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. 

Scratched raw

I am living in a state of perpetual agitation. Ok, so it is probably not perpetual, as in forever, but it seems perpetual during this period in my life. The agitation I feel fails to cease, thus I am terming it perpetual. It arises from my physical complaints. An itch at the back of the skull, oh and now at the temple. An ulcerous pain both sides of the tongue, the lips, the gums and the rear of the mouth. A foot itch again, then one on the knee. And the nose that itches incessantly. An itch on the palm, which requires two hands. Oh no, that nose has started to bleed, as has a small patch upon the knee. A nerve pinches the neck and a vertebrae. And now an itch on the thumb, which requires two hands.  

I wish the itching would stop, so I could think about something other than myself. 

Constant agitation, distraction, frustration. My futile days seep into sleepless nights. I find it impossible to sleep, yet I cannot keep my eyes ajar long enough to read a paragraph. Especially old droopy left eye, who has been hijacked by a group of rebel nerves; a mess of pinched fibres that I have long lost authority over. Often I try to read; the book perched between my chest and the cat, lights ablaze, eyes closed, wondering how the characters from 1920’s Spain got to a spaceship, and then to infinity and beyond. Poor writing Mr Hemingway, I must say. When this occurs, which is pretty much any time I opt to read, I genuinely believe that I am reading the story. I fail to grasp that these gross irregularities are my imagination. And my imagination sucks. I mean, bullfighting on a Battlestar? It sounds like an obscure way to dodge the animal rights laws, or the plot from a Philip K. Dick story. Perhaps I am guilty of imaginary plagiarism.    

As this post attests, writing is difficult. Reading, as I have said, is impossible. Conversation? Conversation is onerous, more for my interlocutors than myself. Agitation, frustration, distraction. I am on edge. I am defensive. I am trying, rather hard, not to snap or bite or to allow my frustrations to overpower me, and become the problems of others. I am not succeeding. I am irritable, irrational. Not only have I succumbed to the itch, I have succumbed to my emotions. And I cannot figure out how to control them, how to notice them, before they takeover.

Mr Peach is out of control

I have completed radiotherapy for my neck. By the time it was scheduled, all my neck and shoulder nodes were firm and swollen. Again, I needed a radiotherapy mask, to prevent any movement whilst the rays did their thing. This mask was large, encompassing my head, neck, and shoulders. It put pressure upon my chest when I inhaled, and to be honest, it was pretty uncomfortable. The entire experience was uncomfortable. At least I have no scent, so the disconcerting smell of overheating electronics was lost on me. I think this is my sixth radiotherapy round, and I am yet to adapt to it. I mean, it is far better than chemotherapy. A million times better. But it still knocks you around, it is still disagreeable. And it is difficult to remain motionless when one has a chronic itch. 

This mask is then clamped to the bed

For me, fatigue is always a side effect after radiotherapy. Someone likened it to the fatigue of a new mother. Well, I have never been a mother, and if my ability to cope with radiotherapy fatigue is anything to go by, it is fortunate that I will never be one. As this dose was directed at my neck, I was warned about aggravation to my throat lining, a bit like sunburn. This happened during my first radiotherapy round, back in July, and I survived on Fortasip and canned spaghetti for a week. Although unpleasant, it was manageable and the benefits from the radiation had kicked in so it seemed a worthwhile trade-off. This time, I was prepared for oesophageal sunburn but I was not prepared for oral mucositis. 

What is oral mucositis? Good question. Basically, a bunch of uninvited ulcers burst into my mouth shouting “We’re here! And we are not going away! Oh and darling while we’re here we simply must discuss your interior decorating. This gummy pink look is so mainstream, what we need is white, cream and ochre. Right, strip the walls, and the floor, and that strange papilliform mezzanine thing, strip that too.” It is like my oral cavity caught alight and the flames were doused with sulfuric acid. My mouth is destroyed. Ulcers everywhere, the linings of my lips, the perimeter of my tongue, the entire width and length of my left cheek. Oh and anywhere that controls movement; my oral frenula are dotted with ulcers, like strings of fairy lights. But they don’t look pretty. My tongue is amusing, if you can see beyond the ulcers. All the taste buds have gone, except for a tiny patch in the top righthand corner, so my tongue is this smooth pink rubber blob. It can’t even detect the texture of food.  

