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!               

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.