So I did it, I bought a domain name, I have a WEBSITE. I feel so old and sensible, when in reality I’d like to be excused as I get to grips with all this. Everyone says writing helps you come to terms with what may be going on in your life, so we’ll see how true that is.
Imagine this: you’ve been diagnosed with a serious illness and you’ve suddenly become unusual, ‘interesting’, at a push. Naturally, it’s all your friends and family can talk about, and you go along with it, but every so often, all you want to do is talk about “normal stuff”, something I’ve told friends to do in the recent past.
That is what I want for this blog, I want to talk about being ill, I want to keep people updated, I want to reach out to other people in similar positions, but I also, for want of a better phrase, want to talk about the holy grail: Normal Stuff. So I’ll start at the beginning.
A little background for you all. I’m nineteen at the beginning of this twisted fairytale, in my second year studying English Literature at Cardiff University, and I’m pretty damn normal. I have a couple of great circles of friends, several that I’m lucky enough to have known since I played kiss chase and wore my hair in bunches, a wonderful family, a busy but fun part-time job at home (I’m a waitress for events company Jamie Oliver’s Fabulous Feasts, and I love it), and a quiet appreciation for comfy pyjamas and pretty, pastel coloured things.
I’ll try and stop rambling and begin.
It’s the April of this year, I finish my Easter holidays and head off back to Cardiff. I allow myself a few days in bed, not that I deserve it after three weeks off, to recover and try and force my brain back into work mode. I have two essays and a portfolio to submit within the next four weeks before I can head off back home for summer, leaving all my uni friends behind as they struggle through exams for another month. I start to think I should’ve done a little more work over Easter.
The few days in bed never seems to end. I tell my anxious parents that my work is going well, while internally putting off the panic by watching endless Sex and the City episodes and dreaming about somehow squeezing a career-de-Carrie Bradshaw out of my now inevitable third-class degree.
The few days becomes two weeks, but this is normal, right? I just enjoyed my holidays too much. I celebrated both my sister and mother’s birthdays, my boyfriend took a long weekend off work and we spent the Easter weekend in Gibraltar to celebrate his 21st. My brain just doesn’t want to do work, I’ll start tomorrow. Really, this time.
Suddenly my essays are due in a week. What happened to those three promising weeks? I still can’t get myself out of bed. I sleep until noon and don’t get up until 3pm, not even for food, despite frequent early nights. I don’t go out with my friends. I feel empty and can’t even bring myself to panic. Usually I’ll have one big breakdown about a fortnight before any exams or deadlines and then that’ll be it, the dramatic part is over, I kick myself for being disorganised, and I get on with it. This feels different.
I begrudgingly get on with bits of work, but end up falling asleep on the desks in the library after the ten minute walk there from my house. The walk back feels like a half-marathon and I’m far too tired to do anything after it.
I put it down to depression. This feels like no big revelation, with no solid facts behind it, despite the fact I’ve never had a history of mental illness, am physically fit, and have an endless list of supportive people in my life. But it fits. I don’t want to see or talk to anyone, I want to sleep and enjoy endless silence in my bedroom. The truth is, I enjoy uni, but I also like my home comforts. I miss my family, my boyfriend, and I always have a lot of trouble adjusting to life in a cramped, rat-infested student house with four teenage boys and Joy after the comfort of my home for a few weeks. I don’t tell any of my housemates how I feel, instead I reassure myself that this is normal, and somehow within the last week I force myself into enduring night-sweats in our stifling library, and get the essays in.
Predictably, after a couple of all-nighters, I celebrate by heading off to sleep, laughing off everyone’s questions about who I’m going to get drunk with as all my housemates still have ongoing exams.
After another week of relaxation, I’m reunited with my lovely Dad, who helps me pack all my stuff into his car, takes me out for a you-finished-second-year lunch, and we return back to my little village nestled in Oxfordshire.
Being home has the same effects as recreational drugs, or so I imagine: I feel a relief at the familiarity of it all, I relax, the negatives within my life fade, but it is all short-lived. I go back to work, and although the long hours become noticeably harder to bear, I no longer spend unnecessary hours in bed; having a job forces me to get up and get out of the house, I celebrate my 20th birthday, and I forget about any self-diagnosis or depression.
I start to feel dizzier, going to the toilet more just so I have an excuse to sit down at work without anyone noticing. But that’s normal, right? I’m lifting heavy crates and running around after customers all day.
People tell me I look too pale, including my ever-caring Grandma. I tell them I’ve always been that way, though no one said it to me a month ago. I ignore that fact.
