My dear friends and relatives (maybe also some internet strangers),
It is with great sadness that I write this opening letter to you as my first post on this blog. I’ve been meaning to get going with it for over a week now but unfortunately I’ve spent a lot of time processing what has happened to me and getting furious at the inconsistency of the working/not working wifi in my hospital ward.
That’s right, you heard it, hospital ward. And so begins the story I must have told a thousand times since Friday 8th August. Which will now be known as perhaps one of the most devastating days in my short and ordinary life.
Here goes, in April I found a lump, now I shan’t say where for fear of blazing red cheeks and all that jazz, but yes, I found a lump. Now my first thought was, ‘oh fuck, I’ve got cancer’. I told my mum, and she assured me that it was probably just a sore or something and it would go away, which sure enough it did. And then it returned, with a vengeance. This time there were more of them and they were extremely uncomfortable. So I grinned and bore it cause that’s what I usually do (never one to complain – unlike my brother and sister who will both agree with this).
This went on for some time with the lumps appearing every month when I was on my period (cyclic as they say) and I began to think nothing of them, just another symptom of being a woman I guess. This was my way of thinking until early July when it got really bad, so bad I couldn’t walk very far without crying and feeling like I was in constant pain.
Again I talked to my mum and she advised me to book an appointment with my local GP which I did.
Now I never ever go to the doctor because I just don’t get ill that much (seems weird when I say that now) and so I trundled along to Kew Medical Practice and waited patiently for my turn with the doctor.
After what seemed like a lifetime of waiting (or it could have just been the utter boredom that came with reading Home and Country to pass the time) I was called upstairs. I opened the door and to my surprise found a male doctor sitting at the desk as opposed to the female doctor I thought I would be seeing. Immediately my cheeks flushed red and I prepared myself for the most awkward moment I had ever experienced in my life. I steadied myself and thought, you know what, you want this sorted so get it done, be brave, and brave I was (brave I’ve never stopped being since).
Once I’d told the lovely YOUNG MALE doctor what the issue was he smiled and said, “Now you can say no if you wish, but the only way I can diagnose you is to examine you.” I knew what that meant. It would mean a young man, a stranger, taking a look at my ‘lady parts’ even though we’d only just met. “Do you not want to take me to dinner first, at least?” I thought. Of course I would never say such a thing to a DOCTOR, a person of SCIENCE. I begrudgingly held my head and nodded. Be brave, I told myself.
He called a nurse in to talk to me whilst he looked below the equator. She asked me all the standard small talk appropriate for when someone’s checking out your privates. “So where’re you going on holiday?” “Malta, with a few friends, should be nice.” Needless to say, this most riveting convo did not do its job in distracting me from what was really happening in that room.
After a few moments, I was asked to pop my pants back on and once again take a seat next to the doctor’s desk where he informed me that I had a bacterial infection which could easily be cleared up with a week’s course of antibiotics which sure enough it did and I was back to making the long treks from bedroom to the fridge without any discomfort at all.
I finished that course of medication on a Thursday and then I went down to Chalford with my mum and my friend, Georgie for a long weekend. We were sitting around eating our Sunday lunch when I noticed a lump behind my ear. Oh great, I thought, another lump for me to deal with. Sure enough I went to the only person I knew would allay my fears, my mother. “Oh it’s just a bite or something.” I’d been sleeping on the floor in my room, partly due to the fact that the house is low on furniture at the moment, mostly due to the fact that I find it difficult to share breathing space with another human being (well I’ve got my own room and bed now at least), so Mum thought a spider or insect might have bitten me during the night.
Over the next couple of days more and more lumps kept appearing below my jaw line and all the way around my neck. I decided to waste no time in hopping off to the doctor once again (now thinking of it as somewhat like a second home, or a weird community hang out joint where I could observe the residents of Kew Gardens).
This time I met with a female doctor who sent me to Queen Mary’s Hospital in Roehampton to get some blood tests to check to see if I had Glandular Fever. My aunty very kindly drove me to the hospital and sat with me as these two joyous women extracted a lovely red vial from my vein, laughingly muttering “they call us the vampires around here!” Was I meant to find that reassuring?!
Within 30 seconds it was over and I was already moving on with my life. And then, the next day I boarded a plane to my beloved Malta with a group of terribly crazy friends expecting a fantastic week of sun and booze. Which is what I got and a great time it was. I decided to wait until I got home to find out the blood tests results as there would be nothing I could do being so far from home.
Friday 1st August. I arrive back in London and back at home at around 2am. Immediately rushing to my parents room to let them know I was home, I began to weep in front of my mum as I explained how the lumps had gotten worse and now I couldn’t hear properly in one of my ears. I was scared and I could sense she was too (Dad would’ve been if he wasn’t too busy snoring very loudly next to her).
