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. 

Communicating with other worlds

Guys, guess what? I have some hair. Three weeks ago, I began to sprout horns. Triangular scruffy horns, positioned as one would expect on a creature of the netherworld. The beginning of a Dantean descent; Hell’s initiation package delivered to me via hair growth. It certainly looks comical. I guess these two patches received less radiation than the rest of my head. I also have a thin band of scruff along my hairline, about the shade of a five-o’clock-shadow. This scruff links my two triangles. Faint, yet evident. The rest of my head remains bald, although I am promised that there is one patch, the size of a coin, growing on the back of my skull. Perhaps this is my halo. I say the rest of my head is bald but that is not entirely true. There are a few brave follicles shooting their hairs upward, and these hairs stand erect upon my head like little antennae trying to communicate to another universe. Maybe this is where the triangles fit in. They are too precise to be theological, astronomy must be the answer. Maybe I ought to read some L. Ron Hubbard. Oh no, what am I thinking? Another look in the mirror and it is obvious. Two triangles and a thin strip, obviously I am growing cat ears. I look like I’m a member of Josie and the Pussycats, wearing a headband with feline ears on it. Or Minnie Mouse ears for the slightly younger audience. Perhaps I will reincarnate, perhaps I will become a cat. I know I have discussed this theory before. It isn’t satan or aliens that await me, it’s cats. I’ll start singing Memory now. 

Whilst I am on the subject of hair, my sister-in-law Janine is shaving her head next week as part of Shave for a Cure. If this had all happened two years later, I may have been cured, and in two years time, someone else might be. This is in part due to the work performed by the Leukaemia and Blood Cancer Foundation. My life has certainly been prolonged by medical research. So if you feel inclined, please support her. I, personally, am looking forward to a little family regrowth challenge. Although, it isn’t really fair as I have a headstart of four months and a healthy dose of Prednisone at my advantage. I suppose I would be disqualified; steroid usage is frowned upon in any competition. 

In other news, I have some rather choice cervical lymphadenopathy going on. Throughout my illness, my lymph nodes have expanded and contracted as they have deemed appropriate. This is classic with Hodgkin’s; the nodes tend to overreact during an infection. Problem here is, I appear to be infection free, yet these nodes are not contracting. One neck node is about the size of a peach, and all his buddy nodes have decided that the swell thing to do is expand. I have used a fruit analogy but in reality these nodes have a tactility of stone, impeding the movement of my neck. They make it difficult for me to toss my hair back over my shoulder, which of course I do frequently given my minxish nature and full head of hair. But aside from the restricted movement and the disconcerting aspect of a summertime fruit protruding from my neck, the swollen lymph nodes do not seem to affect me that much. Although I must say, it is nicer for one's tumours to be hidden. There is nothing like seeing a patchy neckless monster reflecting back at you each morning to make you feel content with the world.

I am also incredibly itchy. This is an early symptom of Hodgkin’s lymphoma and I remember being itchy when I was first diagnosed. It is odd, because other than the giant neck nodes, I have no other Hodgkin’s symptoms. I am pain free, have a healthy appetite, and a stable weight; I just have a need to scratch all the time. And at night my feet drive me insane. So that is a fun new development, and I bet I look super cool scratching my nodes in public. Other than that, I have been feeling pretty good of late. Really, I am only complaining about being itchy, so that must mean that things aren’t too bad. 

Oh, and if you haven't picked up on my subtle links, you can sponsor Janine by clicking here.

Sharpening one's senses

Argh, mornings. Mornings are hard work. I am aware this statement is no grand revelation, insightful breakthrough of the mind, or epiphany; I have never liked mornings and I imagine about half of you out there would agree with me. But, currently, mornings aren’t worth getting out of bed for. Except that I am forced to. Pain has again arrived. Right sided rib and lumbar pain this time, restricting possible slumber postures to a mere two. Tactical Sevredol intake no longer seems to help; pain is winning the war on opiates. After a night locked and rigid, morphine levels diminishing, well mornings become unbearable. Pain wakes me. I rise, perhaps dress, then collapse, breathless, back upon the bed. Breakfast is impossible. Coffee, also. And I am just a dreadful person to be around. To say my fuse is short would be a gross understatement. It is morning now.

