off the hook and as information has dripped in, I’ve understood that this is most likely the illness that will kill me. But I don’t know for sure; maybe I’ll get run over by a bus, or trampled by a Galloway on the moors. I know I will have radiotherapy on my brain first off, I know that I have cancer cells roaming my brain because the protective blood brain barrier has been breached.

I know the prognosis for a GBM4, the type of primary tumour this might be, is poor. I know the prognosis for metastasised cancer (most likely this will be breast cancer, but not for certain) is variable, but poor. I know I have nodules on my left lung that might be further mets. I don’t know how treatable they are, whether the disease process can be slowed in my case.

So here I am, living the endless soap of setbacks and delayed resolutions. As S said about the Archers, the stress comes with the lack of an emotional release, the resolution delayed to the point where you’d rather stop listening.

After my prolonged Easter weekend wait, the two bank holidays, the not hearing, I tried on Tuesday afternoon to discover when my appointment would be. There is one Neurologist Oncology nurse covering the SW this week, one.  I eventually got hold of a secretary in neurology, who told me that I have an appointment next Monday, but as yet no time; she will let me know. Another weekend. My soap opera storyline continues. I wonder whether I might be killed off now, and perhaps return next year as a new actor without cancer.

Sharing

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I’m half floating, and half leopard crawling through mud beneath a cam net. Yet when I wrote Days of whine and roses, I ended on a floral positive – I just cannot help myself – and felt that endless cycle of effort exert itself, the wanting the next part to be over, conflated with knowing I’m wishing my short life away.

Then this message arrived, from a woman I’ve never met and who became a Facebook friend via wild swimming (what else), and who also broadly shares my political views. She’s given permission for me to blog it; I very nearly cheered in a hurrah kind of way, like the deep purple irises bursting from the top of my flowers.

Shared experiences don’t have to be about the same types of life-crises, or about that imaginary hierarchy of illnesses, the one that makes people apologise for daring to compare when they feel their own life event is less significant. It’s not, and that’s not how it feels when you have to live through it: I remember so many times being unable to sleep or eat for worry over an upset that a week later was gone, sorted out, and of little consequence; long chats with people who have faced worse than I ever had, understanding their differing perspectives and how they reached them; potentially serious but recoverable illnesses, in which I was faced by a difficult but finite period of feeling unwell and physical and emotional recovery; worry about ageing and my deteriorating fitness: endless discussions with friends about dementia, and arthritis, and osteoporosis, and how much wine we drink; all of these brought me to the place I am now, hard cored the track I’m stumbling down.

Sharing experiences is so important on a human level, as is that acknowledgement of the need for slumps. The indulgence of the negatives. It’s a beautiful message.

Birdsong, and another day.

I’ve just read ‘Whine and Roses’. I think some of your gloom may be post-op blues (see, there’s even a name for it); you’re bang on time… Mine hit me in waves after my hip replacement, on day 3 (mostly withdrawal from the surgical drugs, I think), day 11ish and week 5. It’s well described in the hip and knee replacement forums, and very widespread. I think it’s it combination of things: drugs, or withdrawal from them; relief after confronting surgery; fear of what’s still to come; sleeplessness and exhaustion; loneliness; grief; and in some cases – definitely me and I guess you – loss of independence… I wept and wept… And you have far more ‘real’ reason than I had.

It’s difficult to handle, but it’s probably what you need. A sort of emotional tempering, like water on heated metal. If your news is bad, you’ll need resilience, and you’ll have more of it if you’ve sat down with your fears and got to know them. If your news is good, well, your feelings need honouring anyway.

Liminal states are difficult, always, and often scary. They are also magic times, I reckon, since you are closer to truths and wisdom, if you let yourself be. Your instincts are good, but your usual coping strategies aren’t available in the same way: you know to “open the window and let the storm in”, emotionally as well as meteorologically, but you need to find some alternatives for walking in the rain and swimming, temporarily at least. Jacuzzis and drawing were my new discoveries… Yours will probably be different…

The summer following my surgery was transformative for me. I’d never been bored before, since I had always been an avid reader, but I stopped being able to read. I hadn’t had two hours to myself for more than a decade, since I’m a working single mother; but that summer, hours alone stretched into days, sometimes. I’d never just SAT, but sit I did, in the sunshine, doing nothing but healing. Quite extraordinary. I was like some kind of pupa, only recently a wriggling caterpillar, not recognising herself, waiting to emerge as – well, maybe not a beautiful butterfly – let’s say a moth!

