What the hell is going on?

Oh, dear body! Why would you engage in grey lipped teeth chattering whilst in an extremely public place? Do you despise me that much? I am aware that the environment in which we currently sit, together, could be deemed overheated, so why the hypothermic shivering? The lady exiting the bathroom did shoot me a rather peculiar look but thankfully did not comment on such ridiculous behaviour.

I am afraid I have little to update you on. Last week the surgical team successfully removed a lymph node from my neck, the same node that was biopsied in December. I feel a little sorry for the node; it provided me with my initial diagnosis and is rewarded with excision. Now it is doomed to spend the remainder of its days in a specimen pottle on a laboratory bench. Some may argue that the node will be immortalised given the inevitable formaldehyde fixation but for me, the node is gone forever. I never even learned his name. Sob, sniff, sniff. Although I have described remorse at the loss of this particular node, remorse does not actually convey how I feel. I am glad the surgeons chose my neck. The only other option was a full on abdominal laparotomy; days in hospital, weeks of recovery, and a rather high chance of some major blood loss. So I was relieved when, after some gentle manipulation from both Mike and me, neck surgery was chosen.

As a child, and some may argue as an adult, I was moderately clumsy. However, despite my greatest efforts, I never required surgery. Sure a few superficial stitches here and there, the occasional scar or two, but nothing a local anaesthetic couldn’t handle. This biopsy was full on surgery; fasting, felt tip markings on my neck, oxygen mask, general anaesthetic, slight room spinning, oh these drugs are quite fun, “keep your eyes open for as long as possible”, as long as possible being about ten seconds, unconsciousness, breathing tube, blackness. At some point, I recall somebody, probably a nurse, asking “can you tell us your name and date of birth?” I could not. I flung my left arm vaguely towards the voice, attempting to direct them towards my hospital ID bracelet. I may not have known who I was but I knew how the interested parties could find out. I, myself, could not figure out how to open my eyes let alone my mouth.

Eventually, I did wake and was surprised at how lucid I found myself. I had a comprehensive discussion with my nurse about Leeds, where he had studied, and conveyed to him how uncomfortable my throat felt, an apparent result of my breathing tube. I was rewarded for my efforts with a lemonade Popsicle. All-right. I will never know how long the actual procedure took but I was unconscious for about two hours. My Leeds nurse disappeared once I regained consciousness. I feel he has the best nursing job; once his patients wake up his job is done and he moves on to the next unconscious patient. Minimal conversational topics required and he probably gets to witness some hilarious awakenings.

Where am I? A post opiate Popsicle

Now we wait for the biopsy results. I recall little from my university histology classes. What I do remember is the tissue preparation process was time consuming, required a finesse I could never muster, and that our instructor had to leave the university abruptly due to some rather shocking criminal proceedings. The third item is, of course, the most vivid. What I am attempting to say here is that histology is tricky and takes a while. It is also a discipline where most of the samples are deemed urgent in priority as they will all be required for cancer diagnosis.

Before I received my distressing PET scan results, the waiting period had a peculiar sombre feeling, as if I was suspended in time rather than participating in it. For reasons I cannot explain, the current waiting does not evoke any ill ease. It is a little frustrating not being able to update anybody, as there is nothing to update, but aside from that minor inconvenience, I am feeling rather ambivalent about it all. There is a risk that denial has crept back into my mindset. In the waiting periods, in the not knowing, there remains a possibility that the cancer no longer exists, the results could be negative, my enlarged nodes could be merely reactive. These thoughts, desires if you will, are not productive. They ought to be cast aside. There will only be disappointment if, or when, such thoughts turn out to be false hopes. This would be a situation where positive thinking is inappropriate. A more realistic approach is called for.

Healthwise I appear to be holding up ok. My blood results remain normalish. An interesting side note; in contrast to most lymphoma cases my LDH levels (an enzyme used to monitor cell turnover) have been normal throughout my illness. The marker of my disease has been my CRP levels. Currently, my CRP sits at 23 which, although technically raised, amounts to a mild shrug and barely audible ‘meh’ diagnostically. Certainly not the 280 odd they were at the height of my illness. So there is little disease progression as far as the lab is concerned. Although I have had (minor) night sweats four consecutive nights now. And there are these bouts of inconvenient teeth chattering….