I am aware of my cantankerous nature. I work hard to bite my tongue, to try and diffuse my irrational agitation, but I tell you pain makes social interaction pretty difficult. I have no patience or tolerance or compassion, and I despise feeling this way. I preferred being brain numb and sympathetic than alert and cranky. A tourist, on a walking trail just ahead of us. My pace is that of a sloth; there is no chance that anyone will hold us up. We have nowhere to be, no reason to rush. This particular tourist, on this particular day, seemed fond of taking photos. She stopped, often, her phone in front of her face, snap, snap, snap. A sandy track through the manuka trees, a manuka tree, farmland, a cow, a stile, a stone. Snap, snap, snap each time she stopped. She never held us up. She had no impact on me, nor anyone around me, yet I was fuming. Then the pointlessness of my anger aggravated me further. I wanted to scream and cry and tantrum and rant. It requires too much energy to be angry. I can’t go wasting energy on minor incidents that have no ramifications on anyone else in the slightest. Outrage is pointless. It is hardly an emotion, it is a reaction, and an unproductive one at that.

Snap, snap, snap

Chronic pain seems to do that to me. The pessimist emerges. I concentrate on what I dislike, rather than what I like. I place fault at the feet of those around me. It is not the tourist who has caused my anger, I have caused it. I am on the verge of an eruption, the pain needs to be stopped. So another trip to Wellington, attempting to eradicate the pain, again, with radiotherapy. There are many types of pain, and most I can manage. Often, pain passes. That is how I tolerate  it. I know that it will pass, and I will feel good when it does. The pain I am experiencing now has been progressively worsening since December. It doesn’t go away. It is dulled by morphine, but always a small portion remains, chipping away at me. The radiation team suspect that the Hodgkin’s lymphoma cells are now inside my ribs, slowly expanding the bone, and that this expansion is causing the pain. Which is how it feels to me; like someone is trying to inflate each rib, coupled with a nerve pinch.

My appetite since the TimTam incident has not been great. I am not sure why this is. It could be disease, I certainly have some gnarly neck nodes at present. But, to be honest, I do not wish disease to be the reason. I am opting for denial. So, I shall look for other excuses. Mainly taste, I think. Since the November head radiotherapy, my taste has been lacking. I can recognise the six base ‘tastes’ and a few specific foods, but not much more than that. Fortunately, I can taste strong coffee as ‘coffee’, but I can’t taste any subtleties. I can barely taste beer as ‘beer’. It is not worth taking me to Garage Project at the moment. Occasionally, I find myself craving a dish that I know I shan’t be able to taste. This seems odd to me. It appears I can activate taste receptors within my mind but not in reality. Initially this lead to disappointments, further tantrums. But I no longer submit to these cravings. Still, the tantrums tend to remain. There are dishes and drinks that do taste exactly as expected, Coke, unfortunately, being one. Sometimes it is a relief to eat something and have it taste precisely as you remembered. Often, I am just left disappointed. I guess this is what global food corporations thrive on. A consistent bland taste.

Also, I have no sense of smell. Like I cannot smell anything. Again, this is side effect of the brain radiotherapy, so I’ve been unable to smell for about twelve weeks. You’re probably aware of the time frame. I do keep harping on about it. Anyway, it is unlikely my sense of smell will return. It is a peculiar feeling, having a core sense wiped out. Granted, smell would have been my choice, if I’d had a choice, I know I am fortunate. But I do feel a little dull, like I am missing more than just my sense of smell. Perhaps its absence will enhance my remaining base senses, and I will be a superhero again. Yes, again. Ok, I may have a Marvel complex. Actually a Whedon complex is probably more accurate. Like anything that vanishes, I did not realise how much I relied on scenting until I could do it no longer. I have had to adjust how I cook; watching the onions sauté rather than spinning around once they’re fragrant. This is on those rare days when I happen upon the energy to cook. And to be fair, I cannot tell you how palatable my creations are because I cannot taste them. It may be best for me to forgo cooking. My laundry abilities are also hampered. Either I must recall what I have worn and when, an unlikely prospect, or new systems are required for detecting dirty clothing. The old sniff technique is no longer valid. Dr Urbino’s affair remains secret. Florentino never gains his true love

Appetite, ah we’re back to appetite. Smell seems to contribute much to appetite. Perhaps I require bells to stimulate salivation as I no longer have my onions. Oh shit, my onions, I forgot my onions. Hmmm, well, I am sure there is a recipe out there that calls for blackened onions. No, no, don't worry, I'm not cooking. I know much better than to blog and fry. An inability to smell also impacts on food storage. I have never been one for expiry dates. But now I cannot smell if the hummus or milk, is foul. I just blissfully use it. Perhaps this is the cause of my nausea.

