Catch Up 2 Hope

This post is jumbled and filled with typos and errors, but it’s the best I can do today.

“Shard by shard we are released from the tyranny of so-called time. A curtain of purple wisteria partially conceals the entrance to a familiar garden… in a wink, a lifetime, we pass through the infinite moments of a silent overture”. Patti Smith

Wednesday 8th June was my last IMRT – and better still – the last of the Temozolomide till the next round of six months. It’s a red letter day, yet it’s not over by far, since the effects of the brain frying and the toxic chemicals, and the medications I take to mitigate the effects, continue to worm their way through my consciousness and my physical body. On the way home I was assailed by a series of weird food cravings, starting with a tomato ketchup and sausage sandwich. I was vegetarian for many years, and now eat fish from time to time, but no other meat. I’ve never subscribed to the eating of things that pretend to be meat; yet I found myself buying a box of Linda McCartney sausages on the way home – and relishing the sandwich to the extent that I managed to stay awake to cook it and eat it. I also wanted chocolate. Luckily hr craving stopped short of quorn sausage which is the sort of thing you might expect the devil to poo out having hurled sn old triathlete off the Dewerstone, nicked his soul and snacked on his his scarred Achilles tendons.

To backtrack a little to the past 2- weeks; I’d been doing okay, I thought, but I had begun to feel my body trying to force the poisons out, a physical struggle, and one that feels like the battle I’m trying to avoid. Of course it’s also a mental one. The periods of sudden exhaustion have increased in both frequency and magnitude, and often begin as I wake, so I feel as though I’m going to bed after a 12 hour hike on the moors in the morning. The tank is empty if I try to walk anywhere; I can’t be bothered to move, and my eyes see passively from behind a fug. The effort of keeping eyelids raised is huge. I alternate between floaty dreamstate and trapped in sweaty clothes and sticky mud beneath a thundery sky. On the bank holiday weekend a friend arrived from London, and we went for lunch at the Elephant’s Nest, followed by a short walk to one of my favourite pools on the Tavy. I dunked, swam a couple of strokes and got out; It felt lovely, but my body didn’t. I’d been having intermittent diarrhoea for days, and there was a lump of something in my stomach and intestines, pushing against the lurking yeuch feeling.

I felt dreadful by dinner time, and took both cyclizine and ondansetron, so that I could eat. I didn’t want food, but knew if I didn’t have any I’d feel worse. Later, lying in bed, I had another bout of  colic, like a python digesting  a piglet in my guts; then the diarrhoea  worsened around midnight. I began to feel that I might actually vomit.

So I called the oncology number, but had to hang up to vomit. By then I had water pouring from my bottom. I tried to sip water, and another cyclizine.

It was now about 4am, and the nurse told me I’d have to come in, either now or for 8am. I decided to wait and see if it calmed down.

Call straight back if you keep vomiting, or if you get a fever, he said.

Within five minutes I’d vomited twice more, and the diarrhoea continued, so I called back and arranged to go straight in, woke Mum and scrabbled to get some bits together. We set off at 5 and just about made it to Derriford, though I did think I’d have to go into the bushes on Roborough Down. Walking in at level 6, the stink of Warren’s pies came close to finishing me off. It’s really not a smell you want in the entrance to a hospital, though at least for once it didn’t smell like a pub pre smoking ban with all the smokers standing on heaps of butts in a pall of smoke by the hopeful This a smoke free site signs.

I arrived on Brent Ward, to find no cubicle available so I was on one of the bays. I was so dehydrated it took several goesand half n hour  to get a cannula in. They gave fluids and ondansetron, but I continued to vomit and to pass water from my bum till late morning. I felt so dreadful by then I didn’t know what to do with myself. I kept asking for ondansetron, but I’d had it already ( the surgery vomit phobia, only vomiting is a relief here. My  temperature was normal to start with, then it spiked at around midday, by which time the vomiting had stopped, though I still had diarrhoea. After six hours, it began to drop again, much to my relief. I’d had bloods and cultures taken to see if there was an infection; of course the chemotherapy knocks out the immune system. I’d been told last week that my blood counts were excellent, but later discovered that they actually hadn’t been.

