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.