A smooth journey

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

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

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

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

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

  

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

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

The silky smoothness of ICE

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

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

Brain radiotherapy hair loss

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

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

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

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

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

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

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

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

    

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.