Seeing as it was so fun the first time around, let’s try chemo again

I am afraid this entry will be a little boring. Good for me, less so for you. I know my fans want drama; this could be a reality TV show in the making. On more than one occasion by more than one individual, it has been mentioned that I have a tendency to be slightly dramatic. I’ll see what I can drum up for you. 

Friday evening, mid nose bleed, post one glass of wine, I received a call from the Brighton haematology day unit just to let me know that my neutrophils were 0.8 (they need to be >1.0) so I would need bloods again before my scheduled chemotherapy. Essentially, they were telling me to expect a wait when I came in on Monday and not to be surprised if, on Monday, they decided to move my chemo to Wednesday. Clinically, if I were at work, I wouldn’t batter an eyelid at a post-chemo patient with a neutrophil count of 0.8. Maybe 0.5, but 0.8 meh. To be honest I was more concerned about my platelet count (a very normal 330ish for those interested) because this nose bleed had been going on for a wee while now. The objective of this paragraph was to let you know that, going into the chemo appointment, I was prepared for a wait. A good writer wouldn’t need to summarise each paragraph with its planned objective. 

Monday morning, post a magic pill induced sleep, equipped with food, music, books, writing material and nerves, we rode the bus (upstairs seats not downstairs) to the hospital, arriving a good thirty minutes early, giving time for those nerves to reach an unsuitably high level. I was annoyed at the complacency I had displayed when preparing my hair for the day ahead. Already it resembled a cross between a 1986 Bart Simpson and a 1981 Princess Diana. 

We were intending to leave and grab a coffee whilst we were waiting for the blood results, not the mud water Costa coffee that seems to plague every hospital in Britain, but a real coffee from a reputable coffeehouse. However, once I had established myself in my oversized salmon coloured chair, I was reluctant to move and too embarrassed to ask if I was allowed, so I picked up my book and settled in for the long haul. And it was a long haul. It took half an hour and three attempts to get the cannula in. I’d not hydrated myself enough prior to my arrival and, despite my current colossal appetite, I think I am still losing weight, so venous access was difficult. I am rocking a few bruises now – war wounds, makes it all look worse than it is! The lab had my blood results back within the hour; biomedical scientists are incredibly hard working and, globally, I think they require a pay rise. I’m sure you all agree. Anyway, I had a neutrophil count of 0.6. They had actually dropped, not gone up. Maybe I should be a bit more cautious about eating unpasteurised cheese…. 

The haem team decided to crack on with treatment anyhow, so now it is up to pharmacy to deliver the drugs. This must be quite a complicated process as it took over three hours. Ah, that is unfair of me, and may be due to a small degree of inter-departmental hospital rivalry. I imagine the prescription had to be escalated through various chains of command due to the neutropenia. They have rules for a reason, and here we were breaking them. Good. I hate rules. I have been occupying my large salmon chair for four hours or so before the chemo even arrives. Hurry up and wait. Luckily we remembered food.  There was one hangger experience, but Mike managed to subdue it with some nuts and an éclair.  

Nuts and terrible hair

The chemotherapy itself was significantly easier than the first experience. I was given some IV antihistamine straight up, so I didn’t have the reaction this time. All I got was a mild, nearly enjoyable, tingling on my lips, like eating too many pixie sticks whilst on nitrous oxide. They reduced the infusion rate of the dacarbazine, so initially the vein pain was only mild. It was reduced again when I said ‘yeah I am good, the pain is only mild this time’. They do not accept pain.

Prior to leaving the hospital I had a demonstration on how to inject myself with GCSF. This is granulocyte colony stimulating factor, and basically opens the bone marrow flood gates, with the intention of replenishing the neutrophils in my peripheral blood, making me less susceptible to infections. GCSF is one of my favourite haematology drugs. I am going to have a lovely leucoerythroblastic blood film that I am just dying to look at! Currently the injection is acclimatising to room temperature on the bench and I am rather nervous about the prospect of injecting it myself, but toughen up right?! Eight year old diabetic kids deal with like four injections a day. I also have my very own sharps bin, just in case I was missing work. 

Let's have some warnings shall we?

After chemo? Well we got home around 7pm, having left the house 8 hours prior. A massive feast of pizza and garlic bread followed; this went down far better than the Thai. Our Monday night ritual of attempting to answer four questions each on University Challenge was upheld, however the four questions part was a complete failure. Particularly disappointing as I missed quotes from both 1984 and Slaughterhouse Five; two of my more favoured books. Even post chemo this is unacceptable! I know a certain person will be shaking their head in disapproval right now. I am sorry. I was in bed by nine o’clock with a hunger/nausea/throbbing lymph node combo. A magic sleeping pill had me knocked out by nine-thirty.

