11th July 2016

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

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

11^th July 2016

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

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

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

10th July 2016

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

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

10^th July 2016

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

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

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

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

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

9th July 2016

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

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

9^th July 2016

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

I'm dying now.

27th Feb 2016

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

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

27^th Feb 2016

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

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

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

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

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

A series of dying thoughts

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

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

Oh so rhetorical! This is what I am at the moment, a bunch of unsolvable questions. I want answers, I want clarity, I want control, but all these things are impossible. I hate to admit it but given I am a millennial, I do have a tendency to Google everything. I know the internet to be fallible, but there has to be someone out there who has been in my situation, who has thought the same thoughts, who has had the same questions. I find reading the experiences of others helpful, not how they overcame the problem, solutions vary so much between individuals, but more that we share the same problems. It is a relief to know that you are not alone. As I mentioned in my last post, I am yet to find such a report. Most blogs I discover are too positive. Maybe I am not looking hard enough. I don’t know. But I do know that some days I struggle with the idea that I have no future, and seeing as my grand plans were to save the world, I best give a little meaning to the short time period I have left. I am humouring myself, I know. As much as I love to imagine that this blog is helping strangers, it isn’t. If anybody should happen to stumble across it, it’ll probably just leave them bewildered. But I believe Camus. I believe that in order to continue with the absurdity that is life, I have to try to make it better for others. And how do I do that? How, when my master plans required decades, do I condense them into a couple of months? By writing? By voting? By traveling, giving my money to remote communities, corrupting them with my Western ways? Really all I am doing is what I want, feeling guilty about it, and then attempting to justify my behaviour.

A blurry taste of August....

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

Honest musings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A card Mike gave me a few years back

My time as a laser kiwi

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

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

Wearing the same expression

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

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

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

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

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

Results Day

Sometime during my treatment I drew an imaginary line in preparation of Wednesday. The line was to signify the difference between sickness and health, to provide the motivation I needed to begin living again, to remind me that Wednesday was the day I ran out of viable excuses. People as lazy as I require such imaginary lines.

Tuesday was results day, the day of my final haematology appointment. Mike and I had prepared a list of questions to ask, predominantly focused on obtaining any paperwork required for me to travel and transferring my medical records to New Zealand. We intended to make a slow journey back home and by slow I mean the speed that the Fifeshire once sailed at. We were going to take a while.

It was a lovely day, the sun glowing, the wind minimal. In the waiting area at the cancer centre they had opened the doors allowing us to sit on the garden deck surrounded by trees and a little pond. It was relaxing. Eventually my Macmillan nurse called my name. I thought it was nice that he was at my last appointment, I had not seen him since my second PET scan, it would be good to say thank you and farewell properly. I was to see a different consultant, my nurse told me, but he was aware of my case. I had no problem with this; I have seen three separate consultants already, a fourth did not matter much.

And so the clinic starts much the same as any other. Polite questions about my previous chest pain, a mention of my recent hospital stay, questions (in a tone a little sterner than I had anticipated given the happy occasion) about night sweats. Doctors have this remarkable knack of getting one to confess. That minor change in vocals got me slightly flustered and I had to admit that yes I was actually experiencing some night sweats, but it was summer after all. The doctor had clearly tired of such small talk. “I am sorry to say that your scan is showing signs of disease” “Where?” “Chest, abdomen and spleen. This would explain the chest pain you have been feeling.”

In movies, when the main character receives bad news, the background music usually gets louder and the voices surrounding the character turn into a fuzzy hum. That is what happened in my situation. Except there was no music. I remember focusing on the wall ahead of me where there was an examination bed and a pillow and the pillow was on an odd angle and the bed looked too flat. All my effort was concentrated on avoiding eye-contact with Mike, because as soon as I saw him I knew I would burst into tears. I cannot tell you how long this haze went on for, but at some point I became aware of Mike writing notes, and I was relieved that he had kept his cool when I had quite clearly lost mine.  

We had not prepared for this outcome. In my last post I mentioned that my infection had made us talk a little about unfavourable results. Well, we did not talk enough about it. This was not meant to happen, we had no strategy for this. Treatment plans were discussed, intensive chemo for three months, stem cell harvest, more chemo, stem cell transplant. At some point during this explanation I decided to ask “can we do this in New Zealand?” and potentially we could, but we would need to organise it quickly as I do not have much time. I am not sure what happens when this time runs out. Do I turn into a pumpkin?

