I wanted to start this post by disregarding anything I’ve said about Chemo Round 1. I was incredibly lucky, and this time round, I’ve had what’s perhaps a more typical experience. It was, for want of a better, shorter, sharper and more choice selection of words; foul. And a totally surreal experience.
I’m not scared of many things in this world, especially not the big things, which I’ve always handled quite well. But I’ve learnt to be scared of two things: firstly, of the look that doctors have been known to give each other, or the sympathetic look they’ve given me when they hear I’m having this course of chemo (Flag-IDA, if you were wondering, but unless you have a lot of medical friends or parents to explain it to you, Googling it might not get you very far). Secondly, I’ve learnt to fear the huge bags of said chemo that have been coming into my room every night, and subsequently keeping me up until an ungodly hour with their side effects.
I was due to start chemo on Monday, last week, so home I went after my April Fools revelation (which I’m still trying to let myself laugh about), to enjoy my last weekend of fun. But back I came, unexpectedly, late that same Friday night. A normal temperature is 37 degrees, but for a chemo patient, anything above 37.5 is a cause for concern. 38 is a significant temperature for anyone, and mine had tipped me over that border of slightly sweaty, at 37.7, so I rang the ward and the night doctor told me to come straight in with an overnight bag. By the time I arrived and was having my initial check up, I discovered that my temperature had dropped back to 37.3. Naturally I was furious about the possibility of being kept in for observation all weekend and missing out on my last dregs of freedom, and instantly started frantically pacing my room, and asking every doctor, nurse and woman who came in to clean the bathroom floor if I could go home. The compromise was made that I could go home the next morning, but I needed to stay in in case this was a brewing infection that worsened overnight. This is where I heard the night doctor tell me I needed to be careful because “That chemo you’re having on Monday is pretty intensive stuff”, but I waved him off, having heard that last time.
Thankfully, the next morning, my uni friends pitched up in my hospital room, along with Anonymous Roomie 1 who was also checking herself in to my twin bunk, and who went for a stroll pretty quickly after having to listen to four shrieking girls start catching up. Soon enough we were out of there and I got to enjoy my weekend at home, before traipsing mournfully back on Sunday evening.
Despite not one word spoken to each other over the course of the next two days, AR1 and I were instantly not hitting it off. When I returned, instead of the prodigal-son style welcome that I’ve become accustomed to, she was watching Countryfile with no headphones in. Bad start. The ensuing snoring should’ve annoyed me the most, but I grit my teeth and made my best efforts to remember that this was not actually a conscious decision of hers. Sleeping with the light on, however, was, and I was nearly in tears by the time 6am rolled around, the TV came back on and the light remained not-waning, essentially. It’s hard to complain too vigorously, however, as the following night, it was my turn to keep us both up, as my light was on, my temperature was up so I had nurses coming in at short intervals to check on me, and I was hooked up to huge 10-hour bags of fluids. Someone, therefore, decided it would be a good idea to give me a diuretic: a drug through a drip that makes you pee, to get rid of some of the excess fluid floating around my body. A great idea, under normal circumstances, but not so sensible in the middle of the night. I was up and down to our shared toilet for a good few hours. Powerful stuff.
I was in such a foul mood when my mum turned up the next morning, that she worked a little of her magic and got me moved into a lovely little private room once again. I don’t wish to boast too much to you all, but I’ve got three chairs all to myself, a lovely, big window, and another ensuite. It really does make all the difference, and it’s always good to get one small benefit out of being the youngest person on the ward, as broadly shit and lonely as that predicament is.
Now for the chemo; you know how I like to keep you in suspense with a good tangent or five. So I was only on two chemo drugs back in Feb, whereas this time I was on tablet chemo for the weekend before I was even admitted, and then switched to three different daily drugs as soon as I came in. Two only ticked over for half an hour, so really haven’t been a hinderance, and I wasn’t nervous about the other one at all, as it’s one I had last time. However, what I did not realise is that, while the drug was given by a 10 minute injection last time, this time it was a huge bag that dripped away for four hours at a time. I think it was the lateness of it all that initially bothered me. It had to be given at a specific time in the evening, so usually ended up running until about 11, way past my self-allotted hospital bedtime.
These drugs only lasted six days, which people are generally surprised to hear, but don’t let the timescale fool you. It may not sound like long, but this stuff is 20x the strength of what I received last time, and I wouldn’t feel shy about saying that my side effects were a significant few multiplications worse than last time, too. So it was this bad boy in the dripping yellow bag, the one that disturbed my sleep, the one, even, that I’d feared the least, that turned out to be the real monster. “Nasty, nasty drug”, one of my night nurses used to exclaim every time she came to unhook me, which, although not particularly helpful, made me feel slightly better to know she sympathised. I had some mild fevers and rashes from this drug last time, and my skin is still covered in significant purple rashes now (my stomach, especially, looks like I’ve taken a real beating, when in reality I’m just not that cool), but the fevers were the real issue. Forget 37.7, which feels like a tickling in comparison. My top record was 41.1, and the nurses were in complete shock, saying they’d never seen a temperature like it on the ward.
