The Blood of Others

The essay below is Olivia's final assignment for her Massey University Creative Nonfiction paper, submitted 8 June 2018. It's too good not to publish.

The Blood of Others

By Olivia Stocker

There are moments in life, where you pause, ponder, and conclude: I never pictured myself here. Thirty-two, swigging cough syrup in a craft beer bar bathroom, more Fentanyl onboard than Tom Petty, but the only dream worth running down is a bonus bowel movement. This wasn’t the plan.

The Blood

85, 87, 88. Those were our birth years. Three Johnson girls, each a different shade of blonde. Somehow, I had grown from my parent’s genetic mash to be in the back row of school photos. My younger sisters were always front and centre, half obscured by the class year sign they had the privilege of holding.

There’d be days of truly outrageous Pooh Stick battles and games of kick-the-can. In the evening we would huddle on a bed listening to Dad read a poem, or a chapter, or a story. Come bedtime, I would smuggle thirty-year-old Nancy Drew paperbacks under the duvet.  As my literary tastes thickened, and night-time antics were discovered, I would lie there imagining I was Batgirl or Buffy. I longed for a secret identity and super strength to save the world.

After school, we’d meet on the asphalt mini-ball court and Mum would walk us home. One day, Hillary had been off sick. Mum didn’t arrive to pick Antonia and me up. Hillary was in the hospital, her right eye puffed up like a nectarine with green juice oozing from its corner. She was only six, clever as clever, but I didn’t want her to stay six for ever and ever. I didn’t want to leave the hospital that night. How would I protect her if I wasn’t there?

I was never afraid of needles. Nor spiders. I was the one to burst forth and retrieve the daddy-long-legs from the strawberry scented Polly-Pocket house. I suspect, looking back, that neither sister feared spiders either. Needles, well, a phlebotomist once sparked Spiderman strength within Antonia. It took two adults and a Sylvanian Families panda to pry her from the waiting-room door handle. We played with our collection for hours that evening.

I recall the three of us crammed in a Mitsubishi backseat, proclaiming our aspirations for adulthood. I can’t remember what my sisters said, but I had decided I would discover the cure for AIDS. “No,” my mother said from the driver’s seat. “Not blood. You can catch things from blood.”

“If you had a superpower, what would it be?” I asked my husband on our second date. We were 17, supervising a junior school dance. He wanted to fly. But how do you help once you get there?

Perhaps it was teenage rebellion, or chasing a flying boy, but I did study Dracula’s drink of choice. Blood is red, white, and yellow in a centrifuged vial. Some cells are pink, purple, and blue, once dyed and examined under a microscope. Here I can see leukaemia and glandular fever; iron deficiency and lymphoma. Here I can see disease.

Blood is a transport system carrying oxygen, proteins, and hormones. It’s a defence system reacting to bacteria, virus, and foreign cells. It’s an emergency system responding to cuts, tears, and puncture wounds. Blood is a collaboration of cells and proteins, enabling the body to function.

I worked graveyard shifts in the Dunedin Hospital laboratory. Some nights, I would hear the battering of the emergency helicopter as it approached the roof. Its searchlight was like the bat-signal shining through the window. I’d tear myself from the microscope, power-walk to the Lamson tube, anticipating the urgent blood samples. In lieu of black leather, I wore a white coat. Unbuttoned and with a strong pivot-step, I could make the tail fly like a cape.

Enough of my incoherent rambling! I’ve stayed halfway up the nostalgic stairs for too long. In a story I have written elsewhere and don’t have the strength to rewrite; Michael and I spread our webbed wings and around the world we flew. There were labs in Brixton and Hampstead, and night shifts overlooking a cemetery in Fulham. In Worthing, with earnest learning, I added transfusion science to my gadget belt. But the belt slipped and kept slipping, as did my faded blue jeans.

Lymphoma, cancer of the immune system. Failed chemotherapy, a feverish 40-hour flight; we hung our broken wings in Hillary’s Wellington flat. I’m a snotty bald shivering mess, and I need a bone marrow transplant. The bone marrow. The birthplace of blood.

Each blood cell begins life as a stem cell within the bone marrow. Like a utopian child, it has the potential to be any type of blood cell, maturing in the marrow, and emerging full-grown, into the bloodstream. Intramuscular growth factor injections stimulate the overproduction of these stem cells, prematurely forcing them into the real world, where they are captured in a bag by apheresis, frozen, and preserved.

