A smooth journey

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

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

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

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

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

  

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

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

The silky smoothness of ICE

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

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

Brain radiotherapy hair loss

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

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

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

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

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

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

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

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

    

If all goes according to plan

So. It has been a while since we last spoke. As you may have noticed I have retracted into my shell, occasionally sticking my irritable neck out for food and water, but generally content to sit in my own darkness, insulated from the outer world. I think it is my bald head. It kind of makes me look like a turtle. I am pretty distracted and this entry has been the victim of severe procrastination so I am just going to launch into it, skip the descriptions Wellington’s wind, of my fragile emotional state, and just get the words out there. I don’t particularly enjoy writing in this manner but let us see how it goes.

Some weeks ago, after my second round of ICE, I had a CT scan to check my lymphoma status. The results were good; I had achieved a partial response to ICE chemotherapy, only the nodules in my lung remained. BCSH guidelines (yes, I have read them) state that a partial response is required to proceed to the next treatment stage. Mike and I shared another public peck at the good news and preparations for the stem cell transplant began. It was scheduled for December 23^rd, a perfect Christmas present. I had only one round of ICE remaining.

I shall deviate here slightly to nerdily describe the stem cell transplant progress. It is better defined as a ‘blood stem cell transplant’, you know, to remove any controversy. The idea is the bone marrow is stimulated via high dose G-CSF injections administered over a ten day period. This means two injections in the gut each morning. By about day seven the bone marrow is producing so many cells that they do not have time to differentiate within the marrow, so they just remain as stem cells circulating in the blood. These ‘mobilised’ cells are then ‘harvested’ by apheresis: blood leaves the body from one tube, undergoes centrifugation, the stem cells are collected, and the blood is returned back to the body through another tube; a continuous process with only a few hundred milliliters of blood leaving the body at one time. It is similar to dialysis. The collected (haematopoietic) stem cells are then frozen. This is a preservation process as the high-dose chemotherapy (BEAM in my case) is so toxic that it kills the bone marrow and damages stem cells. It also melts away any residual tumours. After the BEAM, the frozen cells are reinfused into my body, take about seven to ten days to work their way into the bone marrow and Hey Presto! I am cured. If all goes according to plan. The stem cell mobilisation was to start the day after my final ICE infusion.

I check into the haem ward cranky, as usual, for my final round of ICE. As I have previously mentioned it is a three night incarceration that I am never eager to attend. And the final round was crap. I was irritable day one, threw up for three consecutive hours day two, refused all hospital culinary delicacies from there out, and spent day three trying to focus on objects situated directly in front of me, failing, and falling asleep. At two a.m. in the morning of my final scheduled night as an inpatient, my temperature spiked above the dreaded 38°C. I am usually pretty clued up when it comes to my fevers, I know when they are coming on, I know how long it will take for my temperature to reach 38°C, and I know when to take paracetamol to calm the bastards down. This particular fever, however, took me by surprise. I knew I would not be discharged that day and I was pretty bloody angry about it. The doctors termed me ‘unwell’, infection was presumed, and broad spectrum IV antibiotics began with a disclaimer: we may not be able to begin your stem cell mobilisation tomorrow if you have an infection.

Well, isn’t that a fun thought to try and get your head around, when you are stuck in a room with a stranger, a stranger who has many different snores (so many I could not count each noise), trying to comprehend that your schedule, the schedule that had taken three months to prepare, could be thrown out the window because of one stupid temperature spike. I had prepared for many scenarios where the transplant would not go ahead, but I had not prepared for failure before the process had even begun. I was angry, down to the depths of my stomach, and there was nothing at all I could do about it. Relief came the following day, a Monday, when the regular haem team were on and assured me that the stem cell mobilisation would go ahead. It was the most reassuring gut injection I have ever received.

Despite the continuous IV antibiotics, my body feverishly pottered along. A couple of tender lymph nodes bulged from my neck, a couple more sprung up in my groin. The fevers became the predictable events I remembered; a rigor one could set a watch to. These were starting to resemble disease fevers rather than infection. This thought comforted me; if I don’t have an infection then they will let me out of hospital and I can at least feel shitty in an environment of my own making. I decided these words of wisdom ought to be conveyed to the haem team.  Unfortunately, they did not share my enthusiasm. I should not be displaying symptoms of disease. If I was, then the transplant would not happen and plans B and C would not only need to be devised, but also actuated.