We’re used to thinking of boredom as something to be prevented or kept as short as possible; but that summer, I discovered that boredom can be transformative…

I’m waffling now, so I’ll stop. What I really want to say is that, although you’re in the loneliest in-between place, it’s ok; it’s where you’re supposed to be right now. If that doesn’t make sense, just ignore me!

Sending love and courage. Xx

I also received a beautiful card that arrived yesterday via Moorgate Ward: it’s the photo on the top of this post showing the path to Bantham beach from the dunes, a view I know so well, and where I walked just a few weeks ago. It’s from an NHS worker in the Midlands who follows my blog, and who thanks me for telling it like it like it is. I thank you back, NHS worker, for your lovely card, for your support, and for carrying on with the bigger fight, to save our NHS.

Nurses and other expenses

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I had a stressful day on Friday that I’d rater forget about, related to extraneous events that I just can’t deal with at the moment.  I’ve posted a happy picture of me and a  friend swimming last May because it makes me smile.

Luckily, or not, I’ve been diverted by the nurse shortage, which is of course due entirely to events outside the government’s control, and for which their policies and short-termist swingeing cuts cannot possibly be held accountable. Oh, and they’ve been saying, ad nauseum in answer to any number of questions in parliament, just how many ‘extra’ nurses (doctors, paramedics) there are since they started running the show.

Top of Hunt’s list of reasons for the NHS’s staffing problems, is the rising bill associated with fed up staff whose pay and terms and conditions have been eroded significantly since 2010. These staff, many of whom had worked for the NHS for decades, suddenly started to up sticks and display their greed and lack of compassion and vocation by working via private agencies instead of the NHS.

Hunt doesn’t like this. I thought that was how the great god Market was supposed to operate, Jeremy? Otherwise, why are you privatising NHS Professionals? This is the public, in-house staffing agency which makes a profit for the taxpayer. Why, you could even develop it, drive those agency costs down with another nice bit of enforced competition (see Health and Social Care Act for how that works, though it is rather expensive at £5billion a year from the NHS budget just for competitive tendering).  I’m beginning to wonder about Hunt’s brain. Surely blind adherence to dogma and an utter disregard for logic precludes such high office? Hunt is certainly having the kind of effects on the NHS that his tumour namesake continues to exert my own life. The things he’s made me do.

The nurse shortage was highlighted by a newspaper report the other day and it’s a key area of concern not least bearing in mind Hunt’s inexplicable decision to stop nursing degree bursaries and replace them with tuition fees and loans. But the whole story is far more shocking than that.

This report raises a host of relevant issues. The Migration Advisory Committee has recommended that nursing should remain on the shortage occupation list allowing non-EU nationals to be recruited from abroad. It also argues that that the Department of Health (DH) and the NHS failed, with no good reason other than the perceived need to save money, to create enough nurse training places.

It’s estimated that 9.4% of nursing places in England are vacant; and there were 17% cuts to nursing training places under the Coalition government which was a “significant contributing factor” to the current shortage.

The NHS training body Health Education England wanted to commission 3,000 nurse training places in 2016/17. But as a result of “funding constraints” it only commissioned 331 – one tenth of what was needed.

The MAC report concludes:

“It is clear to us that the current shortage of nurses is largely of the health, care and independent sectors’ own making. They did not learn the lessons from the late 1990s/early 2000s when a similar shortage (and reliance on foreign nurses) occurred. Almost all of these issues relate to, and are caused by, a desire to save money. But this is a choice, not a fixed fact. The Government could invest more resources if it wanted to.”

Then a quote from a Department of Health spokesperson:

The Department of Health is “delivering on our plan to train more home-grown nurses”.

What? Could anyone in possession of any of the facts, or indeed a functioning brain, say anything more utterly stupid? It’s no wonder everyone was asleep till the budget woke them up.

Unfortunately, yes, they could. I’m not even going to let you guess who said it:

Hunt in the BMJ: “We’re reforming the funding of nurse training in order to make sure we can afford to train more nurses.”

I suppose he’s referring to his aforementioned plan to replace bursaries for nursing training with loans and tuition fees; bursaries that allow many older people with valuable life experiences to train as nurses, at a time of recruitment crisis and shortages. A policy that will not only actively discourage, but will effectively prevent, many of these people who have families and limited financial resources from training as nurses Hunt has also acknowledged that staff planning has been lacking in the NHS for decades. Yes, it has. So at what point since 2012 when you took over as Secretary of State for Health did you consider actually doing something about it Jeremy?   Bravo Mr Hunt indeed.

