PET scan and PICC line anyone?

It has been a hectic week and I have felt like crap throughout. Currently I am enjoying a Renaissance Cherry Porter, so bliss is very near. This gives me an opportunity to recap on my week and hopefully restrain me from complaining too much.  Here we go…

I feel I may have built up far too much suspense in the ending of the previous paragraph. Sorry about that. Essentially, last week I had chemo Monday, overdid things Friday and spent Saturday and Sunday paying for it dearly. Sunday, I busied myself in differing positions of horizontal; lying in bed, lying on the couch, lying on the floor. I was so exhausted I could not even formulate replies to text messages. Sorry to those affected by this. I know hearing from me is the highlight of everybody’s lives. Fortunately, sleep came readily; I did not even need my nearly-empty-calorie-pills, which is good because I did not have any left, and my biological resistance to slumber inducing substances has reached the level where one antihistamine just doesn’t cut the mustard.

I suspect this current bout of woefulness is in part due to dread. My second cycle of chemo is now complete and this is a magic line in the sand kind of moment, as my treatment and prognosis after this point is dependent on the progress of the chemo thus far.  I am sure that all makes sense. Basically, I had a PET scan prior to my first chemo, and another one yesterday. If the tumours have reduced in size and prevalence, then yay, I stay with ABVD. If not, then treatment options need to be reassessed. This could mean a relatively new regime named escalated BEACOPP (I know very little about it) or, although highly unlikely, an autologous stem cell transplant. I will explain what that means if or when I need to. I won’t find out what my next type of treatment will be until Monday, when the results of my scan are known. Fun times.

Shall we talk about the PET scan then? I had intended this as separate entry, another retrospective one, however I never got around to it so I will do it now. The science behind this is quite cool. They inject a radioactive variant of glucose into you whilst you are in a fasted state. Tumour cells metabolise glucose at a much higher rate than regular cells, so in the PETCT scan they show up all red and angry, while the normal cells are grey and boring. We like boring. Everyone hope for boring. Right, so, I have to be in a fasting state, on the first scan this was fine, it was a 10am scan so it was no big deal. Yesterday it was a 1pm scan; I went from fasting to famished. I had retired to bed at a spritely 9pm the night prior, so by the time my appointment rocked around I’d passed hangger and moved on to total lethargy. I gave vague responses to the multitude of poorly put questions. They were particularly unimpressed with my response to the “Any chance you could be pregnant?” question; “I am pretty sure the chemo would put stop to anything like that”. Not the correct answer, just an FYI. It is crazy that pre-treatment they prep you on the odds of infertility and the like, and then any chance they get they like to ask you if you’re pregnant. I am not, I do not plan to be, and I am pretty sure my body wouldn’t be able to handle it if I was. It would tag out. Game over. Ok so no jokes allowed, granted it was a rather dark one, but I guess we are technically dealing with physicists here.

Once that rather dicey question has been inadequately answered we get down to the fun stuff. The lady (whom I fear I have portrayed negatively when actually she was quite lovely) fetches her radioactive glucose, it is kept in a metal case, in a metal syringe, and looks like something out of a Bond movie; she is donning a full lab coat, gloves and a radiation counter. The cannula is inserted into my right arm (last week’s chemo arm, so already in an utterly pitiful state), and promptly the substance is flushed through my veins. Boom! I am radioactive. I feel like I should have gone all Peter Parker on everyone. Unfortunately I was instructed to lie as still as possible for an hour. Absolutely no leaping with spider like projections from buildings. Damn.  I am not even able to read, as that demands an unfair proportion of glucose for my brain and they would like the distribution to be equal throughout my body, please. As I have mentioned, I was feeling crap, very very very crap. I think I may have slept; the drool present on my face when I was collected would definitely lead to such a conclusion. I was instructed to ‘pee’ (he actually used the word pee, which at least drew a smile out of me) using a separate toilet, as I am radioactive you know.

Then comes the scan. The scan sucks. You have to lay totally still for like 30 minutes, whilst going in and out of a prolonged CT scanner. Oh and you have to keep your hands above your head, still. This was hard enough pre dacarbazine - have I mentioned how much dacarbazine makes my arm ache? – but post chemo it was horrendous. Deep breathing and, I believe, some quick scanning by a fellow antipodean, meant I got through it with only the bare minimum of tears. I think at one point I may have shouted “I can’t go on!” a total “Do it to Julia” moment. Big brother was totally watching, cameras, microphones, the works. Who would have thought room 101 for me was purely keeping my hands above my head for half an hour? And I was a basketballer. I need to toughen up.