So I spent from 5am on Sunday till lunchtime on Tuesday on the ward, recovering and rehydrating. Everyone on the ward is a cancer patient, and some are extremely unwell. We talked about all sorts of things, including DNR. It was interesting that often the families of the people who were happy to have DNR on their notes, seemed to consider that giving up on life, and to consider CPR a genuine option for a person with terminal cancer – which of course it’s not. CPR only works if you have a body with intact organs and system, and the reason your heart’s stopped is reversible. Cancer isn’t.. It won’t make you healthy again, it won’t give you a life back. Without going into detail, many patients seem willing to discuss DNR and to opt for that, yet, the same doesn’t necessarily seem to extend to apply to gruelling treatment that won’t cure them, and that they’re clearly not coping with. I wonder to what extent people can and do question this treatment? I’ve met several people over the past six weeks whose stories I find deeply troubling and I wonder what they are trying to gain and at what cost.  There are recommended treatments under the guidelines, but where you are terminally ill, and perhaps elderly and frail already,, and the treatment affects you so profoundly that you’re unable to care for yourself, I have to question the purpose.

It’s something I want to develop in depth in another blog post, but for now I’ll say that having spent that time reacting to the effects of my own treatment, which has a good chance of benefiting me, I’ve reconsidered the purpose of my continuing with Temozolomide for six months after my month off, that starts at the end of next week. I get a higher dose of the Temozolomide, over four-day periods, followed by 24 days off. I’ve read around and discovered that most people seem to feel unwell for 2-3 weeks each month. I’ve got all of my planned radiotherapy in, and I took the temozolomide on Wednesday, Thursday and Friday last week, after which I immediately got diarrhoea and gut cramps, increased nausea and the lump in my guts. I’ve added loperamide and buscopan to the list of other medications to mitigate the effects of other medications. I get confused about what I’ve taken, and when.  Each medication has an effect. And of course I’m still taking the steroids to mitigate the effects of the current treatment and the myopathy has returned now, so I’m weak and wobbly on top. I don’t want to feel like this till December.  I do feel poisoned, which I am. Is Cheshire cat Hunt being poisoned too? I can only hope.

This weekend,(4 June)  I went to take my Temozolomide at the usual time mid-morning, and I couldn’t physically make myself take it. There’s a mental element there, yes. But I felt a visceral recoil at the thought. So I haven’t taken it. I’ve reached a level of fatigue where I feel that time has stopped.

I’ve been reading widely on death and dying. Onebook  was sent by a friend who was worried I’d be appalled she’d sent it, but I’m so glad she did – thank you E.  The Violet Hour by Katie Roiphe talks about the deaths of writers including Dylan Thomas, John Updike, and Susan Sontag. I’ve mentioned Sontag before, because she wrote two extended essays; Illness as Metaphor and AIDS and Its Metaphors which challenge the battle terminology associated with illnesses, most especially cancer. She talks too about the romanticism of TB in the 19th and early 20th centuries, its association with creative people, the glamour of it. Cancer is different, it’s an evil to be cut out and fought. To not fight it is to fail. There are other diseases and illnesses that are more life-limiting, more nasty than many cancers (heart failure being one) yet they don’t bear the same weight of terror, nor do they assume that the patient must battle, go to war, or that dying is a personal failure.

Sontag had three different cancers over her lifetime, the final being leukaemia, and she approached each by researching and taking all the treatments she could, ever the academic looking for facts and evidence, questioning. Yet in the end, when it was evident that the cancer was going to kill her, she refused to believe she could die – her faith in herself as an exceptional person – which she undoubtedly was – meant she believed that she would live despite the weight of the evidence to the contrary. She continued the most debilitating and horrible treatment right to the end, and died in hospital still believing she wouldn’t die, refusing to go home so that she could continue with the treatmen, anf hing  lst-ditch bone marrow trqnwsplant, t. I found it deeply upsetting and moving. Such an incredible mind, a mind that dissected the way we approach disease, yet Sontag was unable to accept and deal with the inevitability of her own death. In the end, death sneaked up and took her anyway.

In the past couple of days, Noel Edmonds has been tweeting about the Intelligent Wellness box (an oxymoron if ever I heard one) that “slows aging, reduces pain, lifts depression and stress and tackles cancer. Yep tackles cancer”.