There are positives to an absence of smell. Public toilets, long drops, neither are a bother. Except I need to look a little closer before rushing on in and settling down. I guess pungent smells are meant to repel, to alert, to let one know that something is amiss. Smoke, gas, heat, petrol, biological fluids; all void in my nasal cavity. A little disconcerting, again when cooking. However, another positive, at least my nausea no longer feeds-back upon itself. Why the nausea? I do not know. All I know is that it isn’t smell related, but it is rather frustrating. I have become accustomed to vomiting in public, much like I was when I was eighteen. Except now it is daylight and I simply remove my hat, receiving compassionate glances rather than condescending snarls as I hurl into a garden.

So this turned out to be one giant moan. I do, once again, apologise for that. I guess I could claim this as an update of radiotherapy side effects, but really we all know I just felt like bitching. As usual. But writing this post has been helpful. I’ve realised that I probably ought not to cook dinner tonight.

A smooth journey

I have chanced upon a tiny opportunity to write. It is frantic over the holiday season what with social engagements, gorgeous weather, summer events; it is difficult to find the time and solitude required for writing. Most spare time I have is dedicated to sleeping. But I have some time now, to write, and I will seize it. All fingers on the keyboard.

But what to write about. It is not that I am short on material. Ideas flutter restlessly inside my head, and I swing my white net in an aimless attempt to catch one, just one. The thoughts are there, but are they appropriate? What do you, my loyal fans, wish to read about? What would help others in similar situations? I have been hit, once again, with an urge to make this blog useful. However, full disclosure will plunge you into some rather personal and intimate experiences that, frankly, I do not believe you wish to learn about. And any poor stranger who Google stumbles upon this blog is bound to despise its style, instantly hitting the little x of doom, never finding their way to the juicy content. This leaves me with a hole, a content hole. I cannot figure out how to write a post of substance without oversharing. I want to write a post that will help a stranger. I guess we, in New Zealand at least, are still in holiday mode; a relaxed post may be more appropriate than my usual doom and gloom. Ok, it is decided. I will set down my glass of Ural and cranberry (my drink of choice since Christmas Eve), and resort, much like the media, to triviality. I am going to document my hair loss.

I thought I had already written this post. I know the issue has been on my mind a bit. But a cringeworthy flick through my black book produces little documentation on the issue. I also noted, with a tinge of shame, that I have never posted a picture of myself bald. This was not consciously intended and it bothers me that it has happened. I shall make up for absence in this post, be rest assured. Earlier, I alluded to hair loss as a trivial issue. If you take the entire cancer picture, it does seem like a mere pixel. Yet it is odd, when grappling with a cancer diagnosis the first issue that springs to mind is hair loss. I think the issue trumps prognosis. It was certainly one of the first thoughts that flicked through my mind. I even discussed it with my ward-mate. A week after her first chemo round, she was beginning to lose her hair. We both agreed to chop ours off as soon as we were released. I mean discharged. I wonder, why the focus on hair loss? For some, I imagine, it is the only aspect of cancer they are aware of. Cancer = bald. This is a misconception. Not all cancer patients require chemotherapy, not all chemotherapy drugs cause hair loss, and radiotherapy can cause hair loss at the targeted site. Cancer may = bald, but not necessarily. Perhaps the concern has to do with control. By cutting off my hair I was proving to my body, to my life, that I still had an element of control over it, albeit fleeting. I could dictate, at least, how my hair would fall out. A similar effect happens with diets. Many patients I’ve met, and their families, focus heavily on their diet once diagnosed. Food intake is one of the few things they can control. Many patients receive nutribullets as gifts.

I never had a good relationship with my hair. It was explosive, unruly, neither straight nor curly, just frizz and booff. I am not patient when it comes to hair. Lazy, really. Hairstyling was not worth the effort because the outcome was never successful. However, I was always afraid to cut it short. This fear stems from my childhood; I always had long hair, I was encouraged to keep it long. There were even rules regarding hair length. Cutting my hair was the first of many releases I have experienced since being diagnosed. It looked infinitely better short and required minimal daily maintenance. I wish I had done it years ago. And now when I look back, it seems a ridiculous thing to have been afraid of.