That brings me to today. I cannot recall if I have yet mentioned that my arm hurts a mighty lot after chemo. Well it does. It does so much that I have neglected to write this entry into my little black book, as my right arm was my chemo arm this time, and it is unable to hold a pen. So I am going full tilt on the typing, which to be honest, does little to relieve the pain. But do not fear dear readers! I have come across a solution. This solution is a PICC line, which I had inserted today. A PICC line is inserted just above the elbow joint. Using ultra sound and local anaesthetic, a wire is thread through the vein, running just under the fourth rib and into the heart. A tube then surrounds the wire, and a cannula is attached to the tube. No more needles, and a lovely little protective sheath for the dacarbazine (if indeed that is the drug of choice) to pass through rather than the vein. And, above all, hopefully no more bloody arm pain. Except now I don’t know which pain is caused by the darcabazine, and which pain is caused by the PICC line. What I can tell you is that occasionally I feel the line tickling my heart, which is a little disconcerting. It does cause sporadic heart palpitations, but it doesn’t hurt anywhere near as much as my spleen. I don’t think a splenectomy is on the cards, so don’t get your hopes up on avoiding that complaint. And the rest of my arm is still in agony from last week’s darcabazine, so I will be inclined to moan about that for a wee while longer.

Does this thing work for caffeine or alcohol as well?

That is my week thus far, I keep thinking paracetamol doesn’t touch the darcabazine arm pain, but then the drug wears off and anguish again sets in. I have a proper purple vein this time, still a little bruising, and a slight uncomfortable feeling in my chest when I slouch or breathe too deeply. They have x-rayed my chest to see where the line is sitting and everything is as it should be, so I guess it will be a feeling that, in time, I will become accustomed to.

GCSF – no longer on my ‘favourite drugs’ list

Well scientifically maybe, but not as a user. I am retrospectively writing this, at a time where I am not exactly feeling my usual chipper self, but I will try to resist the temptation to moan about my now sufferings, and purely focus on those in the past. 

We made a trip up to Edinburgh from Brighton the Friday before my last chemo. This, I will reiterate, was a trip sanctioned by my consultant; I was not breaking any rules. I was, however, very neutropenic and subsequently on GCSF injections. Again. I am starting to think this may become a regular occurrence. Anyway, I am sitting at Gatwick with Mike, when he receives a call from my Macmillan nurse giving him a few appointment updates; ‘Oh and I have noticed Olivia has quite a low neutrophil count so make sure to keep her away from crowded places….’ Time for a wry smile.

My first gut jab was Thursday, so by the time we were in Edinburgh, Friday afternoon, my sternum was already aching. Good news really; obviously my bone marrow was releasing all its goodness into my blood stream, so I may not have been dangerously neutropenic on the flight. Although this may be good news, the feeling is pretty uncomfortable. My spleen is working overtime despite suffering from lymphoma infiltration - a fact it likes to remind me of constantly, a gift of pain I then pass on to you. Sitting becomes an awkward pastime as I try to appease my sternum, spleen, gall bladder and arm all at once. I spent Friday evening in a quest to find the ultimate sitting position, a quest that proved fruitless.  

Saturday we had a lovely, and for me lively, walk up in the Pentlands (Munroing maybe?) where, aside from a decent and bloody blister, I had no adverse side effects. Yes ok, my sternum hurt, but that was to be expected. To be honest I was buzzing like a pre bedtime six year old; ‘Turn around now? But we are nowhere near the top!’ That night, post a third and final gut jab (admirably witnessed by my moderately needle phobic sister – ‘moderately’ being a euphemism) at a very nice dinner with a very nice French red wine, my pelvic bone starts to throb, and ache, and ache throb. Or throbache.  Self-medication with further red wine and a tawny makes sitting at least bearable, but come bedtime there is no chance for sleep as the pain is now relentless; radiating from my femur down my legs, from my pelvis into my spine, from my sternum into my ribcage, not to mention an ever present ache in my darcabazine damaged arm, a bizarre sore throat and an overwhelming nauseous feeling. Oh and my [insert expletive here] spleen.

The blur in the top left was initially a guy flipping the bird.....

