Mushy peas

I know I promised this post would be more positive than the last. I am afraid I cannot keep

that promise. This post is again selfish. It is for me to vent, to dwell, to wallow in my own self pity. I am writing this to get the words out of my head. And my brain remains as mushed as a side of peas, so none of this is likely to make any sense. Continue at your own risk.

When I presented at Wellington Hospital in November with my crooked tongue, I was required to switch steroids. My steroid of choice is Prednisone. I’ve grown fond of it over the past year, and the dosage I was on (15mg) gave me all the Prednisone-goodness, without too many side-effects. I will complicate things here and say that because I am on immunotherapy, I ought not to be on steroids at all. Zero steroids is the aim, but well, they’re just so darn helpful. So roid me up. Anyway, presenting to a hospital with neurological symptoms gets the doctors a little nervous, so they switched me to Dexamethasone. Apparently Dex is like the go to steroid for reducing brain inflammation. Apparently I had brain inflammation. The neurological symptoms also meant that my nice low steroid dose was about to be upped. And boy did they up it. I am really quite susceptible to steroids, and my consultant knows that, but he was away and so they just prescribed the highest dose available, which is the equivalent to 100mg. I’m tweeked out at 60mg; at 100mg, my goodness.

Sleep was off the agenda. Food became a major focus. Then it became an obsession. It was exhausting. It started out fun; a little like ‘yay I can eat whatever I want, whenever I want, almost unreasonably.’ Then the ‘almost’ was dropped and it became simply ‘unreasonable’. I was knocking back six or seven meals a day, with snacks. I became fixated on food. I was lying on the couch, overfull, bloated, yet obsessing over the ice cream I knew was in the freezer. If I eat that ice cream I am going to feel terrible. But I want the icecream. I know, I will have just a small serving of ice cream. That will work. But our bowls are so big, and it was boysenberry ice cream, so I ended up with three scoops. One morning, I consumed an entire packet of TimTams in ten minutes. That is less than a minute a biscuit. I was going to dip them in my coffee, but there just wasn’t enough time to brew the coffee. No time for coffee! That was after my four AM cream cheese bagel. Let us just say that it was an expensive few of weeks. Now I can’t remember if we’ve got snacks in the house, and even if we did, I can’t taste anything except Habenero sauce (another radiotherapy side effect). Thankfully, the steroid dose has dropped, and my food fixation has passed.  

Unfortunately, three weeks of binge eating really plays havoc on one's weight. My face is round and puffy, like a partially deflated beach ball that has spent too many summers outside. I’ve lost almost all my hair. This, again, is due to the radiotherapy. It causes hair loss at the targeted site, and because my whole head was targeted, I got to lose it all. It fell out one afternoon while the cat sat on my knee. She finally got her comeuppance. Some stubborn patches of hair remain, which is uber attractive. Plus I have some wicked acne, perhaps caused by all the junk food. I am looking gorgeous for summer. But don’t worry, I did spend like an entire hour deliberating an eyebrow wax. I decided no. Nobody is looking at my eyebrows.    

That just leaves the brain mush. The fatigue. My brain is so slow. It is too slow for everyday life. Everything has become so difficult. It is like 90% of the batteries that provide my mental energy are exhausted, so I am running on just a tiny energy store, and I can only give a minute portion to any task. I sit at a cafe, and a sharing plate comes out. Ciabatta and balsamic and dukkah. Simply eating requires considered effort. My deliberate thought process is thus: OK so person A has finished reaching for the bread, and person B is reaching for the dukkah, so I can reach now, I need to move my arm straight out and take the bread without bumping anyone and now I need to stretch to the balsamic and, opps, balsamic was thicker than I thought and I have spilled it, and oh oh my hand is shaking, no that’s ok, it has steadied, right so the bread is in my outstretched arm, so I need to bring my arm towards me and lift my hand to my mouth. Ah fuck, I just dropped everything on my white top. It required immense energy and mental thought to reach for some bread, and then I messed it up. Which is fine, if I can laugh at myself, but it is extremely frustrating and sometimes I cry. In public.  

My personal deficiencies are amplified in my current state; things that I have never been good at I simply cannot do. I've never been good in social situations. It takes a lot of background effort for me to know what is socially appropriate. When to talk about certain issues, where to stand so that it doesn’t impact on others, how to sit at a dinner table; all this requires quite a bit of thought from me. And often, even before this brain mush, I'll catch myself doing something antisocial, like putting my finger in my ear. Now, I cannot do two things at once so if I am listening to somebody, I can only think about what they are saying. I cannot think about my posture, or my elbows on the table. I cannot eat, or even contribute to the conversation. My verbal communication was always poor, now it is pretty much absent. I am unable to formulate responses fast enough for society. Basically, guys, I can no longer rant. I can no longer listen to a rant, I can no longer contribute to a rant. My brain is too slow. For three weeks I could not concentrate enough read. Writing, fine, I have a lot of internal dialogue, background brain noise if you will, so I can pen my own jumbled thoughts. But reading was pretty much impossible. I had pretty much lost my brain.

There have been instances where I could not communicate at all. I forgot how to form the words. These instances were short-lived, only a few minutes at a time, but I’ll confess that I panicked. A quickening of breath, more tears. All I wanted to say to those around me was that I couldn’t think, but I didn’t want anything and I was happy and grateful that they were helping me. Instead, I hyperventilated and cried. I was finding life amazing, but I relied on others to think for me, to fully care for me, and I felt I couldn't communicate with them. This was more than merely accepting that I needed to ask for things, I actually had to think to ask for things. And then I couldn’t remember that I was required to ask. Does that make any sense?