Every drug interacts with every patient differently. There is little the medical teams can do to predict how I will respond to a particular drug, and how Mary down the corridor will respond. The only way they can do so is by using statistics. You see these stats in the drug inserts; 1 in 10 patients will experience nausea, 1 in 100000 will turn into the Incredible Hulk. When it came to ABVD chemotherapy and hair loss, all the med team could offer me was a shrug. I may lose it, I may not. My experience with ABVD was a gradual loss. I was a moulting domestic animal, without any hair regrowth. The decision to cut my hair short was again ratified; shedding long hair would have been cleaning nightmare. As it was my discarded hair was all through the flat, interwoven with my clothes, the couch, the carpet; but at least not the shower drain. I had six months of ABVD, after five months my hair was thin, patchy, and my animal resemblance had switched from domesticated to mangey. One sunny July afternoon, part in panic, but also because I saw no other option, I paid 10 quid at a High Street walk-in-salon for a number three cut. It was an awkward experience. The stylist kept asking how short I normally have it. I kept replying that I had never shaved my head before, my hair had fallen out, I wasn’t rocking this patchwork design by choice. She asked again how short I normally shaved it. The number three was too long, she re-did it for me as short as she could. I was left with stubble, more like a movie prisoner than a cancer patient. Afterwards, in a burst of consumerism, I bought a bikini. Perhaps I was proving my womanhood.

  

The regrowth was almost worth the loss. It grew back fair, soft and downy much like it was during my infancy. People, not always acquaintances, would rub their hands through my luxurious stubble. The rate of growth was much like the rate of loss; gradual hair thickening, rather than constant regrowth. It was two months before I required a trim, three before I needed a full cut. All in all, I felt the regrowth post ABVD to be successful. My hair was easy to style, a pleasant hue, and not too thick. But, of course, I was destined to lose it all again.

When I began ICE chemotherapy there was more certainty in regards to hair loss. I was probably going to lose my hair. In medical speech, ‘probably’ translates to “about 95% chance”. I used the term ‘probable’ often when reporting blood films. No one can ever be certain. So I was going to lose my hair again with ICE, but when I would lose it, well, they couldn’t really say. Two weeks after my first dose I ran my hand across my head, a nervous habit I have, and it emerged with a fistful of hair. That evening, using my father-in-law's clippers, we shaved it right back. Two days later my head was smooth and shiny, just in time for summer. In contrast to the slow gradual decline of ABVD, the ICE hair loss was rapid and complete. Tidy, one may say, no loose ends.

The silky smoothness of ICE

The hair loss was uniform, and it grew back in a uniform manner. But the regrowth was not the same as it was ABVD. This time my hair returned dark, thick, and in some places, curly. Did I mention think? And explosive, especially in humidity. Apparently hair can still be explosive when it is short. It took about six weeks from the end of treatment before I needed my first haircut. I did not lose my hair with Brentuximab, nor with immunotherapy. For nine months I lived with a full head of hair, washing and trimming, like most women my age. My hair remained unruly, until it was time to lose it again.

I was lying upon the radiotherapy bed, amid brain malfunctions, lasers, and millimetre movements, when the consultant came in and ran her hand gently through my hair. A sympathetic “you’ll lose all your hair again” was met with a grunt of indifference. I had lost it twice already, I would not care if I lost it again. This time, however, I was much more concerned about my baldness. Radiotherapy hair loss was much like that of ICE. About a week after my first session, my hair started to fall out in clumps. Although my hair was short, it was dense, and there was too much of it to allow it to fall out ‘naturally’. Mike ran his clippers through, a number four. That evening we realised that four wasn’t short enough; there was still too much shedding hair, all course and irritating. We shaved it back as short as we could, then let the stubble fall out as is pleased, occasionally polishing my skull like a bowling ball. Patches of stubborn stubble remained, and for a while I looked a little ridiculous. I don’t know that I look any better now, I think I have just stopped caring as much. Radiotherapy hair loss is impractical. Chemotherapy hair loss is indiscriminate; yes I may have a bald head but at least I do not have to shave my legs. With radiotherapy, the hair loss is precise. So precise, that not only is leg shaving required, but also neck shaving. There is a small patch of fluff that did not fall within the radiotherapy field. If I don’t shave it I look like I am morphing into my wolf form. It has been two months since my radiotherapy and, if I close my eyes as I rub my skull, thinking neato thoughts, I can kind of imagine some stubble. I am aware that I may never have hair again. 