Don’t throw up, don’t throw up, oh shit I am going to throw up. I attempt an explosive leap from the bed in an effort to reach the bathroom, but my legs give way under the vast bone pain and I slam into the wall, waking my husband in the process. He responds heroically at lightning speed, saving me from an imminent Hendrix style fate, rushing me down a foreign hallway, in the dark, avoiding shoes and bikes, in his boxers, without his glasses whilst pretty much still asleep. Telepathic high fives all round at a job well done, as I enjoy my dinner a second time, now with the beautiful ambiance of a toilet bowl and an overhead fan. I don’t think I need to tell you which I preferred.

My sister, who had magnanimously sacrificed her bed for the family cause, was pleasantly awoken from the couch to the sound of me hurling my guts up. She tottered out to have a look (who wouldn’t?) and sent a blarey eyed Mike back to bed. It turns out she has been suffering bouts of insomnia due to an exercise preventing injury, so we spent the night between the kitchen table and the toilet catching up. It was nice to have the company.

There is not really much more to this story. Sunday we went for a drive to Anstruther, had the best fish and chips in Scotland (pineapple rings for me). I had pretty bad bone and splenic pain most of the day, not to mention a demoralising feeling of fatigue. By St Andrews my body had decided to shiver uncontrollably. The rest of the weekend was a bit of a blur, somewhere between semi-consciousness and unconsciousness. Except I do remember the Bombay Bicycle Club curry. Man that is good curry.   

Two chemo cycles down, four to go

Two cycles completed, yet four sessions done; four cycles to go yet eight sessions remaining. I still don’t understand that. I am sure if I did a bit more research it would become far more apparent; something for another day perhaps.

I just corrected a typo reading ‘chemoterhapy’, I think this is fine evidence of the abundance of Irish accents in my day ward. Does it count as a digression if I have not yet started the bulk of my entry? Another thing I am unsure about. 

This particular chemotherapy day commenced in Edinburgh; an authorised yet on the down low (until now) visit to see my sister and brother-in-law. This required a 5:45am alarm, a 6:45am taxi, an 8:45am flight, an 11 something AM train, an 11 something AM bus and an arrival at the Brighton outpatients phlebotomy around 11:45 AM. I am not exaggerating the three-quarter-past-the-hour time slots. This is actually how they transpired. I strongly suspect the '11 something AM train' was actually the delayed 10:45 AM train; a result of an ever frequent southern mainline signal failure. Don’t National Rail know they are destroying my blog symmetry? Ok, most certainly a digression this time.

The need for additional blood tests pre-chemo was due, yet again, to some epic neutropenia 0.2 x10^9/L (do I still need to use the units?) I am now aiming for 0.0. Clinically there will be very little difference between 0.0 and 0.2. This neutropenia required further GCSF injections whilst in Edinburgh, which requires its own separate little blog post, presented to you, unchronologically, at a later date. 

Armed with an urgent yellow blood form and a 2pm chemo appointment, I felt that 11:45 AM was sufficient time for the super-duper lab to process my super-duper blood. This was a failed experiment. My little blue triangular ticket stub, the entry ticket to the actual phlebotomy room, was twenty places behind the current fluorescent number. The urgent yellow form seemingly means jack as far as queue times are concerned. Turns out you need an urgent red sticker on top of your urgent yellow form and your ‘chemo due today’ clinical details. And the urgent yellow form is patented. Some patent. Now I wasn’t too adverse to waiting 45 minutes for my blood to be drawn, so long as my results were ready by 2pm. I had time to kill and what was proving to be a most enjoyable book to read. Once my very smooth venepuncture was complete, I ventured to a nearby coffee house in order to continue my 'search for the best long black coffee' crusade.  

Here, once again, I will deviate from my main story in order to indulge you with an oddity that occurred in the coffee house. I was perched at the counter, feeling rather contented with a particularly palatable coffee, when in walks this fellow, mid-late thirties, who was acting a little peculiar. I am sure even my Kiwi readers will be aware that Brighton, and especially Kemp Town, has more than its fair share of eccentrics. Unfortunately, this guy was not donning a sombrero or wearing a purple gold starred cape, nor was he, as has been witnessed in the past, combining both to form one epically bizarre outfit, no this dude was rocking completely nondescript attire. But he was swaying, and he did ask to see a full menu (which they didn’t have) and he did make exceptionally precise specifications as to how his ciabatta was to accompany his soup. And then he sat down beside me, letting out a long audible pleasure groan, smacking his lips, in the process. So I am starting to think this guy is a little strange. He emits another similar noise when he tastes his soup and further changes his ciabatta requirements, adding to my growing concern that he is a complete nutter. However I am mindful that I am being hastily judgemental; I mean it was a comfortable chair, and the soup did look pretty bloody tasty. Following the completion of his soup, he orders a coffee, it is a coffee shop after all, so this makes sense. His coffee choice? A long black with two sugars and a knob of butter served in a takeaway cup, oh and he has a tab so he knew from the outset that this particular coffeehouse did not have a full menu. I imagine his order to be the finest example of how to utterly destroy a long black.  