I keep getting very short of breath. Strange, that shouldn’t happen just from having a shower. Well, I don’t do much exercise, so I guess it’s fair enough.
I go shopping for summer clothes on my own and throw up violently at the till in front of everyone for no apparent reason. It is utterly mortifying. The same happens a few days later when I try and go for a run.
My Mum asks if maybe I’m pregnant. It would explain the nausea and the tiredness, she says, and it would, but I tell her she’s being ridiculous anyway. I probably have a bug, just one of those 48-hour things.
But, I admit it to myself, something doesn’t feel right. I book a blood test at the doctor’s, but it’s in two weeks when they have an appointment. No point in wasting their time as it’s probably nothing. My friends have been nagging me to go for several weeks, just for the dizzy spells, and finally this will shut them up, I tell myself.
I do a bit of googling in preparation and plug in my symptoms: shortness of breath, increased levels of tiredness, occasional vomiting. Looks like I have a touch of anaemia, nothing to worry about, some strong iron tablets can sort that out.
I’m suddenly covered in huge, dark, purple bruises. Instead of even wondering why I’m suddenly bruising so easily, I show them off to people. “Look how busy I’ve been at work, see how it’s left me with battle scars?”
It’s now Saturday 6th June, my legs are covered in bruises as I head up to Loughborough to celebrate my friends’ birthdays. My throat aches, we go for a pub lunch and I can barely force down some chips. I suspected tonsillitis but my GP has told me my throat looks normal. It gets progressively worse throughout the day and I’m finding it difficult to even swallow a sip of water. That night I lie miserable in my friend’s bed as they all head off out without me, feeling weak and aching.
I book an emergency appointment at my GP on Monday morning, and see a different doctor who confirms I have tonsillitis. I spend three days in bed, every muscle aching, eating nothing but the occasional yoghurt.
The sweet, sweet antibiotics kick in fast, and by Thursday I’m out of bed ready to go to the GP for that blood test I booked, the one to put my friends’ minds at rest. I see a new doctor, describe my symptoms, and she nods, writes me a form for a blood test, and tells me it’s probably nothing serious. I have the blood test that afternoon, and the nurse tells me the doctor has marked it as urgent, which I find strange, anaemia isn’t urgent. But maybe they do that with everyone?
I was pretty nervous for this blood test, I haven’t had one for four years, and, being so physically fit and healthy meant I wasn’t used to needles. But I endured it, went home and forgot about it.
That afternoon I got a call from my GP: ‘We’ve got your blood results back, they’re extremely abnormal, you’re very anaemic, Alice, and I suggest you get yourself down to the Emergency Assessment Unit at the John Radcliffe hospital in Oxford immediately.’ Somehow I’d rationalised myself to the point where, after the initial surprise, even this seemed normal. Well, at least it’s only anaemia, like I thought, I’m sure they can still just prescribe some iron tablets at the hospital, too. I even told my Mum she was being ridiculous for suggesting I pack an overnight bag, but did so anyway.
Down to the hospital I went, where I sat for a few hours before being taken into a little observation room, having more bloods taken (cry) and a cannula inserted into my hand. My good God I cannot begin to describe the shock of that. Having just got used to the ‘sharp scratch’ a blood test entails, I was entirely unprepared for how much more sensitive the veins in your hand are than in your arm. I cried for a while, then had this thing taped to my hand, and was sent back out to the waiting room with my copy of Harry Potter and the Prisoner of Azkaban, for another hour or so while they analysed my bloodwork.
I was called in to the little room again, with my faithful Dad hovering beside me, completely bemused as to where this had all come from, I imagine, while I had a physical exam. After more waiting, I was told again that my blood was very abnormal, and to try and understand why, they needed to admit me overnight for observation and do a big blood transfusion to keep my energy levels normal, along with regular blood tests and a bone marrow biopsy tomorrow. As kind as the doctor who told me this was, it did not stop me having another little weep. I knew nothing about bone marrow biopsies, other than the fact that it involved taking a chunk of your bone out of your hip. No thank you, I was supposed to go to work tomorrow (for anyone wondering, this is by far the worst reasoning you can use to try and get yourself out of hospital early, apparently I needed rest).
I was prescribed a sleeping tablet and fell asleep after a long period of disdain at how they’d put me on the Geriatrics ward, and left that blasted cannula in my poor, sore hand. Mercifully I had my own room with views over Oxford. Never will I take that blessing for granted again.