This allows oncologists to blast the body with high-dose chemotherapy, killing the cancerous cells hiding within the bone marrow. The captured stem cells are then infused into the bloodstream. They find their way to the empty marrow and, like Californian suburbia, clone and multiply, restoring the blood and immune system. These cells may be your own, but they’re more likely to be the cells of others.

There’s a catch. The donor cells need to be genetically similar, HLA matched, otherwise they will munch the recipient's organs like Pacman who has eaten all the ghosts. The genetics behind HLA marker expression are complex. To save you from my excitable nerdish description, the US National Marrow Donor Program sums it like this:

You have many HLA markers. Half are inherited from your mother and half from your father, so each brother and sister who shares the same parents as you has a 25% chance (1 in 4) of being a close HLA match.

So my sisters have the highest chance of HLA compatibility. If they match me, they could donate their stem cells. Those stem cells could cure me. It’s showtime Synergy.

The Others

When I fell ill, there were offers and gifts abound. Scarves, hats, magazines, adult colouring-in books. Everyone wanted to help, unaware of my super-hero alter-ego. Or just my ego. Both my sisters offered me their eggs for the future. I hadn’t even thought about infertility. Antonia, now an Edinburgh based behavioural analyst who runs ultra-marathons for fun, accompanied me to a chemo session in Brighton. During my cannulation, she hippity-hopped from foot to foot, swayed a little, her blue eyes rolling to white. Hillary, my tiny little sister with her Kirsten Dunst smile, how was I to ask for their help? How was I to ask anyone?

I don’t remember how, but I remember emphatic affirmatives from both.  They never questioned how their health might be affected. Antonia admitted her needle phobia was irrational. Exposure therapy was the best way to overcome it. She began accompanying her husband, Scott, to his regular blood donations. “The nurses were more worried about her than me”, Scott recalls. She WhatsApp’d me one morning “It’s just spit! Scott’s signing up too”. Anthony Nolan, a charity managing a UK bone marrow register, had mailed her their testing kit. All they needed was her saliva. In Edinburgh, Antonia spat into her container. In Wellington, Hillary had six vials of bloods drawn. Now, we wait.

Spit. Anthony Nolan. This seemed familiar to me. In London, prior to a mandated NHS heavy-lifting course, some enthusiastic commissioned young presenters had asked for my saliva. I was a shelf deep in Orwell paranoia and couldn’t get a clear understanding of why their white smiles wanted my DNA. I vowed to look into it when I got home. But I never did. With frozen tissue specimens in labs around the world, my HLA profiled for my own purpose, and both parents on AncestryDNA, I reflect on my selfish paranoia almost every day.

My friend Amie had not been so paranoid. We first met in a cupboard designed to be a staff room at the Royal Free Hospital in London. She was reading aloud an absurd Rush Hour Crush printed in the Metro ‘newspaper’. I still think she may have written it herself. We were fast friends, and I was her virtual bridesmaid. In my mind, I was a Hologram. Amie spat into a cup for a free pen during her first-year O’Week, over ten years ago. Her aim at the time was to obtain as many free pens as possible. In 2017, Anthony Nolan phoned her. She was an HLA match for someone in need. Was she still able to donate? After a complete health check-up, four days of injections, and some mild bone pain, she was attached to a machine for six hours via an IV line and captured her stem cells for a stranger.

During those six hours, she recalls “I found myself wondering about the recipient and willing my collection to be bountiful. It was a very humbling experience and at times both happy and sad.” She is allowed anonymous communication with her recipient through Anthony Nolan. If the transplant is successful and both parties agree, they are permitted to meet after three years.

In Wellington, my HLA results are complete. Neither sister is a suitable donor. Hillary matched half the markers, Antonia none at all. “They said it would be harder if I didn’t match,” Antonia said between sobs when I called her. Hillary, at the time, appeared unphased. Now, when I ask her about it, she replies “I think about it still. Being only a 50% match really sucks. I felt guilty that I couldn’t donate. I feel guilty about your disease.”

In an interview for People magazine, Robin Roberts, a Good Morning America host, spoke of her transplant. Her sister, Sally-Ann, was her donor. Robin’s mother made her promise not to favour Sally-Ann over her other siblings.

A fellow haematology patient was relieved one sister matched over the other. He didn’t want to ask ‘that bitch in Australia’ for anything.

