“April Foo- Oh, wait!”

It seems that every time that I’m on the brink of prepping an intensely dull blog post full of nothing-news, something actually happens that gives me cause to write. I don’t want to feel as if I’m writing out of obligation, and whilst I acknowledge that my internet fame status leaves a lot to be desired, the last thing I want is for someone to pick up on the fact that I haven’t written anything and call my mum asking if I’ve suddenly become too ill to write. Luckily, this has not happened. Combination of two different blood cancers aside, the only thing I’ve been at risk of dying from recently is boredom.

There, I’ve said it. I’ve spent three weeks at home bored out of my mind. Not only have I had an immune system so far down the toilet cistern that I’ve been almost incapable of leaving the house or seeing the vast majority of people I’d like to see, I’ve also been teetering on that awkward brink of ill but not bedbound. The crippling boredom has come from my endless routine of watching Loose Women with my mother, waiting for my siblings to get back from school, days where I feel too sick to do anything but admire the scenery of my bedroom, and other, completely random days where my energy levels soar and I feel I could go back to work, but can’t, thanks to the aforementioned immune system problems.

I haven’t eaten a salad, or parmesan, or a takeaway, or grapes for six weeks now, and frankly the little things like that, along with not being allowed to leave the house and my dad’s addiction to Eastern European crime shows, are the ones that are most starting to get under my skin. I know, bedrest and too much TV, get the violins out for me, please.

Aside from hospital appointments, the most exciting thing to come out of the last three weeks was the growth of my new hair. I was discharged three weeks ago with almost a full head of hair. To my disdain, my leg hair has come out of this remarkably unscathed, but my eyebrows and lashes are clinging on for dear life, something I’m very happy about. The same cannot be said for my bob, which I’ve been saying goodbye to almost piece by piece, as my reluctance to go for the full head shave just meant that I had to instead adapt to a fortnight of picking hairs out of my food, the shower, and my bedsheets. But I adapted to that, and I very quickly adapted to having almost no hair at all. My appearance became sponsored by a small but treasured variety of scarves and cashmere hats (shoutout to Aunt Lizzie, who has utterly nailed the chemo-sympathy presents). But after I managed to glean medical permission to escape to the Apple Store to get my phone fixed one afternoon (in my opinion, possibly the most germy place I could’ve been allowed to venture into, given all the touchscreens, but I wasn’t complaining), I ended up getting so sick of one woman’s blatant stares at my scarf that I caved into the temptation of a wig. Thank you, rude stranger, for the push.

One of my nurses very kindly put me in touch with The Little Princess Trust, the charity I donated all my lopped-off hair to before my first hospital admission, and they offered me a real-hair wig option. I was sceptical at first, as I am with roughly 85% of everything I undertake in my life ever, but off I went to a very intimate salon that one of the representatives ran from her house in Oxfordshire, and tried on two wigs. One was exactly like my original bob style, and a very similar colour. My sister even said that, looking at me from the side, you wouldn’t know that anything had changed. The second one was a little more ‘out there’; big dark waves with ombre red to finish them off. I’ve never dyed my hair in my life, I think I’ve only curled it about twice. I’m as unadventurous as they come. But I looked at the reflection staring back at me, in this slightly more bold wig and I just knew that I’d regret not trying something a bit different, just this once. My original, plain-coloured hair will eventually grow back, but, for the next year, I’m excited to be reddy-brown and curly-haired. It also means I get to pencil on my eyebrows as boldly as I want, which I love.

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I couldn’t recommend The Little Princess Trust, and every hairdresser and wig specialist who represents it, enough. They’ve just given me this incredible gift that’s totally brought my confidence back, one that I’m sad to part with at the end of the day. I can’t wait to experiment more with my hair than I ever have done before, which is something that I bet no cancer patient ever thought that they’d get to say. Doctors and nurses can work their own science-based miracles, but you can find your identity becoming muddled through all the chaos that comes with medical care, and this charity finds a way of somehow making you feel grounded again. They can give you something that makes you happy to look in the mirror, even if you’re looking when your skin feels like tracing paper and the shadows under your eyes just won’t quit. And frankly, if it stops just a few more tactless Apple customers from staring, it’ll have been worth it.

I’m rambling, as usual, when what I originally wanted to start with was that, when the instinct to write a boring blog post out of obligation next strikes, I won’t ignore it. Because it seems that every time I do, something of a varying degree of bad happens.

After a longer amount of time spent at home than was expected, I knew that my inevitable return to hospital for chemo round 2 was looming, and that I needed to snap out of touch with the real world and return to what has become my own world. I had a delicious bone marrow biopsy looming up this week, and that would answer everyone’s questions:

  • Is the chemo working?
  • Where do we go from here?
  • Will I come back into hospital soon?