This gratefulness was short-lived when I was woken the next morning at 6 for a blood transfusion that was still ticking away when my parents arrived at 12, my Dad gazing around and noting that I was “the only one on this ward who has your teeth in your mouth instead of in a glass beside your bed!” The day was brightened slightly by a surprise visit from my even more surprised boyfriend, who’d managed to get a day off his training at his northern RAF base.
Several haematologists came to see me over the next few hours, preparing me for this sudden biopsy, and suddenly it was 4pm on that Friday, and a doctor said they needed to hurry up and get it done so that the results could be processed before the end of the week.
My whimpered protests that I wanted as much sedation as possible did not get me very far, as I was prescribed a tablet to ‘make me very sleepy and take the pain away’ (this magical substance is called Paracetamol, for you curious people out there). I am not one to criticise the use of modern everyday painkillers, but the pain of a headache is a little different to that of someone drilling into your hip, thus I think it was a little insufficient at this point in time.
My haematologist used a local anaesthetic to numb the skin around the site they needed, and even that hurt, lots of little prickly injections into my love handles, but there was only so much she could numb solid bone, and the feeling of pressure and digging around in such a rock-hard substance is like nothing I can describe. I think my screaming and crying must’ve terrified the poor young girl doing work experience with haematology who came to watch the procedure. I hereby apologise to the future of medicine for her inevitable absence.
I also apologise for how long this post is getting, it’s difficult to describe a lengthy medical diagnosis in less than 3,000 words, apparently. I’ll try and summarise from hereon out.
I was discharged the next day, and spent a week accompanied by my now familiar friends: Aching Hip, Slow Movements and Increased Shortness of Breath. Oh, you guys.
Cue two weeks of regular blood tests and an introduction to my fiercely organised Senior Myeloid Disorder Specialist Nurse, who makes me laugh for her ability to always carry a pen, but never a notebook (she may give herself ink poisoning thanks to all the writing covering her hands) and, partner in crime, my consultant haematologist who would be overseeing the rest of my care.
I was also familiarised with the Day Treatment Unit at the Churchill Hospital, a symbolically depressing room brightened by its squishy purple chairs and wonderful nurses. In I went for a long blood transfusion, during which I watched a lot of Orange is the New Black and played I-Spy with my Dad.
It is now 15th June. I am supposed to fly to Sweden on the 22nd, to work for Jamie Oliver’s at the Volvo Ocean Race. I go in for a second bone marrow biopsy and see a young registrar who advises me that ‘it would be very difficult to recommend you do that at this point’. That is, I have since learnt, doctor speak for “No”. Cue more hysterical tears and a mini tantrum, and a nurse who thinks I am crying at the thought of another biopsy. She tries to comfort me, but I will not see reason. I have already missed out on doing the Race for Life with my work friends when in hospital a week ago. My flight is booked and paid for, I will not be missing Sweden.
(Spoiler alert: I do miss Sweden. I can confirm that the crying of a 20 year old girl means nothing to a team of blood specialists. Probably a good thing I didn’t go, as a few days later I picked up an extremely painful infection which involved me peeing blood. Sorry, internet, just trying to be honest, here.)
My second bone marrow biopsy was a huge success. The crying of a 20 year old girl can at least get a stronger dose of anaesthetic delivered after the last experience. I was provided with Gas and Air (Entonox, for all you medic-brainiacs), which is the stuff they give you while in labour. I had it when I broke my ankle five years ago and it’s amazing, it’s like being drunk, for want of a better description. You can still feel pain, but you just stop caring about it and become capable of just breathing through it. It also lowers your inhibitions, I found myself happily chatting to Tina, the nurse who had tried to comfort me, and slurring my speech as we talked about her ongoing training for a charity run she’s doing. She’s since become a wonderful friendly face I look out for every time I go into hospital, and is always around for a hug and some words of encouragement.
I got another drug put through another cannula which completely wiped me out. I remember nothing of the procedure and enjoyed an hour-long nap afterwards. Anaesthetic is totally worth temporarily starving yourself for, especially when you have someone like Tina on hand to bring you tea and custard creams when you wake up. You rock, Tina.
On a side note, following that biopsy I made it to my boyfriend’s passing out parade into the RAF, and I’m so glad I was determined enough to be by his side as he became a Flying Officer. No one was sure if I’d be well enough, and it was a long day for both of us, but so worth it to be able to celebrate with his family on the biggest day of his life so far. Here I am, still looking pretty gaunt even under a couple of layers of make-up.
