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!               

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.  

Results Day

Sometime during my treatment I drew an imaginary line in preparation of Wednesday. The line was to signify the difference between sickness and health, to provide the motivation I needed to begin living again, to remind me that Wednesday was the day I ran out of viable excuses. People as lazy as I require such imaginary lines.

Tuesday was results day, the day of my final haematology appointment. Mike and I had prepared a list of questions to ask, predominantly focused on obtaining any paperwork required for me to travel and transferring my medical records to New Zealand. We intended to make a slow journey back home and by slow I mean the speed that the Fifeshire once sailed at. We were going to take a while.

It was a lovely day, the sun glowing, the wind minimal. In the waiting area at the cancer centre they had opened the doors allowing us to sit on the garden deck surrounded by trees and a little pond. It was relaxing. Eventually my Macmillan nurse called my name. I thought it was nice that he was at my last appointment, I had not seen him since my second PET scan, it would be good to say thank you and farewell properly. I was to see a different consultant, my nurse told me, but he was aware of my case. I had no problem with this; I have seen three separate consultants already, a fourth did not matter much.

And so the clinic starts much the same as any other. Polite questions about my previous chest pain, a mention of my recent hospital stay, questions (in a tone a little sterner than I had anticipated given the happy occasion) about night sweats. Doctors have this remarkable knack of getting one to confess. That minor change in vocals got me slightly flustered and I had to admit that yes I was actually experiencing some night sweats, but it was summer after all. The doctor had clearly tired of such small talk. “I am sorry to say that your scan is showing signs of disease” “Where?” “Chest, abdomen and spleen. This would explain the chest pain you have been feeling.”

In movies, when the main character receives bad news, the background music usually gets louder and the voices surrounding the character turn into a fuzzy hum. That is what happened in my situation. Except there was no music. I remember focusing on the wall ahead of me where there was an examination bed and a pillow and the pillow was on an odd angle and the bed looked too flat. All my effort was concentrated on avoiding eye-contact with Mike, because as soon as I saw him I knew I would burst into tears. I cannot tell you how long this haze went on for, but at some point I became aware of Mike writing notes, and I was relieved that he had kept his cool when I had quite clearly lost mine.  

We had not prepared for this outcome. In my last post I mentioned that my infection had made us talk a little about unfavourable results. Well, we did not talk enough about it. This was not meant to happen, we had no strategy for this. Treatment plans were discussed, intensive chemo for three months, stem cell harvest, more chemo, stem cell transplant. At some point during this explanation I decided to ask “can we do this in New Zealand?” and potentially we could, but we would need to organise it quickly as I do not have much time. I am not sure what happens when this time runs out. Do I turn into a pumpkin?

Thanks to the New Zealand Cancer Society, we managed to quickly get in contact with some Kiwi haematologists. I have now become an interesting case, I am sure anyone would want to have the pleasure of treating me. It looks as though I was correct in that assumption; we land in New Zealand next week. This gives us about four days to pack up our lives, our artwork, my books, and trek around the globe, although a lot faster than we had first anticipated.

The situation is quite surreal. Searching for specialists back home has worked as a distraction from reality, but occasionally I do catch myself pacing the house, pausing to sigh and mutter an audible ‘fuck’ under my breath. Physically I feel good, probably the best I have in a year or so and yet my tumours are growing rapidly. I mean my spleen doesn’t even hurt! Emotionally? Well emotionally this is difficult, worse, I think, than my initial diagnosis. I had a curable cancer, what could go wrong? It is as if my days as a cancer fraud are over and now I move onto the real deal. This is probably what most people feel on their initial diagnosis.

I finished Swallowing Geography the day of my results. It was an apt last book for cancer, entirely fitting for my situation. I felt satisfied and ready to move on. I am disappointed that I will need to find another last book, I mean not for a few months yet, but I will need to keep one in mind. I am also a little worried. Worried that I have run out of adjectives to describe despair and woefulness, because although past Liv felt rather miserable it is nothing on what future Liv will be feeling. Present Liv is still quite content living in her surreal bubble, worrying about the lack of adjectives in her vocabulary, not at all concerned that the chances of infertility (almost all cases) are higher than her chances of successful treatment. I still don’t know the exact figures. It is odd, I have never been overly maternal but as soon as the option is taken from me it seems like childbearing was the only purpose I had ever focused on. I know I will get over this. I feel it is probably just another distraction.  

There are some positives though. I am glad I did not cough up £8 to get my head re-shaved. My hair certainly needs a tidy but it seems I am going to get that for free now. Oh and I get to learn about refractory Hodgkin’s lymphoma; yay more CPD points! OK, so they are the only positives I have at the moment, but I am sure there are some more.

I am aware that this has not been overly informative. Most of the details are still a little hazy for us as well. I have a thirty hour flight to perhaps document events more concisely. I would like to say one more thing though. Prior to my last hospital admission, when I was researching possible causes for my fevers, I stumbled across a patient based cancer forum. Each post contained a mini profile of the author including a list of diagnoses and even misdiagnoses alongside the dates these occurred. It is somewhat relevant to say ‘Hodgkin’s lymphoma’ or ‘breast cancer’ but these individuals were displaying their list like badge of honour, particularly in regards to the misdiagnoses. One user even had a “misdiagnosis” listed and then the actual diagnosis listed less than a week later. The situation was similar to changing from a nodular sclerosing subtype to mixed cellularity or from stage III to stage IV. This is not a misdiagnosis it is a clarification of diagnosis.

Clinicians, and the NHS in general, are taking a bit of a hammering at the moment. The government in the UK is publicly insinuating that staff do not work hard enough and funds are being cut whenever possible. I will confess that I am (until late August) a NHS employee however I am writing this from the view of a patient. I cannot fault the care I have received here; not during diagnosis, nor supportive care, nor treatment. The nurses and doctors have been nothing short of fantastic. During this past week alone I have had doctors and clinical nurse specialists communicating with each other on both sides of the globe, eleven hours apart, answering emails and phone calls at all hours of the day and night. My health and care has always been at the forefront of their minds. Even with transferring to New Zealand, the haematologist only allowed it if the transition could be completed within a week as my health would deteriorate if the time-frame stretched any further. He only had my best interests in mind.

Frontline staff routinely go above and beyond their regular duties and I feel the general public (and certain politicians) need to appreciate just how much these health workers contribute to society. (There may be a little anger emerging here…..)

I would like to thank the Royal Sussex County Hospital for all they have done in my treatment so far. As I said, I cannot fault any of the care I received from them throughout my journey. I am sorry to be leaving them so abruptly.