When I was six, my grandpa died of cancer. I remember going to see him in the hospital. We had gone to say goodbye, but I was too young to know that. All I saw was a man in a bed in this sad scary room full of old people. The man almost had grandpa’s face, but it was puffed up from all the drugs, and he didn’t have grandpa’s hair. What he did have, however, was grandpa’s enthusiasm, energy and delight on seeing us, even in the throes of what must have been one of the hardest periods of his life. But, being six, I couldn’t see past the sad scary old people and the grandpa who looked different. I didn’t appreciate the chance to say goodbye to someone I so admired, and it is one of my biggest regrets.
That aside, I’ve been lucky. I’ve thought about death relatively little since then. We’ve all had relatives die. It’s horrible. It’s surreal. It’s unfair. But you learn to live with it, in time.
Like I said, I never thought about death much, even when I got my own diagnosis. Even when I googled it (never do this, friends), and words like “uncommon”, “aggressive”, and “varying mortality rates” jumped out at me. I never thought about it until yesterday.
I’ve always considered myself one of the lucky ones, and I’ve said this before. I see sick people every day on the ward. But I’m young and sprightly, I’m ambling around, joking with the nurses. I take up space, I make people notice me. I’m one of the lucky ones because I get the chance to still be me, and a lot of people with serious illnesses don’t get that.
I’ve had nearly three weeks at home again. You know the drill by now. I was discharged after three weeks in hospital, then I came home for a week. When I returned to hospital for my routine blood tests, however, the doctor ummed and ahhed over me, and after concluding that I didn’t look quite right, brought me in for observation, where I was admitted to a short-stay ward for the afternoon to check me out. Luckily, I sniffed out the nearest nurse to keep me company, and entered into negotiations with the Mafia.
The Mafia are the team of haematology registrars that prowl the ward. I’ve been in their care for several months now. They truly are a great group of guys, and I hope to god that none of them ever read this. Firstly, because I don’t want them knowing that I think they’re great, as it would ruin the sarcastic reputation I’ve spent so long building, and I’d be accused of getting soft. Secondly, I’d have to explain to them why I call them the Mafia (N.B., it’s because they love to stand outside my hospital room and converse about me in an attempt at subtlety while I can hear every word they’re saying, and then enter my room en masse, shut the door, and stand threateningly in front of it until they’ve delivered the latest bit of that morning’s news).
Anyway, we’ve become very good at compromises, the Mafia and I, and the final compromise that we reached on this day of my temperature and sore stomach was that I didn’t have to stay in overnight as long as I agreed to sit tight, have some antibiotics and fluids and see how I felt, first. As I was literally being tied to a drip stand as the doctor spoke, there wasn’t a whole lot I could do about the situation, but I was happy enough to be going home afterwards, armed only with a couple of pills and a warning from my dad about how I had to stop being rude to the people trying to look after me.
Then followed the inevitable is-the-chemo-working biopsy last week. I don’t like to brag (this is becoming a recurring theme throughout my blog, apparently), but it was my fourth one without anaesthetic (as is this), so I left feeling like I could pretty much conquer the world sometime fairly soon. That makes something ridiculous like eight biopsies in total, so I was happy to get it out of the way. We had to wait almost a week for the results, which is unusual as my consultant usually likes to get the preliminary news delivered to me as soon as possible.
In I went yesterday for routine blood tests and a platelet transfusion, and my doctor wanted to see me after. Remember the whole butterflies-esque feeling I had last time he said that he wanted to see me after my last biopsy? It was back with a vengeance, but I distracted myself by writing my last ever uni essay (so. close.). He arrived just as I was being disconnected from my drip, and in we went to one of those horrible, windowless, stifling offices that are just so unsuited to bad news, or any kind of human habitation, really.
And I listened to him say that “Alice, this isn’t going to be easy for you to hear”, and I thought about my grandpa, and his puffy face, and about all of those sad old strangers. And, just for a second, I wondered if I was going to die.
