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,

 

 

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Yeuch

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So to what’s now been named the yeuch. Not a feeling of being really unwell, but rather an intermittent feeling of maybe feeling a bit not right, that gently builds to something more; a lethargy and nausea. Sometimes verging on the almost-but-not-quite sick before subsiding like boiling milk as you whip it off the gas ring. My head aches on the right and down the right side of my neck again in that carapace point. I have a burning ear, and nerve pain along my right cheekbone; that was one of the things I’d noticed as Hunt grew in my head, it’s a branch of the trigeminal nerve, and I guess the pain has to do with pressure on it.

The yeuch has assumed a pattern now; I wake feeling more or less okay, then the headache builds with the nausea. I take my meds and have toast early, and that calms it down. Then after I have muesli later, it begins to build a bit, before easing. I take the Temozolomide and feel ok. By lunchtime, I’ll be ready for a meal, and I eat quite happily. Then at about 3.30 – 4, the yeuch returns with a vengeance. I feel I need some food with it, and nibbling an oatcake will help a bit for about ten minutes, but then it gets worse. Sipping water doesn’t help much either. I sip  Pukka Three Ginger Tea, and that’s helpful as long as I let it cool down first – hot is bad. I can’t eat till about 8pm, at which point the yeuch dissipates.

I saw Dr Sarah, my oncologist yesterday. My blood counts are good, and she’s arranged for the nebulised antibiotic for me probably in the next couple of weeks, because of my allergy to one of the constituents of Septrin which I should be taking.  We discussed the timing of the meds, which is fine. So Sarah is prescribing a different anti-emetic for me to take at night. It’s one of the antipsychotic drugs that, taken in small doses, have an effect on a range of the various vomiting receptors in the body and so also work as anti-emetics. They tend to cause drowsiness also, but at night that won’t matter. So I get that today, and will try it tonight.I’m hugely releived she didn’t suggest upping the steroids, although she has said there’s no chance of reducing them again for the duration which I knew.

I’ve been in touch with a man who’s literally 3 days ahead of me on his treatment for a GBM4, and who is the friend of a friend. I shall call him A; he’s happy for me to discuss what happened to him here in the hope that others can benefit from his experiences.  We’ve been comparing notes by email, and were both doing pretty well initially. It was especially helpful to chat to him over the mask stage since both of us had similar fears, and managed to get through; he was able to have eye holes cut from his mask which made all the difference for him. Thinking back, the claustrophobia for me was largely  a manifestation of all those deeper fears, the thought of having that radiation boring into my brain. The worry that it might miss the target.  The tumour, the chemicals, the feeling of swallowing poison when I try so hard to avoid it the rest of the time, alcohol and clotted cream excepted.

Both A and I were struck with the effects of the radiotherapy at the same stage of treatment last week.

The difference was that I took matters into my own hands and upped my dexamethasone dose over last weekend. The effects are as I understand, caused by swelling in the brain from the radiotherapy. The problem is, that there’s that fear there, a deep fear, that something’s growing back. The not knowing what’s in your brain. The knowledge that the alien exists in some form, whether that’s the remains of the original tumour, or the cancer cells blossoming around it. The wondering whether the radiotherapy is killing them, or has it missed some? Are they growing anyway? Then there’s the chemotherapy; the metallic poison that I can taste and feel like a hand around  my throat, like a victim in an Agatha Christie novel.

I’m a paramedic, I have enough knowledge to be able to consider the signs and symptoms and to work out what’s most likely to be going on. I have a professional understanding of pharmacology and pharmacokinetics, which is sufficient to be able to research drugs and understand how they work and what effects and side effects they might have. That certainly doesn’t make me an expert, but it gives me insight and some control.

There’s a big but though; I’m also a patient. I’ve already had a significant scare when my vision went blurred in the early days before surgery. It took me an hour to be clear-headed enough to work through some of the reasoning for differential diagnoses, and then a couple more days and a chat with the GP to get everything clear and to be happy. That was fear (exacerbated by being unable to see enough to read up on the problem). And of course I’m being subjective always, and with an emotional response.

Back to A; his neurological signs and symptoms from pre-surgery returned with a vengeance. He twice lost his speech for a period. He lost strength and sensation the limbs on one side. He was terrified. He took to resting as the only way to calm things. He told me how afraid he was, how afraid that this is how it will feel to move towards death. That’s my fear too, but I haven’t had the severity of A’s signs and symptoms. The knowledge that it’s your brain and your mind being destroyed by this cancer is a horrible one.