And it was about then that I completely lost my shit. I had, externally anyway, remained calm when around the clinicians, hid my fears, my worries, and had just concentrated on the information they divulged. I even offered them a sly joke or two. But, at that moment, I lost it. My tears became as uncontrollable as my fevers. It turns out that further relapse was also omitted from my list of possible failures. There was still the slight, very slight, possibility that an infection was causing my symptoms and, as I was losing my shit in more ways than one, further tests were performed. I vaguely recall cheering "I have c.diff, I have c.diff" from my hospital bed and fist-bumping my nurse as he wheeled me into isolation. I am not sure how much of that memory is actually fever. Probably most of it. The general sentiment of the moment remains: I was happy and the clinical team were ‘cautiously optimistic’. The persisting IV antibiotics had wiped out my microflora, my good little bacteria, leaving c.diff to run amok. But it did not take long before I realised that the infection was a false hope. A helpful little night nurse even told me that one doesn’t get fevers with a c.diff infection. I do not know if she understood the implications of her statement.

I remained in isolation to protect my fellow patients, received the daily G-CSF jabs and plunged back into lachrymosity, the tears only amplified by my frequent fevers and general pessimism. Harvest day was looming. The haem team continued to bathe my cells in IV antibiotics. If I did indeed have some superbug with freakishly good hide-and-go-seek skills, they did not want it interfering. Interestingly, if my disease had relapsed it would probably not affect the harvest. Hodgkin’s cells rarely make it into the actual blood, so my stem cells should be mutation free. I know I have used the word ‘rarely’ there. I will emotionally deal with that possibility at a later date. A far later date. Anyway, the only ominous factor, aside from those aforementioned, was the absence of bone pain. I had been on double dose G-CSF for eight days without the slightest orthopaedic discomfort. There is a minimum cell count (CD34) required before the harvest will proceed. That magic number is 20. (They never told me the units, and I confess I never asked.) My count, on the day scheduled to be harvest day, was 2.5. The harvest is planned over a week, I still had four days remaining to reach 20, so really it was no big deal, but having been in hospital for eleven days, and with all the setbacks, and the frequent toilet breaks, I did not have the mental capacity to deal with a number as low as 2.5. So I do you know what I did? I am sure you do. Yup, I cried. I ignored all of Oasis’ advice, and cried my heart out.

The following day, however, I was roused by unrelenting skeletal agony. And I smiled, a sick masochistic smile, as I informed the clinical nurse of the substantial bone pain. She shared my excitement and rushed to tell the team. I imagine she burst into the office, hands in the air singing “She’s got bone pain!”, the remaining nurses and doctors of all ranks tossing their papers in an act of jubilant celebration.  Hmmm, perhaps that was just another fever. When she returned I was back to tears. I was no longer enjoying the pain. My count that day was 10, but they decided to hook me up to the harvester anyway with the hope of collecting the required volume of cells over two days rather than just one. They did not want to risk losing any of my circulating stem cells. The panic was unnecessary. The next day my stem cell count jumped up to a whopping 45 and I was hooked up for a further six hours. I will tell you about it sometime. But not now. This has gone on far too long already. The stem cell harvest is done, they have double the cells required, frozen in a protective pool of DMSO, safe for the next five years.

Harvest time

So that just leaves the fevers. In the final days of this horrendous episode I had a CT scan. The results were damning. The lung nodules had grown, further nodules had popped up in my spleen; pretty much all of my lymph nodes were enlarged. A biopsy wasn’t even required. In the three weeks since my last scan I had once again managed to relapse, relapse with a vengeance. This means, of course, that of my three doses of ICE, one worked, one was dubious, and the final was utterly useless. All it did was increase my reliance on donated red blood cells and platelets. In July I just wanted to make it to Christmas without a relapse, instead, I have relapsed twice. Yes, I am a bit bitter.

My discharge came suddenly. I could not be discharged to the cancer accommodation we had been staying at for the last four months as I was still symptomatic for c.diff and my fellow immunocompromised inmates could contract it from me. Mike called his brother and we made a rapid transfer to his place, and, ah, we kind of haven’t left. I am not going back to the cancer accommodation. It is existence, it is not living.

As the clinicians discussed plans B, C, D, F and probably Z, I was left to battle the fevers myself. I had a column of cuts running down my thumb from the paracetamol packaging. The fevers became more and more frequent and debilitating with each passing day. I was a broken mess, and all the King’s horses and all the King’s men were struggling, really struggling. They have since put me on Prednisone, hence the hyperactive nature of this post, which usually works for ten days. I’ve been on it sixteen now and it is starting to wear off, a few symptoms are sneaking through, but it has given me a fortnight of faux energy and actually feeling alive. Obviously, the transplant did not go ahead, but plan BCDFZ has been written, in pencil, and further treatment is imminent. We are just not sure quite when. There have been, and still are, a few complicating factors, but I will go over those in a later post. I don’t have the energy to discuss them right now. We will be in Wellington for a few more months yet. After a year of treatment, I find myself back at the start.