Tangent over now, I just thought I would chuck that in to bolster the word count. Back to the lymphoma/chemotherapy diatribe. Arriving at the day unit at 1:30 PM, an hour and a half after my phlebotomy, my results aren’t through yet. They’re still not through by 2:45 PM when my husband and parents arrive, although I have had my cannula inserted; right hand this time not left in an attempt to decrease next week's predicted arm pain. My chemo starts around 4 PM. There are only three of us left in the room, making it easier for my family to tag team into the companionship duties. I am sitting in an oversized dull teal chemotherapy chair this time by the way. The chemo itself is fairly unremarkable, waiting, waiting on the lab, waiting on the pharmacy, anti-nauseas, hydrocortisone, A, B, mild burning and itching, V, mild restlessness, D, ow ow ow my vein followed by an infusion rate decrease and some perpendicular arm positioning. I was home, exhausted, by 7pm, for some tomato soup (I crave strong tomato flavour post chemo) and a nifty concoction of green beans, broccoli, nuts and beetroot my mum whipped up. Oh and University Challenge. I can’t remember my score.

Monday night – Post chemo and I feel horrendously shit. The anti-nauseas mean the heroic efforts I am undertaking in attempt to expel the contents of my stomach are going tremendously under rewarded. A pitiful quantity and certainly not enough to relieve any queasiness I am experiencing. There is a line in Flannigans Ball about a patron dishing out ‘a terrible kick in the spleen’. I am not sure that heaving ones guts out was quite what they were referring to, but my spleen most certainly feels as though it has received one mighty boot. My left arm still ails from two weeks ago, whilst my right hand from chemo today. There are viper bite like marks on the said right hand, with oval blue bruises surrounding the pierce marks. Actually, they more closely resemble ghoulish red eyes peering from deep dark sunken slate blue sockets, mouth absent, in true spooky ghost fashion. None of this friendly Casper mumbo jumbo. My chest burns – especially when inhaling, my nose is persistently bleeding, I have detectable swollen lymph nodes in my gallbladder, neck, jaw, collar bone and near my parotid gland, mild bone pain, a weird itchy patch on my right shoulder with skin texture resembling rough brown leather, fatigue, restless legs, a sore throat, the aforementioned general malaise, a headache, my second period in a fortnight, three ovarian cysts (sorry boys) and tingly lips – but not an ‘Oh no I’ve had too much sherbet’ tingle, more a ‘crap crap crap, that was an entire jalapeno’.  Blah is not an adequate description. Lachrymose would be more suitable. Chemo is hard enough and now my body is throwing unexpected hormones into the mix? I have crazy bruising of indeterminable origin on my legs, supplementing the sporadic patches of hair growth; far from attractive lower limbs I can assure you. It is a very stormy night, ear plugs may need to be deployed. At least the wind deters the foxes from their brash twice a night mating ritual. What does the fox say? A loud cross between a dying parrot and an enraged chimp. Turns out Ylvis were spot on.

Tuesday – An interesting day. Sleep was surprisingly plentiful Monday night, despite having run out of nearly-empty-calorie-sleeping-pills and a feeling of utter despair.  I still awoke with a strong burning pain in my chest, one that burnt brighter each time I took a breath, although at least my overall general feeling could now be downgraded to blah. Here comes the interesting part, or indeed, the not so interesting part. I managed to lock myself out of my flat whilst signing for a courier parcel. I spent six hours sitting outside my apartment door (fortunately still inside my apartment block) wearing a khaki dressing gown (it really brings out the pallor), a hole ridden long sleeved top, comfy jeans and discoloured socks (the ones not suitable for public eyes), listening to the countless missed calls on my phone (safely locked up in my little flat) and trying to decide if I had enough artistic skill to replicate a Jackson Pollock using my sheading strands of hair. If anyone is wondering, I do not. I followed this up with two hours of ‘get to know your neighbour’ time, awaiting Mike's arrival home from work and my subsequent rescue. Not from my neighbour, she was lovely, from the entire situation.