In response to a tweet from a man with cancer challenging these claims, Edmonds tweeted “Scientific fact – disease is caused by negative energy. Is it possible your ill health is caused by your negative attitude? #explore”

I did ask him about the effects of his hair dye, which is carcinogenic, but I guess he feels safe to channel his 80s David Van Day look while attached to his special box, and being endlessly positive while asking the universe for eternal  life. Interestingly, Edmond’s daughter was at one point a director of the company that markets these boxes. There’s another mem  circulating on Facebook under #noexcuses! Shows a young, fit man doing acrobatics including handstands while strapped in to his wheelchair. No excuses for failing to do this if you happen to use a wheelchair? I couldn’t bloody do it now, though there are times in my life when I could have. This pressure, this assumption that everything is achievable through the power of positive thought really is a tyranny and I’ve taken to challenging it head on. It’s a hybrid of that hippy vibe when it meets neoliberalist dogma and business speak. Blue sky thinking, moving forward, positive thought, we can make more money, we can live forever. I want it bad, I’ll get it. Yet it’s nasty and judgemental, and about as far from positive in its effects on people like me as you can get.  Even the great, brilliant Susan Sontag succumbed to a  form of this notion.

I spent several years researching film and televisual representations of disability as a post-grad student, and developed and ran an undergraduate module called ‘Crippling Images: Representations of Disability in Film and Television.’ There are many key thinkers in disability studies and sociology who have challenged these narratives and expectations, the key one being the overcoming or medical model of disability. This expects people who have disabilities to overcome them, and to achieve some level of ‘normality’ through effort and medical interventions.  Tanni Grey-Thompson gives a good example of this in her autobiography when she explains how as a child she was fitted with uncomfortable calipers to help her walk – they gave her blisters. As she says, a wheelchair would have been a better and easier option.

This kind of narrative  is regularly  seen in the form of the Supercrip stereotype – a heroic character often played (by a non-disabled actor)  in an Oscar-winning role in Hollywood.

The Social Model of Disability challenges the overcoming/medical model, and argues it’s society that disables people through its refusal to accommodate them; so access to buildings is one key example. There’s a town in Canada where many of the poplulation is deaf, because it’s a geographically isolated community and there is a genetic link. There, being deaf is not a disability and deaf people are fully represented in all areas of life and community, because everyone signs.

When you continue these lines of thought into illness, which might cause temporary or permanent disabilities, I’d argue that it’s social attitudes that affect those of us with illnesses more than the illness or the treatment itself. My battles with the DWP and their fit note culture, the nasty PIP scheme and the cuts to benefits have fed into the blame game to the point where disabled people are being attacked on the streets as ‘scroungers’, and all because a load of greedy bankers gambled and crashed the global economy. Noel Edmonds and co clearly consider themselves to be humanitarians, yet they’re on a par with Iain Duncan Smith as I see it. Different sides of the same coin.

So in my contemplation of the point of my treatment, and of what’s important to me, I’ve moved another step on from the palliative care arguments. The lastest  book I’m enthralled by is written by a man who’s worked in palliative care for decades, called Stephen Jenkinson. Die Wise was recommended to me by a swimmer and writer who also writes up memories for people in hospices. Her name is Tanya Shadrick, and her work is fascinating. There’s a link to her blog here.

Jenkinson goes much further than Atul Gawande, in that he thinks we approach death in the wrong way, by putting all our energies into trying not to die. He points out that it’s impossible to use the verb to die in a passive form, because dying is an act – it’s not something that is done to you, it’s something you must do. Palliating through sedation and so on actually hinders and delays death, and terms such as ‘managing death’, and ‘end of life’ he finds extremely problematic.

He also talks about the dogma that comes from using a mental health approach to palliative care, which assumes that terminally ill people will be going through the processes of adjustment and so on from a mental health perspective; it’s that familiar five stages approach of denial, anger, bargaining, depression, acceptance we all know, the very one my own reaction to my terminal illness has steadfastly refused to follow. It’s something I’ve been pondering, largely from the perspective that I should be following it, albeit not in the right order. To be fair these stages andt heir interpretion in the wider culture have been critiqued by Kubler Ross herself, but Jenkinson, questions the founding assumption that death is a traumatic event. Kubler-Ross based this on her work with people who had escaped a nightclub fire in which many people died. This escape, as Jenkinson explains, is not an escape from death itself, since these people were not dying. So a traumatic event, from which PTSD might well follow, has been taken as directly comparable to dying which it is not. It’s a complex and detailed argument that I can’t do justice to here and certainly not with a woolly irradiated brain, but the reason death is traumatic for us is because our culture is death-phobic, and age-phobic. So we avoid death, we avoid dying, rather than accepting and doing it, says Jenkinson. Key to this myth is the idea of hope as being essential, or even advisable. Indeed, Gawande says “Hope is not a plan”.