I don’t really know how to tell you, or anyone, or say to myself, that this incredibly powerful round of chemotherapy also didn’t kill off any of my leukaemia. Or that this is so rare the doctors don’t even know what they should do next. Or that they’re consulting with doctors everywhere, it seems, from Birmingham to Brazil, to find out what my best options are. And everyone seems to have a different opinion. But no one actually knows the answer. And that’s because there isn’t one.
I don’t know how to tell you any of those things. I didn’t even know how to write them down. Except I have just written them down. I’ve just told you. So there they are.
The reason that there isn’t one is because, as I said, this just doesn’t happen. Ever, really. I’ve been setting records since I arrived on the scene. Youngest person around to be diagnosed with MDS. Youngest person staying on the ward. Highest temperature seen on the ward during chemo. Getting discharged from the ward in record time after said high-dose chemo. And now, two failed rounds and a lack of options later, I’m starting to realise that I may not be one of the lucky ones, after all. I’m not the worst off, not by a long shot, but it might be time to accept that the squeaky-clean medical history and the it’s-not-all-bad-there’s-a-cure prognosis that I got in June, and then again in February, might not mean a whole lot anymore.
“We have, as it stands, two options”, my doctor told me. He talked me through them twice, but I’ll try and cut to the chase for you.
Option 1 is that we rush straight into my transplant now. This comes with a 20% risk of death as it is, but hopefully the intense chemotherapy that you need before a transplant will successfully obliterate enough of my leukaemia and MDS cells that the transplant will be a success, and I’ll get a new bone marrow system. This is just bringing the plan forward a little, really. But the risks are significant. You should aim to go into a transplant with the fewest amount of cancerous cells possible, or they can attack the new donor cells, and cause the transplant to fail. The aim was always to get me into remission before I had a transplant, but now this no longer looks remotely possible. Alternatively, even if it is successful, there is a high chance of relapse, and the cancer cells could make their comeback anytime in the next five years. There is roughly an 80% chance of this happening, my doctor warned us, even if the transplant has originally been successful. I don’t know about you, but that kind of comeback is even less welcome to me than McBusted’s, which I found painful enough.
Option 2 is that we try a third round of chemo first. One with a different drug that I’ve never had before. This would give my team time to prep my anonymous donor for his stem cell donation, and then, when I’ve finished these new drugs, we could, again, rush straight into transplant. Obviously, there’s a big risk that my leukaemia cells won’t be the slightest bit phased by these new drugs, as they haven’t been by the last lot, and then that’s a lot of poison injected into me for nothing. If it did work, which would be best case scenario, then we’d rush straight into the transplant, too. The dangers of this, however, are that putting two such intense courses of chemotherapy so close together is pretty dangerous, and all those toxins in my body could simmer into some kind of chemo-cocktail, resulting in something like a permanent heart defect, or some other long-term health condition that I’d rather not think about. Anyway, if these drugs are more successful, this brings the chance of my diseases making a post-transplant comeback to around 65-70%. It’s not great, either, but it’s more Backstreet Boys than McBusted: risky, but sightly less potential for disaster.
To me, option 2 is preferable. It’s harder, long-term, but, whether it works or not, I can look back knowing that we at least tried the new chemo-cocktail, rather than always wondering what if?
Obviously though, I’m not a doctor. The decision isn’t mine to make. There are a lot more risks associated with this option, and at the moment, it’s anyone’s guess. As I type this, my doctors are probably having some kind of debate over which one to go for. As you read it, they might have even decided. I find out tomorrow, on Friday, which one they’ve chosen for me.
I can’t decide if it sounds worse on paper or in person, but hearing the words “only a 20% possibility of survival without disease”, is pretty scary. I am not at home to thinking about dying. But, a year ago, I wasn’t at home to thinking about cancer, either, and I guess this is just part of the package.
