I’m negative! (In a positive way)

I started this post almost 2 weeks ago, and if you ask me why I never completed it you would get a somewhat puzzled face, kinda like that emoticon you tend to use when someone asks you something you think is completely ridiculous. But its not ridiculous at all. I’ve spent most of my days at home wallowing away; allowing myself to be sucked into the quicksand that are my thoughts. Sometimes I think when I was in Phase 2 and had to come in for chemo every day (I HAAAAATED IT) it was actually a good thing?? Getting out of the house, albeit not something to look forward to, it was something.

Now I’m back in to the Marsden for the second time during Phase 3 I have decided to complete this!!

So last time I had to be an inpatient for roughly four days – – if you ask me what was more agonising between that and the actual treatment I’d have to think twice. Finally the methotrexate levels fell, and I was released from the prison (I joke) in the afternoon. Since then, I’ve had to deal with the painful side effects of mucositis – sores and ulcers from my mouth to my stomach; I agree, not very appetising. Well atleast it kept me shut up for a little while and back onto a baby’s soft diet; smash all the way!

I also got some excellent news –  my very important MRD results came back that I had been waiting for. I’ve said it before, I’ve always been more of a worrier, a pessimist, a thinker. The busier I was – and this is why university was a Godsend for me, the less I had time to think (Although most of my days were spent either out shopping, watching films, or sitting in the living room with all of my housemates playing games/eating/laughing or a combination of all three). At times just thinking about these results had clouded my judgement; I was scared about the future. I haven’t even got rid of the leukaemia yet and I was worried about what I would do when it came back! What an absolute numpty.  But the results were NEGATIVE. Alhamdulilah a thousand times. Hearing those words especially when I didn’t expect to hear back yet was the most wonderful feeling. I physically felt like a load had been lifted off of me, and the walk back to the car felt that much lighter. Guess this calls for an MRD party?? ? No? Just me then.

Whilst out of hospital, although I felt down, my appetite having taken a walk, and psychologically unable to control my feelings or emotions there were a few evenings I completely forgot everything; maybe for a minute, or two, maybe longer. Once when my friends came to visit I felt like I was back in Southampton, in our living room, coming out with the strangest, funniest things, wondering if someone were to listen to our conversations what would they really think?? For the first time, in quite some time, I felt like myself. The energy that I felt was slowly being torn from me, returned, even if just for a short while. I heard myself laugh (yes that annoying, loud, only dogs can hear kinda laugh). But I felt like part of me was back, I wasn’t this miserable emotionally unstable person who just wanted to dig a hole and jump into it. Evenings spent watching films with my dad, my sister – laughing for the most part and I realised, it’s true. Laughter is the best medicine.

I’ve been waiting for The Hobbit (The final one!) to come out on DVD (4 days and counting!) so its only fitting that my parting quote is from my favourite characters.

Gandalf: Well, all good stories deserve embellishment. You’ll have a tale or two to tell of your own when you come back.

Bilbo Baggins: …Can you promise that I will come back?

Gandalf: No. And if you do… you will not be the same.

In this scene Bilbo is off to begin his ‘unexpected journey’ and is scared to leave all his comforts behind, but he goes ahead, knowing full well that he might not return. The key is to never forget that the journey would not be a worthwhile one if there weren’t any bumps in the road; something to learn, about yourself, about others, about this world. Out of every negative situation there will be a positive, no matter how big or small it is it will help you overcome the darkness that you might feel engulfed by.  It doesn’t matter whether we choose the situation or not, we were destined for it and we should ultimately be thankful that we have encountered these times – it makes you appreciate the good things a hell of a lot more and you have the invaluable chance to see the world through different eyes. These times will shape you, change you, and turn you into the best version there is of you.

Can I call this an entire ordeal an adventure like I’ve seen in the movies? I guess I’ll have to wait and see what version of me comes out of the other side.

Love. x

Fight 3, Round 1

Morning/Evening! (I have no idea when this post will be ready to publish yet?!)