Right now, Tuesday afternoon, I have just jabbed myself in the gut. The anxiety that I’d developed prior to doing so was enough to substantially increase my already present nausea. Fatigue is definitely high on the symptom list, despite the ten hours of sleep I had last night. I am eyeing up the ludicrously large bottle of Coca-Cola on our bench, but I think it will be more cytotoxic than the chemo. The skin on my hands has the texture of 220 sandpaper, maybe a grade or two lower than that. The four litres of water I am attempting to consume have led to frequent trips to the bathroom. My knowledge of abdominal anatomy is really improving, as the lymph node below my liver, the one near my pelvis, and my spleen are all letting me know their presence. I am dying for a beer. Do you think anyone would notice? Mike doesn’t read this and you guys won’t dob me in will you? Wink, wink, come on I have cancer. I promise not to bleed on you. (My god was that two Monty Python references in one paragraph? I need to stop typing!)

Oh I promised drama! Ok what can I do here?  Well my nurse for the day was Irish, from the North West, just south of the border. She made reference to those north of the border being a little dodgy. She works with a Northern Ireland guy who was deliberately within ear shot, and some light-hearted jibbing ensued.  Nothing like some sectarian workplace banter to make the day more exciting. For the record all of this was in good faith, and the nurse was lovely. I wanted to make it dramatic, but with such a delicate topic, well let’s just say I don’t want the level of exposure or controversy like that of the annual Tata Bay cardboard boat race.

Overall, I am somewhat detached from everything that is going on. Obviously not the physical symptoms. The fatigue, the nausea, the pain; I can’t avoid those, but the actual ‘I am a lymphoma patient’ that part I am not sure I have come to terms with. It seems it is happening to someone else not me. I mentioned in an earlier entry that I had the cellular effects down but not the physical ones. Well, now it has reversed; I am becoming accustomed to the physical symptoms, but the cellular level I am consciously oblivious to. The neutrophil count of 0.6, that isn’t me. I am not on GCSF, this is what happens to patients at work. It can’t be me. Maybe every patient has this same level of disconnection. Maybe it is my failure to link my workplace knowledge to my personal life. Maybe this is a good thing – leave work at work and home at home, but ultimately I think there is a small degree of denial going on. You know it’s not just a river in Egypt. I guess a small degree of denial is an OK thing, it certainly keeps the external positivity going. Just so long as any potential bad news doesn’t take us too much by surprise. Not that I am envisioning any bad news, but you know, well you never know. 

This weekend I felt like a normal person

The title of the post isn’t exactly accurate. As I sit now and type up my scribbles, it has become apparent that it is highly unlikely I will change out of my pyjamas today. The smears under my eyes are far darker and lower than my regular bags - a paternal gift, a definitive genetic link to my sisters and all of my Johnson cousins. Not a single one of us has escaped the ‘Johnson eyes’, although I think they’re from my Grandmother, so technically they are ‘Grieg eyes’. Anyway enough genealogy, the point I am trying to make is that I am knackered, and have just sent Mike (my husband can be named now) out for cake. I hope he brings back enough.

But this dilapidated state was totally worth it! I am happy to feel this shattered for the degree of normality that Friday and Saturday offered. My still disturbed sleep patterns resulted in far too much self-pity on Monday and Tuesday. By Wednesday, I had decided I really needed to get out of the flat. I’d had absolutely no sleep the night prior and vowed not to nap during the day in hope that it would lead to some sort of slumber in the evening. In order to do that, I needed coffee. My new mission in life is to find the best long black in Brighton (for those interested it is currently Mr Wolfe, with Nowhere Man a close second). Good British coffee is an exception, most certainly not a rule. Quite often I can’t even order a long black, I get some sort of washed out Americano mud water. There was a Guardian article blaming Antipodeans for ruining British coffee; there was nothing to ruin! God forbid there be any flavour. Maybe that is one for the Farage campaign; "immigrants ruin British coffee!" 

Anyhow, Wednesday this coffee quest started. Thursday, it required a three mile walk. Friday, my legs felt as though I had run a half marathon the day prior, when really it was merely a 4 kilometre shuffle, frequently interrupted by periods of rest. But, excitingly, on Friday I was going to Worthing for dinner at a friend’s place and into work to say hello to my colleagues, the colleagues I had so rudely abandoned over the Christmas period. I’d bought cakes to try and compensate for being so discourteous. My legs continued to remind me of my 21km achievement the day prior (slightly Quixotic), but it was an ache to be proud of and I felt enthusiastic about everything. Bright eyed and bushy tailed. The pallor I had developed since I last donned any makeup led to more of a Glaswegian shade than I had anticipated, but some colour is better than no colour, so I went with it. 

