Future Plans

I began writing this post in May. I have been trying, for months it seems, to compose a piece that I would be proud of. An honest piece, grammatically correct, maybe containing the odd joke or two. I love words, I love reading; but the more I read, whether it be an article, an essay, a book, the more I realise that I am a reader, not a writer. Take the length of that previous sentence as evidence. Today, however, for some reason, I do not seem to care as much. I have reached a point where mediocre is acceptable. Not a great catchphrase for the kids, but I have found that if I don’t have mediocre, I don’t have anything. So today, I am going to type, and not edit until the end. I am going to admit that a vivid dream is not reality. 

The first anniversary of my terminal status has passed. There were no celebrations. For over a year I’ve been under palliative care. This is not as frightening as it sounds. My hospice nurse calls me once a fortnight. If I have a fresh complaint, she may visit me at home. The Wellington haematology team manage my disease, the Nelson Tasman Hospice team manage my symptoms. In May, a routine hospice call revealed an ulcerous insomniac tearing at her skin, rather than the charming patient they were accustomed to. My symptoms had overcome me. Although death remained distant, I was admitted to the hospice unit for symptom management.  

For the last year, I have tiptoed past the inpatient rooms en route to my hospice counselling sessions. I never once asked what the rooms were for. I had always assumed the worst. It turns out that the majority are for symptom management. They are not the introductory tombs that I had envisioned. I was admitted into one of those daunting white rooms, for monitoring and medication management. My body was infuriating me; I did not even protest my admission. If I was permitted to lie in bed all day, pretending to read, then I was quite happy. Sometimes it is nice not to have any pressures. The room was comfortable, although on the wall at the foot of the bed, hung a giant clock. It seemed to mock me with each second. Tick; “That’s right, while you’re lying in bed, time continues, and for you, time is precious.” Tock. Unfortunately, I am no Lola. I was forced to accept the taunts of time.

The symptom management wasn’t a great success. I continue to itch, scratch, and bleed, although the itch seems less intense, and the scratch more habitual. I try desperately to break the itch-scratch cycle, but just don’t know how. Hospice introduced me to Pinetarsol and menthol moisturising cream, which I coat myself in each morning. I imagine I smell like a Xmas tree with a cold. The Pinetarsol seems to be beneficial; an itch reduction rather than a cure, but at this stage, a reduction is all that I am after. And if anyone dares to ask if I have tried antihistamines, I will wallop them with all my wheezy strength. I have had a chronic itch for 8 months, of course I have tried antihistamines. Don’t worry, I don’t actually wallop them. I give them a biology lecture. You would be surprised at the number of people who seem to know what is best for my health.

Hospice don’t merely manage symptoms. They manage dying. To provide personalised care, they need to know one’s thoughts on death. A year ago I was handed a few pages to fill out. An advanced care plan, along with some questions to get me thinking about what I would want if I were unable to communicate. I thought they would be simple enough, you know, questions about organ donation (donate everything), religious rites (don’t bother), and my preference of burial or cremation (cremation, ashes scattered.) See, I had the answers already. This questionnaire wouldn’t take ten minutes. One year on and I am yet to complete my advanced care plan. 

The questions are really difficult. Not only are you forced to imagine an absent future, a future where you are, if lucky, a mere memory; you are forced to imagine a future where you exist as an unconscious mass. Both scenarios induce painful tears, so I tend to avoid these thought experiments. But the questions keep coming. Where would you like to die? Who would you like at your death? Would you prefer to die alone? Would you prefer to be comfortable or lucid? Is length of life or quality of life more important to you? It seems that my answers to these questions are further questions. I mean, when are you officially dead? Is it when your brain stops, or when your heart stops? How long are we talking in terms of length of life? Is it months, or is it days? I have been told that coma patients are able to hear. Would I be content with listening? And then there is the guilt aspect. It is expensive and emotionally taxing to keep me alive. More so if I contribute nothing.  

There is also mood. Some days, I’d like to invite the Nelson populace for a bedside visit. Other days, I decree I must be left alone. There are scribbles and arrows and more scribbles as my relationships and philosophies change. These changes seem to happen weekly. I guess I am no good at planning. And besides, it is more important to those around me. It is more important that their wishes are met. Because I will be dead, and nothing will matter anymore to me. However I must add that I do not want a spectacle; no state funeral, or parade, or public holiday; because deep down I am a humble being. 

Advanced care planning is encouraged for healthy individuals too. In case of future illness, or perhaps an accident. I feel the questions on organ donation are vital to discuss. New Zealand does not have an organ donor register. The government were petitioned last year to install one, but they declined to do so. They recommended a culture change, more discussion on the issue, rather than funding. Medical teams continue to rely on a driver licence to gauge one’s opinions on organ donation. The donor status on a licence is not legally binding, although it may soon become so. Currently, the family can still refuse. In France, they have an opt-out donor register, rather than an opt-in. It saves lives. 

