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.   

Hello again

This entry has been attempted, abandoned, written, scrapped, seven or eight times over the past four weeks. I managed to complete an entire post documenting my hair loss but it never saw the light of the internet. It was just utter crap. As a side note, I am now rocking an all over number one, although I still have scruffy bald patches sporadically scattered around my scalp. I may have to maintain the number one for a while yet, to avoid the mange look. My hair loss entry was an attempt to buy some time, in order to seem a little less negative, a little less whiney. I mean I had finished chemo, I should be happy and beginning to feel healthier and looking forward to my new positive outlook on life, right? Right? So why, when I started writing, did the words, quite quickly, plunge into black pessimism? Why did I feel utterly exhausted and somewhat depressed? Granted the chemo was still in my biological system, but surely there should be a small shred of excitement at the prospect of no longer having to attend regular chemotherapy appointments, of starting to own my body again. But I felt none of this excitement or optimism. I began to feel guilty about my lack of excitement. At times the guilt bubbled over into frustration; I could not walk more than a mile without feeling irrationally tired. It would take an entire day to develop the energy required to do the dishes, although I must say that once completed the satisfaction I gained was immense.

For those of you who know my father....

These feelings created two problems when trying to write. Firstly, the content was overwhelmingly pessimistic; I felt I did not have the right to write negatively in what should be a time of celebration. Secondly, it was rather difficult to write. The words failed me, a rare event I know. Even now I am finding the words difficult. I am sitting here staring at the screen, hoping, begging, for my vocabulary to return to me. Reading has become a non-event. I am heavily reliant on plot based novels, which bothers me. I do not overly enjoy such novels. I certainly do not find them inspiring. Misogynistic post-war American novels, with faint who-dunnit’ plots and an author who mildly mocks the reader with his own perceived intelligence. That is what I have resorted to. My continued reading of these beasts is almost masochistic.  

I have started three entries in my little black book. I got sick of writing them after a paragraph or two. It is interesting that they were all attempted at times of distress, times that often produce my best work. These paragraphs were not my best work. However they do document some of my low points, points where I am weighed down by guilt. Initially, after my final chemo session but whilst the cytotoxins remained in my system, I attributed the negativity and lack of excitement to my continued physical dilapidation. The effects of chemo persisted, all the regular grievances were present, but maybe as my health improved so would my state of mind. A later entry was full of pseudo-positivity, as if in writing in a optimistic manner would convince you, my dear readers, and perhaps myself, that the future did indeed exist, it was rosy, the past year had not been in vain, I was going to get better, the chemo was worth it. But the positivity was indeed pseudo; quickly the tone of the entry changed: nausea, exhaustion, hopelessness, fear, these started to creep in. Every aspect of my life was (is, maybe) taken with complete seriousness, I had (or have) a fear that I would never return to my former self. My sense of humour had been lost forever and I would continue a bitter woman for the remainder of my days.

Exhaustion became a truth serum. I lost that ability to critically evaluate what I had to say before I said it. I was not rude, but I could not hide my emotions, nor my fatigue. This was not restricted to mere words, facial expressions were also uncontrollable. I failed an occupational health meeting. I admitted my ongoing fatigue, my relatively despondent view of the world and my persisting gum infection to a complete stranger, who, correctly, decided I was not well enough to return to work. I did not hide my disappointment well. This was a couple weeks back, a Thursday. The majority of the chemotherapy side effects should have subsided and I ought to have been feeling better. But I was not. I was exhausted. My back hurt. I was cold. It was only 30°C outside so of course it was completely rational for me to be feeling cold. Friday; a train ride to Penzance to visit family. Again I was feeling cold and pessimistic. Sitting for most of the day did little to relieve the back pain. Saturday; I forced myself to attempt a small walk, my back was aching as I walked downhill and on the flat, but not uphill. It must be muscular. I need to stretch more. That night I turned down a glass of wine. The back pain started radiating towards my abdomen. I was concurrently feeling both cold and hot. Sunday; a car ride around South Cornwall. The back pain was becoming intolerable. A small jaunt to see the beauty of the western coastline was worth it, but upon arrival exhaustion required me to slump against a rock, wearing two windbreakers, as the others continued along the clifftop towards the better views. I was an invalid in a wild-west movie, surrendering to the perils of nature. Once back in the car I felt cold again, the shivers came on, the chat-chat-chatter of teeth began like the slow start of rain on an iron roof. And so the periodic shakes set in. Two hours of normality, two hours of cold rigors, two hours of uncontrollable sweating. Repeat. A two a.m. shower was required in an attempt to warm me up. It did not work. I must suffer the obligatory two hours before the cold will pass and I am greeted with too much warmth. The gym shirts were back out for the periods of sweating. The cold came on slowly, creeping over my limbs like the dark haze of evil present in most 1990’s Disney movies. Or maybe a Tim Burton movie. Probably a more apt analogy given my state of mind.