  

A statistically bad chemo

I think the less I say about my last chemotherapy experience the better. Even the minimal information I do intend on parting with will probably gross you out. Basically, there were too many bodily fluids flowing from too many orifices. There are certain biological functions that, as an adult, one assumes they will always have under control. Ah, welcome to hospital! Here is a bag for your possessions, and another for your dignity. You’ll never get the latter back. The majority of the three days was spent playing trial and error with food sources in a vague attempt to keep said sources in my stomach. The error rate was high. Eventually, I stuck to minute sips of water. Despite my vomiting, shame, and general sentiment of doom and destruction, it was difficult to feel sorry for myself. The guy through the wall from me would heave for an hour straight. I, at least, threw up my pathetic meals rather quickly.

We are not entirely certain what lead to such an extreme decline in my chemotherapy tolerance. There were two variables, which I know is terrible science but I cannot help that now. I am beginning to think that biology is more of an art than a science. I will use this to justify my multiple variables. Anyway, where was I? Variables, right. I had begun a rigor-fever cycle a couple of days prior to this round of chemo. The fevers were never massive, they were deemed low-grade (which I believe means less than 38°C) by the medical staff. This time the rigors were blamed on the lymphoma despite my full blood count resembling an infection. I may have questioned the numbers. Twice. I still suspect I had an infection. The rigors do not matter much now, they have resolved, but a week ago they wore me out dreadfully. I was like super tired before chemo even began. 

The second variable involves the anti-emetics, which were altered slightly. They withheld the steroids. Initially I was happy with this move. I do not care much for the side effects steroids have to offer me, namely the pressing need for two a.m. snacks. Unfortunately, here I need to swallow what little pride I have left and confess: chemo is easier with steroids on-board. I feel better throughout and I feel better afterwards. Perhaps this may be deemed performance enhancing, but seeing as I am not a Russian track athlete, I don’t think anybody is going to mind too much. The day after my discharge I spent twenty hours horizontal, fighting, not really fatigue, but some haze between the real word and unconsciousness. Aside from a vague nausea and a relatively vocal stomach, I was not in any real discomfort, my eyes just refused to remain open and I could barely move. Next time I will take my dexamethasone like a good little girl and, perhaps, have days of production rather than destitution.

I have written more than I intended about my last chemo. It is a period I care to forget about. The topic I had actually intended on writing about is statistics. This could be an opportunity for you to stop reading. Things may get a little dark from here on, and the word ‘statistics’ has been used so, naturally, I expect some of you have drifted off to sleep. Also, I may mention particular statistics that you may not wish to know about. I kind of wish I did not know. I have stopped asking. So if you want to tag out right now I really don’t blame you. In fact, I admire you for lasting this long. Chocolate fish all round.

In July, after I received my unfavourable news, I was forced to think a bit. People talk about glasses and their perceived volume; is the glass half empty or half full? Most would probably decree that I was a glass-half-empty type of girl. To be honest I never really put much thought into the matter until I was, well, forced to. Upon reflection, I realised I was the type of girl who obtained, through certified channels, the exact capacity of the said receptacle, analysed the volume of the liquid within the receptacle using a traditional measuring cylinder, confirmed the result using a weight based technique (verifying the equipment's calibration status in the process), and had therefore discovered that the liquid occupies 47.25% (+/- 0.25%) of the volume of the receptacle; so indeed the glass is more than half empty. What I am trying to say is I like to know all the facts. And then I will overanalyse those facts.

In early August I became a little obsessed with statistics. I listened to the doctors, I read the textbooks, the papers, the review summaries; I knew the feedback cycles, the treatment regimes, the drug interactions. Then, sometime during my August-September diagnosis period, I developed a thought pattern, probably incorrectly, that medicine as a practise was entirely statistics. The case studies, clinical trials, meta-data analysis, create these numbers and percentages that are then used to treat patients. This is why my diagnosis process was so thorough: “It is very rare, Mrs Stocker, for you to have relapsed or refractory lymphoma given your clear scan in April.” It is like 8% rare or something like that. Not really rare, more statistically unlikely. I had a 92% chance of achieving remission and I blew it. Somebody needs to make up that 8% and once you find yourself in that minority group you cannot wish yourself out of it. As soon as you do that you are effectively wishing it on someone else. I would never wish this on anyone. For the 92% who made it through I am happy for you, but also a tiny bit jealous.