The route to the train station is extended to include what turns out to be a disappointing long black. I am feeling energetic so I can handle a small tiki-tour (yes, I have just Kiwi’d out on you). In my excitement I have started out too fast and am fatiguing too early. [Hmm, this sounds like it should be a Petite Feet post, although my distances may be marginally shorter.] Subsequently, I arrive at Brighton station exhausted. I deliberately decide to take the later and longer train in order to have more time sitting down. The heavy breathing I am displaying implies I have made one of those infamous sprints towards a departing train. This is rather embarrassing as I am now slumped on a seat in the carriage, 15 minutes prior to the scheduled departure. I am receiving a few sideways glances “Why is that orange hued girl panting on a train that is not even remotely close to leaving? Also, why has she scattered all her possessions throughout the carriage?” I am wondering if I need a TFL ‘cancer on board’ badge. Do they make those? I really hope they don’t.

The ten minute walk at from Worthing station to my workplace is prolonged due to my deliberately slow pace. Elderly people are passing me.  Elderly people with canes. The three bottles of wine (they’re not for me!) in a carrier bag are making my left shoulder sore. I develop a stoop. My teeth are chattering. I resemble the female offspring of Quasimodo and an oompa-loompa, without the psychological issues. Or the chocolate. Or the musical talent. You’ve got to admit, the said offspring should have some sort of musical talent. At least a sense of rhythm, a knowledge of bells, maybe even a nice signing voice. I have none of those. Another deviation from the story. Sorry.

I pause to compose myself at the top of the stairs before making my grand entrance into work. This pause lasts five minutes. My lungs are burning and I now have the shakes. I give up on composure and wander into the lab. Physically, I feel below average and I have received a minor sermon from my very good friend who, although two years my junior sometimes adopts a tone similar to that of my mother, on overdoing it and how I shouldn’t be so stubborn and should be accepting rides etcetera, etcetera. So physically crap, but emotionally I am on top of the world. Social interaction! Lecture me as much as you like, just keep talking! My work mates are fantastic. They let me rant on and on about the state of the world, UKIP, Israel, books I want to read, books I have read, books they should read and some rambles about genetic feedback cycles and possible hypothesis on the cellular cause of Hodgkin’s lymphoma. They give me some stick, I give some back. Someone gives me some stick and I get a bleeding nose halfway through it. Perfect timing, I’m a cancer patient you know, you can’t be too mean to me. I even glance down the microscope at a blood film. The patient obviously has lymphoma; every sample I see will have lymphoma from now on. I am smiling from ear to ear, I have never been so happy to be at work. I feel normal! I feel better than I have in months! My colleagues present me with a gift they’ve all pitched in for. Turns out they know me quite well.

Beer and cheese? I love you guys!

The evening that followed was perfect. I’d managed to get the last bottle of a Central Otago Pinot Noir from our local bottle shop (ok so maybe one of the bottles was for me) and it was exactly what I wanted; although not an overly affordable craving to maintain. The food, the company, the setting; who could have thought it would make one feel so happy. I completely forgot I was unwell. Mike and I lost track of time and missed the last train home. Exactly like old times. I wanted to give my friend a hug before I left, but we all know how awkwardly that would have turned out. I wouldn't have wanted to ruin a good evening. I like to blame my nationality, and my profession, for my awkwardness.

The following morning I was still flying high. Friends were coming down from London for a catchup. My regular ‘I’ve just walked a mile so now I need to shake uncontrollably’ tremors accompanied me in greeting them at the station, and I had to reassure them that although I look pathetic, I really feel quite well. It’s hard to do this when you can’t physically drink your coffee (a substandard and far too hot long black) without spilling it. Once I had assured them I didn’t need a wheelchair, Mike and I had another fantastic day showing friends around Brighton. Coffee, beer, Mexican, a margarita, sage tea…. Just a normal Saturday. Even a trip to the appalling-yet-must-see penny arcade on the pier (let’s sell gambling to kids) had a rosy glow. Nattering away to each other, politely and impolitely being moved on from each place as our drinks were long dry, I had again, forgotten that I was unwell.

Even today as I type this (poorly I know) I don’t feel sick. I feel tired, and I have a mild discomfort in my abdomen, but I don’t feel unwell. And the chocolate éclair Mike got me from the dangerously near French bakery has improved my lethargy greatly. I let him have one bite. So generous of me. Emotionally, I am prepared for my second dose of AVBD chemo tomorrow, and physically I will be fine as I have saved my last magic pill to ensure I sleep tonight. 

Whom to tell, how to tell them, and some poor examples of both.

Those of you who know me will be well aware that ‘keeping in touch’ is not my forte. This is somewhat ironic given my ability to talk; the only method of shutting me up is to take my beer away from me, especially if I end up on one of my rants. It is apparent in these entries that I like the sound of my own voice, internal or otherwise, but when it comes down to communication on actual matters and goings on, well you can just forget about it. There are people I consider very close friends, yet I haven’t contacted them in over a year.  This shortcoming is not restricted to friends; family get the same level of slackness. My parents are probably feeling quite smothered given the abundance of skype calls they have received lately.