Slumped against a rock

Mike and I had spent the majority of our seven hour train journey back to Brighton discussing the prospects of refractory lymphoma, and other possible explanations for the shivers. Perhaps I was suffering withdrawals from the chemo. Perhaps my body was having difficulties re-establishing itself, like one trying to relearn the piano, initially hitting the wrong keys but eventually remembering the correct tune. Were the cold spells caused by my recent bald head? A little peruse of the Macmillan forums revealed a small few who had suffered similar symptoms. Ah, so maybe this is to be expected. Somebody had commented that women have issues with temperature control whilst their hormones regain regularity. Early menopause was also mentioned. Maybe I was just getting a cold or something. A day of rest would do me good.

Monday night, immensely thankful to be back in my own bed, I slept on a towel. Never forget to bring a towel. Such important advice. It is amazing how quickly one can fall back into old habits. We had the towel, midnight shirt change and the five hour paracetamol, lined up beside the bed, ready for when each would be needed. Tuesday I felt no better. In fact I felt worse. Dreadful, I felt dreadful. This could not be deemed a ‘normal’ response to the end of chemo. If it was then I could not go on. I had not felt this bad since before chemo. No, this cannot be a right. Something is wrong. I should take my temperature. Blah, the disposable thermometer has broken and now I can taste the dye in my mouth. Yucky. Best try again. Blah. Must be a faulty batch. I will try my less than accurate digital thermometer. 39.9°C, oh maybe the disposable thermometers were breaking because my temperature exceeded their analytical capabilities. You would think that at this point I would have gone straight to A&E, which is what Mike wanted to do. But to be honest I felt too crappy to go. It was 10pm at night, I did not wish to be admitted, I wanted crawl into my own bed with my blue towel, and so that is what I did. I knew I would not be neutropenic and I knew I was not septic.

The hospital visit came the next day. Mike had phoned ahead so I received VIP treatment; queue jumping - a benefit of being a chemotherapy patient. I was placed in my own little room and pumped with IV antibiotics. My veins have been destroyed by the dacarbazine. It took four attempts and a little bit of tissue leakage to get the cannula in. The phlebotomists require the little needles now. It is a pity my PICC line had been removed. I can only assume that I have lovely bacteria free muscles in my forearm now given the amount of antibiotic that missed my veins.   

My temperature rose, my heart rate was around the 115 mark, my blood pressure dropped and I spent four nights in hospital, in three separate wards. At one point I was back in the cancer bunker, in the same bed I occupied seven months ago during my diagnosis. Lying there, staring up at the tiny windows, completing a journey only to end up in exactly the same spot. Eventually I was transferred to the haematology ward where I was by far the healthiest and youngest patient. The youngest by about thirty five years. Two patients received their diagnosis whilst I was there and I had to suppress all urges to get up and draw biological diagrams for them. I think most people just wish to receive their treatment and have little interest in what their body is doing, or where it has gone wrong, or how cool their cells look on a blood film. I think most patients do not develop an unhealthy excitement when given a print out of their CRP levels for the year, nor do they instantly wish to graph these figures and request further data for analysis.

The official diagnosis was pyelonephritis, although no one is quite sure if this was actually the case. The diagnostic evidence was disjointed. It is somewhat academic as to where the infection was as the treatment regime is the same. The back pain still faintly persists. My CRP printout revealed I have probably had a smouldering infection since April. The cessation my regular prophylactic antibiotics allowed the bacteria to develop and my neutrophils, although at a reasonable level, are not functioning correctly (due to the chemo) so my body required external aid in defeating the infection. I am now on prophylaxis for a further three months. My CRP is returning to normal and my night sweats are no longer. Hopefully the slowly developing infection was the cause of my exhaustion, negativity and general unpleasantness. Hopefully it will be rainbows and internet kittens from here on out.

There are some positives from this experience. It forced Mike and I to discuss the possibility of me not being in remission. In all my negativity and despondency I had never really considered the prospect of the lymphoma remaining after treatment. I have read the scientific literature, it would be highly unlikely, and although I am not looking forward to the PET scan (which is tomorrow) on a physical level, I was not at all concerned about the result. Not until I started getting periodic sweats. This little infection also reminded me, and I think Mike, that although chemo is finished, I am not going to be returning to full health for a wee while yet. This is a frustrating admission. I had hoped I would feel nothing but better from here on out, but this will not be the case. I will not be walking the Norwegian fjords in August, the Greek gorges in September, kayaking the Adriatic in October, tramping parts of the Camino de Santiago in November. I will not be living my entire life in the next four months. Returning to full health is a daunting prospect. I need to get fit again. Never in my life have I been this unfit. I am relieved that the back pain was not due to physical inactivity, however a kidney infection does not explain the tightness in my hamstrings, calves and Achilles, nor the weakness of my shoulders, arms or core. A haemoglobin in the eighties may, however, explain my breathlessness.

And so that almost summarises the past four weeks. I guess other news of note is that I have resigned from work. For any of you out there who were thinking ‘god Liv, don’t quit your day job’ but were too polite to say as much, well too late! I had always aimed to retire by thirty. Does being unemployed count as retirement? Oh I have just refrained from making a rather cynical political statement here, please be grateful for my efforts.