The last supper

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I had an amazing weekend, during which I waded in the Dart up to my waist. I felt the burn of cold water, but didn’t feel able to dunk my shoulders, although I came close. It’s the breathing again, I think; how deeply it affects me. I went with L and K, a friend and a friend of a friend visiting from up north, and then they took me to Kari’s son’s house where we stayed, wallowed in the wood fired hot tub, chatted about all sorts, ate a lovely Indian takeaway brought by Kari, and hung out. I found another convert to Atul Gawande in K who is a hospital consultant – it’s changed the way she works. It’s so interesting to feel the power of these ideas, and the ways in which they affect the perspectives of individuals both personally and professionally.

I’ve been receiving daily emails of the Brain Tumour Digest (the joys of becoming a brain tumour patient…) from Macmillan. This is a link to recent posts on the Brain Tumour forums, in which patients, and often, relatives, post experiences and questions. It’s not a representative group, of course, and mostly I’ve been watching the GBM4 groups. It’s not curable, it’s highly aggressive, treatment is difficult and often insufficiently evidenced: but the language very often follows a lexicon where the metaphors involve fighting; not giving up; finding and paying for chemotherapy drugs that aren’t funded; a battle to halt the inevitable decline and death. The stories are often horrible and the posters are deeply upset. I haven’t posted anything, I can’t. How do you deal with so much terror, so much grief, and so much desperation? The fight for what, a miracle cure when the tumour isn’t curable? We need a new narrative, one of accepting and finding out what matters most to the individual – that fundamental question that Atul Gawande asks.

Another regular question involves the ketogenic diet, (note that this is an explanatory link, it’s not necessarily an authoritative) where there is some interesting research regarding the ways in which certain tumours metabolise and the fuel they use. This is behind the prevalent cancer loves sugar meme.  However, there’s very little evidence, and there are several clinical trials ongoing in order to see where and how the diet might help. If the diet is helpful, it will depend very much on the individual, the precise type of tumour and a whole host of other variables. It also involves a very restrictive diet and in the case of GBM a small gain in length of life; as someone who loves food, and who is mostly veggie (with the odd fish) I don’t consider this diet worth it. Food is more important to me than gaining a couple of months, if that works in my case and that’s a gamble. There’s a link here debunking some of the myths, again I can’t vouch for its robustness but it will give you some idea of the debates and an alternative view.

This is the case for the majority of treatments, which are now tailored to genes and types of cancers, and is the reason why there’s no point in fighting to receive an expensive drug that won’t work in your specific situation. Sadly there are too many charlatans out there who cite ‘evidence’ that really doesn’t exist, and who make claims for ‘cures’ of cancers which are simply not curable. You might reach a stage of no evidence of disease (NED), but the cancer is still there. Milking desperate people of course is also a market (including Big Pharma and the massive expense of such drugs for what’s often a tiny delay in death at the very end of a life when you are dying and unwell). It’s all too easy to go with the charlatans who suggest you put coffee up your rectum, or to look to the US where medical centers operate and treat people at vast expense, all too often with little in the way of published results and thus evidence for their claims either. It’s based on your ability to pay, and their ability to sell to you. Being Mortal highlights this issue.

So, what is most important to you? If you’re currently well it’s a question worth asking yourself, discussing with your family and friends. If you’re unwell, it’s an essential question. Do you want a prolonged and frantic death, where you take drugs that have horrible side-effects till you die, holding out for as long as possible? Or is it trying what you can that has a decent chance of working for you to give you some quality of life till you know it’s the end of the line? Once you accept death is coming, make it comfortable, manage the process? Let go.

Onset Verification and Dummy Run

Today is the day of the dummy run, when I’ll see how my mind has decided to behave with the actual radiotherapy machine. I’m to be screwed down in the mask while the radiology staff take and set final measurements based on my scans from the other week. I begin the day by sewing through my left index finger with a jeans needle while attempting to install a big zip in some soft furnishings for my brother’s van. The loss of manual dexterity didn’t help. Luckily the needle broke and the zipper foot bent so there’s no actual stitching, and it missed the bone. I let it bleed, then did some first aid with micropore to stop the bleeding. Hopefully, I won’t get an infection.

We pass the junior doctors’ picket line outside the hospital, and I wave and give them the thumbs up. They cheer.

I have a review with a radiographer first, in which we discuss the chemotherapy and radiotherapy, go over the side effects again, and confirm consent for both. I’m given a long list of dates and times for my treatments, including 2.30 tomorrow when I’ll be given my week’s supply of Temozolomide and other medications, before having the first radiotherapy treatment.

