Peaches and Sake

The pruritus that I have been whining about for the last wee while is now out of control. No part of my anatomy escapes the haunt of the itch, and the haunting is incessant. I spent the last ten minutes scratching my palm, whilst devising a method for the removal of my nose. As it has lost all olfactory function, and as it refuses to halt any itching, it simply needs to go. Unfortunately, I am yet to develop a rhinoplastic solution, as no thought will stick for longer than five minutes without a distracting itch arising. Five is, perhaps, being generous. Argh, if you’ll excuse me one moment, an unavoidable itch has developed between my second and third toe, and the imploration for a scratch is too difficult to refuse. Have you ever tried denying your third toe? It does not end well. There seems no resolution to the torture except a solid scratch. I have tried moisturisers, both chemical and natural. I have tried oils, oatmeal, antihistamines, three different kinds of soap-free soap. Hot showers, cold showers, mineral baths, distractions, mindfulness, even tearing up tissues; nothing soothes the itching. Despite maintaining military length fingernails, rips in my skin are beginning to show, and finger imprints are appearing in the form of bruising.

I have delved into the science, of course, and have concluded that the lymphoma is to blame. Itchy skin (pruritus) is a well documented symptom of Hodgkin’s Lymphoma; 15% to 30% of patients report it. There is scientific speculation that the malignant Hodgkin’s cells, which are known to secrete a bunch of cytokines, are secreting a few that aggravate the nerves under my skin. Cytokines are cool. They are chemicals released by the body to inform cells, particularly blood cells, where to go and what to do. How do your neutrophils know where to be to fight that bacterial infection? How does the bone marrow know to increase white cell production? Because of cytokines. My rogue B-lymphocytes release fun cytokines that encourage fevers, rigors and itchiness. The tumours in my neck, the nodes the size of a Roald Dhal peach, they must be releasing increased itchykines. (Just so you know, and to ensure that I am not lumped in with the fake-news crowd, ‘itchykines’ don’t exist. I made the term up because I like puns and biological science at a cellular level. Lame, I know. And what with this disclaimer and all, I have really disrupted the flow of this post. Yet, ‘itchykines’ remains an unofficial non-thing. I’m sorry about that.)

Oh and those neck nodes I mentioned? Yeah, they’re pretty big now. Mr Peach has remained firm, and a node beneath my jaw (submandibular) has ballooned over the past week. I now have a puffy face with a droopy eye, and there are facial areas that are numb to the touch. Like my entire left ear. Ironically, this numbness does not provide itch immunity. Instead, I am numb to the rasp of my fingernails, resulting in an ear itch that seems eternal. My hair has almost returned, except for a bald strip that divides my skull. The previously endearing circular patch at the rear is transforming into a rattail. What with the lumpy neck, awkward hairdo, swollen face, and continual scratching; I am the cretin you fear on the bus.

I spend a lot of time pondering. Some of these ponders find their way to this blog, but most are confined to my head or my journal. I’ll share these latest thoughts, although it is possibly unwise to do so. Currently, I am struggling with the concept of time. How much I have left, how best to utilise it, how much I am sapping from those around me. No matter how I spend my time, I feel guilty about it. It always seems that I could be doing something more meaningful. It always seems that I am achieving nothing. At night, scratching away, I reflect on the past day, my memory spectacles clouded by guilt and regret. I don’t know how best to spend my hours, and I worry that I am not making the most of the time I have left. Whatever the most means. 

A few weeks back, before my face puffed up, the haem team ordered a CT scan. I found this amusing. Mr Peach has been growing since January. I knew my tumours had not reduced, a glance at my neck could confirm that, so a scan seemed unnecessary. Aside from my inflated neck nodes and irritating skin, I was experiencing no other disease symptoms and my energy levels were improving. Given that time is a concern of mine, and given my health was stable, Mike and I thought it might be an opportunity, perhaps our only opportunity, for an adventure. We'd been murmuring about Japan since January. It was now March, springtime, perhaps the cherry blossoms would be in bloom. We ran through my medical concerns. How fast could my health deteriorate? What was the worst that could happen? These questions are rhetorical; the harbingers of dwell. Impossible questions that no one can answer. We scrapped this approach. If it were not for the lymphadenopathy we would have booked our trip without hesitation. Instead, we sought medical advice. 

I have four medical liaisons, two in Wellington and two in Nelson. We surveyed them all. It was an interesting situation. Not one would commit to saying yes, but nor would they refuse permission. They were desperately trying not to deny us. Someone may have said ‘unadvisable’ at some stage. It was the distance from New Zealand that concerned them. There were no issues with Japan as a destination, nor my ability to handle the 11 hour flight. But they were worried that if drastic circumstances arose, 11 hours was a long time to delay medical intervention. To complicate matters, the CT scan revealed just how large Mr Peach was. And that he was compressing my jugular, and forcing my larynx to the right; a widespread issue globally, it seems. Apparently, jugular obstruction is not a major issue. There are a network of fail-safe veins that bypass the occlusion without any drama. The risk was the carotid artery. If old Peachy continued to grow, he may compress the carotid artery, and that could lead to a stroke, which would not be much fun in Japan. Their immaculate healthcare system is simply too expensive for uninsurable invalids who happen to be tourists in their country.  

We stewed and dwelled and researched and stewed some more. At some point we realised that we had expended so much fucking effort, that there was no way we could back out. Flights to Osaka were booked, four days prior to departure. I had intended to keep Wellington in the dark. I felt the trip would just worry them, and no consultant needs extra stress. Unfortunately, he called an impromptu meeting to discuss the CT scan, and I ended up confessing. Surely this is a common issue, I asked, you must have patients travelling all the time? No. Not often are his patients healthy enough to consider travelling. I am quite fortunate. Immunotherapy is not going to cure me, but it does allow an uncomplicated trip to Japan. Medically speaking that is; everything else in Japan is entirely complex. It is a country of confused fun. Our decision to travel could be deemed reckless despite our hours of consideration. Would you have gone? I remain unconvinced that travel is the best use of my time. I enjoy it, I enjoyed Japan, I enjoy our jaunts into the New Zealand countryside, travel excites me. It injects me with pseudo-vigour and happy fun times. But my gratification is not the sole purpose of life. It aides no one but myself. Well, perhaps travel is better than nothing, which is often where my ponders lead. 

Totally worth the risk

Mr Peach is in his final days. Radiotherapy is scheduled for the coming week and I will enjoy watching him rot. I am hoping for a vast reduction in neck size, and a cure to this incessant itchiness. I am also yearning for a shoulder massage. Massages are difficult to book, you see, when you have lumps where you ought not. Something to look forward to, as daily tasks become progressively harder, and the nerve pinching progressively worse. Oh, and I assure you that the movement of my voice-box is purely anatomical. I remain the outspoken anti-corporate, meat-free, green-voting hypocrite that you all adore. If I do not have my ethics, I do not have anything. 

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. 

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.