Brain radiotherapy hair loss

This time the hair loss was emotional, I think in part because my brain was mush and everything was a bit emotional, but also because it announced to the world my true identity again. I have been unmasked. I have lost my superhero disguise. One glance and, assuming my gender has been correctly determined, anyone can quickly sum up my situation. Baldness actually offers more protection in public. People are more patient, more considerate, however, I always feel more vulnerable. I bumbled along earlier about hair loss and control. Although control may play a minor role, the reason I focused on losing my hair was because it would be the most obvious change. To keep one's hair is to maintain one shred of normality, because the rest of your life has exploded. And, in my case, will never be the same. I know I cannot speak on behalf of men in regards to hair loss. My automatic assumption was that it would bother them less than it would a woman. Society, I thought, is more tolerant of a bald male. Most of the men I met in the wards were bald before their treatment. However some weren’t, and I was surprised when a few mentioned their distress at losing their hair. I guess for some men baldness is an everyday anxiety now brought to life. For me, baldness wasn’t ever something I needed to worry or think about.

But you know Liv, you can get a wig. Ah yes, wigs, an interesting concept. Both Britain and New Zealand offer free wig services to cancer patients. Cancer teams are quick to point this out, and rightfully so. From the outset, a wig was not for me. Despite the content of this post, I have never been hair focused. I do not enjoy styling my hair. I have always deemed hair fashion a strange social convention rather than a hobby or an interest. A wig would be difficult to manage, and I wouldn’t like to look in the mirror and see an unfamiliar image returning my gaze. Although I am bald, I still look like Liv. But I have seen patients transformed by their wigs. A young woman, perhaps twenty, was nearing the end of her chemotherapy cycles. This is a time when, mentally, things start to slip. Cumulative fatigue, infections, constant nausea; attitude cannot help but plummet. Her wigs arrived and she was a changed person. The different styles and colours revitalised her. Well, I mean, curing her cancer actually revitalised her, but the boost to her emotional state was massive, and in part due to a couple of wigs. So I am not saying that wigs are bad, I am saying they are not appropriate for me.

I am surprised how often non-medical people, people I don’t really know too well, are keen to inform me that I can get a wig. As if I had never been notified of this option, as if the thought had not been put to me. Some ask with excitement “Oh are you going to get a wig?” I do not mind that question so much, I get a chance to be a little philosophical and it is easier on both parties than talking about nausea or what have you. But others ask with a bit more force “Well, you know you can get a wig don’t you? Yes, yes, you can definitely get a wig” acting surprised when I reply that yes I do know, and no I don’t want one. Don’t get me wrong, I know the subject is difficult. I know that people do not know what to say to me. I know that there is no correct thing to say. In some ways, the wig question is flattering; it shows that someone is interested in my situation, that it is worthy of discussion. It is not their question that bugs me, it is their reaction to my answer.

I do appreciate a decent brain blurt. A blurt offers a rare opportunity to hear genuine thoughts, rather than false social pretences. It seems my wigless policy is unexpected, because often I get a brain blurt response. And sometimes, a brain blurt will show you an internal thought process you had no desire to know. “Are you getting a wig Liv?” Eager voice, leaning forward gently, excitement in their eyes, “Ah no, a wig is not really for me.” Abrupt posture pullback, “Oh….. well….. I mean, you look good bald, you’re lucky you didn’t have a giant mole or a misshapen head or something.” I do have a mole, and a weird brown stripe that runs across my head. A permanent tan line I think, from where my part sat for years. Neither of these were aspects of my baldness that bothered me. Nor was the prospect of a misshapen head. And I am sitting there, having an awkward conversation with someone I don’t really know, and I start to wonder if as a bald dying thirty-something I ought to be wearing a wig to make others feel more comfortable. I catch my reflection; no makeup, loose clothes to hide my puffy exterior, a set of gold studs to try and seem just a little feminine; my interlocutor, immaculately turned out. Do those who thoroughly groom themselves deserve more effort from me? Do they deserve a wig? Does a stray member of public who sees me one sunny afternoon deserve to be hidden from my baldness, protected on a Sunday from the horrors of the world?