I asked A about his steroid dose and explained I’d upped mine. He didn’t respond to that part of my email, but talked more about feeling a bit better with more rest. I tried to reassure him that there are experts there who are able to manage the worst of our nightmares. I didn’t pursue the steroid question as I felt I was interfering, and I was sure it would have been addressed. Then yesterday, A more or less collapsed in the hospital and saw a consultant who immediately upped his steroid dose, which was low.  So somehow, A, who has no medical knowledge, had been suffering all these dreadful signs and symptoms caused by swelling in his brain from radiotherapy treatment, yet nothing had been done for him. I don’t know the precise circumstances. I do know that even if you’re literate and have all the leaflets and booklets, and you have the phone numbers to call, you don’t necessarily think or act in the way that those who’ve provided that information think you will. That’s because you, and those who are close to you, are terrified.

A was having treatment five days a week, and yet nobody chased up the problems he was having, most of which would have been obvious to anyone who’d seen him on a regular basis for a couple of weeks.  He didn’t know that the steroid dose could be raised. He didn’t understand what was happening to him. At Derriford, I hope that would never happen. My radiographers ask each time I see them how I am, and what problems I have. They refer to my oncologist. That’s how it should be. Some patients might of course not say what’s going on, through fear, or other problems, or not wanting to bother people (I once attended an elderly woman with a fractured neck of femur and fractured wrist who’d laid on the floor since 1am, before pressing her alarm at 8am, because she didn’t want to disturb either her neighbour who was her key holder, or the paramedics).

But you get to know your radiographers and I’ve come to look forward to our daily chats, and bits of banter. They are happy to show me things too when I ask, to explain the machines and the lining up. I watch them with other patients; one in particular clearly has significant neurological deficits and gets lost in the corridor. I see them come to find him, take his arm and chat. They’d notice if something unusual were going on.

I’m hoping to go on a longish walk and swim on Sunday, very slowly. I don’t know if it’ll be possible – everything hinges on the new anti-emetic. I’m two weeks in, a significant chunk. So an amble up the Dart would give me a huge extra boost. Here’s hoping.

 

 

 

The weekend effect

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

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

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

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

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

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

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

 

 

Days of whine and roses

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Here goes then; Andy Williams on the iPhone and an emotional emitus of sorts. I’m trying to be honest about how I feel, but sometimes it just isn’t going to work and I have to divert away because I don’t know how to control it, nor what to think, nor how to express my world at the moment. I’m not even sure where I am, other than it’s a liminal sort of place between the me that used to be, and the me that is very not as she used to be.

My world is here, in a house that’s not mine, with some of my things, and my parents and dog. I can’t drive,  or walk far. I’ve not had many physical visitors since Op Hunt Saboteur, and I’ve not felt engaged in any real sense with people other than occasionally; it’s like looking in through windows streaked with years of grime. I’ve been angry rather than sad, knowing it’s not going to be good news next week, yet not really knowing how bad it might be and how I’ll react if that’s the case. I’ve picked up on campaigning Facebook posts, something I really didn’t want to do, and become involved with people who are cross with me which I can’t deal with. It’s a struggle to type them, but I can see to read online far better than I can in a book. I’m so angry with the government I can’t really think, the scale of their perfidy in selling all our assets off. Fear at what they’ll do next, then the thought that actually why do I care? I doubt I’ll be here for the revolution.

Displacement of course, but then I’ve always been displaced by injustice. I’ve still heard nothing from Geoffrey Cox QC MP. But I have so many other administrative tasks to sort out, and I can’t get my head around them at all. One is my tax return, due now I think. Apparently I’ll get fined if it’s late, but it’s impossible to speak to them without hanging on the phone for literally hours which I can’t do either. The second is benefits because I’m afraid I’ll lose my £73.10 per week if I do Airbnb in an effort to keep my cottage although it’s only going to pay the bills, and maybe not always in full.  Then there’s the mortgage cock ups that I thought I’d managed to address with Nat West, who have admitted the repeated failure to take my DD was their fault, acknowledged that I wouldn’t have noticed what with everything else going on in my head, and paid me £50 compensation, before sending me a letter telling me that credit reference agencies will be informed of my late payments. I ended up crying.

Oh, and I have to complete my work assessment for the DWP by 6 April, which also involves knowing what treatment is next. And I have to tell them about Airbnb, which means I need another appointment with the Macmillan benefits advisor. So I woke up worrying this morning about that.