The pathophysiology behind oral mucositis, in Liv’s words, is that the radiation damages the DNA of the epithelial cells within the mouth, stripping the gum lining, leaving the tissue beneath raw and exposed. The DNA damage triggers an immune response (cytokines), and the immune cells form a protective white layer around the exposed tissue. This will remain hanging about until the gum cells get around to repairing themselves. So, cool process, but when most of your mouth is ulcerous, uncool result. Currently, my mouth burns and I can barely open it. My chapped lips have a tendency to fuse together, or stick to a beverage receptacle. My cutlery options have diminished to a mere teaspoon. The pain within my mouth is constant and it tastes sour. That must be the only flavour my imbecile buds can detect. With time, and immaculate oral hygiene, the ulcers will heal. Until then, I am reduced to a near liquid diet and an infant toothbrush. My brush has a kitty and a hippo on it. Oh and alcohol-free mouthwash is imperative, unless you wish to reignite those old flames.

There has been a significant size reduction to the quarrelsome lymph node, and his pals seem to be following suit. These are the first visible tumours that I have had zapped, so I was interested to see how quickly they would recede. Two weeks after radiotherapy and I have a discernible jaw line. I have not seen my jaw in a while. The core of Mr Peach remains, the nerves are still pinching, and my left collar/shoulder area is tense and tender. I feel I may have lost all bicep strength. All evidence supports a successful radiotherapy session. Except that the pruritus is out of control. Last week, I removed my shoe at a restaurant table because the itch was unbearable. I’m one classy lady. Systemic itchiness is ruining me. I cannot sleep, I cannot relax, I can barely think, and  I mentioned the irritability earlier on. Pretty much the only solution to paraneoplastic pruritus is to remove the neoplasm, the tumour. As that has not helped, other remedies need to be considered, systematically added to my medical cabinet and monitored to find the appropriate solution. I’ll be scratching for a while yet. 

Each time a new challenge arises, a new symptom, a new complaint, I assess the situation as an independent event, cooperating with treatment regimes and possible side effects. A common thought propels me; “It will all be better when…” When my hair grows back. When my backache stops. When Mr Peach disappears. When my mouth heals. When I overcome my fatigue. When I stop itching. This is, of course, fantasy. I may manage to vanquish an ailment, but another will just as soon arise. This is not a case where things get better.

Peaches and Sake

The pruritus that I have been whining about for the last wee while is now out of control. No part of my anatomy escapes the haunt of the itch, and the haunting is incessant. I spent the last ten minutes scratching my palm, whilst devising a method for the removal of my nose. As it has lost all olfactory function, and as it refuses to halt any itching, it simply needs to go. Unfortunately, I am yet to develop a rhinoplastic solution, as no thought will stick for longer than five minutes without a distracting itch arising. Five is, perhaps, being generous. Argh, if you’ll excuse me one moment, an unavoidable itch has developed between my second and third toe, and the imploration for a scratch is too difficult to refuse. Have you ever tried denying your third toe? It does not end well. There seems no resolution to the torture except a solid scratch. I have tried moisturisers, both chemical and natural. I have tried oils, oatmeal, antihistamines, three different kinds of soap-free soap. Hot showers, cold showers, mineral baths, distractions, mindfulness, even tearing up tissues; nothing soothes the itching. Despite maintaining military length fingernails, rips in my skin are beginning to show, and finger imprints are appearing in the form of bruising.

I have delved into the science, of course, and have concluded that the lymphoma is to blame. Itchy skin (pruritus) is a well documented symptom of Hodgkin’s Lymphoma; 15% to 30% of patients report it. There is scientific speculation that the malignant Hodgkin’s cells, which are known to secrete a bunch of cytokines, are secreting a few that aggravate the nerves under my skin. Cytokines are cool. They are chemicals released by the body to inform cells, particularly blood cells, where to go and what to do. How do your neutrophils know where to be to fight that bacterial infection? How does the bone marrow know to increase white cell production? Because of cytokines. My rogue B-lymphocytes release fun cytokines that encourage fevers, rigors and itchiness. The tumours in my neck, the nodes the size of a Roald Dhal peach, they must be releasing increased itchykines. (Just so you know, and to ensure that I am not lumped in with the fake-news crowd, ‘itchykines’ don’t exist. I made the term up because I like puns and biological science at a cellular level. Lame, I know. And what with this disclaimer and all, I have really disrupted the flow of this post. Yet, ‘itchykines’ remains an unofficial non-thing. I’m sorry about that.)