I’m back being treated as royalty in the Marsden since yesterday! (My first and probably last attempt at a play on words there) I have to stay in hospital for phase 3 chemo as I am having high dose methotrexate, so the doctors need to keep an eye on me. So here I am, sitting in this room with this yellow liquid seeping into my arm for 24 hours.. well to be exact I have 14 hours and 4 minutes left i.e. I’ll be woken some time at 3am to stop it. I’ll try not to swear at the nurse – which reminds me of the time that I had my very first bone marrow biopsy – high on gas and air, what did I do? Swear at the nurse (in punjabi) and ask her why she was using my dad’s drill in my back. In hindsight, my sister Ghazala should have filmed the whole ordeal purely for entertainment.

A piece of my bone marrow.. so much pain for something NOT so beautiful.

A piece of my bone marrow.. so much pain for something NOT so beautiful.

Additionally, I have to have continuous fluids through an IV drip for the next few days which started yesterday. Unfortunately it’s resulted in me having fat sausage fingers today due to all the fluid retention, reminds me of the part in the film Fantastic Four (None of you will probably get this) where ‘The Thing’ tries to use a payphone box but because of his abnormally large hands he presses all the buttons at the same time.. I bet this time tomorrow that’ll be me.

My lovely chemo.. looks pretty radioactive to me?

My lovely chemo.. looks pretty radioactive to me?

I realised after writing my first two posts that I hadn’t even introduced myself properly. As you know I am a 25 year old student – with two older sisters, an older brother, a wonderful father, and a beautiful mother who is no longer with us. And this wonderful supportive family is made more amazing by loads of little monkeys; 3 nieces 2 nephews and a baby sister. If I began talking about their antics I would be here all day so I’ll save that for another post with lots more photos.. but I can say hand on heart that whilst being at home they have really brightened up my days. Although the house feels like a zoo at times I don’t think I would have it any other way! I should be so grateful to God for the family and friends He gave me, everything was planned so perfectly, that even though I have to go through this ordeal I have the best support possible; no matter how grateful I am I don’t think it will be enough.

The most beautiful woman in this world - my mother. May Allah grant her the highest place in Jannah.

The most beautiful woman in this world – my mother. May Allah grant her the highest place in Jannah.

The most loving father and brother in this world.

The most loving father and brother I could have asked for.

My first night at the Marsden, and my brother was all kitted up in his gear

My first night at the Marsden, and my brother was all kitted up in his gear already

Both my older sisters... and I will prepare to be killed for uploading such an old photo.

Both my beautiful older sisters… and I will prepare to be killed for uploading such an old photo.

Taking myself back to a few weeks after I was diagnosed I think I already had decided to chop my locks off. My hair had started to fall within the first couple of weeks so I asked my sister to bring some scissors and cut my hair to shoulder length whilst I was in the hospital. But every morning I woke, every time I brushed my hair, the sight around me of my hair that I’d treasured and looked after for so long was just lying there lifeless. A few days after coming home, my brother offered to shave my hair off ‘on the condition that I wouldn’t get overly upset about it’ and I was proud to say I didn’t. Looking back to how much I loved my hair I really wasn’t that bothered about the undeniable fact that I would lose it and hey, now I’m no longer curious as to what my scalp looks like 😀

Probably should start to call myself baldilocks now.

My long locks before they were chopped.. I look too happy here.

My long locks going back to November 2014 before they were chopped.. I look too happy here.

BUT on a happier note I received a beautiful present from my friends last week – a custom made wig from a place that I had been looking at for quite a long time! It was an absolutely beautiful surprise and so thoughtful that I can now start putting aside my hats and scarves and go back to dressing myself back up again.

Christmas day 2014 - one of the first days I got to go home so I decided to make an effort and get a little dressed up! (Won't deny I liked the short hair)

Christmas day 2014 – one of the first days I got to go home so I decided to make an effort and get a little dressed up! (Won’t deny I liked the short hair!)