And behind all of this of course is Mr Hunt’s big push on safety. Safe staffing involves having enough suitably qualified staff, and the Francis and Berwick reports into the Mid-Staffs failures specifically address this concern and recommends NICE  – an independent body – to undertake the review. Jeremy liked this, because it allowed him to batter nurses over the head with their lack of compassion and vocation, and their silly pretensions at understanding how to manage the complexities of modern medicine, surgery and technical equipment when they’d be far happier floating up and down with lamps and starched hats, porting flannels with which to transfer pathogens onto fevered brows. Except that the actual evidence might result in the need to actually produce real qualified staff rather than imaginary ones and having to pay them to boot, darn it.

Enter NHS England, the body set up to run the NHS after the Secretary of State for Health was absolved of that little responsibility by the Health and Social Care Act (2012), the one that officially made the NHS no more. (You might have missed that too.) They decided, before the Nice report was published to take over responsibility for the research themselves. Now you might wonder about vested interests versus independence, you might wonder about standards of evidence. You might wonder at NHS England’s their lamentable budget and plan to save £22billion more in ‘efficiency’ savings despite the parlous state of NHS trusts’ finances. You might have predicted that the DoH would withold the NICE information under Freedom of Information. But nicely, NICE then decided it was in the public interest to release the information later, and you can see their reasoning here.

There are many examples of government tactics to avoid answering difficult questions; they’ve reached a level where debate is not happening because spin is automatic, it’s reported often without question in the right wing tabloids and broadsheets, misused statistics are stated as fact, significant evidence is buried in favour of cherry picking from often discredited research (the NHS Risk Register has still not been released).

One of the nastier methods involved the Prime Minister’s repeated use of his late son Ivan’s disability as a means of blocking debate on the NHS in parliament because this proved his love for the NHS. The Camerons must have been through hell, and nobody can argue that they didn’t do their very best by Ivan. They didn’t hide him, he was clearly deeply loved. Yet their experiences are always mitigated by wealth, by the ability to set up a converted basement at home to care for their son. Cameron used Ivan as emotional blackmail to get out of answering questions about his intentions for the NHS. The Camerons’ is also not an experience made more harrowing still by the bedroom tax and the government fighting a High Court decision arguing the bedroom tax discriminates against disabled people by challenging some of them in the Supreme Court.

The NHS is an now a collpasing omnishambles, to borrow an ill-fated phrase from an ill-fated leader; one created by government policy over the past fifteen or so years that introduced the internal market (those fundamental conflicts of value systems between the human and the financial again) although Labour at least invested money and our NHS ranked highly among health services in 2012. Since then, the coalition and Tory governments under Cameron have destroyed it. They haven’t asked us what we want, they’ve lied, been caught lying, continued to get away with lying to us and to each other. Many of the staff in the NHS have no idea what the Health and Social Care Act did – which is laid the foundations for privatisation while burying the bodies of pitfalls and costs beneath the foundations of their spin flyover. It’s time for the government to take responsibility and do the job we are paying it to do, while telling us exactly what that is.

Finally, I couldn’t resist adding this piece from Conservative Home in full. I’ll let it speak for itself. At least the author is honest.

The Government’s dispute with the doctors’ union continues to escalate, with junior doctors preparing to hold the first full walkout in the history of the NHS.Writing in the Daily Telegraph, James Kirkup gives the recalcitrant medics a warning from history. He warns that the BMA is repeating the mistakes of the National Union of Mineworkers, over-estimating the nation’s dependency on their members.

That Britain’s economy could survive without British coal was unthinkable, right up until it wasn’t. Kirkup argues that technological progress and competing models of provision mean that our monolithic state healthcare provider may soon find itself similarly outflanked.

But whilst that might be true, it is by no means certain that we have reached this point now. For all that Arthur Scargill’s attempt to topple Margaret Thatcher is the stuff of legend, it shouldn’t eclipse the fact that there were plenty of miners’ strikes before that final confrontation and the miners won most of them, enjoying public sympathy as they did so.

Jeremy Hunt could end up being a modern-day Margaret Thatcher, bringing truculent trades unionists to heel and unleashing modernity on one of the UK’s totemic industries. Or he could be Edward Heath.