Oh and those neck nodes I mentioned? Yeah, they’re pretty big now. Mr Peach has remained firm, and a node beneath my jaw (submandibular) has ballooned over the past week. I now have a puffy face with a droopy eye, and there are facial areas that are numb to the touch. Like my entire left ear. Ironically, this numbness does not provide itch immunity. Instead, I am numb to the rasp of my fingernails, resulting in an ear itch that seems eternal. My hair has almost returned, except for a bald strip that divides my skull. The previously endearing circular patch at the rear is transforming into a rattail. What with the lumpy neck, awkward hairdo, swollen face, and continual scratching; I am the cretin you fear on the bus.

I spend a lot of time pondering. Some of these ponders find their way to this blog, but most are confined to my head or my journal. I’ll share these latest thoughts, although it is possibly unwise to do so. Currently, I am struggling with the concept of time. How much I have left, how best to utilise it, how much I am sapping from those around me. No matter how I spend my time, I feel guilty about it. It always seems that I could be doing something more meaningful. It always seems that I am achieving nothing. At night, scratching away, I reflect on the past day, my memory spectacles clouded by guilt and regret. I don’t know how best to spend my hours, and I worry that I am not making the most of the time I have left. Whatever the most means. 

A few weeks back, before my face puffed up, the haem team ordered a CT scan. I found this amusing. Mr Peach has been growing since January. I knew my tumours had not reduced, a glance at my neck could confirm that, so a scan seemed unnecessary. Aside from my inflated neck nodes and irritating skin, I was experiencing no other disease symptoms and my energy levels were improving. Given that time is a concern of mine, and given my health was stable, Mike and I thought it might be an opportunity, perhaps our only opportunity, for an adventure. We'd been murmuring about Japan since January. It was now March, springtime, perhaps the cherry blossoms would be in bloom. We ran through my medical concerns. How fast could my health deteriorate? What was the worst that could happen? These questions are rhetorical; the harbingers of dwell. Impossible questions that no one can answer. We scrapped this approach. If it were not for the lymphadenopathy we would have booked our trip without hesitation. Instead, we sought medical advice. 

I have four medical liaisons, two in Wellington and two in Nelson. We surveyed them all. It was an interesting situation. Not one would commit to saying yes, but nor would they refuse permission. They were desperately trying not to deny us. Someone may have said ‘unadvisable’ at some stage. It was the distance from New Zealand that concerned them. There were no issues with Japan as a destination, nor my ability to handle the 11 hour flight. But they were worried that if drastic circumstances arose, 11 hours was a long time to delay medical intervention. To complicate matters, the CT scan revealed just how large Mr Peach was. And that he was compressing my jugular, and forcing my larynx to the right; a widespread issue globally, it seems. Apparently, jugular obstruction is not a major issue. There are a network of fail-safe veins that bypass the occlusion without any drama. The risk was the carotid artery. If old Peachy continued to grow, he may compress the carotid artery, and that could lead to a stroke, which would not be much fun in Japan. Their immaculate healthcare system is simply too expensive for uninsurable invalids who happen to be tourists in their country.  

We stewed and dwelled and researched and stewed some more. At some point we realised that we had expended so much fucking effort, that there was no way we could back out. Flights to Osaka were booked, four days prior to departure. I had intended to keep Wellington in the dark. I felt the trip would just worry them, and no consultant needs extra stress. Unfortunately, he called an impromptu meeting to discuss the CT scan, and I ended up confessing. Surely this is a common issue, I asked, you must have patients travelling all the time? No. Not often are his patients healthy enough to consider travelling. I am quite fortunate. Immunotherapy is not going to cure me, but it does allow an uncomplicated trip to Japan. Medically speaking that is; everything else in Japan is entirely complex. It is a country of confused fun. Our decision to travel could be deemed reckless despite our hours of consideration. Would you have gone? I remain unconvinced that travel is the best use of my time. I enjoy it, I enjoyed Japan, I enjoy our jaunts into the New Zealand countryside, travel excites me. It injects me with pseudo-vigour and happy fun times. But my gratification is not the sole purpose of life. It aides no one but myself. Well, perhaps travel is better than nothing, which is often where my ponders lead. 

Totally worth the risk

Mr Peach is in his final days. Radiotherapy is scheduled for the coming week and I will enjoy watching him rot. I am hoping for a vast reduction in neck size, and a cure to this incessant itchiness. I am also yearning for a shoulder massage. Massages are difficult to book, you see, when you have lumps where you ought not. Something to look forward to, as daily tasks become progressively harder, and the nerve pinching progressively worse. Oh, and I assure you that the movement of my voice-box is purely anatomical. I remain the outspoken anti-corporate, meat-free, green-voting hypocrite that you all adore. If I do not have my ethics, I do not have anything.