Having been blown away by stupid minority statistics, it is difficult to take the rest seriously or optimistically. Apparently 50% of patients are successfully harvested. Given my rapid relapse, that figure drops below the half mark; somewhere between 25 and 50%. So I had a 92% chance of remission and now, with some extremely positive thinking, it is around 40%. I began shying away from success stories, as if those whose treatment worked chipped into my 50%. It is not that I didn’t want other patients to be successful, I just didn’t want to hear about it. This is, of course, absurd logic. Each individual’s case is mutually exclusive, statistically not even medically. Medically each case is like an ENZA orchardist comparing apples with apples. I started to get cranky. What does ‘successfully harvested’ even mean? Do age, previous medical history, or charming personality effect these statistics at all? Is there a time frame? Is it six months? Three years? Five years? I would be happy with five years, hell, I would be happy with three. What happens if I am unsuccessful? Actually, I know the answer to that one: more treatment, worse statistics.

Eventually I became overwhelmed by statistics. 50% of salvage chemotherapy patients present with neutropenic fevers. 1% will die from these fevers. Less than 1% of patients fail to have a PICC line inserted. 99.9% of female salvage chemotherapy patients over 25 years of age become infertile. 50% of patients discuss fertility preservation options. 50% of patients who discuss fertility options actually take up the options. 10% go on to use the stored material. It is ‘unfortunate’ but not ‘unheard of’ to have needed multiple biopsies pre (or mid) diagnosis. At least they did not attempt to quantify that one. I have a scan coming up that will alter my statistics. Not the scan itself, but its results. Over the last couple of months I have stopped reading the statistics. I cannot change them and, although there is no point in dwelling, I did tend to fixate on them a bit. Ok a lot. Now, in order to make an informed treatment decision, I am required to read the science and statistics once again.

In here, this cancer institution, this day ward, this haematology ward, we are all unfortunate statistics. Not one person I have met has obeyed the textbook. Bone marrow transplant patients have had failed stem cell transplants. They were happy with the time they got. In the community the people one meets are usually survivors. Here, they are sufferers and complications. And there is always someone more worse off than me.

Some days I get hung up on the statistics. They are totally beyond my control and I think that is what bothers me; there is nothing I can do to change which side of the statistics I fall on. I get frustrated, sad, and angry. Other days I find it all oddly liberating. That life plan that always niggled at the back of my mind, a career, a house, some kids, a few cats, a handful of chickens (they would get along with the cats just fine), that plan doesn’t exist anymore. It is not even possible. I mean, Piper would never tolerate a chicken. During the days of liberation it feels like there are no expectations of me, like the only thing I have to worry about is being on the good side of statistics, the statistics I can participate in, but cannot control. It is odd to have these contrasting days. I would say that there is a strong correlation between how I am feeling physically and how I am feeling emotionally. So is the glass half empty or half full to me? Well, unless we are talking about a beer jar, I really do not give a damn.         

Trees, Sepsis, Hair loss

Friends! I have an update on the faux Christmas tree. Two months prior to Christmas the tree has been removed from the naughty corner, replaced by a non-descript pot-plant with glossy green leaves. The Orwellian in me wishes it to be an aspidistra, however, I really cannot be certain. I am unsure what the fake Christmas tree has done to redeem itself. Perhaps it is merely a ruse. Perhaps they will present the tree again in December in an attempt to fool us guests, pretend they have made a Yuletide effort when really they had forgotten it for ten or so months. However, I shall not be fooled by their guise, as I will still be here in December. I will endeavour to keep you updated on this faux tree’s fate. Until then we are left with this non-descript pot-plant, a pot-plant that is really too tall to be an aspidistra, destroying all irony I was intending.  Perhaps I am reading too much into this situation and the real reason the tree was removed is because they, whoever “they” are, read my blog. I mean, all the cool kids read it, right?

One Friday night recently, when the fake Christmas tree remained in a position familiar to me, I had a rather memorable dream. It did not involve the tree. The slumber on the particular Friday night in question was induced by a magic pill. I had experienced consecutive sleepless nights and in order to prevent a deformed second head from rising through my neck bling, roaring with a bitchiness only ever induced by lack of sleep, yes to prevent this highly probable event from occurring, a magic pill was consumed and thus the dream followed. I will warn you now; the dream is not that spectacular. There will be no civil rights movements, or anything of the like, resulting from its documentation. It was merely a vivid dream. A vivid dream I intend on telling you about. Eventually. Just a bit of background information before we begin: when I rigor I am usually running a temperature so although I feel extremely cold I am actually burning up. This means I am usually prevented by the powers-that-be from warming myself up. No hats nor blankets nor hot water bottles, indeed sometimes they place cold flannels and iced water on me instead despite my persistent protestations.