What can I say? I do like to win, but I’ll be the first to admit that this took it a bit far.
It got to the point where I was on two types of antibiotics, countless cold flannels and ice water, and I was still croaking at the doctors to please, please just do something to bring it down, but everyone was at a bit of a loss.
I woke up every morning with a temperature of 40 degrees, spent the whole morning shivering relentlessly under a pile of blankets, perhaps perked up enough to sit up in bed in the afternoon, but by the evening I was sweating, absolutely radiating heat, and welling up whenever that bloody drip bag was wheeled into my room. I was hooked up to fluids for days, days on end, which was frankly unbearable, as I didn’t get a break even when the chemo was over. My arms and legs were enormous, and unlike last time, I was too weak to walk around and disperse the fluid, and couldn’t go further than my room anyway as I was constantly tethered up.
I needed blood transfusions, but you’re not allowed to receive blood when you’ve got a temperature as it can just make it worse. I was woken up every hour of the night to see if my temperature had gone down enough. Predictably it just stayed stubbornly on the rise, so I had to have the blood anyway, but getting very little sleep was something I became a bit of a princess about.
No one says they feel like themselves when they’re ill, but, I’ll say it, I was a completely different person. I genuinely believe that the drugs turned me a little psychotic. It took four nurses to hold me down for my millionth iced sponge bath at 5 o’clock on Thursday morning, whilst I was crying and thrashing, and on the first night I was finally disconnected from the fluids, I sleptwalked around the whole ward droning that “I need to tell my mum something I need to tell my mum something”. After four more nurses frogmarched me back to my room, I locked myself in the bathroom for a good half an hour and screamed repeatedly at them all to leave me alone.
All very embarrassing. I’ve enjoyed maintaining my reputation as the young, fun, witty patient. I haven’t warmed so well to my new one: the girl who requires minimal eye contact and soft, inside voices lest she STRIKE AT ANY MOMENT. I’m hoping at least a couple of nurses will forget about it soon.
Other than this behaviour, I’ve been pretty devoid of emotion, contrary to the title. I’ve been lying on my side for days on end, unable to get out of bed, unable to sleep but even more incapable of watching TV, reading a book or talking to someone. I’ve cancelled all visitors, left my phone on do not disturb and gone a whole day at a time without picking it up. Groundbreaking.
I’m finally starting to feel like myself again, as my temperatures slowly fade, but this chemo has really taken it out of me. I’m exhausted and emotionally and physically scarred from it all, but I’m getting there. My dietician almost did a sick down herself when she heard I hadn’t eaten for a week, and suggested tube feeding, but I refused on account of the fact that I’m not a sick calf, so I’m going to have to up my current diet of half a banana a day unless I want them injecting protein shakes up my nose in the middle of the night.
Now that the fluid weight is trickling away, however, it’s become apparent that I’ve lost a ton of weight, which I guess is unsurprising. If I come out of here gaunt and cheekboned enough to look ready for a catwalk, I’ll just have to take what I can get and forget the means it took to accomplish that look.
So, what’s next for me? Not much, hopefully. I’m stuck in hospital for the same reasons as last time; I need close monitoring, for blood transfusions and infections, GCSF injections to stimulate my bone marrow into working again, as well as acting like a zombie in the middle of the night, I guess, and I’ll be here for another couple of weeks, hopefully slowly making a full recovery. I hate over-dramatics, cruise ship entertainment and wedding cake that looks fancy but is ruined by a fruit filling being two choice ones, but I don’t feel too overly-dramatic about saying that I’ve just experienced the worst week of my life so far, so anything from here is up, let’s hope! Maybe my tastebuds will eventually come back and I’ll start liking tea, chocolate and water again (seriously, how does everything taste like chemicals), and if not, then to the catwalk I go!
Oh my goodness Alice, you are really having such a s*** time, I am so sorry. Let’s hope it gets easier and you feel a bit stronger soon. All our love Vx
Thanks Victoria, love to you too! x
Alice – what a lot to contend with!
3 thoughts for you….
a) If it makes you feel this cr** then let’s hope the chemo is also kicking the arse of the MDS
b) “You don’t know how strong you are until strong is the only option.”
c) You are so definitely strong as your wonderful, inspiring blog shows, so hang in there and remember one day at a time and you CAN do this!
Much love and best wishes
A well wisher
Thank you Susan, taking it day by day at the moment! x
Alice you are a heroine! I read your posts and it makes all the little things I’m moaning about seem like nothing. I hope you feel better soon and remember things will get better. That piece of chocolate will taste so good when you have it!!! Take care, Clare xxx
Thanks so much Clare, no such thing, everyone has their own stuff going on, mine is just temporarily quite ‘heavy’ stuff. Love x
Hoping that soon you will be feeling fine. Just fine. Perfectly fine.