It turns out I had a pretty good memory. It turns out I relied on my memory to exist. Once I lost my ability to remember, to tell the time, to do math in my head, I became aware of how others think. Because they were thinking for me, I began to understand their thought processes. During a public meltdown involving an op-shop Xmas tree and three decisions, I received a moment of true empathy from a stranger. She looked at me with raw sympathy and said “Oh, you’re really tired aren’t you? I get that way sometimes. Here, sit down.” There is a difference, you see, between understanding and empathising. Up until now I'm not sure that I have ever empathised. I mean, I would get sad if someone else was sad, and I would be sad for somebody, but I never really stopped and took a moment to get inside their mind. I have become aware of how intolerant I was, how particular I was, and how I never tried to understand let alone empathise. I am lucky that I now realise this, and that I have the opportunity to change. I need to maintain this compassion. Feel free to remind me that. And if you see somebody dithering in the street, or faffing (I can’t tell the time so I have become a faffer), it is probably because they cannot remember, or because the world around them seems a little too fast.

How am I coping? Well, to be honest, for the first couple of weeks I wasn’t. I spent a lot of time worrying that I would forget something, or worrying that I would be unable to do a task, a walk, a social outing. But, after some inspiring words from Mike, I have learned to adjust. My brain is slow, yet I was trying to live as if it functioned normally. I was asking those around me to slow down, but I needed to slow down myself. It all amounts to effort. I can remember, it just requires a bit more effort. I can communicate, I just need to think, think real hard, before I speak. I can cook dinner, it just takes a little longer and requires a bit more planning. It is very easy to rely on others, to submit, but if I do that then my memory will get worse, and I will become lazy. Effort is the key. Increased effort brings increased reward. I’m beginning to understand that it is permissible to forget; a grocery, a day, a thought. That is acceptable to fail; the reaction to the failure is more important than the failure itself. I am so fortunate that I have had an opportunity to slow down, to experience what it is like to live with a poor memory, with poor concentration. To understand how difficult a large portion of society must find everyday life. Mike and our families have been amazing through this period; my revelation has come at their cost. I guess all I can do for them is to maintain this tolerance and relaxed attitude. Because my brain function is returning, the loss is only temporary, the worst has past. Others do not get that luxury. Let us hope that I can remember this experience.        

Oh, and just a little bit of science for those interested. What I now have is termed central nervous system (CNS) lymphoma. It is rare in Hodgkin’s patients, and different to primary CNS lymphoma because it did not start in the brain. The haematology team speculate that the cancerous Hodgkin’s cells have invaded the CNS via the bone, thus avoiding the blood brain barrier. The brain and nervous system have a protective barrier separating themselves from the blood. This barrier is pretty selective as to what it allows across. Most medications aren't permitted, nor my pesky Hodgkin's cells. It is also why meningitis is so bad; the immune cells can't get into the CNS to fight the infection. My cancerous cells were pretty much like El Chapo Guzmán tunneling under a Mexican prison wall. Fun times.  

Brain washed

I think I need to disclaimer this one before we begin. My brain is shot, you’ll find out why shortly. Typos are inevitable. Enjoy.

Since July, I have had two cycles of spinal radiotherapy. There were tumours and deposits nestling among my spine, their metastasising tentacles playing havoc with my nerves and really causing an awful lot of discomfort. The radiotherapy helps. It removes the pain, and my life has continued with only the minor drama of figuring out how to continue it.

So success, I would say, radiotherapy has been successful. Certainly for quality of life, despite the rampant fatigue follows. It is a tiredness so numbing that I forget the cause of it. Usually, I end up curled up on the floor in a tight little ball sobbing “why am I so tired?” And Hodgkin’s lymphoma is rather susceptible to radiotherapy, so I am fortunate that I only require five days of zapping at a time, at a rather low ‘dose’. Others must suffer far worse than I.  But despite my low radiotherapy dose, the spine itself has a limit as to how much radiation it can receive. After my September zapping I was reaching that threshold. If, or when, the spinal masses return I’ll need to increase my pain tolerance, because I won’t have the luxury of further spinal radiotherapy.

This means I have been having a little trouble trying to ascertain which symptoms I ought to be reporting, and which are just little niggles that become over-hyped in my obsessive anatomical monitoring. I mean nobody wants to hear about my bowels. Although, as a side note, the hospice has quite a helpful pamphlet on the issue, with tips on toilet posture and breathing. Anyway, despite over-monitoring, the biggest issue I have is admitting the symptoms to myself. A little bit of courage is required to mention that this stiff neck that I have had for four weeks or so, has now morphed into a two week headache. And the headache is starting to wear me down a bit. Maybe, maybe I should have reported that. It wasn’t until my tongue refused to obey my commands when chewing or speaking that I thought some symptoms may have gone a little far.

The hypoglossal nerve is a cranial nerve which runs from the brainstem, through a canal, before linking back into the spinal cord. It only deals with motor-function. If the nerve suffers pressure, from say a lymph node, the tongue tends to stray to the affected side. Right now, if I were to poke my tongue at you, it would skew to the right like a cartoon puppy. If I were to read to you, I would have the slur of a cartoon cat. Rather comical really. If it were caused merely by a lymph node and if the bloody pain would go away.  