Think about that in the context of this endless positivity and overcoming illness and disability that puts so much pressure on people like me   As Jenkinson points out, it doesn’t matter how much broccoli you eat, you’re still going to die. Is it positive thought that encourages  cancer patients to prolong their deaths at great personal cost for the grail of not dying for a few more days or weeks or months? Is it that the opting out is too difficult for them, because it represents giving up. Losing, personal failure? So many things feed into this. Positive thought, vibes, prayers, do comfort and support some people. I, as an atheist  humanist,have  felt the love from prayers sent on my behalf, and I know people for whom it’s a genuine boost to feel that others are with them. Maybe it’s about feeling loved and dissipating some of that loneliness we feel when facing death/ As always it’s nuanced. And it’s magical thinking.

Gawande points out that doctors need to feel competent – that’s associated with ‘have I missed something, was there anything else I could have done’ mentality. So this too effects what is offered in the way of hope and treatment. Further to this, Jenkinson explains a study that shows the more well a doctor gets to know her or his patient, the more optimistic becomes any prognosis they give. Again it’s complicated, but certainly has an effect on advice about continuing treatment past the point where it’s effective.


When I asked by oncologist about the six month Temozolomide treatment, knowing that I didn’t have the methylating tumour against which the drug is effective, She told me

There is some benefit.

I left it at that, intending to look more deeply into it. It’s officially recommended treatment, and I’d been told that’s what I’d get from the start when the neurosurgeon confirmed that my tumour was a GBM4.  I’ve read some research questioning the validity of this approach, and arguing that Temozolomide shouldn’t be administered routinely after the six week’s initial treatment adjuvant to radiotherapy (there is a sound evidence base for that). However, there are also some people with apparently non-methylating tumours who respond really well to Temozolomide. One theory is that becaue GBM4s are heterogenous (contain different types of cells) parts of the tumour might be methylating and parts not.

Having read a range of discussions on Macmillan forums, people expect treatment. They will try other drugs that aren’t licenced, and pay for them. They say things like

I feel they’re giving up on my (son/husband/Mum) as they reach the end stage where the tumour is growing and the person becomes sicker and more distressed. They want action, drugs, more life. They want a miracle. They also say I’m not ready to let him/her go.

Gawande’s questions are vital here.

What’s important to you?

Now the benefit I found for the six months’ Temozolomide for a person like me (and remember this is all a numbers game, it’s about a spread. Some get nothing, the odd statistical outrider (the long tail as it’s called) might get lots more; a few will  get a few days or weeks of life, or maybe not. There are other variables of course, including age and surgical outcome. So it’s a gamble. Bottom line; with my tumour, the vast majority of us, including myself, will die sooner rather than later. So is it right to keep trying everything, to keep fighting. To be in oppositional fight mode at all? One woman told me of her response to finding her cancer had returned in another part of her body, over a decade after she’d been given a prognosis of a year, ‘get your boxing gloves on’. The treatment was making her very unwell. I wondered at its point.

I’d question also the notion of a few weeks of life being of benefit should you get it. Sometimes you see ‘symptom-free life’ mentioned. But life-length is the primary marker. That life is added to the end of life. The end of life with a GBM4 ain’t pretty, it ain’t nice. It ain’t sitting around chatting and laughing with friends and family. So as Stephen Jenkinson says, this is about avoiding dying, not about living. So the putative benefits of my six month’s temozolomide include the hope – the hope – of another few weeks of not dying, of avoiding death, when I’m going to be dying, I’m going to be disabled, and unwell.