My world is the same every day. I wake at about 3am, I get a mug of ginger tea and oatcakes with some cheese. I fiddle around with my iPhone on twitter or Facebook. I blog or write about whatever’s in my head in a document that I might use parts of in another blog. I wait for the first light to creep beneath the blind, for the bird band to strike up. Then I get up and make tea and toast, take my steroids and other meds.

I have breakfast, Mum tries to chat and I’m grumpy because I hate mornings and want to be left alone. Then I try to be chatty for a bit. I go back to bed, doze or sleep for a couple of hours. I get up, take more steroids with more food, go out with Bun maybe; wander really slowly feeling the air abrasive in my chest, count my respiratory rate (higher than usual), wonder what the nodules on my lungs are.

I go back to bed in the afternoon if I can, sleep or doze, think a bit, Facebook and Twitter, mostly political. I get up for dinner, chat for a bit, go back to bed sometimes, sometimes just sit here and listen to music. Then I have a snack and go to bed at 11 ish till 3, and it all starts again. I am terminally bored.

My left side is noticeably weaker as of Friday, and my arm and leg start to feel hollow. By yesterday I had realised my left arm had no muscle tone at all, and my left knee started to buckle. I think often about what to do. Both hands had developed a mild tremor. I’d ended up having to clean my cottage with Mum, and although I did the light work I felt shattered. But it was developing before that. Prime suspect is the tailed dose of steroids; is the brain swelling returning? I feel unsafe on the stairs. I already know that dexamethasone can cause myopathy or muscle wastage quite quickly in some people, especially if they develop Cushingoid features which I most certainly have (Cushing’s syndrome of moon face and belly fat, rather than the more cadaverously dashing Peter Cushing). But I have been tailing off and on a low dose of 2mg twice a day for four days, so that’s less likely.

My left arm is noticeably smaller than the right, although I still have a pretty good bicep on the right. My left knee has swollen from the osteoarthritis and the muscles are not defined at all, though I can still see muscle on the right. My face is more numb than before (the inside of my cheeks and mouth have been that way for some time, but my rubbery mouth had improved with the steroids). I dribble water when drinking, twice. When I flex the right arm, the bicep feels strong. On the left, I can’t feel it at all. My left hand is also more numb.

I think it has to be some returning cerebral oedema. The limb deficits I have are left sided, apart from the weak and strange writing, so my left side is going to be more affected by weakness in any case. But the right side isn’t feeling much different as far as I can tell. I consider calling the out of hours GP, but decide against it for now.

We’re off to lunch with my brother and family, and I double my lunchtime dose of dex back to 4mg. We have a lovely meal of lemon sole Jamaican style with rice and peas and plantain. He’s a mean cook my brother. I’m still wobbly as we arrive home, but I can feel some tone in my left bicep. Before I had that odd sensation of energy vanishing like water draining from the muscles. By 6 I feel more steady on the stairs, and the hollow in bicep and knee has started to fill. A most weird thing, and a huge relief. By this afternoon, on the doubled dose, I’m able to walk Bun a little way on the moors.

The weight isn’t going to help, but I can’t stop eating. My vision had improved to vaguely smeared, but it returned to blurry most of the time within a day.

Looking out of the window at the hammering rain that heralds Storm Katy, the wind begins to bluster. I feel that need to sniff the air and get my hair tangled in the tempest, to be elemental. But it would probably blow me over, and I’d have to get past my Mum, who at 78 is stronger than me. I wonder whether I’ll ever feel okay again, enough to walk up tors, or swim in a strong current or jump into the river. I open the window and let the storm in.

This week I’ve resolved to see people, if only for a short time. It’s the endless sameness, the need for sleep every morning and afternoon. I sleep. I spend most of my time in the bedroom, like a transitional teenager.  Sausage, the dog formerly known as Bun, spends the day on my bed with me, then the evening downstairs with Mum and Dad.

Part of the problem is that I can’t read books or watch films, something I do normally. I can see screens better than books, but can’t concentrate enough to sustain it. The audio books make me fall asleep. I listen to Radio 4 and music.

My music choices are odd too; I’m not usually into folk, but have somehow downloaded a fair bit, including some of the kind that I hate involving fair maidens with child and dastardly men who skip away scot free. I’ve discovered Purcell’s Dido and Aeneas with Jessye Norman as Dido, and play that over and over (thanks Fi). Madame Butterfly is always on my list, and that’s remained. Then there’s Anthony and the Johnsons who are calling to me at the moment; Andy Williams, Dusty, a bit of Adele, Birdy, Kate Bush, Eels, Fleet Foxes. Rachmaninov. Bowie. Nadia Reid, Tanita Tikaram, Ricki Lee Jones, Mozart’s Requiem. Also some Sicilian music I discovered via watching Montalbano on BBC 4; Olivia Sellerio, and the amazing Requiem by Fratelli Mancuso and Armoniosoincanto which is Sicilian folk and Latin choral music combined. It seems to replace my emotions rather than eliciting them; vicarious unfeeling.