A hospice nurse calls me once a week, just to check in and what have you. I am still acclimatising myself to the hospice system. Most of the time I am too healthy to require any services, except perhaps emotional ones. And I am quite young within the Nelson community as a whole (Hospice aside) so am not really sure where I fit in. But they call, and they are always there, and that is possibly all I really need. For some reason, the day the nurse called, I was sore and restless and maybe feeling a little bit brave, so I mentioned this neck pain and unruly tongue. It turns out that puppy dog tongues aren’t so cute, and Looney Tunes has fallen out of fashion since we all grew up and realised the entire show was casual racism. Or just flat out racism. Even in this post-Trump world, my new facial expressions and lingo just would not do.

It is odd how things then escalate. I wouldn’t say that it was panic, it was more rush. I have fortnightly immunotherapy trips to Wellington. Every second Tuesday. This call was on like a Thursday. I had been sitting on these symptoms for a couple of weeks. It made perfect sense to me just to wait until Tuesday. But no. Whizzed up to Wellington A&E on a Saturday, admitted into the ward to wait for a MRI scan. Although I was pretty jolly healthy, all things considered, I needed to be an inpatient to get the scan quickly. Otherwise I would be waiting weeks. It seems an odd system. We found ourselves in one of those teeth-clenching, tweeked out situations. Rush, rush. Wait, wait, wait. Earthquake. Rush. Wait. Scan, wait. Results, rush. Wait. I am sure you get the picture. I am simply terrible under those circumstances. The air turns dense, forcing itself upon my shoulders, my arms, and my legs. I was a wreck. It wasn’t the fear of the scan, or the results, or the implications, it was merely the unknown. The rushing, and sitting, and rushing and for what? I found myself in a space where I was desperately trying to pass time. Yet time is meant to be so precious to me. I guess I lost the ability to enjoy the time I had available. That can be dangerous.

Scan results always come with decisions. In an ideal world, my nerve was merely being pinched by a lymph node. But it does not take more than a quick gaze at global events to realise that the world is falling apart, and I am unsure if I even understand what the word ‘ideal’ means anymore. We were again in a rush situation. It seemed I had to make an on the spot decision as to treatment right there in the ward, the fifth floor ward, swaying with the frequent aftershocks. This is kinda how it went down for me. So, well yes there is a lymph node involved, but actually the pesky bloody lymphoma has found its way into the brainstem. Shit. The upside, my symptoms replicated what they were seeing on the scan and targeted radiotherapy would, at the very least, stop progression. Ok, cool, targeted radiotherapy to the brainstem. I can do that. Yup, fatigue for a bit, but not too long, sure, yup, I’ll do it. Hmmm, but yeah there is something else. There is this other patch, on the scan, unrelated to your symptoms. It isn’t quite in your brain yet, more in the membrane around your brain. But it is close to your frontal lobe. Huh. So the options you have are to target the sight causing the symptoms, or, entire brain radiotherapy to remove any other cancerous cells. Entire brain radiotherapy will leave you with at least six weeks of chronic fatigue, fatigue you could only dream about. If you are lucky enough to dream. Targeted radiotherapy will give you far less fatigue. Decision please? My Scottish sister clutches her chair as a larger aftershock hits. She is out of practice.

I won’t draw it out any longer. The decision switched three or four times as the differing medical teams decided which option was best. It was ten minutes before my planned radiotherapy session when Mike and I found out how much brain was going to be zapped. Whole brain radiotherapy was the answer. It would be too difficult to match symptoms if the lymphoma breached the brain membrane in the future. Best to get rid of all the cells now, you’ll get to enjoy the rest of your life with a numb brain, but hey, at least you’ll keep your vision. And it will lower the chance of a stroke. And the numerous other benefits of keeping Hodgkin’s lymphoma out of the frontal lobe. Really, it is a no-brainer. Groan away.

So now I have had my brain zapped, five times, which is nothing on what the poor bastards with brain tumours have to go through. A few guys I have met were doing it for six weeks. I am in awe. I honestly feel like my brain has been pureed. My thought processes are so slow that it feels like the world is on fast forward. Most of the time it is amusing, like a trip or something, and I watch the world spaced out, boggled by the smallest of incidents. But then I am required to do something tricky, like say words that make sense, and I freak out a bit. All of the brain guys are going through worse than me, far worse, I salute you. You’re getting me through my self-absorbed fatigue phase.

Losing my hair again, just in time for summer

I ought to write about the actual radiotherapy sessions. It is different, having it done to the head, rather than to spine and the abdomen. They mould a mesh mask to you, for one thing, then the mask is clamped to the bed. I panicked a little when the mask was being made. I was worried I wouldn’t be able to breathe so I kept my mouth ajar at an odd angle. The mask is mesh, as I said, so air supply was not at all a problem. Keeping my mouth at an odd angle for twenty minutes each session was more of an issue. Your eyes must remain closed throughout the session, and there was a vague smell, like faint gas mixed with an overheating appliance. Anyway, to the head is different, and more frightening, and kids do it.