So it was a Friday night (I think), I was drugged (voluntarily), I was asleep (possibly), and I began to feel cold. In my dream I was cold, shivering in fact. Now Dream Liv is a pretty smart cookie. She realised that those surrounding her, which at this point in the dream were her husband and a bunch of nurses, would not take kindly to this shivering. She knew these individuals would try to admit her into hospital, a place that neither her, nor Reality Liv, wished to be. Dream Liv needed to conceal this shivering and hopefully warm herself up in the process. What better way to do that than to dive further under the covers? This would provide warmth and was not at all conspicuous. Dream Liv even congratulated herself, cackling away at her perceived ingenuity. The nurses with needles could not find her, the ambulance had crashed, her husband was talking to her, louder, louder, shaking her; oh crap Reality Mike had cottoned on to Dream Liv’s antics and was attempting to summon Reality Liv who, in a Zopiclone laced fever, simply ceased to exist. “This thing [thermometer] is beeping at me!” cries Limbo Liv “What is it doing?” Get the beeping away from me!” Reality Liv eventually emerged around 10am, frozen in a pool of her own sweat. This was the third time I had had a hospital dream. The previous two had landed me in hospital. My sub-conscience was more alert than I.

I had not experienced a rigor episode since I began chemo so this incident took us a little by surprise. My head felt over-inflated all day, as if all my blood had been forced into my brain and I now resembled Mr Mackie. Further rigors, persistently raised temperatures (the thermometer and I had reconciled), and numerous nonsensical statements lead to a Saturday night ED visit. I knew it was a Saturday, but had forgotten that Friday was the day prior. I kept informing the clinicians of my blood results “from Friday”. I felt as though a week had passed when it had merely been 36 hours. Upon my VIP entry to ED my heart rate was 165, temperature 39°C, and all my lymph nodes were inflamed. My spleen hurt. My spleen and I have had a decent relationship these past few months and I was upset that this relationship was once again strained.

Ultimately, I was petrified that the fevers, rigors, sweats, nodes, and delirium were due to my disease. I had felt far too well post chemo, it was quite obvious to Fever Liv that the chemo had not worked at all. My lymphatic tumours were fighting back, punishing me for my continuing insubordination. But apparently no, these fevers differed from my disease fevers, I actually had neutropenic sepsis. I am unsure how many people are relieved to hear such news but I can tell you that I certainly was. Prompt IV antibiotics and fluids reduced my confusion but did not induce any sleep; I spent the night in my private ED room listening to the fallout from a high school ball. Sunday morning, mid-rigor with my face burning, nausea overcame me. It was not pretty. I vomited through my hands, on myself, on my bedding; vomit smeared across my shivering face I was desperate for a receptacle to make the situation a little more dignified. Eventually I spied my water jug and proceeded to fill it with my stomach contents, my teeth chattering throughout. To be quite honest I felt dreadful. Utterly dreadful. Upon discharge, some five nights later, I read that I was deemed ‘well’ in ED. If I was well, I do not ever wish to be deemed unwell. My septic episode was mild in comparison to the many others on the ward combating the same thing.

Scaring all the adults with my neck bling

I do not have that much hair anymore. The day I was discharged I spent $40 on a bad haircut. Two days later my hair started falling out. In clumps. One morning I woke to find a substantial volume beside me on my pillow. In the twisted irony that currently seems to be dominating my life, it appears I am allergic to my own hair. Not anaphylactic allergic, more rub-your-eyes-constantly allergic. Irritated is probably a more apt word. The next morning left me looking like a soccer ball that had been left outside the entire winter; dirty and slightly waterlogged, the leather sagging to leave distorted white and black patches. I had lost a third of my hair in one day; a number one was necessary. The day Mike shaved my head I was required to shave my legs, but not for the same reason. And I still have eyebrows as bushy as Bert’s. Eyebrows appear to be stubborn beasts. How do I look now? Well, now I look like a cancer patient who has recently lost all their hair, but none of their eyebrows. I look silly really, very silly indeed. In fact, I have taken a break from practising head scarf knots in order to write this. After two hours of practice, frustration, and tantrums, I think I will just opt for a skullcap. Finesse is not really in my repertoire.