My local friends I work with; they had been watching my health deteriorate over the months so the diagnosis was less of a shock for them. Still, the news was not put to them very eloquently. I was interested in their thoughts whilst I bumblefucked my way around informing people. In hindsight this was probably something I should have read about prior to undertaking, but as it was I only read one post about a guy with Hodgkin's Lymphoma who didn’t tell anyone, not even his fiancée. Subsequently, his entire life fell apart. The take home message – some people do need to be informed. 

Due to some freak arrangement in the planets and their moons (clearly the only reason), I had mentioned to my parents in November that I’d been feeling unwell for a wee while and had an unresolving chest infection. Another astrological intervention led to a WhatsApp message to my Dad the morning of my hospital admission, in which I remarked that I was feeling particularly ‘poorly’ (for any British readers out there – I can’t have it all being Kiwi lingo). From this point they were updated regularly, thanks to some gentle prodding from my husband, and were pretty much left to deal with the fallout in NZ. But, and here lies the first of many mistakes, I had instructed my folks not to tell my sisters. One sister is aware that I have been unwell but will worry if she knows; the other is on her honeymoon en route to New Zealand so there is no need to bother her. Although the diagnosis was not official until a week or so after I was discharged, five days into my hospital stay it was pretty much confirmed as they had moved me to the cancer ward. Anyway, I digress, back to the story.

Essentially one sister was phoned out of blue to say that I was in hospital and I probably had cancer. I didn't make the call. The second sister and her husband turned up at the Picton ferry terminal, 6am in the morning, three days before Christmas having not seen my parents in over 18 months, and at some point, during the two hour car journey that followed, was informed of the news. Regular contact does not necessarily mean communication because she and I talk often and I had never mentioned that I was feeling unwell.

Having successfully dampened my family’s Christmas, my husband and I set about ruining that of my in-laws. In an attempt not to destroy their Christmas, we had decided not to tell his siblings until Boxing Day. Withholding information worked so well the first time around, let’s do it again! Unfortunately, due to time zones (another astrological event!) it was Christmas morning in New Zealand, Christmas Eve in the UK, so I had just been discharged from hospital. What followed was a skype call that belonged in Curb Your Enthusiasm. Awkward. I kind of hope the government was spying on it, just for the comical value. Perfectly reasonable questions from my husband’s family - “Where is your drink guys, it's Christmas Eve?” “Ah urm…..” silence, “Are you going away for the Christmas break?” (We’d just cancelled our Boxing Day trip to Amsterdam) “Ah…. Liv has to work” which, as we know, was a flat out lie. Throughout the conversation I am trying hide the oversized white bandage on my neck that is covering my biopsy site. Yay for video calls! Ten minutes after the call ended my husband gets a text from his brother. Obviously our act had not been convincing. Oh well, now they know. I guess what I am trying to say, in my longwinded style, is that if you’re lying in hospital with a possible cancer diagnosis hanging over your head, tell your immediate family. At least it is a warning for them. I did my sisters a great disservice by not informing them sooner.

So we move to friends and colleagues.  I was in a pickle. As I mentioned, the diagnosis was a forgone conclusion; the chances I didn’t have lymphoma were exceptionally low. But I didn’t want to say to everyone “I’ve got cancer” and then turn around and say “oh no wait I don’t. Sorry guys, my bad.” I mean what a dick. [My internal dialogue has accentuated the kiwi accent on the word ‘dick’ and I would appreciate if everyone else would also do so. It is one of the few words that is best said with a New Zealand accent.] I am not at all implying that anyone who has done this is a dick, because that is not at all the case. I am just trying to convey my thought process at the time. And, for another matter, if you know of someone who has done this, please understand what they were going through. It is very difficult. Oh, I believe that was my first lecture!

Another digression, I apologise, back to my pickle. I needed to make sure I wasn’t expected at work any time soon. A select few in the lab had been updated on the probable diagnosis. They all found out via text. Maybe one face to face. It was all very blurted and blunt. The phone call to my senior goes something like this “Hi it’s Liv, am I on the rota next week?..... Ok that’s good, well just to update you, I am still in hospital, I am under a haematology consultant, they think I have lymphoma - which, well makes sense really, and I guess at my age it’s probably Hodgkin’s, but I don’t know when I will be at work next.” Apparently he was mouthing ‘holy fuck’ to my friend sitting beside him. 

Other failures include a WhatsApp message to my mate in Australia: “Thanks for the Christmas card it lit up my day. Unfortunately I have ended up in hospital so the card has brightened up my bed area. You’ll be pleased to know my nutritionist is Australian.” (I can’t believe I used the word ‘brightened’. Yuck.) This message, at the time, made perfect sense to me. But you see my friend is pregnant and I had deliberately avoided telling her how crap I had been feeling, so it probably came as a shock to her. I was narcissistically assuming that everyone was aware that I had been unwell. Another fine botched example: on New Year’s Eve I got a text from a workmate “How the hell are you?” Well I am not going to lie, that backfired on Christmas Eve, I responded “Ermmmmm…..Still drinking, but it’s probably Hodgkin’s lymphoma” Thought process:

• Ermmm – she is Scottish and I thought it was appropriate    

• Still drinking – it is New Year’s Eve and she is Scottish so, you know, it’s relevant
• Hodgkin’s Lymphoma – well it was and, as I said, I wasn’t going to lie

Maybe it could have been put more delicately, and quite possibly not on New Year’s Eve. Are you cringing yet? I have more. A phone conversation, which I had actually planned, was the quite possibly the worst way to tell someone that you have cancer. I started “How was your Christmas?” “Cool, and your trip went well? Did you get some snow?” Then, wham, out left field she asks me a question “How was your New Year’s Liv?” Wow, wow, wow. This is NOT part of the script. I am not prepared for questions. The true answer is we went to the Komedia to see Zoe Lyons, where I nursed one pint over two hours and played pathetic cancer patient number 1 because it actually hurt to laugh. My response was “Ahh errr well I have cancer.” We’ve laughed about it since. Next time I will write notes. I started warning people at the beginning of my messages that there was a shock to come. But I am 29 and I have been married for five years; they all think I am pregnant. I am still trying to decide if pregnancy would be worse or not.  

All these examples were either pre-diagnosis or necessary notifications. Now, nearly a month later, whom do I tell? What am I trying to achieve? Are people going to be upset if they find out after the fact? Because essentially I am going to come out of nowhere with an email that says “Hi, I know I have been really slack and we haven’t, like, spoken or anything for over a year, but well, as it turns out I have cancer. Oh, don’t worry it is totally curable and I will be fine in six months. In fact, you’d probably be none the wiser had I not told you.” Is that not just asking for pity and attention? People with chronic diseases don’t send global emails and they have to manage their illness for the rest of their lives. It’s not as though I am dying. I suspect my rationale for wanting (Is it want? Is that the Freudian slip I have been waiting for?) to inform others is entirely selfish, which may be why I am delaying it. Delay. Another Freudian slip?

These days post chemotherapy

Every thought that has passed through my head in the last few days seems as if it has been tainted with a slight, or in some cases a more than slight, negative vibe. In my mind I imagine each thought, each memory, each event appearing (in cartoon form of course) with a black spot attached. As if somebody has come along with a paintbrush and some black paint, lodged themselves into my brain and is systematically daubing each vision, each memory, each thought, with his negative graffiti. A symptom I had pre-diagnosis, was a relatively pessimistic state of mind, a sort of ‘feeling of impending doom’ and, I’ll admit, I have always been moderately cynical - no blaming the cancer on that one. But back then, the negativity within my mind appeared a little different. It was more like a cloud flooding my brain, a cloud that tended to get lower and darker as the day progressed. Sometimes there was high cloud, sometimes thick cloud, and sometimes clearing cloud with flickers of sunlight shining through. The negativity has changed, because now I have a constant downer on every thought. Little chance of sunshine.

Well, what I am trying to say is that today I don’t feel that way. I have delayed writing this post until I was feeling mentally better for fear that it would be too depressing. Now that I do feel better, look at what has happened: I have gone and got all Steppenwolf.  I think I need to liven the mood up a bit. So, today is a good day; it is Saturday, my husband is still in bed beside me, the morning sun is shining through the kitchen, I only woke up twice in the night and I have just had my first sip of coffee. I am sunshine and internet kittens right now, not black blobs and dark clouds. Although the power tool in use across the street isn’t doing my four day headache any favours. Come on mate, ease off, don’t ruin my buzz. 

I was totally unprepared for my first treatment and, unfortunately, the same theme has continued post treatment. I am now five days post-chemo. On the lead up the medical team told me that days five to twelve, that is when I will be at my lowest. What they mean is that this is the danger period. If you do feel get an infection during this time, it could be pretty serious. On this point, I had put my science hat on and in doing so I missed the main message the doctors were trying to convey. I am well aware of the effects of chemotherapy on the bone marrow; my circulating neutrophils have a life expectancy of around five days. The chemo agents attack rapidly dividing cells. Bone marrow cells are rapidly dividing so they become collateral damage, therefore there is a lag after my neutrophils have died before my bone marrow can kick in and produce more cells. Thus I have no neutrophils and become more susceptible to infections. A similar cycle for the other blood cell lines, just change the life expectancy here and there, and it makes sense that days five to twelve I will be at my ‘lowest’. I knew how these drugs effected the body at a cellular level, but I had little or no knowledge on how they effect people physically. I had failed to grasp that I was going to feel like utter shit before day five. 

My body does not want these ridiculously messed up drugs in it. My body is angry with me. At a clinical level this crappiness does not matter. The doctors cannot do anything about it, and it is not unusual, so therefore I had not given it a second thought. But the crappiness exists, and it sucks. As it turns out the chemicals stay in my system for around seventy-two hours, although I would say that it seemed longer than that. I say “as it turns out”; they had indeed told me this, more than once, I just didn’t think ‘oh I will feel like crap for three days’. I never made that connection. 