Thanks to the New Zealand Cancer Society, we managed to quickly get in contact with some Kiwi haematologists. I have now become an interesting case, I am sure anyone would want to have the pleasure of treating me. It looks as though I was correct in that assumption; we land in New Zealand next week. This gives us about four days to pack up our lives, our artwork, my books, and trek around the globe, although a lot faster than we had first anticipated.

The situation is quite surreal. Searching for specialists back home has worked as a distraction from reality, but occasionally I do catch myself pacing the house, pausing to sigh and mutter an audible ‘fuck’ under my breath. Physically I feel good, probably the best I have in a year or so and yet my tumours are growing rapidly. I mean my spleen doesn’t even hurt! Emotionally? Well emotionally this is difficult, worse, I think, than my initial diagnosis. I had a curable cancer, what could go wrong? It is as if my days as a cancer fraud are over and now I move onto the real deal. This is probably what most people feel on their initial diagnosis.

I finished Swallowing Geography the day of my results. It was an apt last book for cancer, entirely fitting for my situation. I felt satisfied and ready to move on. I am disappointed that I will need to find another last book, I mean not for a few months yet, but I will need to keep one in mind. I am also a little worried. Worried that I have run out of adjectives to describe despair and woefulness, because although past Liv felt rather miserable it is nothing on what future Liv will be feeling. Present Liv is still quite content living in her surreal bubble, worrying about the lack of adjectives in her vocabulary, not at all concerned that the chances of infertility (almost all cases) are higher than her chances of successful treatment. I still don’t know the exact figures. It is odd, I have never been overly maternal but as soon as the option is taken from me it seems like childbearing was the only purpose I had ever focused on. I know I will get over this. I feel it is probably just another distraction.  

There are some positives though. I am glad I did not cough up £8 to get my head re-shaved. My hair certainly needs a tidy but it seems I am going to get that for free now. Oh and I get to learn about refractory Hodgkin’s lymphoma; yay more CPD points! OK, so they are the only positives I have at the moment, but I am sure there are some more.

I am aware that this has not been overly informative. Most of the details are still a little hazy for us as well. I have a thirty hour flight to perhaps document events more concisely. I would like to say one more thing though. Prior to my last hospital admission, when I was researching possible causes for my fevers, I stumbled across a patient based cancer forum. Each post contained a mini profile of the author including a list of diagnoses and even misdiagnoses alongside the dates these occurred. It is somewhat relevant to say ‘Hodgkin’s lymphoma’ or ‘breast cancer’ but these individuals were displaying their list like badge of honour, particularly in regards to the misdiagnoses. One user even had a “misdiagnosis” listed and then the actual diagnosis listed less than a week later. The situation was similar to changing from a nodular sclerosing subtype to mixed cellularity or from stage III to stage IV. This is not a misdiagnosis it is a clarification of diagnosis.

Clinicians, and the NHS in general, are taking a bit of a hammering at the moment. The government in the UK is publicly insinuating that staff do not work hard enough and funds are being cut whenever possible. I will confess that I am (until late August) a NHS employee however I am writing this from the view of a patient. I cannot fault the care I have received here; not during diagnosis, nor supportive care, nor treatment. The nurses and doctors have been nothing short of fantastic. During this past week alone I have had doctors and clinical nurse specialists communicating with each other on both sides of the globe, eleven hours apart, answering emails and phone calls at all hours of the day and night. My health and care has always been at the forefront of their minds. Even with transferring to New Zealand, the haematologist only allowed it if the transition could be completed within a week as my health would deteriorate if the time-frame stretched any further. He only had my best interests in mind.

Frontline staff routinely go above and beyond their regular duties and I feel the general public (and certain politicians) need to appreciate just how much these health workers contribute to society. (There may be a little anger emerging here…..)

I would like to thank the Royal Sussex County Hospital for all they have done in my treatment so far. As I said, I cannot fault any of the care I received from them throughout my journey. I am sorry to be leaving them so abruptly.