On hearing those words, I realised that I was desperate to pee, so left the real adults to it, and came out of the toilet to find that my nurse had also ditched the adult chat, probably to come and check that I hadn’t locked myself in the cubicle to have some kind of breakdown that involved flushing my head down it, or something. I reassured her that I was ok, and she and my doctor raised several eyebrows whilst, I imagine, inwardly questioning whether or not I was a bit of a psychopath for being unable to react ‘correctly’ to such crap news. I reckon that I’m just really bloody British and awkward. Or badass. I’ll accept either. Like I said, I’ve worked really hard on that sarcastic reputation. Too hard for it to be ruined by a few tears.
I don’t know how to feel about signing my life away to the Churchill Hospital staff for even longer than I thought, and I don’t know how to feel about having to maybe write some kind of will that leaves my dad in charge of paying off the Amazon debt I’ve racked up buying Kindle books (I know, I’m wild, somebody stop me), because I still sleep with a stuffed Eeyore and five months ago I was at university, getting my kicks out of wearing a toga to a women’s rugby social. This is all new territory for me.
Overall, I wouldn’t recommend find out that you really might actually be dying as the best pre-21st birthday plan, but things could be a lot worse. My friend Madeleine has the ugliest feet you could possibly imagine, for example, and she’s managed to live fairly comfortably with them her whole life. My odds, as my Uncle Graham pointed out, are a hell of a lot better than Leicester City’s this time last week, and look how that turned out. Something that I am at home to is beating long odds.
If it does come down to it and I do end up on my way out in the next couple of years, I can’t worry too much. What’s a temper tantrum here and there going to achieve? It just means a couple of years of hopefully wangling cool stuff like skydiving for free, and absolutely not talking to anyone that I ever pretended to like. I can’t be too dramatic yet though, I’ve got a whole transplant to get through first.
In my own little world, though, I’m as optimistic as ever. I’ve got plenty of kicking around left to do. Plus, a degree to finish, a relationship with the Mafia to re-build, and a Kindle debt to settle before I can think about going anywhere.
Oh Alice, what a terrible setback, my heart aches for you. You are such a fighter, just like your wonderful Grandpa was, I know you will beat it. x
Thanks Victoria, he was brilliant. Love x
Hi Alice – i have been praying for you since your Auntie Lucy’s good friend Jane Chapman asked me to pray for you – my name is Patricia, Jane’s daughter-in-law in Scotland – and have been praying for you on my own, but then asked my good sisters in a prayer-triplet – Kate and Hazel – to pray with me for you, and then asked y own email prayer group at my church to pray for you as well – so lots of prayer going on for you dear girl..and last night was on am Eco-walk up on the hills around Linlithgow, and Sarah who was leading us through the woods, had us all sat down listening to the noises in the and around the trees, and asked us to think of the peace and healing of the trees in the Bible ‘at the side of the water of life’ and i asked for them all to hold a 21 year old girl called Alice in their hearts and pray for her healing – God Bless you dear young heart – you are forever in mine and JESUS Himself Is Praying for you to HIS Father – much love, Patricia x
Alice, you write so eloquently despite your situation. You are in my thoughts. From Jess (Sophie’s friend)
Your positivity and strength is inspirational. Don’t give up xx
Thanks Rosie x
I first met your grandpa when I was 7 and he was just the loveliest, kindest man. He never failed to welcome me with the warmest of smiles throughout my childhood and into adulthood too. You seem to have his humour and his bravery. I have no doubt he would be so proud of you. Wishing you all the best through this next hurdle Alice. X
Thanks Dana, he was the best! x
I’ll be thinking about you tomorrow like I do everyday, sending so much love to you. Your such an inspiration and so strong. Don’t give up and stay optimistic! Lots of love xx
Thanks so much Liv! x
Your writing is incredible, that final paragraph had me in tears. Even when you feel you aren’t strong, you’re stronger than I, and most people our age, could ever be if we were in your situation. I wish you all the luck I can give, you are an inspiration xx
Thanks so much, that’s really kind x
Definitely badass. Grandpa would be so proud of you Alice, as we all are. Love you so much xxxx
Thanks Soph, love you x
Once again – an amazingly frank and honest account of what you are going through. Have read all your posts – thank you for sharing it with us all x
Thank you for reading Anne! x
I always read your blogs and so wish you the best from afar (we have met at Lucy’s but a while ago, I used to play with your mum and aunties in Longcroft Avenue in Harpenden) . I too loved your grandpa Colin, always so funny and a little bit naughty, he was the life and soul of any occasion! Your outlook and attitude are so admirable, all my fingers and toes are crossed for more positive news next blog! Iola Hawkins x
Hi Iola, nice to hear from you. Glad you also have great memories, lots of love x
You are beyond incredible! Indescribably brave, thoughts are with you. X
Thank you Jessica! x
Alice Byron – you are quite quite extraordinary!