Thanks Gwen, I hope so too!
Alice you need to be prescribed to people on the NHS! Whenever I read your blogs or chat to Sophie my heart goes out to you and your family and friends. Everything crossed for you that things start to improve now and just keep at it, day at a time and please keep sharing your thoughts. So many people are sending love and strength xx
That’s such a kind comment Liz, thank you, lots of love x
Your strength astounds me. I love how brutally honest you are in your posts Alice. I hope things start to look up soon, but in the meanwhile take each day as it comes.
Thanks Corinne, love to you and congratulations x
Alice you really are a trooper and I’m sorry to read about you having such a torrid time, hang in there xx
Thanks so much Amanda! x
How do you make chemo funny?! Lots of love Al ❤
Thrilled to bits with this comment, lots of love Gracie x
Once again Alice thank you for such a truly honest and heartfelt blog, all behind you and wishing your release day from the ward to hurry up .
Loads of cyber hugs platelets neutrophils or whatever you need xxxx
Thank you Loo, fingers crossed for the real ones soon, you know the drill! x
Hi Alice, I’m feeling ill just reading about your week! So glad it’s over and you survived!! Hope your taste buds return soon! Lots of love xxx
Thanks Clare! Love xxx
Truly inspirational, you are seriously stronger than you realise. You’ve made me appriciate life on a far deeper level. Thank you, stay strong, keep writing
Thank you Sam!
My heart goes out to you.. Your an inspiration to keep going throughout. I wish you all the best. Lots of love and hugs
Hi Livi, thank you, so kind of you to say! x
Alice – you’re writing is so bang on -I feel like I’m there with you when I read your words. Please beat this crazy illness and write a book – I wish you well on your journey and let’s get you back to panto next year. Lots of love xx
Thanks Mark, I wish! x
Mark is right! Alice you were born to write. Use the enforced incarceration to research publishers and get that first book deal!
As to the taste buds issue, you never know you might now end up having to eat only nice, and I mean REALLY nice, food. Get mum and dad to book Le Manoir…I think you deserve it 🙂
Haha thank you Paul, maybe one day!
Oh Alice I wish I was as clever at words as you are, so I could express how I feel about what you are going through,but most of all i wish I could take this horrible experience away from you.I am thinking of you sweetheart.
Lots of love
Lots of love Trish xxxx
Hello Alice, we don’t know each other, but I see and read your blog, because a friend shares it on Facebook. This morning as I read about what you are going through, everything around me faded into the background. What a horrific week. Nothing I write will change your situation, but you changed my world a little bit this morning and I will look at things differently today. Thank you.
Hi Sue, thank you, always really inspiring to hear comments from strangers x
Hi Alice hope you remember me I am Emily Sutherby’s mum from your Akeley days you were always affectionately known as ‘Byron’ I have just caught up with your blog I am so sorry that you are going through such an awful time your writing is an inspiration and the others who have suggested writing a book are absolutely right! Sending all our love and best wishes for a speedy recovery, no more ghastly treatment and lots of chocolate!! Marian xx
Thanks for such a kind comment Marian, of course I remember you x
Alice, YOU DID IT , yes you had support but it was YOU that did it, never forget that.
And you have written to us all again so soon , can’t thank you enough. I admire your way with words. The Chemo fog has well and truly lifted. I am with you Kx
Lots of love Kathryn xxxx
Poor you, this treatment sounds horrendous, but you’re strong Alice. You will get through this. I’m sure your blogs are helping lots of others with the same awful disease. Love from judi
Thank you Judi, I hope so x
So brave and bloody brilliant with words. I hope you are home soon. X
Thanks so much x
Massive bear hug
PS – 41.1 – Surely there are easier ways to get in the Guinness book of records ?
Haha thanks Rus, lots of love x
Dear, dear Alice – we’ve got Lizzy with us here in Bermuda on holiday and we’ve all just read THAT blog. It is quite extraordinary – funny, honest and brutal. I do hope writing it gives you a real buzz, and perhaps a sense of control over what is happening? It should really give you a colossal ego – it’s a brilliant response to a rotten run of luck. With love to all your family Margaret and Geordie
Hi Margaret and Geordie, hope you’re both well, and thank you for your lovely comment. You write beautifully yourself, Geordie, as shown in your letter to mum!
I have just come across.your blog from googling FLAG-IDA as my husband is going through it at the moment. Your post is inspirational and makes me realise that however positive a person is the are times when life is just awful and you just need to get through it.
Thank you for such a wonderful read and I hope you are doing well now.
And I agree with others that you are made to be a writer.
Thank you again for helping me massively through a difficult moment.
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