The major side effect for me, which probably compounded everything else into one mass of utter of gloom, was what they termed ‘restlessness’. I have been waking up hourly for the last three months or so with sweats and shivers. Because of this I was given steroids a week before my chemo started, which stopped my rigors almost instantly and certainly made the sweating far more manageable. Again, the steroids lead to ‘restlessness’, so although I wasn’t woken by anything, I wasn’t falling asleep either. Fortunately, the one thing I did do correctly on my chemo day was mention my lack of sleep to the nurse, who made the doctor prescribe me some hypnotic agents – but only seven and with warnings on the risk of developing a dependency.  

Cue Tuesday night, the day after my first chemo appointment.  It is 1:30 am and I am not even remotely close to sleeping. I am reading on the couch because I have been ‘restlessly’ thrashing in bed and my husband is trying to hold down a full time job. Our top floor flat is creaking and groaning in the unrelenting wind. I can hear a loose roof tile grinding with each gust. The room hastily lights up, surprisingly bright, then darkens just as rapidly, followed by a loud crack of uncomfortably close thunder. Hail starts pattering at the window. How is hail even hitting the window? The wind is coming from the entirely opposite direction. (I am not making this up or even accentuating the details, as I have be known to do on occasions, this was one horrid night.) My legs won’t stay still, my abdominal lymph nodes are throbbing with such regularity I have decided they are actually a beacon in a lonely lighthouse on this stormy night, circling repeatedly, yet finding nothing and alerting no one. The codeine may be contributing to this illusion. I am convinced that some snot nose little kid is pulling my hair and that this is causing my (still) unmovable headache, a headache that starts at the hair pulling site at the back of my skull radiating around to encompass the entire left hand side of my face. My lower left wisdom tooth has decided that now is the perfect time to break through my gum, a gum that is in an eternally dry mouth despite the four litres or so of water I have consumed. And, to top it all off, hovering in the background is this feeling of nausea that just won’t budge.

Stop whining right? I’ve got my magic little pills that will send me briskly into a slumber so deep I couldn’t wake even if I were six years old and it was Christmas day morning. Ah, but that would be no fun. I refuse to take a sleeping pill. I took one the night before, you see, and two nights in a row, well, I might develop a dependency. As a side note it has been pointed out to me that my previous habit of one to two (maybe three?) beers in the evening could be described, by some, as a dependency, so technically me developing a dependency would be an incorrect description, I would be merely replacing one. That aside, the entire thought process was flawed. I need sleep, I cannot sleep, I have pills to make me sleep, but I refuse to take them. 

By 5am I decide that the best bet is to move to the bathroom and lay there on the floor. I am not going to be sleeping and being nearer to the toilet seems the safest option. My poor husband is awakened by half an hour of dry retching (I can’t even successfully throw up). He stumbles in blarey eyed with a very concerned look on his face. The night had been a complete failure. Maybe one hour of sleep in total, no relief at all; just feeling perpetually worse with each passing hour. A state of discomfort that continued throughout Wednesday, although a fresh dose of anti-nauseas was of some relief. I spent the day watching a particularly bad game of T20 cricket whilst wishing the couch would open up and swallow me, thus ending my wretchedness. Death by couch. Not the worst way to go. 

It is pretty apparent that I survived the day. The couch didn’t eat me and the symptoms I had weren’t remotely life threatening. Just mere discomfort. I am finding it difficult to figure out how much of my self-perceived misery is indeed the chemo and disease process, or just boredom and a small degree of loneliness. But I think that is a question for another day. If I had written this when I was feeling miserable then I may have a better understanding. I am sure I will have ample opportunity to experiment in the future. 

I hadn’t intended for this to be a play by play of a Tuesday night in January; once again this has rambled on for far too long. I don’t imagine I have too many readers left at this stage, but for those die hards who are still hanging in there you’ll be pleased to know that I have learned my lesson and I now take my drugs when I need to. Even four hours sleep makes me feel a million times better than no sleep. Last night I got six and, aside from the aforementioned headache, I don’t feel too bad. The sun is back out (we had a patch of hail), I am contemplating leaving the house and I have just rocked out to a song that I'm embarrassed to admit is a guilty pleasure. No, I’ll never tell you which song it was.  

Today I had my first chemo

Wow, that sounds like a title from something I wrote when I was like seven years old. Except the chemo part. No way could I have spelled that. I still struggle. 

So, mentally I was pretty unprepared for today. I did not realise quite how crap I would feel afterwards. I mean it will be some sort of miracle if I don’t throw up. I’ll let you know how I go. Something for you to look forward to. The ‘positive thoughts’ and ‘bright-eyed-bushy-tails’ attitudes that have been recommended to me, attitudes that I have been implementing, up until now, with a degree of success, can lead to an abundance of naivety. This seems to be the case with me.