Alice, life is being so unfair to you, I wish it would stop now. Your Grandpa would be very proud of you. I’m not sure how you can write such a forthright blog with humour and good grace when the forecast is so gloomy. Good luck tomorrow, we will be thinking of you. Brave & inspirational are the two words that sum you up. Lots of love xx
Thanks Clare. See you soon x
Oh Alice, how on earth can you reflect so acutely on your own situation when you’re living it? I can see the Mafia huddle in my mind and the poor doctor who had to give you the ‘we don’t know what to do’ news. You’ve made it so completely real for all of us. Please carry on being as gutsy as you are and tell your wonderful parents how much we feel for all of you xxx
Hi Margaret, thanks a lot for reading, lots of love x
Addictive reading, as Margaret says above you make it so real for us. I meet patients with a similar attitude to yours everyday, and my team and I love them for it so keep it up please. Take care Alice xx
Thanks Sue, great to hear you can relate x
As always a great piece of writing sorry it’s not telling the news you wanted to hear. Keep fighting and soon you hear the positive news you deserve. Thinking of you all xxx
Thanks Kirstie x
Alice your blogs are an emotional roller coaster! What lovely pictures of you and you Grandpa. He was such a wonderful person and is still very missed. You have such a fantastic sense of humour and that is certainly something you have inherited from him. I don’t remember any sentences he said that didn’t end with his big,beaming smile! I’m sure the Mafia are huddled together as i type and will come up with a positive plan moving forward. I must just pull you up on one thing. Mcbusted! Kate and I went to see them in concert (under the pretence we were taking the kids) and they were actually quite good!! We are all thinking of you. Lots of love xx
Thanks Clare, glad you have such fond memories also, and are clearly cooler and more in touch with boy bands than I am! Love x
I only came to know about your situation when your cousin Poppy told me about what you were going through a while back. Your approach so far has been the most amazing and wonderful I’ve ever come across. I can barely imagine what you’re facing but you’re attitude has been more admirable and inspiring than most people could probably ever hope for. I really do wish you the very best and wish with all my heart that things take that turn for the better soon – I truly believe they will xx
Thank you so much, that’s really kind of you to read and especially to read out and comment. I hope so too! x
Alice, you are a beautiful writer and have incredible strength. You have made me both laugh and cry and bought back fabulous memories of Colin and his amazing humour, courage and strength. Like Grandpa, like Granddaughter! He would be so proud, as I know the rest of your family are. Xxx
Alice, you have such a wonderful way with words. Thank you for staying high spirited and full of fight. We are all proud of you and pulling for you. Sending positive vibes and lots of love xxooxxoo
Thank you Carol xxx
Amazing young lady. Hope to see you in person someday in bali, the island of the Gods. Best of luck, let me know if you are coming to this part of the world xo
Alice, you are awesome – these blog posts are so engaging. So sorry to hear you’re going through this. Keep up the fight! X
Alice what an inspiring young lady . You don’t know me but I am a close friend of Luke and Lucy . She keeps me posted on your progress . What an amazing blog and an amazing women . Keep strong and stay positive . I am sending you reiki if that is ok ? Love Yvonne X
Alice, you are truly a remarkable young woman. I have been so utterly amazed following your blog and understanding how openly and boldly you are coping with everything. Keep your chin up as we are all supporting you with all our best wishes.
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