This is where this post turns selfish. The biggest difference is the fatigue. I am going to try and explain it here, in the hope that I will stop going on about it in the real world. Because it seems to be all I talk about, it is all I think about, and those dealing with me on a day to day basis must be pretty bloody sick of it. I have become so self-involved that it hurts. I know gradually over this entire illness I have been sinking into selfishness. But right now it is pretty close to consuming me. This fatigue is unlike anything I have ever experienced. It isn’t ‘oh take nap’ fatigue. The nap won’t help. It is like I am in a constant state of inebriation. Without being jolly. Well, sometimes I am jolly. All those little tiny choices you make, daily, without even knowing you’re making them, I now actually have to think about them. Like really fucking think. I have never been very decisive anyway, so deciding whether to wear pyjama trousers or track pants is excruciating. Because the answer is probably wear shorts. And then I freak out.

That scenario, which is not exaggerated, only relates to me internally. Now let’s try inserting these flawed thought processes into social situations. Or having to make a decision for someone else. Fuck me. I have just returned from a pretty spectacular fail in regards to a catch-up lunch. I can’t, like, pick a table or a café or even really cross the road, and I can’t remember time at all, so I can’t remember when I last saw someone or whether it was last week that I had radiotherapy (it was because I’ve just looked it up) or even figure out that in three months massive things that don’t involve me having fucking radiotherapy could have existed in somebody else’s life. I haven’t figured out how to tell people that what was cognitively normal last week is now impossible. Not a slow demise. A giant collapse. I need a TFL badge or something. So I guess this is the selfish bit, where I openly apologise to everyone and say I am trying, but I don’t know the best route home, and I can’t choose a flavour of potato chip.

I am unsure if I have conveyed how smooshed I feel. This post is poorly written. I know it is. I know the grammar is poor and the tense changes are difficult to read. I know I have used many words incorrectly. I have tried to write clearly, but I know it is not of good quality. And I cannot fix it, which is very difficult for me to accept. But that is where my brain is at. The next post will be more fun. I promise. I mean, I am pretty sure I have smashed the world record time for eating a packet of Tim Tam Classics. There could be a time challenge brewing.        

  
10 December 2016

So because I cannot remember a bloody thing, I had to re-read this post to prevent severe repetition in future posts. I can’t promise there won’t be repetition, but it I can say that I have done all I can to minimise it. Anyway, as I was reading away, I had to stop myself from proofreading this entry. I realised that if I corrected the errors, the purpose of the post would be lost. But there is a paragraph that doesn’t make much sense, so I have tidied it up:

Scan results always come with decisions. In an ideal world, my nerve was merely being pinched by a lymph node. But it does not take more than a quick gaze at global events to realise that the world is falling apart, and I am unsure if I even understand what the word ‘ideal’ means anymore. We were again in a rush situation. It seemed I had to make an on the spot decision as to treatment right there in the ward, the fifth floor ward, which was swaying with the frequent aftershocks. This is kinda how it went down for me: "So, well yes there is a lymph node involved, but actually the pesky bloody lymphoma has found its way into your brainstem." Shit. "The upside, your symptoms replicate what we are seeing on the scan and targeted radiotherapy will, at the very least, stop further progression." Ok, cool, targeted radiotherapy to the brainstem. I can do that. Yup, fatigue for a bit, but not too long, sure, yup, I’ll do it. "Hmmm, but yeah there is something else. There is this other patch, on the scan, unrelated to your symptoms. It isn’t quite in your brain yet, more in the membrane around your brain. But it is close to your frontal lobe." Huh. "So the options you have are to target the site causing the symptoms, or, entire brain radiotherapy to remove any other cancerous cells. Entire brain radiotherapy will leave you with at least six weeks of chronic fatigue, fatigue you could only dream about. If you are lucky enough to dream. Targeted radiotherapy will give you far less fatigue. Decision please?" My Scottish sister clutches her chair as a larger aftershock hits. She is out of practice. 

Oh, the places you'll go

The other day, on a taxi ride from Wellington hospital the driver announced to us that he knew a miracle cure. It would cure anything. A doctor had told him so. It is at this point that I begin to shuffle awkwardly in the backseat, grit my teeth, mentally preparing my politest “mmm’s”, “ahh’s” and other uncontentious sounds. Mike, also, dropped his eyes and began fidgeting. Chocolate and laughter were the driver’s super-secret pick-me-up. He even gave me a fistful of chocolate to prove his point. And that’s fine. It is nice, even. But I was pretty concerned he was going to start touting hydrogen peroxide or turmeric lattes. A gluten free diet and magnesium at night. People do, you see. It is probably all in good faith, but that doesn’t make it any less frustrating. Because my magnesium is measured weekly and immunotherapy requires an inflammatory response so turmeric ain’t gonna help. No, no, your gluten free, dairy free, refined sugar free organic air diet isn’t going to cure my cancer. Oh and hydrogen peroxide? The so-called miracle cure. Gives your body an extra oxygen molecule, you say? Well, I could explain the complex biological process called breathing to you or, or, I could whop you round the head for exploiting vulnerable people with what is essentially a pyramid scheme. And I whop good. I’ll use every damn gram/L of my 104 Hb to lay the smack down. Somebody generously offered me God. He has a sense of humour, I’ve been told. I am not sure that Syria would agree. And what did I just say about exploiting vulnerable people? Something that does make me feel better is coffee. No turmeric. Strong coffee. It’s required to get through the day. Actually, I’ll put a pot on now. See if I can’t up this writing game a bit. Chocolate and laughter do help too. And cheese. And beer. The taxi driver didn’t do too bad really.