Now that I sit here I can’t avoid reality like I could most times at home, I can’t believe how quickly time has flown, alhamdulilah. Almost 3 months in and I’m back in the boxing ring for the third cycle of chemo, I never imagined I would be sitting here today pouring out my thoughts onto a page, neither that the highs and lows of the last three months have exposed me to emotions I never knew I even had. However much I want to run away to my home now I know that there’s no better place I could be right now, the nursing staff are amazing, and I will never forget them (especially not the ones that caused me pain.. I joke) Luckily after a few weeks of being poked and prodded with needles for blood tests and all sorts, I had a PICC line inserted (BEST THING EVER!) I don’t even have to open my eyes anymore at the crack of dawn when they come to take blood to check how I’m doing. Essentially, its a line inserted  from my upper arm all the way into the entrance of my heart, on the outside are two tubes that can now be used to give me a cocktail of drugs and also take blood from. I’ve also luckily ended up with a wonderful consultant – Dr Taussig and his team, including my lovely CNS Mucha that oversee all my treatment.

So after this dose of chemo I’ll be in for a few days, and then back home for a week to 10 days (Yay!) and then back in for one more repeat of this chemo. So all in all I’m praying praying praying these next 4 weeks as my consultant said should be easier than the ones I’ve had before.

Can I finally see a light at the end of the tunnel? Maybe..

My brother reintroduced me to an album we both loved some years ago, I’m not a huge fan of music, but I prefer those songs that have some actual meaning to them. So instead of a quote today I give you a song we listened to alot. I love it; but then I’m just a big ball of cheese.

Love x

Broken Mind

I am a thinker. I have always been a thinker. My mind tends to work overtime, even when I’m surrounded by people I can hear the gentle hum of the cogs in my mind working and this by some distance is probably my greatest enemy; my own mind. I don’t think things have ever been different, but Leukaemia has become the accelerator between the thoughts my mind produce to the snowball effect that follows.

Being overly sensitive to the smallest action, words, mere expressions enabled me to not only distance myself from people, but also get an idea of what people were like before I had the chance to properly get to know them.  Although I wish I had Legolas’ elf eye to see into the future, I’m sure what would be best for me would be the exact opposite; ignorance.

I am not ashamed at all to admit that over the past two months I’ve lost faith a number of times, I’ve questioned my life, and I’ve probably fallen as low and deep into a pit of misery and loneliness that I ever could have imagined. I’ve seen how my illness has affected those around me, how they’ve responded, but also how it has affected me seeing this. I envy those that take everything in their stride (Seriously, you are not human.) who can let go, move on, never think twice about an encounter.

How you train your mind (not your dragon) will determine how you react in any given situation – no matter how much you avoid reality the second you come back down to earth it hits you; so hard that you can’t breathe sometimes. On the 19th of January I found out I was in remission (Yay..?) but I just could not be happy. Seeing my sister and dad’s face light up, the gentle pat on the back from him, the smile that was on his face when he would tell our family the good news. I just couldn’t be happy, I could have drowned myself in a pool of negativity at that point. But how could I be happy when I hadn’t even accepted that I was ill in the first place? – I only had the courage to say the C word last week, and that was in anger. It’s as if I’ve put a barrier between that and Leukaemia, as if they’re not even remotely related.

Having insight into your own mind is the first place to start when it comes to changing yourself, you may be fragile, scared as to what people might think about the storm of thoughts going through your mind “What will happen to me?” “What if i don’t make it through?” “I don’t want to do this anymore”; But for those that love you, understanding you is a given extra, and if I should learn anything it is to never fear ridicule from the people that will be there for you. When you come to this stage in life, what people think, say, how they react is the last thing that should be given any importance. You can’t expect people to truly understand how you feel – regardless, that is too big an ask.

