Hodgkin's is a funny one in that it’s a slow burner. I work in casting in London and was able to plough through my hectic job for roughly six weeks until the symptoms became too much. I’d had a bad back and had been given strong pain killers for it, so I just attributed the symptoms of extreme exhaustion to this. I started fearing social occasions, because I knew I would just be too tired, so I stopped going or started to cancel them. I lost all my strength, I couldn’t open a jar of Marmite, and sometimes found myself crawling up the stairs to my flat (all six of them!). My clothes started to hang off me. My jeans that once made me look shapely and peachy now had a good three inches of extra material to pull at. People started to comment – “You’ve lost weight.” Had I? Again, as easy as one, two, three, I found a reason for it, a justification – I hadn’t been going to the gym much so I’d lost my muscle tone. And let’s not forget the joy of the night sweats and fevers. It would start with me shivering, to the point that my teeth would chatter. I’d snuggle into my boyfriend and get a hot water bottle (which I later realised is the total wrong thing to do!) After an hour or so of this I’d suddenly be boiling hot. On a bad night I would need to change my pyjamas three times, as they’d be soaked through with sweat, along with the sheet and duvet. Even after all this, no alarm bells were ringing. Never did I once think 'maybe I have cancer', or even just 'maybe I’m seriously ill.'
So of course the day came when my body and mind finally gave in. It was a Saturday and I had to go up north to do a casting for a film I was working on. Three hours there on the train, three hours back. Just the thought of it was killing me. To this day I’m not sure how I managed it. I dragged myself out of bed and into the shower, fell into an Uber with wet, unbrushed hair and made my way to Yorkshire. I auditioned 30 people in two hours and then had to get straight back on the train. I changed at Doncaster (a place that could send anyone under, let’s be honest) and the shivers started. It was pissing it down, I felt freezing so I grabbed myself a tea. It spilt out all over my hand as I couldn’t hold it from shivering and suddenly it all hit home. So there I was standing on the platform, in the pissing rain in Doncaster and the tears started pouring uncontrollably. I knew it was time to take my boyfriend’s advice and take a week off work to recoup. Little did I know that one week would turn into a six month battle with cancer. Hindsight eh, funny little thing…
'So, just to let you know after looking at your blood results and x-ray, the first concern at the top of our list to investigate tomorrow is the possibility of you having cancer.' And just like that, the walls of my world fell away from me.
My first real thought was simply the fragility of life. That no matter how big and confident we feel, we will always be fragile and vulnerable.
My diagnosis was a long, hard, frustrating road. I met my wonderful consultant, Chris Kinetchli, on day four of being in hospital. He also said that due to my symptoms and my age, he was pretty certain I had Hodgkin's. But of course to confirm this I needed a scan and a biopsy. So it started with a CT scan. A very strange experience where you basically lie on a very thin bed and get moved through a weird mini tunnel. Once inside, a man talked over an intercom telling me to breathe deeply, then a nurse came out from a little room and injected me with some dye which made me feel hot all over, in particular in my genital area – so I thought for a moment I’d pissed myself and then that was it. CT scan smashed. My biopsy was much more unpleasant. I was still in hospital, and given no warning that I was going to have it. They had managed to get me a slot and so wanted to quickly fit me in. I was wheeled down to the ultrasound lab and waited, not knowing what the hell was going to happen. Once inside the radiographer used ultrasound to locate a lymph node very close to my clavicle. Once he found it he gave me three injections of anaesthetic in my neck and then got to work. He made a small incision in my neck with a scalpel and then using a very large needle, I mean the size of a knitting needle, he prodded around in my neck to find the node. Of course this didn’t hurt, but I could feel his every move, inside my neck. I felt extremely vulnerable and yet at the same time completely trusted this stranger I had only known for 10 minutes. He took the needle out, thank fuck it was over. Oh no, no, no, no I wasn’t getting off that lightly. He did the same procedure again three times and managed to biopsy two bits of tissue to be sent to the lab. I said my thanks and got out of that room pretty bloody quickly.
'It’s not a complete disaster Ariane,' he tells me, 'It just means we’re going to start you on a much stronger chemo regime. It’s not a complete disaster Ariane.'
There is always light at the end of the tunnel and mine came in the form of steroids. These pingers were an absolute game changer, life changer. I went from basically sleeping all day and only waking to force food down, to writing this blog and eating everything in sight. All my fevers stopped, all my shivering, all my exhaustion went, my appetite rocketed and I felt on top of the world, back to my old self. So now all I had was six months of chemo to get through – easy, breezy, lemon squeezy.
BARRY, THE SUPER HUMAN
Barry (mentioned above) is my boyfriend, my rock and I am a little sea urchin desperately clinging on to him. He has been to every single one of my appointments. He stayed with me over night sleeping in an upright chair whilst I was in hospital. He has consoled me when I have been at my lowest. He has tried to make me laugh at every opportune moment (mainly with shit puns.) He has put up with my moaning, with my constant demands for pain killers at 1am, 3am and 6am in the morning. He has become my PA recording all my millions of appointments for me so I don’t forget. He has cooked for me, cleaned for me and helped me to wash my hair when I haven’t been able to myself. He has relocated to Somerset so he can be with me for my treatment. He has taken a sabbatical from work so he can dedicate his time to me. He is buying a car so he can take me to all of my chemo sessions. The list could go on and on and on. But mainly he is fighting for me when I am struggling to fight for myself. His strength is carrying me through when I have no strength to even get out of bed. His love has wrapped me up in a protective blanket and is telling me, every step of the way that I can get through this and that I will be okay. I love you.
What an incredible beast it is. Shout out to all the nurses, receptionists, doctors, consultants, healthcare assistants, food servers, anaesthetists, porters, pathologists and every other medical professional who has supported and looked after me – they are all actual real life fucking life savers. As a country we must strive to save our NHS, because take it from me, one day when shit hits the fan it is the biggest saviour you will have
PS. I decided to start writing this blog quite late in the game, so that was my back story. From now on it’s all in real time baby…