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. 

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.