Since my new PICC line was inserted I have been unable to straighten my elbow. Some wicked bruising and bicep swelling presented Thursday night and kind of indicated that there was more to the issue than mere muscle stiffness. An ultrasound revealed a haematoma near the entry site; good news really as the other possibility was a blood clot. Now I watch with fascination as the bruising extends down my arm, an apparent response of the haematoma to gravity. I am still unable to straighten my arm but the swelling has subsided, not quite completely, but sufficiently. I can at least get my arm through my sleeve now without looking too comical.

And so we continue to wait. Fortunately, our cancer accommodation still applies during this waiting period and therefore we do have a rather comfortable roof over our heads. We are, however, relying on government-funded Wi-Fi, hence the inappropriate shivering in highly public places such as Te Papa or the Wellington library. I am rather appreciative of such facilities!               

Homeless Hodgkin's Lymphoma?

I was wondering if I ought to change the title of my blog seeing as I am now back in New Zealand. Am I now 'away from home'? This pressing issue did not require too much thought; although I may be back in my home country, I am not home. In fact we are probably deemed homeless. I can just imagine 'no fixed abode' listed as my address on my medical records, a phrase I often associate with alcoholic GI bleeds. My conclusion is that changing the name to 'Homeless Hodgkin's lymphoma' would summon the wrong images: plastic bags, rags, empty Tennent's Super cans and hiding under bridges from the bitter Wellington wind; not really an accurate description of our situation. So, for the time being I shall let the title stay as it is. I hope you will all agree.   

This is my first real opportunity to write since our rather abrupt departure from the UK. Emotions have been varied; coming and going whenever they, not I, see fit. Sometimes they linger for a day or two, using their powers for evil, never for good, beating me into submission. My surreal bubble burst somewhere between Gatwick and Dubai leaving a teary, snotty mess and a perpetual trail of soggy tissues literally spanning the globe. Had I begun this entry a week ago it would have had quite a different tone. Perhaps more desperate, more exasperated; but today, alone in my cancer accommodation, I have found a temporary calm. After scouting the various communal areas I have settled upon the library, a small room with fluorescent lighting giving off an office vibe rather than the desired cosy reading den. There are five bookcases lining the walls, bookcases I would like to imagine as my own however if this were so I would be appalled at my own literary taste. Of the shelves there are eight books that I have read (six of which I would actually admit to), one I want to read, one I probably should read and one I may possibly reread. I thought surrounding myself with books would offer comfort, instead they are a distraction.

What has happened these past ten days? Well, tests. Numerous tests. Tests on my kidneys, my heart, my blood; fortunately no tests on my bone marrow although I am sure it is only a matter of time. I have the marks and bruises of fourteen separate needle punctures, some of which were failures. Ok, most were failures. My right forefinger is numb as at one point during a cannulation attempt the needle struck a nerve. Any pressure on my inner wrist delivers the strangest sensation to my hand. Even inserting my new fandangle PICC line proved difficult. The route chosen was through my bicep, and we all know how big those babies are. Hopefully the line should give my poor little veins a bit of a break.

Treatment has not yet started. We are waiting to confirm that the enlarged nodes are in fact the same disease. The prompt relapse after cessation of treatment is rather rare so they, the clinicians, wish to ensure that it is still cancer. I am showing few symptoms (splenic pain, the occasional chattering of teeth and permanently cold feet) and, aside from a mild anaemia, my blood results are particularly normal. A contrast CT scan on Friday revealed no further spread in my assumed disease, in fact some of the nodes have actually shrunk. This is good news for me mentally as I was initially a little uneasy at the minor postponement of treatment, although I imagine the processes in Brighton would have been much the same.

Of course we are left with a similar situation to that of December. I have no obvious accessible lymph nodes to biopsy. All the problematic nodes are nestled firmly in my chest or have buddied up with rather large blood vessels, such as the aorta; using them for protection as an ethnic restaurant would use the mob. I wonder what the going rate is? The surgical team are scheming, deciding which of my little nodal pals will part from me forever. The haematology team are scheming, demanding which node they would prefer to see. The one thing the haematology and surgical staff agree on: nothing would be done on the weekend, so I did at least have 72 hours of liberty.