Neither of those responses has ever crossed my mind. When my sisters offered their eggs, I wasn’t going choose which sibling to accept. Make it random, or both even, a nice nature vs nurture experiment.

The New Zealand Bone Marrow Donor Registry (NZBDMR) states “70% of patients do not have a suitable HLA matched related donor.” Aside from mismatches, there are only-children, even children themselves in need. Registers are searched to match unrelated donors, and I did have a match. Just one. A woman in Germany.

Why Germany? I knew Anthony Nolan recruited anyone who chanced upon a heavy-lifting course or a fresher fair. Just spit into the cup. Why did New Zealand feel they could rely on Germany? I, Negative Nancy Drew Buff-Girl will bust this conspiracy wide open and implore all Kiwi to donate.

I began investigating the NZBMDR website. Skipping the promotional material, I downloaded their guidelines and read:

NZBMDR is funded to recruit males with Māori or Pacific Island ancestry. Other NZ ethnic minority groups may also be recruited.

The preference for males I understood; antibodies can cross the placenta during pregnancy complicating the donor-host relationship. If funds are limited, it makes sense to restrict the registry to men. But why are funds limited?

I delved into websites and journals. There were diagrams and arrows, and a spiral maze of acronyms resembling a Pynchon novel. I focused on finance, cursing our past blue government. I was about to bombard the Ministry of Health when I came upon the World Marrow Donor Association, a collaboration of 53 countries and over 27 million donors, targeting diverse demographics to expand the chances of unrelated matchings. Germany has 10 separate registers. The UK has six. There are millions of European donors. New Zealand, with its single registry, has around 12,000 donors. 75% are of Māori or Pacific Island descent. My pākeha heritage allowed my donor to be from Germany, others aren’t as lucky.

In this post-Trump, post-Brexit world, I was relieved to find a giving global network. Although I cannot implore all to donate, I encourage anyone with exciting heritage to donate blood and mention the bone marrow registry when you do so.  The blood service and marrow registry are linked. That was part of the spiral. See www.bonemarrow.org.nz for further details.

I never received my stem cell transplant. Relapse morphed into disease progression that no dose of chemo could cure. My secret identity is exposed: I’m super weak, reliant on others. I’m unable to save the world.

Works Cited

The National Marrow Donor Program [US]. “HLA Basics”. The National Marrow Donor Program. Web. May 2017. [www.bethematch.org/transplant-basics/matching-patients-with-donors/how-donors-and-patients-are-matched/hla-basics/]

Anthony Nolan. “Who we are”. Anthony Nolan. Web. 28 April 2018. [www.anthonynolan.org] 

Parkes, Amie. Personal email correspondence. 2017.

McLaughlin, Hillary. Personal interview. 2018.

Roberts, Robin. How love saved me. By Sharon Cotliar. People. 28 April 2014. 74-75. Web. May 2018.

Blacklock, Hilary et al. “NZBDMR Standards”. New Zealand Bone Marrow Registry. Sections 1 and 4, 2017. Web. [www.bonemarrow.org.nz]

World Marrow Donor Association. Multiple pages visited. World Marrow Association. Web. May 2018. [https://www.wmda.info]  [https://share.wmda.info]

Works Read

Collins, Graham P. et al. “Guideline on the management of primary resistant and relapsed classical Hodgkin lymphoma”. British Journal of Haematology 164, 2014, 39–52, Willey Online Library. Web. 28 April 2018.

Norfolk, Derek. Handbook of Transfusion Medicine. 5th Ed. Norwich: TSO, 2013. Print.

Groopman, Jerome. “A Healing Hell.” The New Yorker 19 October 1998. Web. April 2018. [http://jeromegroopman.com/ny-articles/BoneMarrowTransplant-101998.pdf]

NZ Blood Service. Multiple pages visited. NZ Blood Service. Web. May 2018. [www.nzblood.co.nz]

Works Borrowed

The Blood of Others - Simone de Beauvoir

Truly outrageous - Jem and The Holograms

Six, clever as clever ... stay six for ever and ever - Adapted from A.A. Milne

Halfway up the stairs - A.A. Milne

It’s showtime Synergy - Jem and The Holograms

Olivia (Liv) Stocker 1985 - 2018

Olivia (Liv) Stocker, the girl who just wanted to save the world, died on Sunday 15 July 2018 at home in Nelson, New Zealand, in the care and company of her husband, Michael (Mike) Stocker.  She was 32.