No matter how broken a mind is, it CAN be fixed. It can learn to be patient, be calm, and break out of the prison it feels stuck in. Nothing is impossible no matter how it might seem. And I hope, that I find the strength both physically and mentally to break free from this mindset, to learn to let go, to move on, to appreciate more the family and the friends that have stood by me, forgiven me, listened to me crying (booing uncontrollably) in the middle of the night, not become frustrated by the repetitive sentences that roll off my tongue, and not become tired of telling me the same thing over and over again – it will all be okay.

Time to get the tools out and do a bit of DIY on this mindless mind of mine..

..I remember the numerous number of times I have not had control over my mind (these are the more funny ones.. well, they weren’t at the time) but going back to when I was first admitted to the Marsden, my sleeping tablets – Zopiclone, made me hallucinate. And who did I see? A character from my favourite film? Nope. A member of my family? Naa. It was the Hulk. He came and visited me right in the middle of the bay; of course the other elderly patients there weren’t aware of our visitor. But he started digging a big hole in the middle of the room – telling me how he felt betrayed by some very big people. (I never understood what he said, and its probably no wonder why he didn’t visit me again) No better are the incomprehensible messages I send a short time after I’ve taken my sleeping tablets – my brother and I call it being ‘Zopi’. Maybe I should write a post after I’ve taken one?? Or not.. Things started to get a little out of hand when I commented on my brother’s facebook status about a veggie burger. Needless to say even he couldn’t understand what I wrote.

Before I finish, I probably should have said from the offset that when I created this blog I did it mainly with the intention that it would help me, help me get my thoughts out and help people understand what this might feel like. This post was NOT intended to be depressing (The essay says otherwise) but if anything I write can help anyone then that’s an added bonus.

Lastly, an inspirational quote from an equally inspirational author.

“There’s something amazing about this life. The very same worldly attribute that causes us pain is also what gives us relief: Nothing here lasts. What does that mean? It means that the breathtakingly beautiful rose in my vase will wither tomorrow. It means that my youth will neglect me. But it also means that the sadness I feel today will change tomorrow. My pain will die. My laughter won’t last forever but neither will my tears. We say this life isn’t perfect. And it isn’t. It isn’t perfectly good. But, it also isn’t perfectly bad, either.”
Yasmin Mogahed

Love x

Next post: happy, a little humorous and with lots of photos!

Update: Bone marrow biopsy number three over yesterday. I was meant to be ‘sedated’.. but all I will say is they’ll probably need a tranquilliser next time to knock me out.

“Newman’s first law: It is useless to put on your brakes when you’re upside down.”

My name is Sara – 25, final year medical student. Diagnosed with Acute Lymphoblastic Leukaemia (ALL) on the 9th of December 2014. Now 77 days later, having undergone two cycles of chemotherapy, two bone marrow biopsies, five lumbar punctures and a whole host of chemicals being pumped into my body, can I say I feel any better? No. But did I even expect myself to? Again, no.

For those who aren’t aware Leukaemia is basically (I use this word too much for my own good) cancer of the white blood cells. The cells we all rely on to fight off the baddies in our body; but somehow, for some reason unknown to me mine decided to give up and let non-functioning immature cells take over. These immature cells are essentially having a party in my bone marrow, and not letting any of the important cells be produced – red blood cells, platelets, and white blood cells. Everything I lacked when I went into hospital on the 8th of December. My disease hadn’t shown itself to me, and never in a million years would I have imagined I would be dealing with something like this. Feeling extra tired for a few weeks was probably what stood out the most, it wasn’t till the day before I went to the GP that I came up with a rash, a sore throat and a fever. Monday morning off to the GP I went, not sure what to expect, bloods were taken and I was ordered to call in the next day. 8pm that evening I received a phonecall – before I even picked up the phone my heart had already sank; I’m not saying I’m a clairvoyant but I just knew there was something wrong with me, so I panicked. Called over my sister and heard the Dr say I needed to come into hospital as soon as possible, my platelets were severely low at only 7 and my neutrophils (white blood cells) were at 0.25.