I had another meeting with my consultant following that, and was told that unfortunately, they had no official diagnosis for me yet. I was supposed to be going to Egypt that following week with Matt, my boyfriend, to celebrate his graduation and the end of a hard year of work for both of us.
Out of the blue, I was informed again that it “would be very difficult to advise” that I go. I was gobsmacked. This holiday had been booked a while ago, before I even had my initial blood test. I understood their need to cancel a week of hard work abroad, but a week of relaxation on which I’d spent over £600? Surely this had to be some kind of joke. My parents nodded along, obviously having expected it, but I was completely beyond reasoning with. I cried and cried (really ugly, open-mouth crying, too), and insisted I had to go.
Once we got home, the tantrum I had was one to rival the likes of what you used to see on Supernanny. But no amount of screaming, pleading or cajoling would change my parents’ minds. My doctor’s “advice” was law. I saw no reason for it. The hospital had tested for leukaemia, HIV, all the scary stuff, and had found nothing. Just because they couldn’t find out what was wrong, I insisted, was no reason why I couldn’t go.
My Mum told me at the time that it could be something serious, something requiring months of treatment, and I told her again and again that she was wrong, that it would be something like diabetes, controlled with regular medication. But they wouldn’t budge.
I went back to work and whined and complained about poor little me, how unfair my parents were being, how much money I’d lost. ‘They would know if it was something serious, though, right?’ Everyone at work asked, and I agreed. ‘Absolutely, of course.’
Matt had taken three weeks of leave for us to go on holiday and then spend time together. He was now approaching his final week of home comforts, and I had heard nothing more from the hospital, other than updates on my still-abnormal blood counts. Miraculously, I persuaded my Dad into the idea of a holiday to Spain. We were desperate to get away, Matt and I, and my Dad had promised to support us financially after we had spent so much on a cancelled holiday.
And that was it, suddenly I had a spontaneous holiday to Spain for Matt and I, funded by my ever-generous Dad, booked to leave in two days time for a week of sun and downtime. Every girl’s dream, right? Wrong. I had a routine blood test the day before we were due to leave, and then, late the night before, my haematologist rang the house phone. Suddenly I was being told I needed an emergency transfusion, all my blood counts had dropped dramatically, would I come and see him tomorrow morning?
Speechless, I handed the phone to my Dad before breaking down in tears. And yep, I was mourning another lost holiday, maybe silly in the grand scheme of things, but I just wanted to get away. Plus I felt fine, as I kept insisting.
I knew this was out of my parents’ control, but I still screamed that I wasn’t going to the hospital tomorrow, I was going on holiday.
But at 9am, when I was supposed to be watching a stewardess point towards the emergency exits, I found myself following the consultant into his office with my parents. He told me we needed a chat, but he had no official diagnosis for me yet.
I will never be sure exactly what constitutes an official diagnosis, as over the next hour he proceeded to tell me the following facts:
- I have a condition called Myelodysplastic Syndrome (MDS). Only 2,000 people are diagnosed with it per year in the UK and most of those people are over 60 years old (I have since learnt that you could count on one hand the people in my age range who have been diagnosed with it). It means that my bone marrow is producing abnormal cells. There are different types of MDS, but mine is called refractory anaemia with excess blasts, which means the red blood cells which carry oxygen are affected (hence my shortness of breath), along with my white blood cells which fight infection (cue sudden tonsillitis and urine infection), and my platelets, which stop you from bleeding and prevent bruising (which explains my multiple, long-lasting bruises).
- This type of MDS means I have a higher risk of developing Acute Myeloid Leukaemia in the near future, and there is nothing anyone can do to stop it, we can only treat it if and when it comes.
- I will need a bone marrow transplant (more recently referred to as stem cell transplants), and strong rounds of chemotherapy to destroy and then build up a new, improved immune system.
- After all this treatment, it is highly unlikely I will be able to have children naturally, therefore I will be referred to a fertility clinic in Oxford who are prepared to do the necessary treatment to collect and freeze my eggs before it is too late.
- It is unadvisable that I should go back to university for my final year, as I will need the whole year to prepare for and recover from such extensive treatment.
My life has changed a lot since this diagnosis on the 30th June, but my mental state has evolved more, and still is. That is for a completely different post, but I have learnt the following things over the last couple of months:
- Not everything can be cured by some strong iron tablets and bed rest.
- Everyone reacts differently to bad/surprising news.
- Blood tests aren’t actually scary at all, anymore.
- Getting diagnosed hasn’t stopped me liking pretty, pastel-coloured things though.