As Simon Jenkins points out in today’s Daily Mail, public support for the NHS is currently bulletproof. This makes it incredibly hard to reform: in fact, the public health lobby have convinced many politicians that it is easier to reform the public than to make a serious attempt to reform public services.

“Cost to the NHS” is thus one of the main pillars of modern drives against smoking and obesity. But setting aside any liberal qualms we might have about that, it isn’t clear that this represents a viable long-term solution.

Anybody who the state ‘saves’ from a tobacco or food-related death will still die of something, and the NHS will pay for it. If that person is forced to live a long life then they will likely end up costing the NHS far more than they would had they died younger – the increasing ability for medical science to prolong our senescence is by far the greatest structural challenge the service faces.

Treating expenditure on smoking and obesity-related health problems as money that can be straight-up saved, without accounting for the inevitable transfer of the burden to other parts of the health budget, is therefore extremely disingenuous.

Assuming that we can’t force people do be so healthy that we can afford the NHS, we’re then still confronted with the need to reform it.

It may be that needless deaths caused by industrial action lead to a dramatic sea change in popular attitudes, but as it stands we’re a long way from a place where “wholesale reform via head-on confrontation” seems likely to work, even as a last resort.

Rather, Conservatives should have a long-term, strategic vision for healthcare reform which involves the piecemeal adoption of decentralisation, liberalisation and modernisation in doses the public will tolerate.

Obviously there are a huge number of things this could involve, and Party policymakers should canvass widely for proposals. But when it comes to tackling the outdated and overweening influence of militant unions in the NHS, here are two suggestions.

In his article, Kirkup mentions “the George Washington University study that estimates 85 per cent of a typical doctor’s work can be done perfectly well by a “physician’s assistant” with a fraction of the training or wages.”

If that is the case, perhaps one way to increase staff supplies in the service – without resorting tocontroversial over-dependence on foreign nurses – would be some form of ‘Territorial NHS’, or Health Service Reserve, modelled on its military counterpart.

Volunteers would receive pay, training, and legal rights to take time out of their ‘civilian’ life to work for so many weeks of the year in the NHS. This shouldn’t be impossible: the Armed Forces reserves already offer recruits the opportunity to train in a huge range of technical skills.

A larger, flexible pool of ‘physician’s assistants’ would reduce the NHS’s dependence on full-time professionals. This would not only ease immediate wage and staffing pressures, but make it easier for management to respond to future shifts in demand.

Like any nationalised industry, one of the major problems facing the health service is its need to predict future demand without the aid of psychics. The long training current staff require makes it impossible to rapidly adjust to unexpected demand (without importing labour, that is.)

A ready pool of capable staff, which can be topped up relatively quickly, could thus plug gaps as they arise and make it easier to do that with British personnel.

Given public affection for the NHS, and the esteem in which its staff are held, there’s no reason to think that recruitment would be impossible.

The other way the Government could clip the BMA’s wings would be to diminish their capacity for strike action.

One could approach this task in at least two ways. The blunt-force approach would be to declare doctors, at least, to be one of the essential professions – such as the police and the military – whose members are forbidden to strike. If the junior doctors keep up their current antics this may well become politically possible.

But another way would be to step up the decentralisation of the NHS and make hospital trusts legally-distinct employers.

At a stroke, this would bring the public sector into line with the private by making politically-motivated, industry-wide strikes impossible.

This is because, with sympathy strikes and secondary picketing illegal, trades unions can only call strikes over a specific grievance with an individual employer. In the private sector this has led to conciliatory, service-based unions.

But because all public sectors workers are ultimately employed by the Government, they have been spared the effects of this legislation.

Making hospital trusts independent would not only mean the end of the national strike, it would also yield other benefits. By employing staff on private sector terms such essential and sensible reforms as locally variable and performance-based pay, as well as rational, private-sector pensions, would be as irresistible as they have been in the private economy.

Faced with an incentive to innovate and reduce costs, some trusts may even start to innovate with things like the “production-line” surgical hospitals pioneered by Devi Shetty – channelling the savings into other areas.

It would also mean that in the event of a dispute at any trust, the Government would not be on one side of the table, under political pressure and with the easy out of simply paying up from taxation or borrowing.

One day, the BMA will have their 1984. But it would be complacent to assume that this is it, or that bloody-mindedness alone will bring it about. Conservative strategists owe it to themselves, and to the country, to lay the groundwork properly.

 

PS Henry here describes himself as ‘centre-right’.