   

Emily McDowell, who’s had cancer, has designed a bunch of cards. One says “I am so sorry you’re sick. I want you to know that I will never try to sell you on some random treatment I read about on the internet.” The fact that this card exists, has a need to exist, sucks. I would like to see a bucket list card. Something like ‘No, I’m not just ticking you off a list.’ At this point in my life it is dangerous to have lists. This is the time where I can ‘live the moment’. A list would be restricting, and a little insulting. I am never going to be happy about tagging out early. No number of ticks are going to make that ok. That is not to say I haven’t been doing things. I have, just not in any particular order, or for any particular reason other than an impulsive urge. I know I said earlier that I could only find positive end-of-life blogs, and that this one wouldn’t become one of those. Well, it probably won’t, but I have learned that the reason they’re possibly all so fucking positive is because on the down days the individuals are too tired to write. Or if they do, the words are not concise enough to make their blog. I have entries I wrote when I was rapidly losing my mind and, funnily enough, they make little sense.

So I know I just announced my disapproval of diets, lists, and positive terminal blogs, but I have cancer so my memory is a little dodgy. Some may term it “hypocritical”, but hey, let’s not use labels here. I remain, and will continue to remain, a vegetarian. And sometimes, when one reads that something is a possibility, like standing on the rim of an erupting volcano, one just can’t help but think ‘fuck, I need to do that’. I never knew that was something I wanted to do. Neither did Mike. Neither did my sisters. But there we were, sometime in August, trying to start a crazy volcano cult in Vanuatu. Unfortunately, the cult didn’t take. I think we would have had more success had my hair been longer. Hair length is directly proportional to cult uptake rate, right?

My medical team don’t need to know about the volcano incident. That’ll remain our little secret, if that is ok. They know I am travelling, it is just that sometimes communication issues arise. They’ve heard ‘boutique resort’, when what I really meant was an off-the grid one room hut made from bamboo branches and banana leaves. It’s merely a matter of interpretation. They thought I meant Cairns, when actually I meant a boat an hour or so off the coast of Cairns. You know, on that big ass reef. Oh, you thought I was going to be looking at the reef through a glass bottom boat? Crap, no I meant through a snorkel mask. Man, I really need to work on my communication skills. So many misunderstandings. Whoops. Hindsight, eh?

There are practical issues that need to be considered when traveling whilst terminal. Again, these do not appear on any blogs. The issues range from the obvious: flight time, hospital proximity, fatigue management; to the less obvious: transfusion facilities, border medication policies, transportation quality. With my prednisone biceps and thighs, I cannot stand on the back of a four wheel drive ute. Just little things one needs to consider. Insurance. Insurance is another issue. I know in the UK there are companies that will insure cancer patients. I have heard that there is one in NZ. I don’t think any will insure a terminally ill patient. Some won’t go near me. You can almost hear the website laughing at you. I tend to travel without insurance. Like, I have it for my bags and stuff, but medically, no not really. Southern Cross have a box you can tick that says you have a condition that you don’t want insurance for. It means that, technically, if I were to break a leg, I would be covered because it is unrelated to my condition. However, I imagine they would find an out there. I imagine that everything would somehow be related to my condition. We use Southern Cross anyway, despite knowing we’re probably going to get screwed if anything should happen. 

On our first trip I searched for travel advice. All I could find was information on flying with oxygen tanks. OK, so I’m not that sick. And that was something that surprised me. On a flight to Apia, when to be honest I wasn’t the healthiest, I glanced around the plane and realised I wasn’t the sickest on-board. Sure, I probably have the shortest life expectancy, but I don’t need a wheel chair or special assistance. Not yet anyway. I’ve found that secrecy works best. You never know when Jetstar will decide you’re too ill to travel. I think of it like I’m a kick-ass superhero. Ok, well yeah so my powers are a little faulty, but my identity still needs to remain hidden. Sometimes, duh dah dah, I am unmasked, usually at communal dinner table with that kryptonite question: “so what do you do?” Quick guys, what do I do? I haven’t come up with a decent response yet. “Finding myself” sounds wanky, “retired” sounds sarcastic, and “well, actually I am terminally ill” really kills the conversation. It is a tricky yet frequent question. I am fortunate, in a way, that nobody from my past tends to recognise me with the short hair and all. But I have always been slightly awkward, so when somebody strikes up a conversation with me, in the supermarket say, and they think they’re talking to a stranger, yet I’ve known them most of my life… well it’s a dilemma. Because if I own up the first question they’ll ask is “what are you up to?” And let’s be honest; I’m up to fuck all. A common bum reliant on opiates, caffeine and bloody Mary’s to make it through the week.

I'm all at sea!

If I have pissed off any terminal patients because they feel miserable while I look like I am on top of the world, don’t worry, I’ve also felt like shit. It’s just that none of those entries make any sense, and often the hard times soften in memories. Think of the all things you no longer need to worry about. Saving for a house. Next summer’s fashion. Flossing. These are aspects of life that just no longer matter. You can raise a middle finger to your phone when it reminds you, for the tenth time, that you’re listening to music far too loudly and it may cause hearing loss. Ha! Not really an issue. Try bugging someone else little phone.