No. First off, they are wrong, those who worry about misshapen heads. I have never seen a bald cancer patient who did not look beautiful. People say that I suit my baldness, but I haven’t seen anyone, man or woman, who doesn’t it. This anxiety is misguided. Secondly, too many illnesses and disabilities are hidden from society. Compassion, globally, is waning. Exposure may help. Let your children stare and point and ask honest questions, even wig related, they don’t embarrass me. Let strangers, adult strangers, ask as well. Because you do get some good questions, from complete strangers. At the beach, one woman approached me asking who had shaved me head. Did a professional do it, because her hair had begun to fall out just that morning and she wasn’t quite sure which hair removal approach was best to take. Another woman said to me “Sorry I am not staring” (she was staring) “my daughter went through cancer a few years back and seeing you reminded me of it.” These are nice comments to hear. When I was first diagnosed I found myself staring at others who had already lost their hair. I was imagining what it would be like for me. When one is staring, one is usually in thought. So in a way staring is better than the sudden drop-your-eyes-avoidance technique, a technique that is all too common.

With my wig policy now firmly established, what about hats? Well, hats are a practical issue. I have experienced baldness in both summer and winter months, thanks to our relocation across hemispheres. Not that one has a choice, but I think winter is easier for baldness. A layering of skull caps and woolly hats sufficed a Wellington winter; a New Zealand summer is a little harder to manage. It becomes too warm to wear a buff, I do not have the finesse to pull off a head scarf, and if I opt for nothing, I end up with a pink and peeling scalp. Sunburn, such a rookie error. So with buffs and woolly hats out, the only option is a sunhat. I must confess that here I am a little fussy. The first issue is size. Most hats are designed for women with hair. Most cancer patients do not have hair. I, apparently, have a small head. On more than one occasion I have been seen rushing around the children’s section of Kmart in a desperate attempt to find a bucket hat that fits. And doesn’t have glitter butterflies or monster trucks on it. No, a child’s hat is not appropriate. A straw hat would be ideal. It would protect the neck and face whilst maintaining some femininity. I have mentioned femininity a few times now, so I ought to take a moment here to elaborate. I believe this aspect of baldness is what bothered me the most. And I am annoyed that it concerns me so much. But this blog is honest and so I must openly admit that losing my femininity bothered me. I have never been overly feminine, a bit of a tom-boy, I tend to opt for comfort rather than fashion. Since I have been bald, I have put considered thought into my outfits, in order to resemble a woman. Why, I am not sure. Because it should not matter. This is an issue to ponder; a little insecurity, a little shallowness within me, that I did not realise existed. Or perhaps I did realise but had failed to admit it.

Anyway, back to the hat. A straw hat, for me, was the ideal choice. Protects the neck, the face, and it looks pretty. Just go out a buy a straw hat. Ah, but it is not that simple. I have already mentioned size; most are too large for the hairless. “One size fits all” my ass. And most straw hats are not lined. The straw from the hat stabs and scratches the sensitive scalp. It is too warm to wear a buff as well as a hat. Surely men have this problem too? It is really hard to find a straw hat with a lining in it. I feel there is a market here, if any hat designers happen to be reading this. Last summer, during my second baldness patch, whilst I was stressed and sulking, Mike found a hat in TradeAid. Straw, petite, attractive with a yellow cotton lining. Perfect! However, Liv left that hat in Apia during a particularly bad travel day. One of many hats Liv has left scattered around the globe. It is like my signature. If you see a stray hat on a bus, on a beach, in a bar, think of me. It is probably mine. This summer, I needed to find a hat rather quickly. Nelson is much sunnier and hotter than Wellington, I could not risk sun exposure. TradeAid did not have any in store, but fortunately online they did; not quite the same as last summer’s, but close enough. I still spent four hours wandering around town, stressed and frantic, trying to find a replacement. My advice is to go straight to TradeAid for your hat requirements.

I guess this is why I don’t write these posts too often. They tend to exceed the acceptable blog post length, and they tend to be terribly boring. I, myself, feel I ought to rub the drool stain from my chin, the mark of an impromptu nap. I know that with all the issues facing the world today, hair loss ought to seem trivial. It has become obvious after writing this post that it has affected me more than I had initially thought or admitted. And I feel bad about that.