Each evening is spent toasting, usually with water, my potential last night of freedom. Each morning we arrive at Wellington hospital and the plan changes marginally. I am aware of my failure to update everyone, or anyone, on the goings on. This is due, in part, to the super massive internet black hole I appear to have landed in. It turns out I cannot go a week without being online. I start getting rather cranky. I am a little upset at how much this disconnection bothers me. I also must confess that constant updates and justifications on matters that are changing daily, sometimes hourly, is rather exhausting. Once treatment starts I am sure the updates will become more regular, more concise. The procedures and delays are only occurring with our consent and to be honest I am enjoying the chemotherapy reprieve, even if it is only short-lived. 

Everything appears to be failing me. My phone, my two pens, my body, my memory; they are all slowly giving up. I left my favourite sweatshirt somewhere in Auckland airport, my phone has decided it will receive text messages from my sister only whilst refusing to offer internet connection of any kind, and the two pens I had in my writing bag decided to give up on me simultaneously. This had made my little black book look rather messy and incomplete. There are some who say you make your own luck, I myself am not so sure.  

In December, I was privileged enough to have a bone marrow aspirate….. and a trephine

This was karma kicking me in the ass. Literally. Hopefully I will allude back to this statement and, in time, it shall make sense. Knowing me though, it will be later rather than sooner; I do seem to go on a bit!

A bit of background info: Hodgkin’s lymphoma is very rarely seen in the peripheral blood. I have never seen a Reed-Sternberg cell in a blood film which, although mildly disappointing for me work wise, is good news for any patient. These cells are also rarely seen in the bone marrow. Armed with this knowledge, I was hoping like hell that I would avoid a bone marrow examination. However this was delusional; a bone marrow biopsy was always going to be necessary, and I believe past Liv was aware of that fact but, for some reason that seemed appropriate to her at the time, chose ignorance. So let us hear of past Liv’s tale and get away from this ridiculous third person perspective that has developed and will be far too difficult for me to maintain.

I was scheduled for a lymph node biopsy, however, due to complications I will probably explain in a later post, the biopsy did not go ahead. I had been impatiently sitting in my bunker ward (seriously a bunker; the walls were lead lined due to the extreme levels of radiation used in treating gynaecological tumours during the 1970s) all afternoon awaiting my summonsing to the ENT theatre, when, around 4pm, the haem team made an appearance. The biopsy isn’t going ahead today, but they wish to do a bone marrow. Tonight. Faarrrk. I have this irrational queasiness with bones. Yuck. Shivers down spine, goosebumps, teeth clenched, skin-crawling ickiness has come over me just writing this. When I was a trainee I had managed to dodge witnessing a bone marrow. I think we were meant view one, however it just ‘didn’t end up happening’. I don’t know why. Subsequently, I never really learned the difference between an aspirate and a trephine and my knowledge of bone marrow biopsies (other than morphological knowledge – which to be honest is pretty weak) extended to a word-of-mouth ‘this is the most painful experience aside from childbirth’, and a basic theory of how it is undertaken. An aspirate is bone marrow fluid, a trephine (which means ‘to bore’) is bone marrow tissue. I just looked that up. 

Cue karma. Having avoided observing such an event eight years ago, I was now going to be an active participant. Great work 21-year-old Liv. Thank you ever so much. Mike had told me I needed to be brave for each procedure (this was my first invasive one), but in between each I could breakdown as much as I wanted. As he said this, all I could think about was Catherine in A Farewell to Arms. At 7pm, after three hours of stewing, I was informed a porter was coming to collect me. Butterflies flew into my stomach. When was the last time I had butterflies? I thought they had died when I stopped eating Chupa-Chups. [Complete tangent here, one that is not scribbled in my little black book, did anyone know that Salvador Dali designed the logo for Chupa-Chups? I only just found this out. Not his finest work, granted, but I may have to frame a wrapper just for the sake of it. It is the only way I will ever own a Dali. I love Dali.]