I don’t wish to drag it all out too much, but just a quick note: biopsies are shit. They are horrible and painful and I wouldn’t wish one on my worst enemy. They make you uncertain that you can ever do something else painful like give birth and the fact that they are worse for younger patients because they have stronger bones doesn’t make you feel any better when someone is digging around inside them whilst you’re awake on a table. My biopsy nurse held my hand through it, as she has through so many before, and when I opened my eyes after it was all over, we both experienced some bizarre sort of mother-father-esque bonding moment, as if I had just given birth (told you it was weird), and she told me she was proud of me for managing to do it without anaesthetic again. I could write a whole post on how brilliant I think she is, and her innate ability to tell what kind of mood I’m in just by looking at me.

Anyway, biopsies suck, and the only good thing to come out of them is the information, and the way the doctors can use those clusters of cells to come up with an all-important Plan-with-a-capital-P.

I felt positive going into hospital today for my routine check up. I had some bloods taken at 9am, and then we waited to see the doctor, as we always do. When we were told that we wouldn’t be seeing the usual registrar on duty, but my consultant, I was a teensy bit surprised. He’s always busy on a Friday, and I thought my biopsy results would be on file for anyone to tell me. But when he strode into the waiting room with two of the registrars from the haematology ward in tow, my stomach had a little moment where it felt like it was filling up with swirling water. Why were three doctors needed to tell me some biopsy results? I’ve had a lot a lot a lot of biopsies, but this was the first doctor overload I’d had as a result of them.

The long and short of it is that my chemo hasn’t worked, and despite my doctor’s efforts, there’s no easy way to say or hear that. The short version of it is that it hasn’t worked, so we have to start again, but the long version is that I’ve completely overhauled my lifestyle with the assumption that it would work, and now we’re back to square one and I’m just as cancery as I have been for the last couple of months, and it’s as if the last six crappy weeks haven’t even happened. But they did. They happened to me.

Perhaps it’s naive of me, but I never, never thought that the chemo wouldn’t work. You simply don’t expect that. When someone in authority makes a Plan for you, the Plan is followed with the assumption of a positive outcome, so your worries are automatically diminished. But this post is about what happens when the Plan doesn’t work.

Well, I’ve been told that the chemo regime that I’ve been following works for about 85% of patients, but I’m in the 15% of people that it didn’t work for. Again, I’ve beaten the odds.

But, yet again, it isn’t in a good way.

The New Plan, however, is fairly similar. We are still running on the same time frame, my transplant is still due to take place later in the summer, and I’ll still be spending the next month in hospital, as expected. The difference is the drugs. I’ve started a new tablet chemo today, and on Monday I’m expecting an introduction to a newer, harsher regime, with a delightful combination of three different chemo drugs, two that I’ve never had before. The fact that I’ve reacted well to the first round is a good sign, but the fact that this new regime is expected to be as badass and hardy as my cancer cells apparently are isn’t.

So here I am, waiting once again, but this time without the promise of my immune system recovering, but instead with the promise of the necessity of another few weeks of anti-sickness drugs, which I’ve been clutching the last few hours thanks to this tablet chemo, and a build-up to another few weeks on the ward.

I try and make my blog as relatable as possible, but, even I felt like I couldn’t relate to myself at the moment that I was given the news. Despite the news being a total shock, and hearing that the next few weeks could be even worse than I expected, I felt fine about it. Perhaps it was because, even amidst the mess, someone else was still making the Plan for me, I didn’t have to make the Big Decisions. Perhaps it was because it’s bloody hard to know the ‘correct’ way to react to bad news.

I nodded, I stayed calm, I made some jokes with my doctor about the potential of this being an April Fool, I signed a chemo consent form, I picked up my new chemo tablets, and I got in the car to leave, and I was fine fine fine fine.

It was only lying in bed later this afternoon staring at my ceiling that I started really thinking about it all. It’s hard to tell if doctors are actually worried, I’ve learnt, and although this is uncommon and unexpected, it’s not incurable and it’s not unheard of, which are the two statements that, at the end of the day and at the start of Cancer Battle Round Two, you want on your side.

But, overall, it’s pretty rubbish news. There’s no hiding that. April Fools’ Day has been and nearly gone, and despite all the pranks and forced humour, I can’t help thinking that I’ve remained the biggest fool of all, for believing that this would somehow be easy.

alicebyron

30 Comments

  1. So sad to hear about all this Alice. Your positive outlook on all this is genuinely so inspiring! All the luck in the world xxx (ps love the reddy brown hair colour!)

  2. I always read your posts in awe, captivated. You’re an amazing human. You’re inspiring and incredibly strong. You inspire me and make me want to do more for charities such as The Little Princess Foundation. I’ve never met you, but I want you to know that I think you’re an amazing person. Keep ploughing on, I believe in you.

