Further non-updates

Firstly, I must issue a disclaimer; I do not feel like writing, I do not particularly want to write, I am therefore struggling to write and cannot promise any cohesiveness in what follows. Currently I am a bitter, angry individual whose only real desire is to get excessively drunk in the sun and mull over the world’s problems with the miniature New Zealand seagulls. Maybe I would even touch on my own problems. There are many barriers preventing me from accomplishing my desire; the anti-fun laws of New Zealand prevent public drinking, Mike would also disallow such activities, and, honestly, drinking two beers makes me feel utterly terrible. I no longer have that pleasure.

On Thursday I attempted this post for about the third time. Unfortunately, I spent all my energy suppressing an overwhelming urge to pick up the netbook I was using and, with one fluid motion, hurl it over the glass partition I sat behind, smugly watching the sluggish little beast fall four floors and smash upon the black marble foyer. Noise, destruction, silence. This would have been a rather dramatic action given I was once again situated in Te Papa, but I feel such an exploit would aptly demonstrate the frustration consuming me of late. Strangers would stare as I stand with a slightly maniacal grin on my face. I need a minor act of rebellion, it may distract me from the tedium that currently is my life.

As you may have gathered I am yet to start treatment. My excised lymph node provided no conclusions. It is with mixed feelings that I receive these results. No evidence of Hodgkin’s lymphoma (perfect lab speak), some reactive features, some scaring. On one hand it is great to hear that a node displaying disease in December no longer does, however, a negative result in one node does not rule out disease. We are in a situation where we actually require distinct evidence of lymphoma in order to continue, continue with anything. All this result actually does is send me further into the depths of denial.  

These results, or non-results, were delivered to us last Friday in a consultancy appointment. Of course there are further tests that can be performed to confirm relapse, or indeed other diseases. The appointment ended with an impromptu bone marrow biopsy/trephine. Surprise! We’re going to bore into your pelvis! In the NZ vs UK healthcare game NZ gained a point here by offering me anaesthetic gas, gas that I gleefully accepted. The procedure itself was tame in comparison to the one in December, although I did manage to incite a growl from the haematology registrar when I removed the gas to abuse the radio station for their terrible music selection. The gas seeps into the room you see, and then the doctors inhale it, and then they feel ‘light-headed’; not an ideal situation. But back to the music, honestly, this radio station makes Heart seem good. The bone marrow results are still pending.

To further complicate matters, I have not been well this past fortnight. Chills, fevers, sweats, fatigue, tachycardia, irritability (ok arguably not a symptom), raised inflammatory markers, raised neutrophils, no obvious sign of infection; head scratching all around. Is this all really a systemic infection? Could the positive PET scan, which was performed directly after my last ‘infection’ presentation, be a false positive? Apparently this is a possibility. Given it has been nearly six weeks since my last scan, another PET has been ordered. We all know how much I enjoy those, but at least it is something, just something, which may progress diagnosis. I presented in the day ward with pyrexic features about ten days ago, therefore the haem team have decided to wait a little before the scan; they do not want another false positive. This caution will, potentially, go unrewarded as I had a lovely little fever last night implying my reactive state has not fully resolved. Nights are becoming exhausting.

This break in testing allowed us a small window to discuss fertility options with experts. The appointment was Tuesday. Our decision was required Friday. Prior to my initial chemotherapy I was too ill to delay any treatment with such discussions. ABVD does not contain alkylating agents so my natural fertility was likely to be preserved. After my July PET scan I was informed that the next treatment regime will leave me infertile and I had little time to discuss such matters. As it turns out I have not yet turned into a pumpkin although perhaps my carriage has. (Yes, Cinderella is my current literary level.) Upon hearing our fertility options, the procedure, the delays it would cause to further answers, the uniqueness of my case (I would quite like to be utterly normal right now), the chances of success; Mike and I were left with a rather hefty matter to discuss. We responded the way all couples in a healthy long-term relationship would; by postponing the discussion. Repeatedly. I spent the days mulling over the issue, desperate for somebody else to make the decision for me. The day ward registrar (whom I quite like) was having none of this delegation. This was our decision to make, alone. It is difficult to go from having all natural options, to no natural options, to some artificial options, all within a month and without the concrete knowledge that I am actually going to receive further treatment. Small things like twelve-year-old boys spitting on us whilst we were mid discussion certainly did not help the ‘pro’ column. We did make our decision in time. Fifty percent of cancer patients opt for fertility preservation prior to cancer treatment. Just a fun fact.   

    

We remain in our transitory state, our state of homelessness, of unemployment, of bitter Wellington wind. I have not gained medical clearance to fly so have only been home (Nelson) once since our NZ arrival. We remain in our cancer accommodation with fellow transient patients all keen to talk of their lives and, sometimes, their situations. In between my naps and appointments I slink around the communal areas reading the various plaques that remind me who has donated what. I am unsure whether to feel grateful or guilty for such generosity.

I guess the important thing to remember is that refractory Hodgkin’s lymphoma is still the most logical explanation. In my last scan I had lesions on my lung, lesions that look rather like Hodgkin’s lymphoma. I imagine that when the PET scan goes ahead they will look for a larger node to remove. This will probably lead to abdominal surgery. There will not be any definitive answers for a few weeks. I do not expect a negative PET scan. The delays to treatment have not occurred without our consent. I have not yet mentioned the next round of chemotherapy, but just know that the side effects, both short and long-term, are severe. We need to be certain before starting the next phase.

   

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.