“I Don’t Know What to Say”

13/02/2016alicebyron 68 Comments

I heard it from my auntie, whose text to my mum I read as we pulled into the Churchill Hospital car park on Thursday afternoon.

My uncle, who spoke to me on the phone on Friday night.

My best friend, who was texting me fiendishly throughout it all, not wanting to miss a second of what was going on.

All of them full of kind, comforting words. But still, all ending with the same sentence: “I don’t know what to say.”

I don’t know what to say either. I don’t know how a routine blood transfusion at the Heath hospital in Cardiff turned into doctors and nurses I’d never seen before coming up to me, questioning me, asking if I felt unwell. How that turned into a full chest exam, a urine sample, a prod of the glands, all to check for some kind of infection. How that turned into the scheduling of an emergency bone marrow biopsy – my least favourite kind of surprise – which turned into my Mum manically driving down from home, into more tests, into more waiting, to being told that my white blood cell count had spiked, for no known reason.

When your white cells are up, with no visible external infection, that only means one thing; something is going on deep inside your body, and you need to get in there fast and have a look.

How this cancelled biopsy then became a mad rush to my student house to throw some clothes into a bag, into the car and speeding down the M4 to Oxford, as I said, I still don’t know. Fast forward a bit (because that’s how this whole process has felt, as if it’s been fast-forwarded), to an afternoon of a lot more waiting and a lot more hoping that we were wrong, and the waiting turned into a tantrum on a biopsy table, due to lack of anaesthetic. But somehow, the doctor turned my tantrum into a success, pulling out a hefty bunch of samples to send to the lab (imagine some kind of corkscrew sticking out of the back of your hip while the poor nurse tries to distract you from it all by talking about childhood pets). This turned into a bandage, into a cup of tea, biscuits, into the arrival of my senior nurse, and, after a fair bit of time making polite small talk and avoiding eye contact, into that word.

Leukaemia.

The word that my nurse in Cardiff had silently conveyed to me with her eyes, despite her calm tone.

The word that I’ve heard said in regards to my condition a thousand times before, but always accompanied by the word ‘if’. Now, it was not ‘if’, it was not even ‘when’. It was ‘now’.

My nurse told me she was “highly suspicious” that that’s what was going on. I’ve dropped the C-bomb a fair few times in regards to my MDS, but I’ve been far from a high priority patient. Now this is the real C. The big C. Or the big AML. Acute Myeloid Leukaemia.

After a sleepless night and some fast-tracked biopsy results, my consultant confirmed it today.

When I was first diagnosed in June, my bone marrow was made up of only 1% of blast (cancerous) cells. Today, it is made up of 50% of them. My body has been totally, completely invaded, and I’m still trying to wrap my head around the fact that on Tuesday evening I was contemplating where I could book an eyebrow wax, and by Friday I’d learnt that I wouldn’t need an eyebrow wax anytime for the foreseeable future, because I was suddenly listening to a doctor spell out chemotherapy regimes and hair loss.

We all knew this was the risk of getting on with my life whilst I waited for a transplant: leukaemia could strike me down at any moment. My manageable, long term disease could be treated whilst I got on with my business (business such as cheesy chips and nagging my housemates about who had used the last of the toilet roll). But all I really have to say is that it hasn’t worked out that way.

We all knew that cancer wasn’t kind, or gentle, or prone to friendly warnings about when he may be dropping by and setting up lodgings with you. We all knew about that. But this has just made that oh-so real.

But there it is. In two weeks I won’t have any hair. Or functioning bone marrow, for that matter, as the chemo wipes it out bit by bit.

No hair, and no social life outside a haematology ward, but everyone else’s lives get to carry on as normal. I’m not one for jealousy, or bitterness about what I can’t change, but the speed of all this has knocked me out a bit, really.

I’m twenty years old, and, fittingly, I am about to spend the next twenty weeks in and out (mostly in, unfortunately) of a hospital ward, completing three rounds of chemo, and spending my life discussing platelet levels, how the bloody hell I can finish my degree from said hospital ward, and how I’m supposed to stick to my Lent-induced lack of chocolate at such a crap time.

There’s nothing quite like being young, because you think you’ve got all the time in the world and suddenly you’re feeling as tired as if you’ve lived a hundred years, and the cancer battle is yet to come. Just last week I wrote a blog post about fundraising, and how well everything was going for me. All you need to do is scroll to the bottom of my last post to see for yourself how much your life can change in a week, and how cruel this disease really is.

It won’t all feel real until I step onto the ward and breathe in the sweet perfume of cytotoxins and tinned, processed vegetables that the NHS love to serve with dinner. But I can safely say that I already miss drinking a VK in the Student’s Union on a Saturday night and taking it for granted. I’m only twenty years old and, suddenly, my life as a student is almost completely over.

To summarise, there’s plenty of gore to come on this blog, humble readers. I wouldn’t worry about the river of inspiration running dry for much longer. I have a whole new life about to start.

And it’s funny how, despite this incredibly long, wordy post, it still all comes back to the same thing, in the end. Because I still don’t know what to say. Even to myself.