“I Don’t Know What to Say”

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.

alicebyron

68 Comments

  1. Alice, I know this is really tough, but we will be with you all the way thru. You write beautifully and movingly but without any schlock or self pity. Piers x

  2. Alice we are with you and your gang every step of the way. We will do anything and everything ,we think of you every day. Let’s talk funky wigs and painted eyebrows my lovey. Thank you for your wonderful blog, speak soon. Love you so much .Kx

  3. Wishing you all the support and love. I really love your blog, keep writing..xx

  4. Alice, onwards and upwards from now on. It’s going to be tough but your young and strong and I know you’ll get through this with the loving support of your family and friends. Xxx

  5. I wanted to say how much I am thinking of you x We all love you very much Alice xxxxx

  6. I don’t know you Alice but I sympathise and empathise with you, I had cancer twice but somehow you find the strength, take one day at a time and be kind to yourself. You are right – people don’t know what to say but you do – I WILL SURVIVE!

  7. Alice, I don’t know you personally because I saw this on Rod Fine’s page, but I just wanted to say that you will be in my prayers. Please be angry, tell your cancer you don’t want it, and put up a fight. Be brave, be fearless and trust yourself xx

  8. Dearest Alice you are a beautiful, inspirational young woman with strength and determination amongst your many qualities, you will get through this! I have been thinking of you a lot throughout your ordeal and send you love, hope and even more strength. Xxxx

  9. Alice. You are amazing. Wishing you the strength to get through this. Keeping you in my prayers. We have the choice of choosing between hope and hopelessness. I choose hope for you. And when you are well, again, you need to write a book about this. You have a wonderful way with words. Love, Brown Owl Carol xxoo

  10. I know what to say! Positive thoughts lead to positive outcomes, oh yeah, and get your Dad to pay for you to go to the Manor for your chemo sessions!!

    And keep on writing you do it so beautifully!!

  11. Be cross, be angry, have a million tantrums, eat tons of chocolate today. It’s not fair, you don’t deserve any of it. But you are an incredible, strong , brave girl and you will get through this. Sending love and strength Liz xxx (friend of Sophie!!)

  12. Oh dearest Alice, You have been dealt such a huge and unfair blow to your life journey. We’re still reeling from the news with you all. You are so strong, talented, beautiful and an inspiration. Keep going, it’s going to be so tough I can’t imagine, but we are all with you and here for you. Hopefully we can all help the days go by until you are through and out the other side. Keep writing and keep the spirit. All my love, Clare Xxx

    • Thanks Clare, I’m sure I’ll see you soon regardless of the conditions! x

  13. Sweetheart I Just read your post and am truly touched by how you write without pity, just the cold hard truth. The Churchill Hospital is an amazing place and they will create your road to recovery. It will be bumpy and it is so damn bloody unfair, but what I wish for you is the day when it is a distant memory. There is a nurse there called Lanie and she looked after my mum. Angels come in many forms and I believe she is one of them. xx

    • Thank you, I’ve been nothing but impressed with everything I’ve seen there. Fingers crossed! x

  14. I write from across the pond, simply a friend of a friend- You have moved me, enlightened and drawn me in Alice. So sorry for all you are going through– sometimes there are no words— feelings are too deep, too convoluted for human utterance. I hope you will feel lifted in some surreal way in the days ahead by all the love and support you can “feel” coming your way– I appreciate your allowing us “in” to understand the “going through”– along with you. Notice the word choice “going through” –this is not a taking up residence thing- ok? <3
    Sally

    • Thank you Sally, I can certainly feel it, people like you are very comforting, so thank you for your comment!
      Very true, just got to remember it’s a temporary situation! x

  15. Good luck Alice, one of my best friends from Uni, Lesley ….. class of 79-82, underwent treatment for Hodgkins Lymphoma in 1985 and then for AML 2012. She tells me she’s a “special case” for contracting two blood borne cancers and yes, she is. You too, it sound you like Lesley have some amazing friends and family to help you every step of the way. Lesley and I are radiographers, and know how wonderful the NHS can be, so take care and I look forward to reading your posts ❤️ X

    • This is hard to hear Sue, as I feel massively for your friend Lesley, but very kind of you to comment and, yes, very true, I look forward to seeing the NHS at its best! x

  16. Alice, you won’t remember me, but my son Tom was at Bear Necessities with you, my daughter Gemma was there with your brother Hugo, in fact I met your mum when we were both pregnant at some pregnant swimming exercise thing at the sports centre, you seem like one determined young lady, keep strong & keep fighting we are all rooting for you x

    • Hi Sue, I do remember Gemma, as she has been a good friend of Charlotte Brown so I’ve seen her through the Brown family. Thanks a lot for commenting, it’s lovely to get a blast from the past! x

  17. It’s a million years ago Alice that you helped us at Pony Club Camp – you were fab to come along and stay and such a great help. It’s easy for me to sit here and say ‘be strong’, but it’s ok to crumple and have a tantrum too….we’re thinking of you loads.

    • Thank you for such a kind comment Elizabeth, it does feel like so long ago! x

  18. You don’t know me – I’m a friend of a friend of your mum’s – but I just wanted to say how brilliant I think your blog is. So eloquent and direct and honest. I really hope you’ll continue to write during your treatment because I think a lot of people, like me, will want to read on. I wish you the very best of luck with what lies ahead. I have no doubt you’ve got what it takes to get through.