In the radiographer’s file are some colour prints of my brain which show the area to be irradiated in yellowy-greens and blues. These are as always a mirror image, and show transverse slices through the brain from, I think,  top to bottom. I’m astonished at the size of it, which in the centre slice crosses the centre line of my brain. I think perhaps it relates to the area of oedema from the original MRI scan. The radiographer says it’s based on various things, including the recent CT in which they imaged the blood supply. I can’t really get the answer I want, which has to do with something I read about oedema as a sign that the blood brain barrier has been compromised. I wonder about the vascularisation of that area, and whether the tumour cells are calling up the reserves. I think about my increasingly focal left-sided headache, and the onset of periods of nausea over the past three days. I am now on 2mg of Dexamethasone only though, and both might be related to that. The radiographer says to keep taking that, and that it’s likely the dose will increase with the radiotherapy.

I’ve also been conversing with a friend of a friend who is a few days ahead of me with treatment for the same type of tumour. He struggled with his mask, and the staff where he’s being treated have cut eye holes in the mask which has helped him no end. I’m glad to have that information. He feels okay after two days’ worth which is also good to know.

Walking through to machine, there are several smiling and friendly staff who set me up on the slab with the various pieces of kit in place. I shuffle up and down and am tweaked into position from all directions.  At this point one of them lowers the mask over my face and clicks it into place. Above me there’s a circular machine (the one that produces the rays), and behind it a very clean and bright white tiled ceiling, and some illuminated photos of autumn leaves against a bright blue sky. I love the colours; oranges and blues jumping out. I can’t focus enough through the plastic blur and my slightly dicky vision to see what type of trees they are. Maybe sycamore? There’s some more fiddling, marking, a green crosshair above me on the machine. It’s to the left, while I want it to be in the centre. Of course that’d be no good since it would miss Hunt altogether. There’s some more space around my cheeks, as the dex swelling has reduced massively over the past few days. I feel comfortable, and relaxed. I start to worry my head might move, but it’s well and truly trapped over the forehead.

The staff all leave, telling me to raise my hand if I need them. I get Blondie’s Maria quite loud which I rather like. The machine resembles a flying saucer but is on an arm. The slab with me on it rises up to meet the machine as it moves into position above my head, with a background whirring sound like the hum of a distant dishwasher. It reminds me of the Southpark episode with the anal probe. I must find out what it’s called, this machine. A rectangular piece approaches the side of my head from the left. I see the sky above. I’m totally relaxed, there’s no enclosure and no darkness, and I have a little more space over my face. I feel the pulsing of my heart in my face but it doesn’t reach my head as it did before. I’m going to be fine.

The whole session takes around 25 minutes, and the staff tell me the actual treatment doesn’t take long – just a few minutes, plus the setting up. I can manage. We also discuss hair loss. I should have a band across the right parietal area, and a reciprocal band on the other side where the radiation exits. The chemotherapy shouldn’t affect my hair. I can have an appointment to be fitted for a wig, but I decline at this stage, mainly because as a hot person I find the thought of a wig unbearable. I can of course change my mind.

Next is a blood test; I’m fine with that too, despite the veins having vanished in my right arm which meant a second go. It helped to have a chatty and funny phlebotomist. I told her about my diagnosis and we discussed doing fun things while you have the chance.

I feel such relief. Tomorrow is the day the treatment starts.

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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.

 

Negative positivity

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

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

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

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

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

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

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

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

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

Addenda

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

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

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

 

Help and Operation Hunt Saboteur

One of the most important pieces of advice I was given just two days after diagnosis came from my Macmillan supporter, who suggested I should ask for and accept practical help. It’s grown in a way I never envisaged, through my IT guru – who comes with a leg-shaving guru – to lifts for dog walks, to people dealing with admin concerns that I can’t get my head around.

These acts of friendship and kindness, together with visits and messages and calls and thoughtful gifts, have done more than anything to keep me going through a hideous time of fear and general shite, worsened by feeling fairly horrid most of the time. Little things to look forward to allow me to make it through to the evening, then the night. I also have a swimmy patchwork blanket under construction which I think will be visible from space (more on that another time).

Money, however, was has been an overarching concern. One friend has already helped me more than I can say with a loan, topped up without asking the other day. Then I had a call from Plum saying that various people had contacted her about helping me out in a practical way by donating money to a fund. I felt I’d begged especially because I’ve blogged about it, and refused. Plum being a formidable opponent in a debate on almost any topic (Burgh Island Hotel too expensive? You’re doing me a favour, been wanting to go for 20 years and never had an excuse), talked me round to her way of thinking, which is that people want to give me money and it makes them feel better too; it’s something I’ve done myself, and till recently when I could no longer afford it, I’ve always given a monthly sum to several charities. I know that makes me feel good, and feel that where I can’t do much personally about a situation there’s someone out there who can and they need that money. Then there’s the thought that maybe you could do something, but by handing the money over you don’t need to bother, it calms your conscience. There’s also something about accepting financial help from people you know, (and in this case some people you don’t) based on an illness with all that potential for emotional blackmail, that I find extremely problematic. My decision to blog, warts and all, felt like a part of that impetus.