Gosh, so this post has gone nowhere. I guess the main purpose was to let you know that I am still alive. I’ve spent a good portion of the last six weeks in locations without cell phone or internet coverage. There’s been a bit of swimming. My Hickman line is gone, you see, so I can snorkel with turtles and sharks and nemos. Again, something I never thought I wanted to do, until I nearly couldn’t do it. That’s the point. A list implies that things need to be done. I prefer to think in terms of things that can be done. Opportunities, not obligations. A list has an end and I don’t want an end.

11th July 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little depressing. I was aiming to get them all up within a week. Best intentions, eh?

When I wrote this I was still in Wellington hospital and on a high morphine dose. Again, this post is cheesy. But I do not apologise this time.

11^th July 2016

I have been struck with a sudden, maybe even overwhelming, desire not to die. Overwhelming is probably a bit much. I am not hysterical. I am not even sobbing. I am merely weeping from one eye. I don’t know what weeping from one eye is called. Sadness, perhaps?

I don’t have a bucket list. A few people, including medical professionals, have asked me about my list. Even to compose a list. My bucket list was to live a long life with Michael. Before all this, the disease, the relapses, I’d become comfortable with myself. And I’d come to quite like us as a couple. We were growing up, maturing, and our life in Nelson was going to help people, both now people and future people. I have no doubt that Mike will continue to do good once I am gone. He is the best man I know. But I am really quite sad that I will not be there to watch him achieve this greatness. His wife is going to die, and I’m not going to be there to help him when that happens. That is the hardest part for me. I love that man so much. I am going to miss him even though I won’t actually be around to experience the loss.

I am lucky, so lucky, to feel this strongly about someone. But I am sad, and both eyes are weeping now. 

10th July 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little depressing. I was aiming to get them all up within a week. Best intentions, eh?

I must confess I don't really like this entry. It is too 'woe is me'. Other than the last paragraph, I don't really feel like this anymore. This entry was written in hospital, when I was rather emotional and in an awful lot of pain. I am sorry it is so cheesy.  

10^th July 2016

Better people than I have died. Younger people too. Better younger people. There was a teenager in the UK and when he became terminal he began a blog championing socialist ideas. The entire time he knew he was dying, yet he was trying to improve the world. I’m fifteen years older and I haven’t even started. And I like his writing more than my own.

I have a couple of regrets. The first is not really up to me. I regret that I cannot live longer, watch my husband age and flourish, see my sister get married [I did actually get to do this], enjoy future nieces and nephews. That is all out of my control though. These things aren’t going to happen so I ought not to pine about them. My twenties have been good to me. I have enjoyed them. My husband, the time I have had with him; well it is a good thing we married young. Many people don’t get to experience what I have. I am aware of this and I do appreciate my own life. Even now. Especially now.

The second regret is something I had a bit more say in. I regret that I haven’t helped the world. Since I was a little girl, I wanted to save the world. My plans were grandiose, unachievable, some may say. As I got older, everything I experienced I justified as research for how I could make the best impact. And, of course, I was just about to start my master plan, even if the plan lacked specific details. Yes, I am certain that I was just about to start. But I never did start. I came into this world, mucked around for thirty-one years, and will leave without making the slightest social mark. One could say that my life was wasted.

I don’t know how many of these thoughts are actually caused by my narcissistic personality. Or maybe it is a generation Y thing. I know that when I was initially diagnosed and there was minimal chance of dying, I got a little egotistical about making myself great, famous, a champion for humanity. And for animals too. So maybe, this regret of not saving the world just stems from my ego. For anyone interested, my master plan was to volunteer twenty hours a week (I hadn’t chosen a specific organisation) whilst writing a novel as socially poignant as Steinbeck. I had even drafted a plot pyramid. But the novel will never be written, and was probably rubbish anyhow.

But I think my advice to those out there contemplating the epic novel, the overseas adventure, the big job move; is just do it. I know it isn’t original advice. Nike got there first. But seriously, we shouldn’t let life get us. What are we waiting for? Most of the time we have nothing to lose. 

9th July 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little depressing. I am aiming to get them all up within the week.

So that was February. In March there was a garbled entry, trembling hand writing, where I’m ‘running out of time’. April, I was ‘worried about my body’. I seemed to be less morbid in May, but wrote nothing of any substance. These entries aren't worth publishing. They were mainly just free writing; writing to keep the words away from innocent bystanders. June, well we discussed June in a previous post. So now we jump forward to July, where events become a little more concrete. Although I must warn you, I was on quite a bit of morphine at the time.

9^th July 2016

Today was the first full day of knowing that I will die. Soon. I will die soon. Everybody, I hope, is aware that someday they will die. But really, they are aware that humans die; rarely do they think of their own mortality. And rightfully so. It would be all to consuming to worry about such things. Today was my first official day of dying. Death has infiltrated my mind over the past year, but even I hoped (without ever really expecting) that dying wouldn’t start for a while yet. Like, it wouldn’t start until next year. But it’s not next year. It is now. 

I'm dying now.

27th Feb 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little morbid. I am aiming to get them all up within the week.

It was around February when I began assessing songs on their funeral suitability. I even made a playlist. I obviously have grand narcissistic visions as to its length. What? Four days is too long? Hmm, ok I will reassess it then. But February seems to be when I realised that things weren’t going so well, even though I did not go into marrow failure until March. So I will start with what I wrote in February and move forward chronologically.

