A Numb3rs Game: Day -1

Today I Googled how many days the average British woman lives for. Morbid, I know, but bear with me on this. She lives for 82.7 years. That’s 301,185.5 days. It sounds like a lot, and it is, if you try and forget about all the time we spend sitting in traffic, queueing in Tesco, perhaps cleaning up our children’s sick, and how many days menial tasks like that take up.

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I did a little calculation of my own, and so far I’ve been kicking around for 7,682 days. The last year-and-a-bit of those days, however, the last 369, to be precise, ever since that awful day just over a year ago when I got admitted to hospital on the back of a blood test for anaemia, and left, eventually, with a blood cancer diagnosis, have been occupied with words and thoughts such as “haematological disorder”, “bone marrow transplant”, and then “cancer”, too. That’s a lot of days wasted to this shitty disease already, and I know that there are many more to come, but tomorrow marks a chance to say goodbye to some of those thoughts. To say goodbye, little bit by little bit, to the worried phone calls from relatives, the hospital stays and the needles and the poisonous drips.

Yesterday was a big enough day as it was. I finished my fourth, and hopefully final round of chemo, so today is just a rest day before my transplant tomorrow. In medical terms, your transplant is known as Day 0. So, just for a little while, when I’m having those precious little cells infused, the last 7,682 days, good or bad, won’t count. Every day after that will be measured, day +1 to +100, and, if I get my way, many many more. I’ve tried to stop thinking so much about my terrible odds, about the very real possibility of my cancer coming back in the space of those one hundred days or more, but instead to think of this as, really, the last hurdle. The last round of chemo, the last long hospital stay.

Today, my anonymous donor in Germany will be having his cells collected, and I haven’t stopped enough times to remember this. I feel there will never have been enough hours in my day to stop, and really, truly think about the implications of what he is doing by giving up a day of his life to wire himself up to a machine. He may not be thinking much about the outcome, but he is the selfless one, as I am not thinking enough about the procedure behind all this. It feels like we have been counting down to Day 0 for so long, it’s come around so much faster than any of us expected, we’ve had so many mishaps along the way, but for now I want to just appreciate the fact that I have a donor, I have another chance. And tomorrow is about embracing that.

What tomorrow also is, I’ve been warned, is fairly anticlimactic. Sounds awful, doesn’t it, after all this build up to a transplant? But I’ve had too many platelet and blood and potassium and magnesium transfusions to even count, and the cell transfusion is exactly the same: The transplant all boils down to half an hour of cells dripping into my veins through my line, after arriving onto the ward in what looks remarkably like the lunchbox that the least cool kid in the playground used to lug around, and then that’s it, for a while, whilst the cells work their way into my bone marrow and make themselves at home. There’s no blood, no cutting, no anaesthesia, not at all what you might expect from anything with the ‘transplant’ label. But I know I’m pretty thankful for that.

The scary stuff starts after that. As those new cells settle down in your bone marrow, the 20% chance of death I’ve been warned about so many times will begin to creep up on me. We’ve all heard of a newly-transplanted heart or liver, for example, being rejected by the tissue around it, and Graft Versus Host Disease in a stem cell transplant has the same effect. This is when the donor cells can prove their worth by fighting back against several tissues in your body: often the gut, skin and liver. Maybe I’ll have just a little of GvHD, but, as my doctors have warned me, any signs of IBS, skin rashes or sickness are a good sign that my Brand New donor cells are actually working on fashioning me a Brand New immune system, and hopefully not getting lazy enough to not fight back against the cancer cells, which would ultimately kill me (sorry, I realise this sounds extreme, but it really is all part of the package. It’s very difficult to stop talking casually about death when you’ve spent the best part of the last four months in hospital preparing for a procedure that, as we’ve established, will either massively help you out or actually knock you for six, as all the necessary things in life – cars, chemo, turbulent relationships – seem to do).

So, as I said, my final round of chemo has been marked by bored bed rest, more mild fevers, and constant reminders that today is -8, -4, -3 days, or whatever, before the transplant. It’s ungrateful of me, but God, I’m so very tired of it all. I’m tired of explaining what a transplant involves, I’m tired of thanking well wishers and then struggling to stay awake when they arrive to see me, and I’m tired of this latest round of drugs that have weighed so heavily on my eyelids over the last nine days that not only have I finally literally lost the weight of my eyelashes, but I’ve actively started to look forward to Day 0. Even if the murky weeks after it involve feeding tubes, diarrhoea, missing the sick bowl in some spectacular projectile vomiting, and endless drug rounds and tubes of blood.

It’s not over yet, not by a long shot, but all I know is that I’m tired, most of all, of my days being measured in numbers, in statistics, including a 75% chance of none of this being worth it. But I’m ready to crack on with it anyway. Despite my odds, I want those 61.9 extra years that the average British woman has promised me. I want my life back now, please.

alicebyron

32 Comments

  1. I wish you the best of luck for tomorrow and the weeks ahead, you are outstanding and your posts never fail to make me tear up.

  2. Your blogging is pretty selfless.
    And Anthony Nolan got at least one new name on their register from your stories.
    What goes around, comes around.
    Good luck tomorrow.
    (This well-wisher doesn’t need thanking.)

  3. Here’s to the first day of the rest of your life!

    All our love Rus, Suz, and Dot

  4. If all the people who are rooting for you have any effect Alice you will be fine so here’s hoping very, very hard. We will all be thinking of you.