Eventually, Plum made the point that if I didn’t agree to the fund, cheques were going to start arriving through the post so I might as well give in, let people help me, and make all of us feel better. I capitulated, with the stipulation that if everything by some miracle turns out to be okay, I will return what I can and give the rest to Macmillan.The fund was set up, and it produced an overwhelming response of donations and lovely messages that I could barely deal with. I couldn’t answer the phone to Plum because I couldn’t speak. Not everyone has money to spare, and I worry about them feeling pressure, and I’m sure some people have gone without on my behalf. But the relief of knowing I can cover the bills and not worry about cashflow for a considerable time is impossible to exaggerate, even for me… So thank you for removing that deep worry, and thank you for the big and little acts of friendship which play a vital role in my ability to swim on through the tons of nasty plastic in the sea.

Poverty is on my mind in other ways, not least because I know I have people who can help me, while, many in my situation have neither the resources nor the emotional support. I read some fascinating research on the effects of a severe scarcity of a resource, whether that’s food or money, on decision making. I won’t go into detail here now, but do read the linked article. It’s the reason I bought a bottle of wine on the day in December when I’d just lost a whole load of online marking and any hope of paying the bills. And it’s the reason for giant tvs, pay day loans and fags when you’re out of work. Note too that there’s a government group studying this – so why the hell is the government ignoring their own research?

Yesterday they forced through a cut of £30 per week to a particular form of Employment Support Allowance (ESA) that will affect disabled people directly. Apparently this cut will ‘incentivise’ disabled people to find work. The impact assessment has not been carried out, and the Lords were going to insist is was before reconsidering the legislation. The government used their financial veto to overrule the Lords. My own MP Geoffrey Cox, and Jeremy Hunt, were among those MPs who voted this through, as was Dr Sarah Wollaston, a Tory MP whom I had met in a professional capacity a couple of times in her work as a GP, and for whom I had a great deal of respect.

So, with no evidence whatsoever, the lifeline of financial support for a highly vulnerable group of people has been removed. I can tell you categorically that this nasty, ideologically based (I can’t help but see arbeit macht frei over the gates of Nazi concentration camps) persecution of members of our society will cost all of us in the end; it will cost the welfare of the individuals involved, and it will cost the ambulance service and often the police who go in to pick up the pieces, and the social services already in crisis because of six years of cuts, and the other NHS hospital services and GPs who are trying to manage the complex health conditions that arise, time and time again, because of poverty.

Poor people need help and support because poverty is the cause of their problems. Disabilty causes poverty – try getting a living wage job when you’re disabled (yes, I know there are exceptions, just as there are a few people in parliament who aren’t men). Poverty is not a sign of some inherent personal failure, some genetic or welfare state-induced predisposition to workshyness and fecklessness. Poverty is the cause of it. And to refuse to even assess the impact of such a cut is quite simply criminal.

My friends are wonderful and I truly believe that most people would behave decently if they were in a personal interaction with the focus of their hatred and disgust. Thank heavens I don’t have to rely on the government to support me.

Our regulars as paramedics are the people who suffer from long-term, chronic illnesses, and whose longevity is reduced accordingly by poverty. Some of them are chancers, but why are chancers who are wealthy accepted while those who are poor are not? You survive how you can.

I also received yesterday a letter from DWP, who have at least stopped referring to my need for a Fit Note, and who now want a long work-related assessment filling out to check whether or not I might be able to work at all. Now I have trouble writing at the moment. I can’t control a pen all that well. I don’t know what treatment I’m going to have, nor how it will affect me, till I’ve had the surgery so I can’t tell DWP what they want to know by next week, or my benefit might not be paid.

One more stress, while the government assumes I’m faking till I prove otherwise.

Clearly it’s a travesty that I’m asking taxpayers to support me in my time of need. And some of the taxes I’ve paid over the years have gone to clean MPs’ moats and redesign their duck houses, and pay their 11% payrise last year, and the 1% this year. The welfare state is insurance, insurance against the crappy hands that life deals some of us. Its value is not financial, its value is as a service that doesn’t hound people like me, or add to our already stratospheric levels of stress. If you don’t need it ever (and research shows that most of us get back more than we pay in to the NHS over a lifetime), then brilliant. You don’t expect to get your car insurance back if you’re lucky enough not to crash.

Do I happen to know all the nice, caring people? Are others really that horrible in real life, that they could look someone in the eye and believe that this person deserves to be persecuted and live in penury because a load of super-rich bankers got even more greedy and stole all our money? How have they managed to blame it on those of us who have the bad luck to have hit the bottom?

I wanted to write about a couple of families I knew but with Operation Hunt Saboteur imminent (Friday) I’ve had other commitments to deal with today. So this post is rather ranty, and less personal that I’d wished. I hope you can forgive that. It’s a day of random emotions and no little relief, but also one of anger at what’s being done to our NHS. It’s day one of the junior doctors’ strike. I’m with you, junior doctors.