Honest musings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A card Mike gave me a few years back

My time as a laser kiwi

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

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

Wearing the same expression

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

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

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

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

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