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.