Hindsight being the bitch it is, I realised, around midnight once tucked up in bed, I should have walked to the corner of my street where my GP surgery is situated, explained to them the situation I was in whilst politely requesting they phone Mike so he could sort things out. But I didn’t. Which is why this entry is a day late. Currently it is Wednesday morning. It was Tuesday night when I started this. I have had nada sleep, so please excuse the typos and poor grammar. My spleen is still painful, but only mildly, so aside from the fatigue and the hunger (easily fixed) things are not too bad yet.    

Chemo round three... It may be getting easier

Apologies to my dear avid readers for not posting a pre chemo brief. I had intended to, however for a couple of inadequate reasons it did not end up happening. Namely, I was acutely aware that I had already had one strop of a post earlier in the week, and did not wish to burden you with a second so soon after. Also there was a degree of laziness involved; a rather obtuse degree. 

My weekly bloods displayed a neutropenia warranting at least an eyebrow raise had I been validating the results at work. A level of 0.4 x 10^9/L of blood (a good scientist would have published this unit already), so we are getting clinically low now. I received my reliable Friday night phone call from the haem day unit, again mid-wine but fortunately pre-rugby, to inform me thusly and tell me my prize…. more GCSF injections! Three in fact, on concurrent days. The GCSF is kept in my fridge which creeps me out; my occupation conditioning requires strictly separate food and medical fridges. The only upside to my ever increasing appetite is that the subcutaneous injections are now much easier. It turns out weight loss may no longer be an issue.

I had been forewarned that GCSF makes some people feel a bit crappy, however, other than the previously mentioned sternum pain, I didn’t have too much strife the first time around. This time was not as successful. The promised ‘flu-like symptoms’; vomiting, aching, no sleep, more bone pain – both sternum and pelvic this time, were severely apparent. Mike would probably like me to also mention crankiness, but personally I think he is a little biased and this isn’t his blog anyway. There was a particularly low point Saturday afternoon, my head down the toilet heaving my guts up, tears streaming down my face, nose bleeding into the bowl, our toilet seat is broken so I am holding it up with one hand all whilst my body has decided to shiver uncontrollably. Potentially a Hunter S Thompson moment, although at least he got a buzz, all I got was a cytokine release. At the time of this despair it was difficult to ascertain whether it was due to the GCSF or, possibly, neutropenic sepsis. As you have probably noticed from previous posts, I have become rather neurotic since this pesky diagnosis. Fortunately, my temperature never breached the designated danger point of 38°C, and my previous CRP had been a staggering 1 mg/L, so the GCSF was attributed with the blame. 

Subsequent to my Sunday evening injection I was lucky enough to enjoy an all over body itch. Whilst silently thanking myself for having the forethought to trim my fingernails earlier in the day so I could go all out with the scratching, I was hit with a most unusual sensation. It was as though I had jumped into a pool of pop-rocks; an all over body tingling, which had the potential to been a kind of cool experience but instead it was entirely unnerving. Throw in some rigors for good measure (my body never fails to miss a good shiver if the opportunity arises) and I was totally freaking out. Scrutinising the drug information insert did nothing to relieve my concern, but did inform me that the vomiting could fairly and squarely be blamed on the GCSF. A quick google search gave me nothing but the certainty that I had febrile neutrophilic dermatosis (I didn’t) so I threw back an antihistamine and a not-so-magic pill and let the night put an end to my misery. 

I awoke alive, which is a plus in my books (as the great Tommy Ill would say) so it can’t have been too serious. Although it was Monday which, as the title of this post has promised but so far not delivered, was chemo day; a leisurely 2pm appointment. My attempt at losing a Civilization V scenario was interrupted by a call from the haem day unit around 10am politely inquiring where I was as they had expected me in at 9am. My timeslot had been changed; I hadn’t been notified. A power shower, a very well packed lunch from Mike and a taxi ride later I arrived flushed at the unit blubbering about a mix up in times. Who would have thought I’d have been so eager? Mike was tasked with collecting my parents at Gatwick after their thirty something hour flight from Auckland, so I was flying solo this time. Some may argue he had the harder task.

Once I had regained my composure (let us assume I had some to begin with), I noticed with unrelenting horror that I had lead you, my darling readers, astray! The previously mentioned oversized salmon chemotherapy chair is not even close to salmon in colour! More a dull hot pink, which I guess just makes it pink. I apologise profusely for leading you down this incorrect path of imagination. Although, I believe I did publish a photo last time, so most of you were probably aware of my inability to correctly describe colours before I was. Nevertheless, the apology still stands. 