Liv, the bibliophile, blood scientist, budding writer, devoted sister and friend, will be best remembered for her fear of peacocks, like of a beverage or two, dislike of Carmelo Anthony, incredibly strong will, ability to pull off a stunning red dress, captivating personality and beautiful smile.

In an age of groomed images, she was a natural.  With the tendency to comfort over fashion, Liv had the careless dignity of someone too preoccupied with serious matters to care what she looked like on a day-to-day basis. She just wanted to be herself, and for others to feel they could do the same. 

Born in Nelson, New Zealand, Liv grew up with her father (Haydn Johnson), mother (Ann Johnson, née Coughlan), and two sisters (Antonia and Hillary) always close by.  Haydn would read A. A. Milne to her at night. Not just Winnie the Pooh, more his poems.  It stuck with her and remained one of her happiest childhood memories. 

Driven by her Johnson genes, Liv was a lover of all things words - literature, usage, puns and swears.  She never went anywhere without a book bag containing a paperback modern classic and a dog-eared notebook. Compelled by her mother’s genes, she was an unashamed ailurophile (a lover of cats) - always on the lookout for a friendly feline to befriend (for those wondering, sadly Piper never returned home). 

Despite being a self-professed book nerd, Liv was a tom-boy by nature and preferred sports (cricket, cross country running, basketball) over the accepted pastimes for a pretty young girl with long blond hair.  The sporting endeavours eventually slowed down, but the bookishness never did.  Liv completed all of her schoolings within the quaint confines of the Nayland Road Stoke series of schools and excelled in both Science and English along the way.  High school brought with it the usual teenage angst, but Liv emerged as a strong young lady with some excellent lifelong friends, a taste for punk rock and Buffy the Vampire Slayer (anything Joss Whedon really), and a boyfriend named Mike.

The influence of a particularly inspiring High School teacher eventually tipped Liv’s academic focus towards the sciences.  Liv challenged herself to first-year health science at Auckland University before reuniting with Mike in Dunedin on the pretext that Otago University offered the desired Bachelor of Medical Laboratory Science; a courageous move that was undoubtedly the best decision of her life (although the writer may be a little biased on this point).

Graduating with credit in 2007, Liv started her medical science career at Dunedin Hospital and thrived under the tutelage of some excellent mentors.  Blood film morphology soon became her speciality, as did night shifts - a position she often preferred to minimise social interaction and maximise the opportunity to rock out to her own tunes.

Biomedical haematology science was Liv’s calling, her vocation (but not in the religious sense - that definitely wasn’t her), and one that she approached with a determination to do the best for her patients.  Liv once wrote: 

“A name and a date of birth were enough to bring forth an image of a living, breathing person, and I formed emotional attachments to many of the patients, especially the regulars, despite never meeting them.” 

A colleague recently recalled that “working nights with her in Dunedin was probably the most fun I've ever had at work, and she is still one of the best scientists I have ever worked with.”. 

An eighteen-month stint at AgResearch’s animal Genomnz DNA Testing Laboratory near Dunedin was enough to turn Liv vegetarian (a conviction she never willingly strayed from).  Liv was quickly directed away from the “proper” farmers towards those of a more natural rapport - the alpaca and highland cattle breeders who named and petted their animals.  The successful career move lifted Liv’s confidence and added another set of lifelong friends to her growing list.

Liv and Mike married on 30 January 2010.  “I Wanna Grow Old With You” by Adam Sandler was read at the service.  It was a bloody good night.

Departing Dunedin in search of adventure (another courageous move that Liv later admitted never seemed like a possibility), Liv took one for the MikeLiv team by literally taking on a shit job (a technician position at a London lab weighing poo among other biological samples) while waiting for her HCPC registration to be granted - a mere formality, but many months in the making (don’t get her started on the Kafkaesque bureaucracy of the British health system) - before settling in Brighton, England.

Liv explained the move as: 

"In 2011, while our friends were in family making mode, my husband and I packed up our smallish life savings and joined many fellow antipodeans in the UK. We came for the work experience, the multiculturalism and the proximity to Europe. Aotearoa is four hours from anywhere, Britain is nine hours from everywhere.  The experience I have gained through working in NHS haematology laboratories is undeniable. Every day cases in Britain would warrant popup conferences in New Zealand. The plan was to return home and pass on my experience. Healthcare knowledge should have no borders."