I think the advance care plan guys are right. I think discussion about death is important. I find I don’t really discuss death, even though it is always at the edge of my mind; a dark haze drifting in from the outer regions, grounding all flights. It is difficult to know who is comfortable talking about it. Death tends to be a conversation killer. Perhaps not everyone needs to picture the exact moment of their demise, but a little discussion on wishes, of your body, of your funeral, can really be helpful. So I ought to complete those forms. 

Honest musings

What is this? Another blog post? See, I told you I would have a prompt update. And you all thought I was just saying that for the clicks. Nope, I meant what I said. Unfortunately, for both myself and Michael, I’ve had six or seven sleepless nights in a row. I think I have too many thoughts whizzing about my brain. Not concise thoughts, that would be more of a floating sensation, no, these thoughts are definite blurs. It has been a while since I wrote in this manner; simply writing to see what comes out, to see what needs to come out. So I sit here on the couch, under a blanket, with two litres of orange juice, a pot of coffee, and a whole lot of time. Let us see what happens.

You’ll have to excuse me if I become repetitive. This is not the slick Observer column I once envisioned in a quixotic dream. Rather, it has become the ramblings of a cynical invalid. I wish my dreams were still quixotic. Instead, they are nightmares involving blood results and aching ears. They are dreams that are all too close to reality. Many times throughout these compositions I have been cautious with my words. I have held my tongue, and in doing so, I have not been entirely honest. This post will be honest, as will those that follow. It is more than likely that it will be longwinded, for that is my manner, but I will, eventually, come to the truth. No more holding back to protect feelings. 

There is more to tell about June and July. I wrote about my longish stint in hospital. This was in part due to radiotherapy, but also because I was quite unwell. Poorly, as the Brits would say. I was again anaemic. My last transfusion had been in March so a sudden plunge in haemoglobin was a little odd. A registrar set about comforting me; yes it is possible to become anaemic when you have a severe infection. Look at your raised CRP, your fevers, your cough, your murky chest x-ray. And your LDH is normal. These all point towards bronchitis. But I am never convinced. I am like an obsessed conspiracy theorist; you can show me one hundred pieces of evidence to support the infection idea but I will still believe that I am relapsing.

There were other symptoms complicating the bronchitis diagnosis. Like my loss in appetite. Like dropping eight kilos in a month. Like this pain in my spleen. These don’t make a lot of sense. As with all conspiracy theorists I am never alone in my ideas. There will always be others out there to support my views. One such person was my consultant. And I wonder, if these obsessed conspiracy theorists I speak of, I wonder if they freak the fuck out when an expert agrees with their suspicions. I wonder if they half, maybe even three quarters, believe the theory but the remaining proportion is actually desperate to be proven wrong. No, no, no, Mr Expert, you’re meant to debunk me. Not agree. Please don’t agree. My consultant did agree with me. He ordered another CT scan. Ok, so maybe I am not quite so similar to a conspiracy theorist. I do appreciate strong scientific evidence.

I feel it appropriate to make some Atwood time leaps. I’ll be like Snowman Jimmy, except less of an asshole. I know how many of you get that joke. I've given that book to pretty much anyone who ever expressed a vague interest in speculative fiction and even to some who haven’t.  Anyway, back to time jumping. I had a CT scan back in May. I am aware that I have not published the results. In March, I was on my death bed. It is funny, in a dark, twisted, Bill Hicks sort of way, that each time I have been ‘on my death bed’ I have pulled back, and the next time is always ten times worse than the bed prior. March was ten times worse than December. So, when I say “In March, I was on my death bed” what I mean is “in March I was dying”. The next death bed will, no doubt, be worse. In March, I would have died without medical intervention, without blood transfusions, without my magic new drug. In March, in order to gather how badly I was dying, I had a CT scan. This has been used as the base scan. I guess if a scan ever gets worse than that then I am in a whole lot of trouble. I never read the report from the May scan, not until recently. The official line was that some masses had got bigger, whilst others had got smaller. At the time this was no surprise to me nor to Mike. I was quite aware of the bulging node in my neck and the four or so in my groin. I knew they had not been present in March. But I think of them as superficial nodes, nodes not likely to cause too much grief, just a little uncomfortable, and a little disconcerting for those looking at me. Is that a cretin, I imagine them asking.

As an inpatient in July, my consultant felt it was time to do another CT scan. The results were better than March. But they were not better than May. The results in July showed disease progression. My super new drug is not working. Or, rather, it is working, but it is only doing half the job. It is quite probably slowing progression, but it is not preventing progression. 

What is it like to be told you are terminal? Well, it was not unexpected news but it was undesired. I did weep. I did apologise to the doctors for weeping. I had hoped to take the news better than I did. I was told, by my consultant, that I was his favourite patient. I bet he says that to all the dying girls, a number which I hope is few, if not merely to flatter my ego. 

Wow, so the blurs continue to whizz around my brain, I’d like to make them more concise. I feel like I have so much to say, but I fail to make sense of it. I’ll start with logistics. I am continuing with my drug, the infusions are to be done in Wellington. They tried to transfer treatment to Nelson but it is impossible. So my fortnightly trips from Nelson to Wellington continue, with hospice care to be convened in Nelson. The drug is providing me with hope. Granted it is Obama style hope, but it is hope none the less.