I want this weekend to be over. I know I’m not going to hear anything till Tuesday at the earliest. But I don’t want to wish time away. I received a beautiful bunch of tied flowers in the post, from my school friend Pip’s parents; bay leaves, yellow roses, white somethings and purple fresias and irises. They lift me when I look at them. My colours.

Op Hunt saboteur: going under

Where’s my pyjama t shirt? Mum’s ironed one pair of spotted pyjamas she wants me to take but, I never iron pyjamas. I don’t like that horrid little girl pink of the t shirt, nor the little girl hearts on the bottoms. What’s that about? Will the t shirt go over my head after the op?

Have I got a sore throat? I feel a bit chesty too, maybe a cold. If I say nothing will it be okay? But of course I’ve been feeling like this since October, that getting a cold ache and tug as I inhale. Nothing new.

Washing my hands I think of bugs on the towel and grab a fresh one. I used the phone, that must be crawling with microscopic life. I go and wipe it.  Infection control training, a necessary annual annoyance at work, does stick. I was always careful at work of course, primarily because you’re routinely making interventions such as intravenous cannulation where you can introduce pathogens straight into the blood stream. There are also many immune compromised people, and it’s easy to start spreading their nasties to others. But it’s only in the past few weeks that this concern has built into my own life now I’m taking steroids which makes me more liable to infection. I grew up outdoors, covered in mud, drinking unpasteurised milk often straight from the cow. I take the view that we all live in balance, including with the microbiomes that live within us. But not today.

Mum keeps asking have you got your…let me get that, don’t do that I’ll do it… my inner crocodile appears. Bun aka Sausage is most upset this morning. She knows.

There in the back of my brain, is the tangible presence of my tumour, the knowledge of the op, the potentials for what Hunt will turn out to be… but whatever that is, it already is. It’s just that I don’t know who this bogeyman is, what he’s  doing to do to me later on, whether he’ll leave a lingering whiff of aftershave or a large spillage and nothing will get rid of the smell.

I want coffee, I want breakfast. At last it’s 10 o clock and we leave. Back onto Fal Ward, same bag, same label, enhanced sense of dread. Will they cancel again? Finally I get the call to change and head up to blue bay. It’s less busy today. I’m trying not to think about the B word. My anaesthetist flies up. He’s L, a pony-tailed hippy doctor, and we have a chat about the anaesthetic and he explains in detail that he will be asking me to wake up and to consciously make the effort to  breathe at the end at which point he’ll remove the tube. I like detail, and feel reassured.

Finally, I get my HCA with a folder, the final sign that it’s going ahead. He runs thought the last minute bits, name check, allergy check, date of birth, signed consent form. No danger of some imposter getting my op today, I’d probably kill.

We start our walk to the theatre waiting room. There I ask them about the cancellations. Many of the people leaving the NHS at the moment are the experienced staff, and staffing is as much a problem as the beds themselves. It’s the same in the ambulance service. Only the young and fresh can keep with the pace and the relentless pressure of under-funding and under-staffing; the whole resourcing issue that is the end result of so-called ‘efficiency savings’, known as ‘cuts’ if like me you can speak plain English.

Mr Fewings my surgeon bursts through the door and hurtles past from the previous op; he’s gowned and wearing a rather up-market embroidered St George’s cross theatre cap.

“Morning young Roper! I’ll be back in a minute to do your op!”

“If you don’t I’ll shoot you.”

“My wife’ll probably do that for you.”

The HCA and I are called and walk to the anaesthetics room for Theatre 6. Lots of kit, my HCA, a theatre sister, D, who likes to swim in the sea, and C the anaesthetics registrar who I discover has had an interesting career path including a spell as a GP. He’s wearing a gown in a particularly fine shade of blue, another good sign.

C is going to start by inserting an intravenous cannula. I don’t even feel it, and then notice it’s a grey, wide bore, into my hand. Any paramedic would be impressed by that. Next, however, comes an arterial line for instant monitoring of my blood pressure during the surgery. This goes into the radial artery in my left wrist. A stab of fear. I don’t mind needles usually. My left hand still isn’t entirely sure where it is, and there’s a period of struggle where I’m failing to hold my arm or hand in the right place before I remember that thanks to Hunt, while I might think it’s in one place, it’s most likely not. So I end up with a board to put my arm on.