So my hair fell completely over three days. With ABVD it took six months and even then I was never entirely bald. I caught an unknown infection that hospitalised me after my first cycle of ICE, yet my neutrophils were only low for a few days and I had been vigilant with diet and hygiene. With ABVD I was a little more adventurous, had lower counts for longer, yet I was never unwell. On the plus side, my mouth is ulcer free and my throat is still co-operating. Other than the hair loss and the sepsis, I have had few side effects. Except, of course, fatigue. I have instigated pre-bedtime naps, on top of my post-breakfast naps and my siestas. Yes, the fatigue is strong in this one.       

Inpatient notes

It is rather difficult to begin these posts. For this particular entry I do, at least, have a rough plan in regards to content. Beginnings, however, are a little tougher. Rather than pouring over the notes I made as an inpatient, my eyes instead dart around the room in search of creative inspiration before finally focusing on inconsequential features. An item that has struck up particular interest with me today is a medium-sized faux Christmas tree leaning at a slight angle against the corner of the lounge area. Given it is now October I can only assume the tree has been in such a position for at least ten months. It may well have been sitting there for years. Perhaps it is doomed to lean like a naughty child for the remainder of its days, the transient tenant population here would never notice. Yes this unseasonable tree is an insignificant, yet still a distraction, and thus I am no closer to beginning this post.

“Pouring” over inpatient notes is somewhat hyperbolic. Such a word implies I wrote substantially over those five days, that I have screeds of brilliant jots just waiting, begging, to be stitched together, inevitably forming a mythically beautiful piece of prose. This is not quite reality. Indeed one day I merely wrote “two hours sleep total”, I mean, that is hardly Man Booker material. It is not even grammatically pleasing. But I guess we should be grateful that I did at least make some notes elsewise there is a high chance that I would still be waffling on about fake Christmas trees. I think the general theme one can take from these now infamous inpatient notes is that my first round of chemo went rather well. Almost eerily well. Like, I keep expecting something to jump up behind me, or to receive an ominous phone call, or, I don’t know, some sort of clinical setback involving zombies, vampires and rabid dogs. Unimaginative, I know, but that is where my mind first raced to.

I may have mentioned in my previous post that this ICE chemo regime is to be administered as an inpatient rather than as an outpatient. Hence the formation of inpatient scribbles. Despite my nocturnal rigor-fever-sweat-rigor-fever-sweat-sweat-sweat routine, I felt aptly prepared after my first night on the ward for the twenty-four hour Ifosfamide infusion I perceived I was receiving that day. It turns out that the Ifosfamide infusion happens the second day not the first. The first day is merely a thirty minute Etoposide infusion, which actually is a nice way to ease into things, but I must confess that administering drugs out of acronym order did boggle my over-analytical brain just a bit. If we may, just for the sake of completeness, confirm the actual acronym, then technically it ought to be EECIE. Not as memorable, granted, and phonetics could pose a problem especially as I have some accent confusion when it comes to e’s and i’s, but I feel it gives one a more accurate indication of drug order. But do not fear! The remains of my first day were not all in vain, I was rewarded for my efforts with another blood transfusion. I will blame my marginal haemoglobin for my more-than-marginal breathlessness in Wharariki. This transfusion was somewhat comical as, owing to difficulties regarding vein size and PICC lines, I currently have a central line protruding from my neck. I rather felt I resembled a paradoxical vampire. An uber efficient paradoxical vampire.

The Master would be so proud

It is difficult to know if the following sleepless night was due to the transfusion or due to the dexamethasone, which is given as an anti-emetic. Possibly it was due to both. Dex is hardly Prednisone but it does have the ability to keep one awake at night. What I can assure is that this was not merely a tossing and turning night. This was a ‘let’s go for a run’ night. My legs did not wish to maintain a horizontal position despite protestations from my heavy brain. Background nausea had kicked in you see, sleep would have been well appreciated. Instead I relied on mouthfuls of ginger beer, regular blood pressure checks, and Albert Camus to pass the night. That day I was connected via my neck bling to the ever-eager-to-beep pump machine for the remains of my chemotherapy, administered ECIE over thirty hours. I managed to sleep all day and all night. In hindsight the sleepless night may well have worked in my favour. It is best to be sleepy when immobile.