Let’s get into it then. For starters I have picked up a cold. It is winter after all, a minor cold is to be expected. Although, I am slightly immunocompromised and my memory lymphocytes aren’t really working as they should, so the cold is taking a little longer to clear than it probably normally would. But the medical team were happy to go ahead with the chemo, so great. My husband and I had expected the appointment to last around four hours, however it ended up being more like nine hours. There was a pre-treatment briefing with all the legal mumbo jumbo (no ACC here so you have to sign your life away for everything), which we knew about and had included in our four hour limit. Then we had to wait around for the blood results (yeah sure, let’s blame the lab) because the pharmacy won’t release the drugs if my neutrophils are too low. Then we had to wait for the pharmacy. 

That took a couple of hours or so. I got to know the nurse quite well. She had lived in New Zealand for twelve years, owns a house on Waiheke Island and loves the Mussel Inn. We got along. The nurses were struggling with the radio so my husband fixed it, but he could only get the BBC classical music channel and I think everyone thought it was our choice of music and that we were really highbrow or something. Obviously we are not.  So we had classical music playing throughout our nine hours, which isn’t the worst choice, but certainly not my first.

By now the drugs have arrived and things start to move pretty quickly. The chemotherapy regime I am on is ABVD. It is given intravenously with some other supplements; some anti-nauseas, hydrocortisone and some other steroids. All was going fine and dandy for about thirty minutes or so until I got to the ‘V’ part. V stands for Vinblastine, which sounds like some sort of French wine explosive (yes I know I am meant to be a scientist). Anyway, the drug apparently goes straight into the central nervous system. All I can say is that as this drug is being infused, I am starting to feel pretty agitated. Wriggling in my seat, feet won’t stay still, kind of feel restless in my skin. And it’s hard to know right? Am I being over sensitive? It is my first time and you know you read and re-read and then sign that you’ve re-re-read and then get told in triplicate about the side effects, so is it the drug? Is this why I am feeling agitated? Or is it because I have been sitting in the same chair for six hours and probably haven’t eaten enough?

Whilst sitting there pondering this internal conundrum, the ‘D’ (D stands for dacarbazine) infusion started. The plan is for it to be infused over thirty minutes, and it is the last drug I need to be given. But when the infusion starts my vein begins to hurt. Like really really really hurt. When I had some fluids in December the infusion hurt a little, and it hurt a bit more when I was given some plasma, but this was well… it was just like wow. I am having flashes of how Harry must have felt in Requiem for a Dream. They say one of the drugs can hurt during infusion, so I’m thinking “is this the hurty one? Is this normal?” Yes my brain was using the word ‘hurty’. I couldn’t handle it, I was writhing. I wussed out and told my husband and the nurse turned down the infusion rate (Nurse: “Oh is this ‘The Flight of the Bumble Bee’ on the radio?” Me: “I really wouldn’t know”), which eased the pain but it didn’t completely subside so they turned it down again and the infusion that should have been 30 minutes long is now taking 1 hour 30 minutes.  

Then it is time to start getting itchy. And itchy and itchy. My right shoulder is itchy, and the back of my head and neck is itchy, and a small patch on the inner of my right thigh is itchy. The last place was a dodgy one to scratch. I have always been a pretty itchy person, so was sitting there mindlessly scratching away at my itches, when somewhere deep in the far reaches of my brain, two brain cells must have decided to have a little chat (or synapse for the nerds out there). Eventually they let the other cells in on what they’d been chatting about and kindly pointed out to my conscious self that it is really quite odd for my right shoulder to be itchy and red and hot to touch. Ok, I am now happy that this may be one of those pesky side effect things that I need to mention. It is no big deal, mild reaction - intravenous antihistamine cleared it up, but by now I am feeling crappy and itchy and hungry and I need the toilet like every ten minutes and I still have an hour and half to go and then because of this pesky reaction I need a chest x-ray afterwards. And in my hangry, pitiful state I have decided it is all my husband’s fault. Which of course it most definitely is not. But try and tell hanger Liv that. The x-ray was clear just for the record.

So having entered the hospital at 8am, we got home at 6pm. Thai for dinner was most certainly the wrong choice. Fatigue, nausea, restlessness, snotty nose and a strong feeling of disappointment are the main features apparent to me as I am curled up in bed feeling rather sorry for myself. I have kept the food down though, you’ll be pleased to know. I am sure no one wants to learn what regurgitated tofu green curry looks like, although I imagine it is probably not much different to what it first looked like.