The arterial line presents some problems because I have a small and oddly-angled radial artery. C uses more local anaesthetic each time, but I’m fretting about it, feeling afraid of the next stab although it’s perfectly bearable. More displacement fears, something to latch onto in a physical sense. After a chat with L, C tries again using ultrasound. I begin to get that faint feeling, the sicky ugh. I can hear them discussing it, it looks to be in but isn’t. I ask for a couple of minutes to get over it, which they give me. D talks more about the sea to distract me. At this point I discover that L likes to swim under the full moon at Crazywell Pool, one of my favorite wild swimming spots on the moor. I’ve got the right gang in here; but I’m still really fretful. I hate it.

L takes over the arterial line as he explains to C about the planes of the artery. I think back to all those intravenous cannulations (into the vein which is far less complicated than this) where you miss, and start to lose confidence. I had one period as a new paramedic where I felt I’d never get one in again. Then whop, in goes a difficult one, and your confidence returns. You start to feel them in three dimensions. Noddy stuff by comparison of course.

We’ve now been almost half an hour; it’s 1 o clock. I’ve enjoyed chatting with the team as they distracted and tried to relax me. It’s a new experience for me to feel so anxious about things like needles, the minor transient ache-pains that I know I have to go through. It’s just today I don’t want to. I don’t want to be here, but I know I must.

And then the atmosphere turns as L switches into professional mode to get me anaesthetised. The padded mask, quite claustrophobic and I can’t feel the oxygen coming through. that horrid curry-sauce scent that reminds me of Scottish vomit (x pints o’ Heavy, chips and curry sauce being the most usual stomach contents encountered in the pool hall I used to work in as a student). Why do masks smell like that? I take deep breaths, in and out, in and out, oxygenating ready for inubation.

The hiss of gas, the curry still, D’s face, L looking at me, his green cap has a dangly back for the ponytail and bobs wobbles as he talks; the motion is like the dippers bowing and bobbing underwater in the Tavy. The plastic insert in the ceiling pulls me, concentric circles in white. There you go Lynne…

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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.

 

Blurred

The blurred vision that hit me yesterday evening really did hit me. I tried to be calm, to contextualise it, but the realisation that such a thing could happen led to a kind of bleakness, especially because I couldn’t get on google and research it.

After dinner, I washed my face, and noticed I have eyebags that are protruding over 1cm, which started me thinking more about the steroids as a cause. By 9 I’d worked out how to see enough to read, and as I posted in a PS, blurred vision is on the list of side effects for dexamethasone – as is, rarely, breathlessness which has worsened recently as I said.

I can’t go with the cataracts, since it’s so soon and it developed in a flash, in both eyes (although I suppose it might have started in one, and the other compensated, till that went too).

I might suspect Hunt if it were in one eye, perhaps, but he’s in the wrong place for that unless generalised swelling were responsible. Over the past couple of weeks, though, the signs and symptoms associated with that swelling have improved steadily to the point where I know the steroids are working, so that doesn’t fit. So I feel calmer this morning, but the magnitude of the whole is encroaching on me by degrees and leaps as the dragging wait for surgery continues.

Back to that brain thing again, so many possible consequences for so many areas of my life, so that I’m back to bargaining (with whom? I don’t know) between preferable, tolerable and no way. I have a bloody good chance at least initially of recovering, but of course there are risks, and then there’s the whole cancer thing, and the effects of the treatment which can be permanent.

On a positive note, I’ve experimented with the ondansetron and it’s marvellous. I take 4mg about 15 minutes before breakfast and steroids, then again before lunch, and before dinner. If I take them twice a day as suggested, lunch is hard particularly because the second steroid dose is at one, and I most certainly need ondansetron for that. I forgot the dinner ondansetron last eve, what with everything else, and felt suddenly and dramatically nauseous at 9 till I popped the last pill of the day.

The saga of the Ms issue returned on Saturday; the final forms from the DWP arrived, following that tussle with the DWP advisor over the legality of a woman wishing to be addressed as ‘Ms’.  Under ‘title’, it says ‘Miss’. I’ve crossed it out, over-emphatically, in black biro and replaced it with and inch-high ‘MS‘. Take that DWP advisor! And I trust it won’t result in a delay to my benefits. I’m in no mood to compromise.

A final comment from my Mum, Jenny:

“Now don’t forget to take notes on all this, I’d say you’re sub-standard mentally and you’ll forget.”