She sent me to bed to get some sleep, resolving to go visit the Doctor in the morning. So the next morning came and there was no improvement. I had a sore throat to add to my growing list of symptoms as well. Dad told me over breakfast that he thought it was Mumps. For a moment I was wondering how since I’d had my vaccination, and then I was relieved, believing to have been diagnosed at last. Yet not for long.
Back with the male doctor and he gave me another course of antibiotics which lasted a week and made no change, so when I went for my follow-up appointment I was sure to bring my mum to ask the real questions and get straight to the point (something I seemed to be unable to do).
We were sat in his office for 30 minutes, most of the time with him ‘ummming’ and ‘ahhing’, evidently not quite sure what to do about the situation. This was Friday 8th August. That dreaded day. But I didn’t know it at the time.
He took some more blood samples and sent me on my way. I got on with my day. I’d had the worse cold of my life that week which is finally starting to lift at the moment of me writing this post (still a little bit deaf unfortunately – TV is on an unnaturally high volume).
Around 6.30pm, I drove over to my aunts’ house for dinner, wearing a new dress I’d just bought in Richmond and feeling pretty gosh darn worth it to be honest. Yet I was barely there for 10 minutes when I got a call from my Dad that made my heart sink. “Listen Floss, we’ve just had a call from this guy at Kingston Hospital. Apparently there’s something abnormal in your blood test results and they want you to come in to A&E.” “Tonight?” “Yep, right now.”
So I said my goodbyes and drove home and then immediately drove to the hospital. We spent a long time in A&E. We arrived at 7.15pm but didn’t see the doctor until about 11.30pm. What a night?! Nice to be around so many people with cuts, broken limbs and infections. At least the vending machine gave us two bottles of water when we only paid for one.
The worst thing I heard that night wasn’t actually the diagnosis but the following words, “We want you to stay in overnight.” I didn’t expect that at all. And then he said, “And in the morning the haematologist will perform a bone marrow extraction on you.” That’s when I knew something was not right here. They don’t just DO those kind of things. Bone marrow is some serious shit.
The haematologist came in to see me to say hello and introduce himself before he went home for the night. I just wanted an answer really so I asked him plainly, “What do you think this is?” (gesturing to my lumpy and swollen neck). He breathed a sigh before plainly replying, “50/50 it’s cancer.”
When you hear the word cancer you hear death. You think of all the prospects of your future shrivel into non-existence. And you cry. And cry I did. This lovely man, evidently not so great with others’ emotions, patted my back and attempted to comfort me with words of “I didn’t come in here to make you cry.” Well what do you expect someone to do when you tell them they’ve probably got cancer?! Leap in the air and yell, ‘yippee! My life just got so much better!’ No, of course they’re going to be upset. And I was. And I was angry. And I was worried about my parents who were crying just as much as I was.
And I remember saying. “I’m not ready to die yet. I haven’t even lived yet.” And then later on, “And I haven’t had sex yet! It’s not fair.”
But I got over that stage. And now it’s more like, “When I’m done with this cancer I’m going to kick the world in the arse and be the best thing anyone’s ever seen. I mean who can reject me, I’ll have beaten cancer. Everything else is easy.”
So yes, that 50/50 turned into a diagnosis of AML Leukaemia (which I refuse to look up stats for, so please don’t tell me these, it does nothing for my spirit).
I’ve got my own room at Kingston with my mum sleeping over for now, until I’m properly settled. The wifi is…alright and the company is excellent. I started chemotherapy this Monday which lasts for 10 days this cycle and then 18 days recovery because my immune system drops to zero and I can’t leave the room cause I might get infected. My visitors have to wear gloves and aprons and maybe masks later on.
I’ll either have 3 or 4 rounds of chemo and then possibly a bone marrow transplant (which is not as scary as it sounds actually). So I’m taking it all in my stride and hoping for the best. And I’m going to be cured because the other option just isn’t an option for me.
Cancer isn’t a death sentence anymore and it certainly isn’t one for me. So don’t fear my friends and people of the general world. At least I’ll be able to find out exactly what my head looks like (once I’m lovely and bald) and I’m more popular than I’ve ever been (many texts a day is the benefit of having a serious disease).
I’ve now got a lovely wall of cards and it just keeps growing.
I do appreciate your thoughts and letters (please send me letters, post is like a gift from heaven). The idea of this blog is to document this wondrous, wild and weird experience through a selfie a day. I’m on back log with the photos so will start posting them tomorrow. Mum says I’ve been looking curiously like Henry 8th in the past couple of days which is always nice.
Love to you all. I’ll keep you posted.
My Dad told me to look at it just like a forced gap year so when someone asks me what I did in my ‘gap yah’ I can laugh and say ‘Well I battled with Leukaemia. And you know what? I fucking won!’