The night was spent waiting, sitting with my best friend listening to the lady in the corner of my ward talking to herself. The phone would ring for the nurses and this poor little lady would pretend to pick up a phone and have a conversation. (I won’t deny we had a bit of a giggle at her expense.. Yeah we’re going to hell.) After a chat with the doctor I was attached to a bag of platelets and told the haematologist would be there in the morning. So as I slipped in and out of sleep I was going through a whole host of diagnoses in my head – Leukaemia was never an option.

Morning came, and went, by that time the fact that I was a medical student had already gotten around the ward staff – won’t deny it did make me feel like the staff were being a little more careful around me – is that really a bad thing? Around 5.45pm, my sister and I were taken into the family room, laughing and joking talking about the patients on the ward (Could I make myself look worse here? Probably not.) You would think being a medical student, and well versed with ‘breaking bad news’ and the etiquette behind it that I would question why the Dr’s weren’t coming to see me at my bed. I sat as the doctor introduced himself – Gleb Ivanov, Consultant Haematologist, He started to speak and within a minute we’d reached the “I’m afraid we have some bad news” moment. That’s pretty much where I switched off – I could hear the panic in my sisters voice, the questions, I could even hear myself speak but I just felt numb. “I’ve looked at your blood today and I sent it off for analysis and I’m afraid I have to tell you, you have Acute Lymphoblastic Leukaemia” “You’ll be transferred to the Royal Marsden tomorrow to begin treatment” “I’m afraid university will have to be put on hold for now”

I still feel numb thinking about it now. The nurses looked at me with sympathy, some kind words, but also words of encouragement that I will never forget. The Dr left and I listened as my sister called my brother and eldest sister. I wanted my Dad, miles away on holiday, I wanted my mum, so far away in a place she could never come back from. I think saying I was in shock was an understatement, and I don’t think I realised the weight of what was happening until I was walking down the corridor, hand in hand with my brother, crying continuously whilst he told me everything would be okay.

No matter what I never want to forget that day because my eyes were opened to the real gravity of my situation, that no matter what you think or what plans you have Allah’s plans are bigger, and you can never fight your fate. What was a burden on my mind that moment was not that I had been diagnosed with the fearsome ‘C’ word, but how would I tell my dad? How could he go through this all over again after doing it with my mum? How could I manage this without her? But I am so grateful to Allah that I had sisters, a brother, friends that were there at that very moment and the time that passed after to get me through the shock.

I’ve never understood why this happened, what caused it, the doctors reply was ‘it’s just one of those things’, and no matter how hard I fight it that’s it. That’s all it is. Sometimes you don’t have a choice in life and you just have to get on with it, and I wish I could say I have changed my life completely around since then – I can’t, but I don’t know what the future holds yet. I am just one big question mark.

So the moral of the story so far is, no doubt we will all be placed in situations where our lives are turned upside down, but stopping is not the answer. If I had a pound (or 50) for every time I have given up in the last 11 weeks I would be a very rich woman right now; and natwest would probably not be breathing down my neck as my overdraft decided to disappear during my first 2 weeks in hospital. Courage, bravery and strength is what gets any of us through difficult times; and I am the last person I would imagine has shown that, but putting the brakes on and making life come to a standstill is not the answer. What you can and can’t achieve is all in the mind, and coming from a pessimist like me that’s a big statement to make.

I wish I was this wise in real life.

Lastly, as I get back to finding ways to move myself to the Shire, I’ll finish on this note.

“I wish none of this had happened.” Frodo

“So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.” Gandalf

Love x

Hello world!

First of all I would like to start off by apologising in advance for the incessant rambling that will follow in some of my posts and also the numerous references that will be made to the Lord of the Rings. That coupled with my tendency to go off on a tangent might seem a little unbearable, but this is just another blog, about another life, which happens to be mine. This blog has been a long time coming so I hope there is enough for me to say to make you laugh, cry (maybe a tear or two, or a bucketful), put you to sleep even? But simply, to have a glimpse albeit just for a moment of my life.