    • That’s so kind. Charity work is always great for that ‘warm glow’ but I’m flattered that you read and commented also. Means a lot

  3. Yet another totally inspirational blog Alice , they need to be published in my opinion. Certainly no fool, seems another circuit required with all of us ( even those of us who are strangers to you) right behind you. Thinking of you and all your family and friends xx

  4. Hi Alice,
    I hope you don’t mind me reading your blog; my lovely niece, Jenny Mills, said how good it is. I am struck greatly by your positive outlook on life, how you are facing up to all the daily difficulties and how the impact of that affects what you do next (such as the lady in the Apple shop. Your hair looks fantastic btw) You will never fully know how your blog will affect other people but it will. Stay positive, find something better than Loose Women to watch and keep on loving that family of yours. There are always some positives out of negatives. You seem to certainly realise that. Thank you for touching my life, as you have done with other people. You are an inspiration to others. I will keep you in my thoughts and prayers. God bless you, your family and friends. X

    • Hi Mary, of course not, very kind of Jen to point you in my direction. I’m off to find better things to do than Loose Women now, wish me luck! Thanks for such a lovely kind comment x

  5. Alice – you need to convert your living with cancer blog into a book – your honesty and strength and frailty is refreshing. I’m totally drawn into your words and just wish I could do something positive for you. Keep strong and focussed – there is a lot of love and admiration out there for you.
    Good luck in round 2 xxx

    • Thank you Mark, I wish (sort of)! Whilst I hope cancer is temporary, maybe book writing won’t be. Got a long time and a lot of it to find out! Thanks for such a kind comment x

  6. Wow Alice, you are a beautiful writer and an inspiration young lady. Best wishes now and always Roger x

  7. Alice, you may not remember me but I ran the Brownie group with Carol. Your words are inspirational. One of the blokes I work with grew his hair long, then donated it and the sponsorship he raised to the Little Princess Trust so I can’t wait to tell him what a difference it makes. Thinking of you .

    • Hi Helen, of course I remember you. Thanks so much for commenting, that is great to hear. I aim to raise more awareness of the charity when I can! x

  8. Be Strong Alice and praying for you all. Your Blogs are amazing and hopefully helping you too.

  9. Alice, your positive attitude throughout all of this is amazing. i know Poppy is keeping you entertained (?!) but you are always in my thoughts. Your blogs are truly inspirational – keep writing. Loving that hair on you xxx

  10. Alice, you are an inspirational and amazing person. I am continually impressed by your strength and how eloquently you write, especially through this challenging time. Thank you for sharing your blog with us all x

  11. Hi Alice,
    I’ve become an avid reader of your blog – as all the comments so accurately say: you write brilliantly. We’ve met a couple of times – your mum used to be my nanny and I always liked to kid myself that you were therefore named after me! I babysat you and your siblings when you were about 7 and were already deep into the Harry Potter books, your love of reading and writing was clear from very early on! I am so so sorry that you’re going through this horrible time. All of my family are sending you and the rest of the Byrons so much love and are praying that those clever doctors do their thing and get you better. The new hair really does look stunning (and good effort with the nail polish too!).
    Much love, Alice xxx

    • Hi Alice, I remember those golden years vividly, kid yourself no longer, I think your name was a big influence! Thanks for the lovely comment x

  12. Hi there,
    You don’t know me but I have been following your blog with awe at both your strength and humour. You write beautifully and I hope you continue to write in whatever you decide to do in the future. This blog is an inspirational read and I hold you in my thoughts each day. Keep up your courageousness and continue doing what you’re doing! Best wishes to you and your family x
    P.S. your new hair looks gorgeous on you!

  13. Hi Alice. Your dad put me in touch with your blog as I chat to him over the wall every so often – we live next door at The New Lodge. He told me how inspiring your blog is and he was so right, you write so well and have the most amazing attitude. It’s no surprise this blog is so popular and is helping promote such great support. You should be so proud of yourself.

    I’ve signed up with Delete Blood Cancer as it appears I’m too old for Anthony Nolan (and they won’t believe my insistence that i am really still only 28). Having read your dads piece I think it’s also time to give blood regularly again. Through my work we have had a corporate sponsorship arrangement with Macmillan and I’ve often raised money with them, so I’ll now make my next attempt for Anthony Nolan or The Little Princess Trust.

    I can’t think right now of how Danie (my partner) and I can help out but if you ever need anything then please feel free to shout over the wall or knock on the door.

    Best of luck over the coming weeks….

    Lee (and Danie)

    • Hi Lee, I do know of you from my Dad but it was very kind of you to read this and leave a comment, I hope he hasn’t been nagging you too much about me and my blog, I know how he gets! That is amazingly kind of you to sign up to Delete Blood Cancer, for a big step it is ridiculously easy and not enough people know about it. And even kinder to think of AN or the Princess Trust for your next sponsorship event. It means a lot that you’ve read this and are getting involved. Love and thanks to you both x

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