I’m Ariane, I’m 28 years old and on Monday 20th June 2016 I was diagnosed with Hodgkin's Lymphoma. This is my story.
Read Week 2: Chemotherapy
LIFE
I’m no philosopher but let’s start by getting one thing straight: life is a headfuck. One minute you’re swept up in a sea of after-work cocktails, yoga sessions, cinema dates and picnics in the park, the next thing BAAAM! Something, somewhere decides things need to be spiced up a bit – “Hmmmm, let’s see, you’ve already had a close friend pass away this year. So… oh I know, I know – CANCER!!”
EARLY DAYS
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.'
MELT DOWN
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…
EARLY DAYS
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.'
MELT DOWN
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…
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“
'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.
”
HOSPITAL
On Friday 3rd June I went for a follow up appointment with my GP. He said that I was so ill I needed to be admitted to Bath hospital that day. My blood test results had shown exceedingly high numbers. For inflammation (infection) in the body, a normal person should have a number of around 5 for their result; mine was at 220. For white blood cells a normal number would be 4; mine was 17. I was ill, very ill, and the funny thing was I still didn’t quite believe it – was I really that ill? I also had an x-ray whilst at hospital which showed some shadowing in the centre of my chest – maybe an obscure fungal infection, a doctor suggested. If only.
So I trekked my way to Bath, got a bed in a corridor in A&E, queued up mainly with old people all waiting for beds too and waited, and waited and waited…
During 'the wait', I saw a doctor. A beautiful, young, blonde, Swedish woman. I was led to my bed and she was leaning right over me, smiling down at me. “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 blood cancer.” And just like that, the walls of my world fell away from me. I was falling, all my peripheral vision blurred and I was just left staring up at this doctor, who was still smiling down at me and all I wanted to do was to punch her in the face.
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So day one, five hours in A&E and I had actually already been diagnosed – it just took another 17 days to be officially diagnosed. Luckily, I got my own private room. I felt pretty VIP, even if the room itself hadn’t been redecorated since the '80s and there was a granny chair in the shower.
Day three in hospital and a consultant came in to tell me that it was looking very likely that I had Hodgkin's Lymphoma, a type of cancer. I was going to have to have a CT scan and a biopsy but they were so convinced at this stage I had Hodgkin's they offered me leaflets so that I could read up on it. I turned them down, I couldn’t face it. They left the room and I broke down. 'I have cancer, I have cancer, I have cancer.' The words just hung there, floating around in my mind. I didn’t know how to process them.
“
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.
”
The next few days in hospital and the emotions I went through have all become a bit of a blur. Thoughts whirred around in my head at 100mph. 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; there is something, somewhere more powerful than us. That was the first biggie to get my head around.
Then I started to face my own mortality. Thoughts of my funeral played over and over in my head. How I would want roses placed in my coffin, and that I’d want to be buried wearing that lace vintage dress I’d seen in a shop. Then the anger came – and it surged. It lifted its evil head and roared 'Why me? What have I done to deserve this? This is so unfair, why me, why me, why me?' This was by far the hardest part to come to terms with.
But of course you can’t think like that and we all know positive thinking saves the day. So I cried a lot, talked about it all even more and thought to myself fuck this, I’m going to kick cancer up the fucking ass and out of my fucking body. And then Doris Day’s "Que sera, sera, whatever will be will be" played in my head over and over again for about a week – fucking all I needed.
I surprised myself with how quickly I started to make sense of my fate and the road to acceptance began. I knew that the only way to get through this was to accept it, cease all control and hand my trust over to the medical professionals who were going to look after me on this long journey. And I will never, ever forget for the rest of my life my mum coming in to my hospital room and saying to me "I just know you’re going to be okay." By far the most reassuring sentence in my life to date. So simple, yet so perfect and suddenly I knew I would be – I would be okay.
DIAGNOSIS
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.
DIAGNOSIS
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.
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So, on Friday 10th June I went for my consultation to discuss my results and seal my fate. It’s funny how your emotions decide to raise their heads. I was trying to be strong for the day ahead, but in the morning I couldn’t find a clean pair of pants and that was enough to set off the tears. I was scared, I was very scared, and more than anything, I just didn’t want this to be happening to me. It was a sunny Friday, I wanted to be drinking a pint and having a normal time. But no, off to Bath we went, me, Barry (boyfriend), my Mum and my Dad.
I got to the hospital and rushed to the toilets, which were spotless. As I reached for the loo roll I saw the smallest piece of graffiti that read 'FUCK LIFE' with a frown face drawn below. In these overly clean toilets, it jumped out at me like a big, fat slap in the face. Of course I started to cry, but I stopped myself and lifted my chin and walked out the cubicle, like I hadn’t a care in the world. Five minutes later and the next big wave of emotion came. I had never been on a cancer ward before, so even just having to walk into the waiting room felt like a huge deal. And then of course everyone in there was middle aged or older, and I felt people’s eyes burn into me – she’s so young, poor girl, what a shame. I’m sure they probably didn’t pity me at all, they probably didn’t even look or think twice, they all had their own battles to be dealing with. But again it was something I just hadn’t thought about, that I wasn’t prepared for, and it hit me hard.
Finally I'm called to my consultation. My consultant Chris Kinetchli is the most incredible, intelligent, amazing human FYI. Chris confirms that I have Hodgkin's, but that my initial biopsy needs to be confirmed by a third pathologist on Monday. Chris is so sure that this is the right diagnosis for me that he explains in depth the chemo treatment I will receive.
A few days later a lymph node swells up in my neck, so off I head off to Bath, for the millionth time this month, go under a general and have the whole thing removed. The call comes saying, as we’d known for God knows how long now, that I have Hodgkin's Lymphoma. Clarity, what a beautiful thing. Suddenly I feel back in the driver’s seat. I start feeling positive, desperate for my treatment to start and ready to face this demon head on. I will have a PET scan, to use as a base scan, which will highlight all the areas in my body that have cancer cells. Then I will start on a chemo drug combo called ABDV and in two months time I will have another PET scan to see how well the treatment is going and how much the cancer is being destroyed. All sounds so straight forward, right?
“
'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.'
”
And then the big fucking shock comes. My PET scan results. Chris calls me to tell me. I have just ordered lunch in a café. I go outside to take the call. “Unfortunately Ariane, the cancer is much more aggressive than we initially thought, it has spread to your spleen and your bone marrow and your lungs.” My mind switches off. I cannot fathom what he is saying. I fall onto the pavement. I’m sat there, on the pavement crying. I have no concept of who is around me or what is going on. I do not care. “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.” His words ring in my ears, I can’t really speak, I get off the phone. I dry my eyes, pull my game face back on, walk back into the café and tell my mum everything. Then I have the best tomato and goats cheese salad of my life and instantly feel better – it really is the small things that can make all the difference.
I also forgot to mention that this day, Friday 24th June, was Brexit day. It was a pretty fucking bad day. It’s already going down in history as a bad day and will be forever a blot on my memory as a bad fucking day. I cried a lot that day, and for the next few days. I would wake up at 3am and start crying, thoughts of death filling my mind. But as always, hope and faith would reinstall itself, my mind would fill again with positive thoughts, another beautiful bunch of flowers would arrive from a beautiful friend, another text would be sent with words of encouragement and support and I would get back on track.
TREATMENT
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.
THE NHS
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…
www.futurefertilitytrustuk.org
www.bloodwise.org.uk
www.nhs.uk/conditions/Hodgkins-lymphoma
TREATMENT
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.
THE NHS
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…
www.futurefertilitytrustuk.org
www.bloodwise.org.uk
www.nhs.uk/conditions/Hodgkins-lymphoma