That is a vague description of logistics. It turns out I am not in the mood to write of such things. It makes me agitated. I don’t know what you’re feeling right now. Most probably confusion. I have told very few of my updated situation. Initially I intended to keep it a secret. I feared people would treat me differently. I did not want that. I do not want that. But the more I thought about it, the more impractical secrecy appeared. Some of you may have noticed that my sister was married a couple of weeks back. The weather in Wellington is just beautiful in August. It makes total sense to hold a wedding then. And organise it in two weeks. Perfect sense. Some may have noticed that my other sister seems to be spending a bit of time in New Zealand, well, in the South Pacific at least. Yes, the New Zealand weather really is lovely in August. She's right to forfeit a European summer to experience squalls, southerlies, and hail storms. Ok, I’ll admit these events are suspicious. I would be suspicious. The news had to come out. I apologise to the many of you who are finding out via a public blogpost. It is an extremely difficult conversation to have and it doesn’t get any easier the more I do it. If anything it gets harder. I know most of you won’t know what to say. You may take some comfort in knowing that I don’t know what to say either. I guess there ought to be some sympathy, I mean, I have had to listen to the media bang on about Trump for like two years now and I will probably never see the bloody election result.

Since my July CT scan, I have read the report from May. It turns out that scan was more pessimistic than we had been led to believe. The May report suggests progressive disease, so really I have been terminal since then, albeit unknowingly. I would like to be able to say that official confirmation of my suspicions didn’t change anything. But if I said that, my nose would grow. I’ve had to think about what is important to me, what is important to Mike. I’ve had to deal with all those aspirations I never got around to starting, assuming I would have time to fulfil them later. Sometimes it is difficult, but most of the time I just feel numb, like it isn’t really happening. It is only when a fever kicks in, or a lymph node bulges, or pain manifests, or when I notice that the food I am eating has an expiry date longer than my life expectancy, it is only then that I remember what is going on. And I must confess that often, when this happens, I cry.  

I intend to continue this blog for as long as I can, however the tone may change. I recorded my thoughts throughout my last hospital visit, and I’ve long been jotting down my ideas on mortality, on dying, on everything really for quite a while now. Sometimes these thoughts get a bit dark. Here is a jot, a particularly dark one, which I wrote in June before I knew I was terminal. It goes a little something like this:

I think it is time to talk about dying. This is rather selfish of me, I know, but I feel by putting this down in writing you can make your own judgement as to whether you wish to engage or not. By engage I simply mean read. I understand that many do not wish to think, let alone speak, of death. Of late I have felt an urge to discuss it, but where I can legitimately do so is limited. So, after months of deliberation, I have opted for here. The whole point of this is not to mince my words. Here goes.

When reading about those with terminal conditions, I am always struck with how positive the individuals are. Wow, you’ve gone back to work and you swim 50 lengths even though you’re terminal? Phenomenal. ‘I just enjoy every day, one day at a time.’ Fan-fucking-tastic. I have read one, only one, which had a tinge of bitterness to it. A teenager. I feel he has every right to feel bitter. But nobody wants to read negativity. The punters want happy-go-lucky dying stories. I am not one of those. I am not bitter, but if I was to write a dying column, it would not involve working nor 50 lengths. Dying is painful. Right now it feels as though somebody is stabbing a sharp poker through my shoulder blade. Dying is exhausting. I didn’t make it out of bed yesterday. I went into dying with a positive attitude. Mike and I would trip around, see the things I hadn’t seen. We’d go snorkelling, watch a hundred sunsets, sip cocktails, eat local delicacies. But, right now, it seems that I will never be well enough to make that happen.  

A big part of palliative and hospice care is pain management. Somehow, I slipped through a palliative care gap and only met the team when I was officially terminal. This is not actually how palliative care works, at least not in Wellington. They like to meet you early, help manage your pain whilst you are still undergoing treatment, thus preventing events like June. I guess because I was coming and going so often I never got to meet them. I have met them now. I have a lovely palliative care nurse who, on our first meeting, asked what was going through our minds. “We want to runaway”, I replied. She was mortified “You want to run away from hospital?” No that wasn’t what I meant. Mike and I have a tendency to escape when things get a bit much. Take a little trip somewhere. Somewhere with no cell phone reception. Somewhere with no internet. Fortunately, that includes half of New Zealand. The plan is to spend one week in Nelson, then one week away, then repeat. But we cannot plan more than a week in advance because we never know how healthy I will be. Sometimes we spend both weeks away. Sometimes we attend a wedding. Sometimes we drink too many margaritas on a school night, then realise that we no longer have school nights, so drink too many more. Shhhh. Don’t tell the doctors that one. Sometimes, being terminal is repressive. Sometimes, it is ultimate freedom.

Now that I have made this announcement, we are escaping. Escaping to a place with no cell phone coverage and no internet. To a place with sunsets and cocktails but no local delicacies. It seems some delicacies are endangered creatures. But maybe, just maybe, I’ll get Mike to start a cult in my name. Something to remember me by.    

A card Mike gave me a few years back