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.  

Neurotic ramblings and a startling blog discovery

At some point throughout this pesky illness of mine, I have become rather neurotic. To those of you who have slyly raised an eyebrow or two in a somewhat sarcastic and mildly patronising manner I respond – yes, well I know I have always been a little neurotic, but now, I assure you, it is far worse. I imagine I am not the only cancer patient with this problem. Prior to starting chemo we are told of all the possible side effects, in triplicate, so our mind stays vigilant when assessing bodily qualms. In my case I suspect there is also an element of control; mind over body. The conscious has no real control over the body, but it enjoys thinking it does. It is the mother of son who has recently left the family home; she would like to think she is still in charge but realistically the young man does as he chooses. He will check in sporadically, usually only when something is amiss. And so when my body, adolescent in metaphor only, begins to throw ailments in the direction of my conscious they tend to suffer an in depth analysis; the type usually reserved by media outlets for election night exit polls. I say mind vs body, but I think I am a little wrong here. It is almost as if there are three entities, mind on one side, body on the other, then, in the middle, sits Liv, trying to mediate the eternal grievances between the two. I am the Poland of my entire entity, a battleground between two longstanding enemies, divided up by outside parties, oppressed and largely forgotten about. 

Saturday evening was particularly concerning. With the longer days, the crepuscular light of the sky made it seem earlier than it was. The neighbour’s petite tabby cat had been coming and going throughout the day so the door to the balcony was still ajar. I was getting cold. My teeth were threatening to chatter - I could feel my jaw seize in anticipation - and my few remaining strands of arm hair were standing firm and tall in their follicles.  It took the imminent teeth chatter and a slight shiver for me to realise I was cold but I noticed, strangely, that my upper thighs were both quite warm. Unknowingly, almost innately, I had been scratching away at them for a good thirty minutes. When it came to bath time, necessary to warm me up, my thighs were red, a little hot to touch and extremely itchy. I caught myself indignantly frowning at this new forming woe whilst still a scratch, scratch, scratching. The whiteness of my British winter thighs emphasised the developing flaming red pattern, making it appear like a little flashing red emergency light. In the depths of my ever exceeding gut, a little seed of anxiety was sown. What is this? Is this a GCSF reaction? A reaction to chemotherapy? Bilateral necrotising fasciitis of the thigh? Is this how DVTs clinically manifest themselves? That must be it, I haven’t exactly been physically active these last few months….  After some gentle passive-aggressive prodding and then some aggressive passive-aggressive prodding, I finally got Mike to concede that yes, this was a little odd and we’ll keep an eye on it. Score one to Liv.

A visit from our neighbour

The following morning I observed two tiny itchy bites, one on each leg. Yup, all that voluminous worry for what were small, not even mosquito, but sandfly bites. They were gone come Sunday evening. I am, at least, a little thankful that I did not immediately consult Google and add to my list of unsubstantiated concerns. I have given myself a three day threshold for unexplained biological presentations. If a complaint persists for longer than three days, it is allowed its very own Google hit. To be honest, the three day rule probably ought to be extended as symptoms seem to resolve themselves the day or so after their said Googling. But I imagine the physical act is for reassurance value only. I need to keep that conscious of mine on side.

One particular complaint that did manage to breech the three day annoyance limit, lead to a rather startling discovery. I have been getting these odd bumps on my head. They are a little itchy and tender to touch. They are most certainly not itchy bites, in case you were wondering. My hair, which once resembled the unruly mane of a lion, is still thick enough so that, with a little effort, minimal really, these bumps are not visible to any chance onlooker. But they are bothersome and troubling so I asked Google, in computer speak, “Scalp lumps pain itchy lymphoma”.  As I slowly tweaked the search terms, a persisting site kept popping up, near the top of the results list. A pain in the Neck. Maybe this individual has suffered a similar issue and has some advice for me. Click. Oh it looks like a blog. I will skim through it to see if it contains anything relevant, I mean, who wants to read an entire cancer blog? I started skim, skim, skimming; Oh Hodgkin’s Lymphoma, skim, skim, skim, lingering look, small snort at a humours sentence, complete paragraph read, gentle nodding of the head in understanding, end of post, click, next post, engrossed reading, thrusting out of the bottom lip in the way only possible when you know you have been thoroughly outdone. This blog was good; far better than I could ever dream of writing. I started reading some excerpts aloud to Mike. Evidentially he could also relate to the content – so it turns out it is not socially acceptable to palpate your lymph nodes in public, other halves do not appreciate such behaviour. Woops, my bad.  

Irritation and despondency, both quick to rise and slow to dissipate given my current state of mind and body, were rapidly on the ascent.  A McEnroe tantrum was brewing. Writing has been my one outlet these past few months, and here was someone else, an individual unknown to I, summarising exactly how I have been feeling, only they were doing it in a finer manner. I was in full on blog binge mode by now, enthralled in her charming anecdotes, her positive yet realistic outlook and her sense of humour. And there it was, two little words “Freelance writer”. Liv exhales in relief. The author’s occupation, for some ridiculous and inexplicable reason, made me feel better. There was no violent slamming of tennis rackets, no verbal abuse hurtled at umpires, no Woolf-Mansfield jealousy, there was just me, reading a stranger’s blog, at peace with the knowledge that I would never be as good as her.  

I have attempted to read other cancer blogs prior to finding A Pain in the Neck, but usually I only achieved a mere skim, skim, skimming. She has been through significantly more than I, yet she seems considerably more mindful about her experiences. When I am in a fit of frustration, blabbering on about cranial painters and their daubing of my thoughts, questioning my mortality and almost branching into the study of eschatology, she calmly and simply summarises these low points into passages and situations that I cannot convey in words. I caught myself, quite often, thinking “that is what I was trying to say!” For those of you struggling with the morbidity of some of my thoughts, her entries at similar points during our treatment regime may make things a little clearer.   

And what of my head bumps? Well, she doesn’t appear to have experienced those, but there are numerous breast cancer forums addressing the subject. The most likely cause is that my hair regrowth, in its fair fine down like way, is inflaming my fragile follicles. That ah, that was more Dr Seuss than I had anticipated. Sorry about that. I was trying to be poetic. I think I will leave it though, oh and don’t feel bad about laughing at me, the sentence was utterly absurd, even for a cancer patient.

It is with a degree of hesitation that I start this paragraph. I have a fragmented continuation of thought, as always, on the matter regarding Googling of troubles. But as it appears I am of jovial disposition today (however it has taken me five hours to realise this) and as the thought pattern involves my psyche, I think I may postpone my intended deluge of incoherent thoughts for another day. The sun is shining, the balcony is beckoning and DH Lawrence is calling.

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.            

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.