Liv successfully navigated the spectrum lab rats (the stereotypes are real) to become a UKIP / Brexiteers’ worst nightmare - a hardworking, overqualified, foreign-born locum propping up the overstretched NHS.  Terrible.  Eventually, the two hours each way commute from Brighton to London became too much, and Liv settled into a permanent position at Worthing Hospital with a joint speciality in haematology and transfusion science. 

The Brighton years were undoubtedly the happiest of her tragically cut short life - filled with lazy days sipping long black coffees, solving the world’s problems over pints, hanging out with workmates, hosting friends, and reading on the train commute (again, don’t get her started on the reliability of the British train network).  When the otherwise inclement Brighton weather permitted, a perfect day entailed taking a picnic of French cheese, a baguette, and a bottle of Cava (the budget having already been blown on the cheese) to a nearby park for a chilled day of people watching, philosophising and reading. 

Interspersed with these lazy days were many trips throughout the UK and further afield.  Liv grew so much from seeing and experiencing other cultures.  A perfect day of travel entailed crisscrossing a European metropolis on foot, taking pit stops at modern art galleries, craft beer bars, second-hand bookshops, and bakeries along the way.

Pit stop time?

As these experiences accumulated, Liv grew into a complex and compelling person to be around with a strong sense of self.  She once described herself as “a bit dark, a bit cynical, left-wing, over-analytical and therefore indecisive, inappropriate, and a little scared of children”.  She was certainly a dark horse - once winning a Texas Hold’em pub poker league and an all-expenses-paid trip to Melbourne in the process.  Rather paradoxically, she also held a secret liking for real crime documentaries while simultaneously despising “who done it” crime fiction books with a passion.    

Liv understood what it was like to feel like an outsider and took it upon herself to nurture others, even throughout her angsty teenage years. A people pleaser by nature, she felt a strong empathy for the disadvantaged and oppressed and looked at the world with idealism and an instinct for how things should be.  This conviction was not easy for her.  It often boiled over into anger, even rage, when confronted with the cynics, incompetent, uncaring and wilfully blind among us.  This gave Liv a reputation for being as feisty as she could be gentle. Well known for her explosive rants in and out of the workplace (and on the basketball court!), she wasn’t shy about calling out hypocrisy, injustice or frustration inducing ignorance when she saw it.  At times she had the impulse control of Leela from Futurama.  In this sometimes blunt way, Liv had a knack for fostering introspection in others.  A catalyst for change, she encouraged others to front up to that big decision they had been pondering over.  Relocations around the world, job changes, re-training, perhaps even a marriage or two, all owe a debt of gratitude to Liv’s free, determined and clear-sighted advice. As Liv said, “Finesse is not really in my repertoire”.

Despite Liv’s success in practical science, her real passion lay in written words and the minds of those producing them (her Goodreads library records more than 200 completed works). Liv read to transport herself to another location, another time, and most importantly, to another mind (as only the great writers can achieve) - Camus, Orwell, Hemingway, Atwood, Vonnegut, Mansfield, Marquez, Deborah Levy, David Foster Wallace, to name just a few. She was particularly drawn to the reflective self-conscious style of stream of conscious writers who could confront the existence of contradiction within society, and themselves, with honesty. These writers were Liv’s kindred spirits.

Liv would have hated being referred to as “a writer”.  However, the characteristics she praised in others were certainly present in her own writing. Given more time, something remarkable would have come from Liv’s creative side, if it hasn’t already.  Those who read Liv’s blog and other writings would agree she had a gift for sentence craft, including this cracker: 

“My consultant informed me he was rather impressed with my blood. I blushed.” 

Liv’s blog is now a tangible legacy, a window into her ailments (both physical and mental), the banal and the profound.  Liv acknowledged that her situation was by no means unique, and just wished to reach out to others to show them they were not alone.  Her blog had many purposes - a guidebook, updates to friends and family, reflective learning, public therapy, popular science - but at its best, it offered a stream of conscience from a mind in a place none of us would wish to be.   An opportunity for her readers to learn, to grow their empathy and understanding.

Returning to New Zealand in July 2015 and unable to work due to ongoing treatment, Liv directed her energies towards amateur biomedical science (with herself as the sole patient, forever scrutinised), volunteering for the Red Cross Refugee Resettlement Programme (supporting families from Bhutan, Myanmar and Colombia), tropical island holidays (including some risky volcano viewing and reef diving), blogging for her dear avid readers, exploring New Zealand like a foreign tourist fresh off the airplane, and hanging out with her sisters and friends (and doing her best to correspond with those further afield). 

