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.