Then there’s that miracle thing. Another frequent comment on forums involves the miracles do happen, and that there’s always hope. Well, no they don’t and no there isn’t. For every miracle there are 99 people who just died. Why would god care? if she does why let it happen in the first place? And what gives us the right to test all these drugs on animals?

At the moment, I have as far as I know, no signs of Hunt in my brain. I’ll have that confirmed or otherwise in three months when I get my post-treatment scan.

I feel dreadful, I’ve forgotten what it’s like to wake up feeling well, to be able to get up and get on with my day, and plan things, and know I’ll have the energy to do them; or even remember that I’d planned to do them at all!

Once this treatment is over, and I can tail off the steroids, I’ll feel well. I’ve been through the surgery, the meds, the treatment, all to get rid of Hunt and to stun the remaining cells in the hope he takes his time to return – that hope again. But return he will, and he will kill me; I know that. And when he returns, the treatment options will be very limited because my brain won’t cope with more radiotherapy, and there are limited options for chemotherapy because few drugs cross the blood brain barrier.

So do I take my time now and live, write, swim, spend time with people I love, or do I ruin it in order to prolong my death which is inevitable and which will probably happen in the next year or two?

Do I give the Temozolomide at the higher dose a go for a month?

I have a month to consider. I think I’ve already made up my mind.

When I returned from hospital, I sat on my bean bag on the edge of tears,  deeply tired. I thought about the other women I’d been close to for the past three days, and about their decisions, their struggles, their treatments. For one of them I knew the answer to the question What’s most important to you?  It’s unusual because it’s a single event, on a definite date. I hope she gets there, I hope she prolongs her dying to reach it, and that she is stable enough to get the treatment she needs to give her the energy to go. I can understand that.

For me though, time is now.

Talking about time is interesting too. I like the thought that it’s ripples from our lives that continue in memory and in the past, and which return upstream in eddies, to the future. Time is not linear. Past, present, future. The effects of those ripples and eddies are eternal. While a life is finite, its ripples continue. The quote above from Patti Smith I think is wonderful. She’s another person whose losses have informed her thinking and writing and art.

Today is Monday 6 Jume. It’s the third last treatment day. I swallow the Temozolomide, the four, different sized capsules liberated from their sachets (do not touch!) As always, they lodge somewhere around the oesophageal sphincter, don’t quite enter my stomach. I swallow more water, push them down. I feel them. My throat dessicates, the chemical taste begins to leech through the membranes that line my mouth and pharynx.

I’m wishing the time away, the time till Thursday when I won’t have to swallow any more poison.

I won’t have to lie, trapped by my head, while the linear accelerator zaps my brain.

I asked the radiographer whether anyone feels the zap, whether it’s possible to feel it. I didn’t on the first occasion, but latterly I have.

As always, it’s that fascinating intersection between the physiological effects, and the work of the brain in interpreting sensory stimuli. I feel the rays, which have taken a form based on the position of the head of the linear accelerator as it tilts and moves over my head, the green cross-hairs visible at times as it passed over. Then there’s the sound it makes. It’s a high-pitched sound, like the buzz of a hornet, and so it contains a vibration. It’s easy to see it, to sense it, to feel it.

I know that the brain itself doesn’t feel pain, it interprets pain. My scalp does feel pain, and it’s burned, hot, sore. The feeling of sun on sunburn. My troll ear is sore.  Pain is a subjective entity. In the NHS we use a pain score to assess pain, and managing it is a key part of our role. Dealing effectively with pain has an impact both psychologically and on clinical outcomes in terms of recovery time and completeness of recovery. The contrasts between patients and their reactions to pain can be stunning. The elderly woman, barely able to breathe from the pain, pinched, frozen face. What’s the score out of 10 if 10 is the worst pain you could ever imagine?

Oh, 2. She’s the type who my Mum would say would have her leg off with a shot of whisky.

Or the 12 year old at a school  fair who’s ‘fallen’ onto a mattress from a pine pole three feet above it, by dropping from hanging beneath it flat onto his back – a total drop of about one foot. He’s still sobbing as the teachers and his mum fuss over him. I’ve driven 25 miles through country lanes to get here. He manages to tell me through sobs and wails that pain in his back is 10/10. There’s no history to suggest I shoulsd worry and no mechanism. I get him to stand up and walk around, tell him I can’t assess him if he doesn’t speak clearly. He stops crying. I feel his back. He tries hard to pretend it’s painful, but picks up that I’m not playing the game. The group of adults surrounding him is looking daggers at me.