All the best things in life at once

Liv also took the opportunity to further her studies, completing online and distance courses, and amazingly, enrolling for a full-time post-grad diploma in creative writing via Massey University starting in February 2018.  Liv achieved excellent grades (studying far too hard like a true mature student) notwithstanding the slight handicap of periodic radiotherapy treatments, blood transfusions and hospice stays.  Liv insisted upon attending her final Twentieth Century Literature exam despite looking rather frail on the given horrible winter day.  The results came in at a respectable “B”, and also haemoglobin in the low 80’s… Liv wasn’t finished there.  Liv discovered that she’d received an “A” for an essay on a Thomas Pynchon novel (The Crying of Lot 49) that she never submitted (for several reasons, including her health and Piper’s disappearance, despite having poured over the book for weeks).  “It’s a compassionate mark Liv, one you know you could have easily achieved in better circumstances.  Just take it. You deserve it.” friends and family said.  But no.  Liv would not allow one of her final acts to be one of dishonesty.  She made us promise that the official record would be corrected.  The promise has been fulfilled.

Lymphoma and stubbornness aside, life wasn’t always easy for Liv.  She suffered bouts of crushing anxiety throughout adolescence and early adulthood fuelled by self-doubt and an overwhelming desire to please others.  This anxiety always bristled below the surface, and despite her aspiration for frankness, inflicting discomfort or wounds on others (whether real or perceived), even if to correct a wrong in worldview or actions, inflicted a wound of many magnitudes more on herself.  The conflict within her was potent, sometimes all-consuming.  Liv expended tremendous energy merely to appear normal, to get through the day and its social interactions with her conscience intact.  However, in doing so, she gave so much warmth and benefit to those who sought out her company.  People often said how strong Liv was for living with her illness for so long - and she undoubtedly was.  But her real strength was in managing this internal conflict, living the absurdity of life, carrying on in the face of ever-increasing obstacles, yet somehow remaining sanguine in the process while the rest of us caught up. 

Liv’s writings reveal this underlying character, and the struggle within, with elegance and a level of honest beyond many (and with liberal use of wit, humour and puns to top it off).  Liv once said “I need a distinctly set level of despair in order to trigger my creative ambition.” and her writing certainly yielded an unpredictable reward schema only slightly less addictive than the opiates she relied upon.  Liv’s prose became an essential outlet for not just her creativity, but also her outpourings of dysfunctions, neuroses and emotions.  Her audience, including those of the anonymous internet and depths of her unpublishable black book scribbles, provided a confidant, a punching bag, a pun receptacle or whatever it was she needed when the words began to flow.

Despite being ill, Liv’s death seemed impossible to those around her.  Her strength unending. However, Liv confronted her mortality and the contradictions of living head on: 

“But I believe Camus. I believe that in order to continue with the absurdity that is life, I have to try to make it better for others. And how do I do that? How, when my master plans required decades, do I condense them into a couple of months? By writing? By voting? By traveling, giving my money to remote communities, corrupting them with my Western ways? Really all I am doing is what I want, feeling guilty about it, and then attempting to justify my behaviour.” 

So what did Liv want from us?  Only to be affected, moved, touched, to be better, do better, whatever that may mean to the individual - question long-held beliefs or assumptions, properly listen to and try to understand someone, expand your mind, plant a tree, make that long procrastinated change, just challenge yourself to be a better person.  Liv never wished to hurt or wound, and certainly didn’t want anyone to be burdened by guilt.  She went through all this pain so that we didn’t have to, and her legacy lives on in those she touched in this way.

Liv may not have saved the world, but she certainly made it a better place.  It breaks my heart to have Liv’s drive and talent cut short, to be denied her companionship and intellect. I will miss you forever Liv and love you more than I ever could show.

Liv was farewelled, at what can only be described as a party, at Rhythm and Brown, a favoured drinking spot where she spent many late hours. Liv’s ashes were scattered in the forever changing sand dunes of Wharariki Beach, to blow carefree in the wilderness while the rest of us carry on her good work.

Regret

Through my negligence, our arthritic three tooth tiger is gone. This may appear trivial, but I can assure you the pain I feel is not. Nor would be the pain Piper experienced; cold, alone, hungry, scared. 

Feb 2017

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.