I woke from my slumber marathon much resembling a puffer fish. My hair and eyebrows askew; my hands, feet, knees, and cheeks bloated and swollen; well it all compounded to form this aggravated fish look. The Ifosfamide is given with litres of fluid. It is rather toxic to the bladder so the clinical team wish to keep urine output to a maximum, in fact they actually measure the urine. All of it. When they weighed me that puffer fish morning, as they did each morning, I had gained four kilograms. Well I can tell you, cancer or not, no young woman (I’m young in the haem ward) wishes to be told such things. Overnight? Four kilograms? If I had had any facial definition remaining I am sure I would have frowned. I informed my nurse that I had attempted to self-medicate with a nice New Zealand long black. Coffee, however, is a weak diuretic and the one she had to offer me was ‘very, very strong’. What does ‘very, very strong’ mean? Well it means I now know my bladder capacity is about 900mls, and I had to completely empty it three times in the first hour. That roughly equated to three kilograms, visible kilograms too; I had my cheekbones back within the hour. 

And that, friends, was the height of the drama. A mere puffy morning. I did not even throw up. I slept a lot. I continue to sleep a lot. I am not quite at narcoleptic levels but my body is certainly making up for the many nights lost due to rigors and fevers and sweats. In the first of what I can only assume will be many comparisons to ABVD, ICE went pretty bloody well. I recall that complacent day in January, a day that feels a lifetime ago, with horror, and horror is what I expected to experience again. Perhaps in preparing for horror the horror itself dissipates. Perhaps Kurtz just needed more preparation. These past two months I have watched fellow patients begin their treatment and never once, funnily enough, was I jealous of them. I did not wish to start treatment but now that it has actually begun I am glad. So for now I leave you as an outpatient feeling ‘not too bad’, although I do suspect the decline and subsequent fall will be rather drastic.               

I have some news

Puponga, Golden Bay. The farthest north, the farthest west I can possibly get within the Tasman region of the South Island. From a bed, I lay looking out into the clear dusky sky, no cloud, no smog. Only the erratic unsettled movements through the native treetops contradict my perspective of a still and tranquil evening. The day has been good, great even, and although I feel tired now, it is more due to physical activity than any particular disease process. I have, of course, used the term ‘activity’ loosely as it was not the most active activity. Overweight old men stealing sideways glances at my audible breathlessness whilst resting (er, I mean, admiring the view) atop a small summit “She doesn’t look unfit” they’re thinking. I managed it though, the one kilometre walk over small summits, the clambering, sinking, falling, over, in, and around the giant sand dunes. At one point I began to read far too much into my own wildlife metaphor as I lay amongst the dunes watching the seal pups play in the rising tide, in the surging waves, in the small river feeding into the wild sea. There was, also, excitement when I realised my hair is now long enough to be wind swept, albeit requiring a Wharariki wind. As the afternoon went on and the gusts turned to gales, I managed the one kilometre walk back over small summits, again with sideways glances from overweight old men and, a new addition, concerned stares from international tourists, tourists who were promised an easy walk to see some beautiful dunes so why is this local girl with her wind swept hair audibly breathing so very hard? Hence now my physical exhaustion.

Did Gertrude Bell find sand walking quite this hard?

One pillar of wisdom.....

A little over a week ago I had a bronchoscopy. A camera is fed down through the airways, usually the nasal passage, into the depths of one's lungs. Whilst down there the team squirt in a bit of liquid, let it rattle around for a while, then aspirate it back up again in the hope that the fluid will bring a few respiratory cells along for the ride. These cells would then, again hopefully, culture some bugs and give me a diagnosis that isn’t lymphoma, a diagnosis more like Tb whose symptoms happen to mimic Hodgkin’s Lymphoma. I have spent the last two months wishing, actually hoping, I had Tb. The procedural idea is to administer IV anaesthetic, enabling the patient to experience a mild amnesia and ensuring they remain compliant with the clinician’s instructions throughout the thirty-minute bronchoscopy. I am unsure of what happened in my situation, whether the drugs took a little too long to kick in or if not quite enough was administered. I do, unfortunately, recall the procedure rather vividly. Oh, and no I was not compliant, although, I assure you, I had every intention of being so.

The consultant could not get the hook of the camera into my nasal passage, a ‘petite nose’ apparently, (I think she means ski-jump but I’ll accept the euphemism) and so the oral route was required. A rather large black tube was eased down my throat. I couldn’t control my coughing, which quite quickly converted to heaving. Occasionally I calmed myself with periods of nasal breathing; these periods never lasted more than five breathes and I must admit I was breathing rather rapidly. My coughing, heaving, nasal breathing routine proceeded for a half hour or so, looking up at the stark lights and black cylinders (I was calmer with my eyes open), listening to the doctors bark instructions “more fluid, more fluid, more fluid” – “Please no more fluid” I am thinking however it comes out a more muffled “mew err err cough cough cough aherr herr herr aherr herr”. Eventually, they aspirate the fluid from my lungs whilst verbally considering whether to biopsy one of my beautiful lung lesions. They can do that, you see, while they are down there. By now I have realised my ability to communicate using vocal tones is severely diminished and therefore I attempt a more telepathic approach; “No, no, no, no, please no, I will wait another month for diagnosis, two even, if it means ending this torture now”. The consultant is still audibly considering her decision with ‘umms’ and ‘ahhs’ but picks up my wicked brainwaves and opts for “No”. I am unsure what a sigh of relief sounds like with tubes in one's lungs but I feel that this is what I delivered. As punishment for my non-compliance, I was to cough up blood and the occasional clot for the next twenty-four hours. “Traumatic” they termed it, which, even for me, is a bit over-dramatic.