  5. Thank you for keeping us in touch – so much luck to all of you for 0+N (where N is the largest number of days you care to name)…,,Margaret and Geordie xxxxxx

  6. Goes without saying each and every one of us who follows you and reads these updates will have you in their thoughts and prayers tomorrow and are right behind you over. E
    cho everything Evie said in response to your last blog, hope you manage to get some sleep tonight , love to you and all your friends and family xxxx

  7. Good luck tomorrow Alice. I hope your donor’s cells make themselves very much at home!! Xx

  8. Hope it all goes well tomorrow – will be thinking of you. You are so brave and write so eloquently about such a tough subject. Thank you for keeping us all in the loop. Compared to what you are doing, it makes my final law exam on Friday look like a walk in the park.
    This will make you laugh though – Tom (now aged 24) has just been back to the Almond Beach – it’s still the same although about to be made into a Sandals resort !
    Catch up soon x
    Much love to you and family

  9. I know you’ve heard it before Alice, and at the risk of boring you, I am still going to say it….you are the most amazing, selfless, strong and talented 21year old I know. (Don’t tell Abi!)
    You have gone through so much in the last year and you continue to blow me away with your incredible resilience.
    We are all sending masses of positive energy and thoughts your way because you so do deserve the best possible outcome from your transplant….here’s to 0+300,000

    Thinking of you lots and lots and wishing you all the luck in the world.
    Much love,
    Jackie

  10. Good luck tomorrow Alice. We will all be thinking of you xxx

  11. Well Alice it’s almost here – this first day of the rest of your life – that sounds pretty special to me – it ain’t gonna be easy but heck when in the last year has anything been easy – certainly not now!
    Dear God, did you hear Alice’s cry to You – she is so tired of it all – my prayer to You this last night before the new start, is, to please make it all worthwhile and Comfort her, Strengthen her and Continue to Love her as Your Special child – asking in The Name of Your Son, JESUS. Amen.
    Over these next good few days i will be holding you in my prayerful spiritual arms, rocking you gently, and continually praying the bestest possible outvome for each new day 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 and until they reach thousands!
    Loving you with HIS Love, patricia xxxxx

  12. All the very best for tomorrow Alice – we will be thinking of you and send you all the best wishes for this transplant being a great success. You truly are one amazing lady!!!
    Liz xx

  13. Good luck tomorrow and in the days to come. It’s definitely time for things to go your way now and start to look forward to happy, healthy days ahead. Sending love and strength xxxx

  14. Really hoping all goes well tomorrow and over the coming days. You will be in my thoughts. xxxx

  15. Wishing you the very best, Alice, and hoping you go on to make every last one of them three hundred thousand days count.

  16. To one superwoman using the words of another superhero – “to infinity and beyond!”
    Wishing you the very best possible outcome with your transplant. You can handle this. Just think – get through all this and employers will be queuing for your writing talents having seen your amazing blog! Bit of a drastic way to get get noticed for a future job, but silver linings and all that. 😉

  17. Sending you lots of good wishes Alice for tomorrow – you brave beautiful young lady. All our love.

  18. Alice your blog is amazing! So well written you are a very brave and unique person. I am sure it will go well tomorrow and look forward to further posts and hearing about your positive progress towards kicking this horrid thing! I hope to meet you one day at a Sherrif gathering.
    Keep writing – you are very very talented!

  19. I will be thinkin of you tomorrow, best of luck gorgeous girl. You are so strong and amazing xxx

  20. Alice, your journey is a revelation to all who read it, and no one could fail to be moved and amazed by each procedure you endure. You are indeed a warrior. Your German donor will be thinking about you too and hoping the generosity of his cells are strong and resilient in your body. Bless his contribution to you.
    Start tomorrow with positivity and be it the 1st day of life anew. Thinking of you from the other side of the world, and wishing those cells strength and purpose to do their ‘thing’ ! 💜💙❤️💛💚 xxx

  21. Been following your posts for a long time and can’t tell you how inspirational your story is, and moreover just how talented you are at writing. Good luck tomorrow and the days after, wishing you all the best!

  22. Good luck for today Alice, we’ve all been following your every blog and our thoughts are with you and your loved ones. May day zero be the beginning of your healthy new life, illness and procedure-free so that you can get back to enjoying yourself again as a normal 21 year old.
    You’ve heard it all before I know, but only because it’s true…you are flipping amazing and we are all in awe of how you’ve coped with the previous 12 months. You were dealt such a horrible hand, yet by writing your blog you found a way to reach out to others and turn a negative into a positive, not only in spreading awareness of the disease, but also of your talent for writing. I really hope this will provide you with the platform to launch your writing career…the world needs to hear so much more from Alice Byron! xxx

  23. Been following your blog for a while now, and haven’t commented yet, but wanted to say all the best for day 0 and all the days following

  24. You deserve a 1st Class honours degree in every subject under the sun except for Maths. (82.7 x 365.25 is 30206!). Wizz & I have been staggered at your blogs and you are constantly in our thoughts. Fingers here are all crossed for the success of the transplant.

  25. Good luck with your donation Alice! Everyone at DKMS (formerly Delete Blood Cancer) is thinking of you and sending best wishes.
    Joe

  26. So unbelievably cruel to hear you didn’t make it. Bless you, RIP Alice

  27. I like your article and your way of writing.

    It touched my heart and soul.

    My wish for you is that your soul is in a good, warm, harmonious place now.

    All the best,
    Dani

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