27^th Feb 2016

I feel like talking. I don’t know who to talk to. Mike and I are alone but he is too unwell to talk. Or to listen. He is trying his hardest not to be unwell, and I am trying my hardest not to be frustrated by him being unwell. But he does have the beginnings of a cold and I ought to let him, on this quiet Saturday evening, just rest and submit to being ill. He has done so much for me. I have become selfish.

Yet, when my head decides it wishes to talk, it is rather difficult to stop it. The thoughts swirl around my skull, before pushing through my brain and into my mouth. Sometimes an audible a sigh can keep them inside, sometimes a gulp, even a little headshake. Unfortunately, this usually gives the appearance that I am having a minor stroke, and the techniques never work. The thoughts always seep towards my tongue’s tip. They always come out eventually. Today, I will try and substitute an audience with my little black book. Death is on my mind. Not death as in the actual dying part, the part where you can’t walk or talk or bathe yourself, that only crosses my mind every so often, no, it is the pre-dying part that occupies most of my brain. And these pre-dying thoughts, well, they are punctured by flashes of a future where I do not exist. I am not dying yet, nor pre-dying, however the likelihood that both these stages will happen this year is high. High enough to make me want to talk about it. But no one wishes to talk of death. The ‘How are you?’ questions cannot be answered with truth. The enquirers do not want to know the truth. I do not want to know the truth. 

Katherine Mansfield sums up my thoughts quite well in a telegram:

“At the moment, too, I can’t write letters. I haven't the time. I’m late now for the Sphere & it’s a difficult job to keep all these things going. I write to nobody. Please forgive this, understand it & don't get anxious & don't telegraph unless you have to! I have such a horror of telegrams that ask me how I am!! I always want to reply dead. It’s the only reply. What, in Heaven's name, can one answer?”

http://www.katherinemansfieldsociety.org/13-june-1922

A series of dying thoughts

I declared honesty in my last post, so, with honesty in mind, I must say that I expect this entry to be a bit shit. There are many loose pages, bound within my little black book, that are yet to be immortalised by the internet. Then there are more in my dysfunctional book. I would like to immortalise them, although there is probably a perfectly valid explanation for why I haven’t yet done so. Namely, that they are a bit shit. But I shall press on anyhow, with the hope that despite my fragmentary thought processes, there will be a little cohesiveness.

If we start with the present; well, I still have a million little blurs rushing about my head. I imagine my mind to be a little like one of Kafka’s institutions; indistinct grey blobs scurrying around with authority but achieving nothing of importance. Just confusion. Do I write the post of now or do I write the loose pages? I can’t even make that decision. Hopefully it will make itself. That is the joy of writing, isn’t it?

Oh so rhetorical! This is what I am at the moment, a bunch of unsolvable questions. I want answers, I want clarity, I want control, but all these things are impossible. I hate to admit it but given I am a millennial, I do have a tendency to Google everything. I know the internet to be fallible, but there has to be someone out there who has been in my situation, who has thought the same thoughts, who has had the same questions. I find reading the experiences of others helpful, not how they overcame the problem, solutions vary so much between individuals, but more that we share the same problems. It is a relief to know that you are not alone. As I mentioned in my last post, I am yet to find such a report. Most blogs I discover are too positive. Maybe I am not looking hard enough. I don’t know. But I do know that some days I struggle with the idea that I have no future, and seeing as my grand plans were to save the world, I best give a little meaning to the short time period I have left. I am humouring myself, I know. As much as I love to imagine that this blog is helping strangers, it isn’t. If anybody should happen to stumble across it, it’ll probably just leave them bewildered. 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.

A blurry taste of August....

It may surprise you when I say that I rarely make a decision with purely selfish intentions. It is difficult to be selfish. But there are days when I want it to be all about me. Days when I frown at the world, clenched teeth, a furrowed brow. I am not angry at my situation, more at the bloated folly of society.  I myself feel bloated. All the time. So here are a series of selfish posts about my thoughts on dying. Posts that let me continue my delusion of aiding others. The majority were penned whilst I was an inpatient, and I have decided to post each entry separately over the next week. A new post should appear every couple of days. Most are super short and super emotional; do not fear! August was an amazing month for me. But you'll hear about that later.

Honest musings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A card Mike gave me a few years back

My time as a laser kiwi

Let us talk about June. I know it is now August and June was a while back, but I feel events in June need to be mentioned. Mike and I moved into a cottage in The Wood. It was built in 1868 and, seeing as insulation didn’t reach mainstream New Zealand until the late 2000’s, it was a little chilly with June’s winter temperatures. Fortunately, a bit of furniture and global warming has made the little cottage quite comfortable in August. Screw the future generations right? Mike had returned to the office and we had our cat back. She even seemed to like me more. We were reintegrating into everyday life. Living the dream. All I had to do was keep house; do the dishes, maybe a load of laundry, cook dinner. There was one problem though, I couldn’t manage.

The usual complaints were present – spleen, fevers, fatigue – but also new ailments were arising. There was this cough. It started in the early morning and by midday I was trying my darndest to expel both lungs from my body. The effort was in vain. All I ever expelled was my stomach contents. Then there was this upper back pain. My shoulders had begun hurting a while ago, maybe January. It made sense; I was less than active, my posture has always been poor, and prednisone muscle disintegration was well under way. Of course I would have a sore back. Oh and my Hickman line, that must be contributing to my poor posture. Best have that removed. Physio will help. Get some exercise in. Strengthen those muscles. Keep doing those stretches. Surely stretching should ease some pain. But the pain was worse, not better. A trip to Wellington and some codeine. The pain worsened. It was a hot poker stabbing into both shoulders, slicing down my spine and my left arm. I couldn’t even make a coffee in the morning. Things were getting desperate. I was hitting the paracetamol hard. Despite antibiotics, the cough was still present and it jolly-well hurt to cough. I became almost bed-ridden. I say almost because occasionally I did manage to crawl downstairs and settle, with the cat, upon the couch. But I’d had enough. Everyday life sucked.