I’m bloody livid they’ve even called me, and even more angry that they’ve managed to bullshit to the point where our clinical supervisor in control was unable to triage the call out thanks to their exaggeration and misinformation. So I’ve been sent, just to check him over because you can’t be too careful. Afterwards I tell them what I think. I also point out that if they want there to be a problem, the kid’s emotional reaction and pain response is a direct result of their own over-reaction and refusal to take responsibility for something that I wouldn’t even class as a mishap. In future, his reaction is going to be magnified, as is his propensity to attention-seeking behaviour. They have the grace to look sheepish, and not to make a complaint against me, which I was fully expecting, and almost hoping for. Perhaps my parting shot pointing out that me and my rapid response car are the only resource in this area, and that had a child been choking even 10 miles away they’d have died before I got there thanks to their actions had shocked them sufficiently.

So part of the response to pain and upset is learned too. The radiographer tells me that some people do say they feel the radiotherapy sometimes, on different parts of their bodies.

I’m about to leave for my penultimate IMRT. I’ve taken my penultimate Temozolomide of this cycle. I have diarrhoea and I feel the chemicals sitting there. Is it learned? I don’t know. But I don’t want any more of it.

I’ve got through something that was really troubling me, thanks to the kindness and professionalism of these radiographers, who have taken care to ask me how I am, to notice that I’m not my normal self on some days,  to help, to make suggestions, to ensure I see a doctor when they think I need it.  I’m going to miss them. I feels quite scary to be stopping now, after six weeks, like flying solo. They were quite concerned when I didn’t take the Temozolomide at the weekend, and did pass on to the registrar that I’d missed it. I declined their offer to see him, on the grounds that I’d already done it, and that I had the meds I need to mitigate the effects, and was prepared to tolerate it all for the last three IMRT sessions. It threw them I think, and of course they have a responsibility to ensure I’m okay and that the doctor is in on the picture.

I’ve been warned that the effects of the IMRT might well worsen for 3 weeks before they improve. I can second that, and my friend A who’s just ahead of me has experienced  exactly the same crash at the same time. I’m fatigued, shattered, somnolent. Brief flashes of semi-alertness happen randomly, but mostly I’m asleep or wishing I were. I read before bed, and when I wake up in the morning, for maybe 15 minutes, but I find it hard to remember what I’ve just read.

Every so often I get a couple of hours where I feel okay.  I’ve written this post over several days, in tiny chunks, and it’s probably rather random, but I felt it important to try to get it out regardless.

PS 18 June.

I’ve been wiped out over the past ten days. I’ve been sleeping 6- 8 hours during the dqy, bqrely able to function. Unable to get out of bed. A perpetual 0445 on night shift number five feeling.

IF I go out, I totter. I notice my proprioception is going on the left again, and I’m unstable. I ttter over into a bush while hanging a tshirt on the line. Things are sliding off plates, drinks are spilling. I can’t disentangle myself from the seatbelt etting out of the

car. I can’t type now because my left hand is doing its own thing. I’m dropping things, but not realising I’ve dropped them. People in the shop offered to help me put things into my bag.

I rang the radiographer on Thursday and she tells me I’m in peak effect time,  which is 7-10 days during which the IMRT continues to build. She calls me back having spoken to Dr Sarah.  I’m to take double dexamethasone fri, sat, sun and call on Monday to say how I’m doing.

So that’s where I’m at.  I feel upset at having to up the steroids, and at the inevitability of worsening myopathy when I can barely climb the stairs. Because it’s come at a time which felt like a real milestone in my treatment, the end of  marathon, it’s been a double whammy. But I know I need to do it. I have some important things to do in July, and I’m working on getting there with some energy.

I was devastated too by the murder of Jo Cox, not only on a human level but because she was a person who gave me hope for politics in this country, a woman and a humnitarian politician of inellect, experience, morality  and strong principles. I only knew of her from her work on Syria and on the refugee crisis.

I can’t deal emotionally with politics at the moment. I weep for Jo Cox, her family and friends, and for all of us that we’ve lost her. I’v lost hope in the wider sense for the futures of all of us,