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.