How are you going? Frustrated at my small talk? I have covered the weather, what I did last week; I wonder what else I can waffle on about before I actually have to give some substance to this post? A hometown friend of mine drew a slight smile from me when I saw her last; “Right, what is going on?” she asks, minimal pleasantries, direct and to the point. Perhaps that is what I must do here, plunge right on into it rather than attempting to give any flow to my writing. Two days after my experience with a bronchoscopy the histological results from my axillary nodes confirmed Hodgkin’s lymphoma. In hindsight, there was no need to go into my lungs. So now I am officially diagnosed with refractory Hodgkin’s lymphoma. In a lovely little laboratory paradox, once the lymph node biopsy revealed lymphoma the bone marrow trephine could also confirm it. The bone marrow morphology was slightly abnormal, not conclusive of Hodgkin’s, further investigation would be required if I did not have Hodgkin’s, but made perfect sense once Hodgkin’s was confirmed. Gotta love those scenarios. On the plus side, my haematology consultant has promised me a trip to the lab to examine the morphology myself and to have a sneaky peak at their brand new Sysmex analysers. I may, just may, take the opportunity to introduce myself to various laboratory staff, have a sly look at their laboratory procedures, who knows, if I continue to talk the talk I may be able to line up a job at the end of all this. Oh, the prospects! Possibly not with my recent ‘let’s get the haemoglobin level from a citrate sample’ suggestion, I am not sure that went down too well with the purists out there.

OK let us summarise that jumble: I now officially have refractory Hodgkin’s lymphoma, it is in my bone marrow, the haem team have allowed me a brief convalescence trip to Nelson/Golden Bay (they don’t actually know about the Golden Bay part, that is our little secret), I get to visit the haematology lab in Wellington to (perhaps) make some friends.

Where do I go from here? Treatment, obviously, needs to be discussed. What else? Statistics? Well, I think most of us don’t really find p-values overly exciting so perhaps statistics will be left for another post. I am sure I will, at a later point, get into the nitty-gritty of the treatment regime so for now, I shall give you the minimum required to be informative. The next step in the treatment chain is salvage chemotherapy followed by an autologous stem cell transplant. Although this sounds like something involving controversial ethics and an impromptu trip to India, it is nothing quite so exciting. The first treatment goal is to get rid of the lymphoma, which is where the chemotherapy comes in. They are going to give me regime called ICE. No that is not a Breaking Bad reference it is indeed my chemo regime: Ifosamide, Carboplatin, and Etoposide. I am sure in the coming months there will be various moans and groans about each of these drugs therefore, again, I shan’t delve into too much detail at present.

Three ICE cycles are planned with each cycle spanning three weeks. As ICE is administered over a seventy-two hour period, I shall be an inpatient for three days each cycle. The number of the day, by the way, is three. At some stage, after my final dose of ICE my own stem cells will be harvested from my blood and preserved before I get zapped for about a week with high dose chemotherapy. The haem team have never named this ‘high dose chemotherapy’ making it all the more ominous. For the record anybody who thinks they are escaping a scientific version of events is rather delusional. All that is to come, my friends, it is just not necessary for this particular post. After the ‘high dose chemotherapy’ (cue spooky music) they reinfuse my stem cells, which have been protected from the ‘high dose chemotherapy’ and I have three weeks or so whilst the transplant settles in where I am pretty much bedridden. Throughout both the ICE chemo and the high dose I am going to be reliant on blood transfusions, platelet transfusions, sodium infusions, magnesium infusions – pretty much everything. Anyone out there contemplating donating blood would get enthusiastic encouragement from me.

As with anything medical related, plans are likely to change. Scan results, the way my body reacts, even funding, all have the potential to alter plans. This is the plan for now. My 'holiday' in the Tasman region is nearly at an end and it will be unlikely that I can escape again this year. I will try, oh yes I will try, but at this stage, I am Wellington-based for the foreseeable future. The foreseeable future being, of course, three months.