    • Hi Claudia, thank you, I hope to keep writing, great to hear I have support from people like you! x

  19. Hi Alice,
    Your blogs are so well written and inspiring it adds a certain pressure to writing a comment to you! Eveyone here in Harpenden that either knows you, your mum, your many aunties and uncles, your even more cousins, your Nan etc etc are sending you love and positive thoughts. Hope you can feel that where you are and it gives you strength. Love, Clare

    • Thanks Clare, it’s true that I always forget about all the many connections! Lots of love to you too x

  20. Hi Alice,
    Your post is so amazing and so inspiring as well, as an ex member of the cancer club I would like to wish you all the best on your journey. The best advice I can give you is to take one day at a time, one test at a time and one prod at a time. Although you may have bad days please look at them as a single instances in isolation, they are then no more than the morning after a bad take away or a really bad hangover and then suddenly, amazingly you will be looking back at how far you have come on the journey instead of what kind of journey lies ahead.
    You seem like such a strong fighter with such a strong personality and it will help you through this time, finally please keep writing the blog it’s wonderful.
    Wishing you all the best
    Love Anne

    • Hi Anne, great advice, thank you so much for commenting, very wise words! x

  21. Alice, if you are anything like as awkward as you were in my geography class to this ‘big C’ then it’s in for one heck of a ride!!

    • Thanks, I’ll try my best, as I managed to do with my eventual A in Geography….!

  22. Hi Alice, I haven’t seen you in so long but I am so sorry that you have to go through this. Thinking of you lots X

  23. Alice, you are so strong, how you manage to muster the courage to face this with such effortless positivity is something to be envied, you are the bravest person. We are here for you for whatever you need. Stay strong. Big d would be so proud of you. With lots of love Chris & Kerry

    • Thanks Chris and Kerry, looking forward to seeing you when it’s all over! x

  24. Alice – your written words are amazing to read – I am truly sorry that this is happening to you – it should always be ‘someone else’. Please keep fighting babe – with hair or without – I am always here if you need to vent. Panto people will know of your fight and will perform extra hard on your behalf. Lots of love Mark Hudson x

    • Thanks Mark, so kind of you! Good luck with Strictly Bicester, I was supposed to be there to support my friend Will, but unfortunately I won’t be able to anymore… x

  25. Dear Alice, I do not know you but so hugely admire your courage and grace and want to thank you for sharing your story with us all. Stay strong
    Christina

  26. I came across this on facebook and am so glad I read it, your writing is incredible – and for such a difficult task. I’m so sorry what you’re going through, good luck, stay positive and let Justin Beiber be with you xx

    • Thanks Martha, means a lot that you’ve read and thanks for your kind message x

  27. Hi Alice,
    You don’t know me, I’m a friend of Poppy’s. I just wanted to say that your blog is very moving and you write beautifully. Keep going, your bravery is hugely inspiring to other people. X

    • Thanks Lucy, very flattered that Poppy obviously nagged until her friends read this! Very kind of you x

  28. Oh Alice, this is a cruel blow. Stay strong, take it day by day – and keep up your cracking blog! So many with you every step of the way! (Not sure if you will remember me or my eldest boys, Will and Ben. Ask Emily! Love to you all xxx)

    • Hi Lynette, of course I remember you and the boys. Lovely to hear from you and thank you x

  29. Alice, you write so eloquently your blogs show your true talent. Sending all our love,
    Louise and Steve

  30. What I love about this piece other than you being inspiring and ridiculously brave is that you still refer to the funny things like your love of a ‘cheeky vk’ and ‘cheesy chips’ and shouting at your housemates. All positive things amongst this shit situation. Please hold onto those for yourself 😁 and keep them close throughout this journey and even though I don’t drink (especially vks) I look forward to raising a cheeky vk to you and stuffing my, usually well behaved face, full of cheesy chips when I hear the news that you’ve made a big recovery from E.Dubz (Erin). Thoughts are with you 😊.

  31. Fellow Cardiff uni go-er who spat in a tube in first year! Just so you know you’re in my prayers x

    • Well done Laura, thank you, such a great thing to do 🙂 x

  32. My friend experienced this just like you. One day he was jumping into my bed in halls and farting on my face, the next day he text me to say his chest infection was actually Leukemia. Throughout the entire time he was ill he would just keep saying it’s just a blip. And it was tough, he would tell me the chemo was taking him to some pretty dark places, he lost all his hair, he moved back to his parents away from uni life and all his friends. But it was just a blip. Two years later he’s been back at uni 6 months, his hair has grown back and he gets away with so much because of the excuse ‘I’ve had cancer, therefore you should do it for me’. From an outside perspective I know how it feels to have someone close to you diagnosed so suddenly, but stay strong Alice, it’s another challenge you’ve been set and you have to rock it.

  33. Hi Alice, I am your first cousin once removed, (something for you to work out when you are trying to pass the time in hospital). We did meet at your cousin George’s wedding and I have had updates on family news from your Aunt Elizabeth (my first cousin whilst we’re still in family tree area). I wouldn’t have wished to be reading a blog like yours for anything but it is managing to be a wonderful expression of what you are going through and I wish you all the very best over the time you have ahead of you. I just want to let you know that this division of the family are thinking of you and your family. Have passed on details of joining the bone marrow register to your second cousins (it’s that family tree puzzle again!) to spread the word as far as possible. Perhaps there isn’t anything to say, but I do send love to you and your parents, Rowena

    • Thank you Rowena, of course, I remember you well. Thank you so much for reading, I’m glad you liked it and took the positives from it all, which is what I’m trying to do, too.

      Lots of love to you, and thank you for spreading the word x

  34. I went to library having no work. I read your article in British magazine of dentistry. I was shocked to see ur positivity. U r a role model of our ages. I really hope u get well soon. We all are with u. We will win. Get well soon dear. I am from India.

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