My sister had given me a tremendously tough personal best target of five hours, but I was up for the challenge. The Friday neutropenia resulted in further blood tests, and therefore another pre-chemo wait, however the cannula went in without a hitch, so I was feeling confident I could achieve her ridiculous goal. Unfortunately my faithful laboratory friends had other plans. At least a 2.5 hour wait for the neutrophil count, a count around the 27 x10^9/L, so rather elevated. I like to think that a rip-roaring blast flag, some poor clinical details and a panicked urgent blood film requiring a manual differential was the cause of the delay. As I have alluded to in the past, I do enjoy a bit of drama. Whatever the cause, pharmacy had definitely brought their A-game that day, I think I had the drugs within the hour, but even with this promptness my five hour objective was already looking shaky. 

My chemo has arrived, the old lady opposite is giving me a scowl. She has been waiting for as long as I, in fact her transport has already arrived to take her home, but there is no sign of her therapy happening anytime soon. I have a brief discussion with the nurse about my previous darcabazine reaction, but couldn’t convince her to give me an antihistamine to cover me. This should be fun. The A, B and V infusions go well, even my previously documented agitation as a result of the vinblastine was absent. I was pretty chuffed, I am knocking on the door of five hours biatches! But no. Darcabazine time. The prescribed infusion rate means it should all be over in thirty minutes, but the nurses inform me that no one has ever managed that. This may sound like a challenge, but I can assure you it is not one I will ever be attempting. They set me up with a ninety minute infusion, and not even five minutes in I am thrashing in agony. Honestly, how cytotoxic is this drug? Is actually stripping the endothelium from the inner my vein, whilst bursting every valve it is passes through? Because that is what it feels like. A viscous blob slowly destroying my insides. No wonder my spleen is causing me so much pain. In what I wish had been a much calmer voice, I plead for the nurses to decrease the rate again. I can imagine my sister, had she been there, feeling a perfect revenge opportunity had arisen; revenge for all the ultra-marathons where I have denied her a rest in order for her to achieve her target. Thankfully, she wasn’t there to utilise such an occasion. 

The pain is still epically present, but it seems to reduce somewhat if I drape my arm over the side of the chair and hold it perpendicular to the floor. Unfortunately this draws attention from the nurse, and she turns the infusion rate down yet again. Is that a wry smile from the old lady opposite? I think it is. I expect you all to be judging her accordingly right now. Despicable behaviour, having therapy races. Given her age, she was probably a pro. I am still a rookie. Tut tut. Despite the further reduction in infusion rate, now in excess of two hours, my arm still needs to be held at a right angle in order for the pain to be remotely bearable. I find a more subtle way to achieve this, the old ‘I am actually holding my book comfortably whilst resting my elbow on the arm of chair’ routine. You should try it sometime.

Furthering my torture, the ‘ever eager to beep’ mechanism the infusion runs through has an unavoidable ‘time remaining’ countdown on it, persistently informing me of my imminent failure. I am pissed off, Mike has already completed his mission and wishes to come and join me since I am having oh so much fun. Is he rubbing his success in? Has this become some sort of Amazing Race episode - chemo vs husband vs old lady? He is getting one word responses. When he does arrive I am relieved he can read through my tough texting exterior, because although, to be quite honest, this was easily my best chemo experience thus far, I was still very close to tears. And crying would have given that old lady far too much pleasure. Two hours later we were on a bus, total time of six and a half hours, still a personal best, but only narrowly.

Now, Tuesday morning, I am not feeling too bad. Certainly the best I have felt the day following chemo. I am pale, with dark grey bags, but am comforted by the current Topman model; apparently the cancer patient look is in this season. I was just now thinking that the colour of my nose would put Rudolf to shame, then it started oozing blood. Obviously my nose does not take kindly to such compliments. I have bruises down my left arm, not only down the entry vein, but bluish purple tracks running entirely down my forearm as well. At least I have something to point to and cry “I am not exaggerating, the pain was shocking!” A poorly scheduled fasting ultrasound appointment means I am trying to quell my insatiable appetite with the horrid mouthwash and copious amounts of water, resulting in frequent trips to the ladies, where I am rewarded by catching a glimpse of my Knight of the Woeful Figure reflection. On the positive side, I still have both my ears.               

I would like to take this chance to thank everyone back home for all their kind words, cards and gifts that my parents brought forth from Aotearoa, they were very gratefully received, and, in most cases, heartily devoured. Thank you!

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)