Sorry about that. The porter arrived around 730pm. It is totally ridiculous. I was perfectly capable of walking, but due to section one million three hundred and sixty two of the NHS Health and Safety policy some poor bastard has to wheelchair me the two miles from the cancer ward to the haem ward. Hyperbolic enough for you? I guess this is why I have a ‘dramatic’ reputation. Four separate lift rides later (I’m not exaggerating this time) and there Mike and I are waiting for the haematology registrar. I am now in full blown anxiety mode. My stomach muscles are tensed enough to be classed as an ab workout, and I have made an unconscious decision not to breathe… I was grateful that during the brief chats I’d had with the haem reg she seemed fairly onto it. OK, I may have tested her. I have reason to! There are some, if not many, I have come across that would not be getting anywhere near me with a boring tool. 

Eventually I am escorted into what is quite clearly a renal treatment room and not a bone marrow biopsy room. What sort of Mickey Mouse outfit is this, using a makeshift marrow room? With a trembling hand I mark a signature, one that would never hold up in court, on the necessary paperwork. The paperwork informs me that I am aware of the two possible side effects – bleeding and <1:10,000 chance of infection. All this nervousness, all this anxiety is caused by the prospect of pain. Temporary pain. It is ridiculous how my brain works. 

Any squeamish may wish to stop reading here. 

The marrow sample is taken from the iliac crest, so fortunately I am not required to see the size of the screws or the needles. Nervous chatting kicks in, mindless, uninteresting dribble: don’t distract the lady with the giant needles Olivia! It turns out the bone is numbed with these giant needles. I wasn’t aware of that, I thought I had to do it the macho way. Once the bone is numb, she hammers into it, which is bloody weird. I can tell exactly what is going on, yet technically I can’t feel anything, just pushing, and pushing, and wow yip that is her entire bodyweight behind that tool, and resistance and then nothing. Oh well that wasn’t too bad now was it? No it wasn’t. Ok then, let’s start the chatting thing again to let her know how tough you’re being – “How did my blood film look by the way?” Now is not the time for such questions - I get a brisk response of “fairly normal – you are about to feel a shooting pain down your legs….” I let out a rather audible gasp. Then I blush. The pain wasn’t even that bad. Kids go through this far better than I. I am breathing excessively now, and between my wheezes I assure the doctor that I can handle the shooting pain…. “It’s ok, it’s ok, that wasn’t that bad, I can handle the shooty pain” (yes reverting to five-year old speak) “Well, that pain is over now.” 

What comes next is the trephine. The technique is to screw a boring tool into the marrow as deep as possible, which is to say as far my pain threshold will tolerate. I am aware of the pipe sticking out of my back as she changes tools. Again, with her full weight behind her, I feel pressure as she turns and turns the screw. With each rotation the pain increases. Not a shooting pain, but more of a ‘someone is screwing something into your bone’ type of pain; an entire body ache which is slowly becoming more and more agonising. At some point I am give myself an internal high-five for being so quietly staunch. My cockiness is then rewarded as I let out a dying wookie sound “Woaaarrrrrowghffff”. She stops. “Well, I can remove it now, but there is a risk that there will not be enough and I will need to redo it” “KEEP GOING…. I can keep going”. She keeps going. I do not make it much longer. Maybe half a turn. The seconds it takes her to make the slides pass with excruciating slowness. “There is enough here, we’re done, everyone finds it difficult their first time” (There had better not be a second time). 

“I’m not brave any more darling. I’m all broken. They’ve broken me."

With my breathing still heavy and an almost non-existent thumbnail (staunchness my ass), I stumble out of the room, down the corridor to my husband without saying a word to the lovely registrar. Then I throw up. Thankfully I made it to the bathroom and no one witnessed the event. I had myself so worked up over something that was essentially 5 minutes of pain. But there was definite pain. When I was researching the difference between the trephine and the aspirate, I read on the Birmingham Cancer Network’s website a description about the procedure. They wrote that you “may feel some pushing and slight discomfort, but many patients do not feel any pain at all.” Now I know they breed them tough in the Midlands, but I feel the procedure has been vastly downplayed. Yes it wasn’t as bad as I had expected, yes I got myself overly worked up, and yes they gave me enough morphine afterwards to enable some pretty choice dreams, but I put it to the Birmingham Cancer Network that ‘mild discomfort’ is a gross understatement.            

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?

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.