Wearing the same expression

I do try hard to leave the lovely Wellington haem team in peace but I found the situation distressing enough to contact them. I mean, I couldn’t even make a coffee. Dire, I tell you, dire. And with my rasping cough and charming wheeze, who wouldn’t be keen to see me? Wellington were certainly keen. After a quick chest x-ray and a sneaky blood transfusion I was admitted, with suspected bronchitis, and offered Tazocin for the next three to four days. Initially, when this adventure started around two years ago, I had no side effects from antibiotics. Now, well, let us just say they actively encourage bowel movements. This is a quite common side effect among patients. I have no idea why. Anyway, whilst I was admitted they decided to check out my back pain. There were no spinal abnormalities on the CT scan. Perhaps it was referred pain from my spleen. An MRI was scheduled, cancelled, rescheduled, re-cancelled, and finally performed. I’d had an MRI as a child but couldn’t remember much of it other than being allowed to listen to headphones, which at the time I thought was quite neat. I guess I was a lot smaller back then. The MRI scanner was long and narrow, much narrower than the PET scanner. I find small spaces comforting so it did not bother me much. I was more worried about how my back would cope laying still for an hour. The back was fine; I had enough morphine on board to numb any pain and create some rather disconcerting hallucinations. They were not fun hallucinations. They were shitty everyday things that I knew weren’t real. Like a nurse appearing at the foot of my bed, a nurse who I knew wasn’t real because they had the wrong uniform on. But illusionary nurses still seem to frighten me. Not fun. Oh and the headphones hadn’t changed since I was a kid. 

The MRI results were back before smoko. It was one of those ‘bad news is also good news’ moments. There were lymphomatous deposits (yup, still not quite sure what that means) in my spinal column, pressing on a few nerve roots. This is known to happen in Hodgkin's disease. The masses were in just the right spot to be deferring pain and numbness down my arm. There were also some more masses at the tail of my spine. My physio had asked me, way back in March when I first turned up on her doorstep, whether my pain could be due to cancerous masses. I assured her that couldn’t possibly be the case, I was scanned often and there had never been any evidence of masses. Well, she was right. But it was good news. Radiotherapy could ease the pain. Yus, no more exercises.

And so I got to experience radiotherapy. Don’t worry, physics is far from my favourite subject so there will be minimal science in this one. You’ll have to ask Mike for the technical details, the whole subject tends blows my mind into tiny pieces. From what I can gather, one x-ray beam runs from head to foot and the other is fired perpendicular to the body. Where the two beams meet is where the radiotherapy is targeted. The day before radiotherapy started I had another CT scan to ensure the x-ray beams were inline with my tumours. This is done down to the millimetre. Yup, they can actually move the bed one millimetre. In order to line you up each session they need to have, and remember, a reference point. An easy and permanent way to do that is with a small tattoo. I now have four. Mike was expecting crosshairs but really you cannot notice them. They are barely the size of a pinprick. But they make me feel badass all the same. I’ve wondered what happens if I require further radiotherapy; do they strike a cross through the old points or reuse them? Maybe I could bring a few designs in, really embrace the procedure.

Once I had my initiation tattoo, it was business time. To be honest, business just required me to lay still for half an hour whilst some pretty hi-tech contraptions whizzed about me. There were lasers, both red and green, and the lights were low; I expected the theme from Star Wars to begin. It didn’t. Instead Crowded House droned in the background. That was probably the worst part; Crowded House playing and being unable to move or block my ears. Honestly, there was nothing more to it. It looked spectacular but I felt nothing. I was even surprised when, a couple of hours after, I vomited violently upon myself. Nausea is one of the side effects, you see, but I had failed to remember that I’d even had radiotherapy. A week later when I couldn’t swallow, I finally believed that it had actually done something. Oesophagal tissue is quite sensitive to x-ray beams so my throat got angry. It was all I could do to finish my Fortisip. Through a straw. I must confess I was pretty cranky about this. I had finally developed an appetite and now I couldn’t eat. Oh the irony! Other than my inflamed throat (which lasted a week), fatigue, and nausea, there wasn’t too much to grizzle about. I’d even managed to charm the haem team enough to allow my release from hospital. Either charm, or they were desperate to get rid of me. I’d like to think it was the first. Fortunately, Hodgkin’s cells are sensitive to radiation, so my dose was low compared to most radiotherapy patients. I only required five days of treatment. Most people I’ve met have spent six weeks under the zapper. In comparison, my side effects were minimal.

So that was June and half of July. I know I have been tardy with this update and I apologise for this and the quality of the content. It is a little disjointed. Now that my back pain does not cause my legs to buckle or me to emit audible groans, there ought to be more frequent updates. The radiotherapy has worked, I am no longer on any painkillers, not even paracetamol. Maybe that is why GlaxoSmithKline’s share-price dropped in June. It was nothing to do with Brexit.