Things I have learned today:

• Add at least two hours to my expected time limit

• I am going to feel crap during the chemo

• I am going to feel crap after the chemo

• I need to eat more

• I need to bring food and water for my poor patient husband

• We most certainly were the rookies of the day ward

(Written 12/1/14)

Quick Background

September 2014 

I have just turned 29 and my husband and I have begun our fourth year of UK life. I am working in a haematology lab at a hospital 10 miles from our Brighton flat. I’ve had the job for 4 months or so. Prior to that, I had been commuting from Brighton to London every day. Yes, I was one of those. I am sorry. I hate it as much as you do. My job (or career, call it what you will) is to analyse blood. I look at the numbers produced by the analyser, I look at the cells via a microscope, and then I think about the medical explanations for what I am seeing. My current hospital is not a bad place to work; although the analysers and systems are outdated they are, at least, about to be replaced. I get along with most of the staff, I have even made a couple of friends. I have learned a new speciality and the job itself is not so hard.

But I feel exhausted. I am asleep on the couch by 7pm. Once in bed, the bouts of uncontrollable shivering and intense lower back pain beginging from a vertebra behind my pelvis and radiating in both directions – are leading to rather restless nights. Ibuprofen is becoming a regular part of my daily routine. Some work friends have started asking where my previously totally awesome attitude has gone. Ok, maybe it was never that awesome. Let’s just say my crankiness hadn't, as I had hoped, gone unnoticed, and requests are being made to lock and load a good PMA (positive mental attitude). 

October 2014

I am finishing work breathless. I stop cycling to work as I am too tired to maintain it. I commend myself on my notable weight loss just from my casual cycling to work. Good for me. The shivering at night is becoming a little more frequent. I hide under a lab bench and fight off tears when an analyser doesn't do as I want it to. Maybe I am taking things a bit too personally. I decided to give blood (why did I think that was a good idea???). I can’t give blood because I am anaemic. I book a GP appointment. I get a cold and a cough.

November 2014

Night shivers are every night and most afternoons during work hours. I am a zomboid at work. Weight loss is being noticed by other people. However, my life is almost sedentary and I have no appetite. My cough has not resolved but I am not coughing up anything nasty. I get a gum infection. I get a chest infection. Antibiotics are not helping my shivers, and I am starting to sweat during the night. My husband has taken to sleeping on the couch because I am disturbing him too much. Third GP visit and I get to have a chest x-ray. 

December 2014

The only work out my gym clothes are getting is during the night to mop up my sweats. I am changing my shirt 3 to 4 times a night. My rigors are six hourly; or whenever the ritual paracetamol runs out. I can take paracetamol now because I have lost my desire for beer. Shit, I must be unwell.  A change in antibiotics has not relieved any symptoms. Coughing doesn’t produce anything except a need to vomit (sorry guys, but I am sure this blog is going to get grosser). And is that a dull pain in my right side? Yes, I think that is a dull pain in my right side. How long has that been there? Maybe a while – I can’t really remember. Another call to the GP. A trip to A&E. A reluctant trip. 

Hospital

The fever I claim to have is a whopping 37°C but my reliable blood results (yay that’s my job) do confirm that I am not quite right. A pretty clued up young triage Dr decided my abdominal pain didn’t make sense so sent me for an ultrasound. My liver was red on the ultrasound, which I thought meant angry (oh no my beer!), but no. Red means blood flow and, as it turns out, the liver wasn’t red enough. They suspect a liver abscess. I am assured that this is unrelated to alcohol consumption. I am assigned to the surgery team. 
A CT scan is performed the following day. My overnight shivers freaked out the surgical based nurses, and were not overly appreciated by my ward mates. About 3 days later a rather brisk but likeable surgical consultant with a paintbrush moustache bustles into the ward followed by a cluster of junior surgeons. “I need to feel your neck, armpit and groin.” Me – “Oh? What is it, lymphoma?” Paintbrush moustache -“What? What do you know about lymphoma? Are you a doctor?” (Fortunately a nurse here filled in the blanks for him) Paintbrush moustache – “Ok well the CT scan shows swollen lymph nodes in your abdomen I need to refer you to another team. Is it the haematology department?” Me – “Yes it is haematology.”

OK, so it is my job to know about lymphoma, but I must confess that lymphoma was a weak point in my knowledge. Here is what I did know:

• I knew at that point that I probably had lymphoma. Fatigue, unexplained weight-loss, night sweats, alcohol induced pain, itchy skin: the symptoms all matched up. The only thing missing was a visible swollen lymph node.

• At my age I was most likely to have Hodgkin’s Lymphoma

• Hodgkin’s Lymphoma has giant cells (Reed-Sternberg cells) that have two oval nuclei that look like owl eyes when you see them down the microscope and they look really cool (OK I had to nerd out a little…)

• Hodgkin’s Lymphoma was probably the best cancer to have.  

This entry is much longer than I had planned, and the rest will probably be summed up in later posts, so I will make it very quick – a CT scan, a bone marrow trephine, a bone marrow biopsy, a couple more ultrasounds, a lymph node biopsy, a plasma transfusion and a blood transfusion later; I was discharged at 8pm on Christmas Eve, and had a confirmed (by then it was all set in my mind anyway) Hodgkin's Lymphoma diagnosis the following week. On the first working day of 2015, I officially became a cancer patient.