Dear all,
On Sunday 20/08/2017, Naaila sadly passed away after a 5 year battle with cancer.
Throughout the last 5 years, people have regularly told Naaila and us (her family) about how motivated and inspired they were through reading her blogs and poems, and we decided that it would best to let her fans know of her passing, albeit two years after her last post.
In her memory, we decided to start a charity project so that she continues to receive awards. The main aim of the project is to build a Mosque in Zanzibar and also a community project (which is yet to be decided)
Please read more in detail and donate generously on the link below:
https://mydonate.bt.com/fundraisers/raihaanhaq1
I also wanted to 'complete' the blogs on her behalf. Naaila stopped writing in May 2015, and even in the comments section, I could see people asking how she was doing and why they hadn't heard from her in a long time. My aim was to write a few short blogs detailing the last two years from my point of view as her little brother, but wasn't sure how many people actually still read these posts 2 years later.
Please let me know in the comments if this would be a good idea.
Thank you for all of your support towards Naaila over the last few years.
Raihaan Haq (younger brother)
Tuesday, 29 August 2017
Sunday, 10 May 2015
The Dance with Death.
...and they were at it again,
their little dance,
he leading the way,
she begging for a chance.
Death: One step, two step,
he knew the way,
she was his this time,
slowly slipping away.
But her Lord, most Merciful,
had for her other plans,
He embraced her softly,
and held onto her hands.
"Not today, O servant of
mine,
I still want more for you.
He won't win this dance,
go back and do your due."
And so he retreated,
His face dark and grim,
and so the dance ended,
and once again, was she
saved by Him.
Saturday, 18 April 2015
The Silent Prayer.
...and mostly she cried
for her mother,
her small, gentle mother,
who prayed fervently
into the night.
Her kind, strong mother,
who wept silently
till her eyes ran dry.
Her quiet, mild, mother,
who smiled a smile,
which no longer
reached her eye.
For more writings and poems, follow my instagram @haqtology
:)
for her mother,
her small, gentle mother,
who prayed fervently
into the night.
Her kind, strong mother,
who wept silently
till her eyes ran dry.
Her quiet, mild, mother,
who smiled a smile,
which no longer
reached her eye.
For more writings and poems, follow my instagram @haqtology
:)
Wednesday, 15 April 2015
The Wait for Eternity.
...and he smiled sadly at her,
his beautiful little girl,
his pride, his life,
she was his whole world.
'How did this happen?'
he questioned sadly,
'She is my baby,'
he pleaded silently.
And she saw the hurt,
and wiped his tears,
by his feet she tenderly sat,
'Even when I'm gone,
I'll always be your little girl.
And when we're reunited,
We'll feel no pain at all.'
For more writings and poems, follow my instagram @haqtology
:)
his beautiful little girl,
his pride, his life,
she was his whole world.
'How did this happen?'
he questioned sadly,
'She is my baby,'
he pleaded silently.
And she saw the hurt,
and wiped his tears,
by his feet she tenderly sat,
'Even when I'm gone,
I'll always be your little girl.
And when we're reunited,
We'll feel no pain at all.'
For more writings and poems, follow my instagram @haqtology
:)
Sunday, 9 November 2014
The Reality.
“The pain is killing me!” I complained, holding onto my leg.
“Go take some pain killers.” Faisal replied.
“No, I mean literally
killing me. There is a tumour in my pelvis, and it is killing me.”
My hilarious joke fell on deaf ears, as Faisal gave me one
of his ‘shouldn’t you know better?’ looks (which I later learnt was actually
his ‘what are you going on about’ looks, as he hadn’t understood the joke).
It wasn’t the first time I had cracked a rather
inappropriate joke about my illness, although in all fairness, a lot of people
act like I’m completely okay, not least of all the team at the Teenage and
Young Adults ward at the Macmillan centre at UCLH. Now, don’t get me wrong,
they are a lovely bunch; the doctors, nurses and the volunteers who are present
almost every day, doing activities with the patients and their families, but sometimes
it comes across like these activities are part of a plan to distract the
patients from what really is going on. Every couple of weeks there will be a
new project to work on, and everyone will be encouraged to join in and
contribute.
So one day, whilst doing one of these activities (poem
writing, which I was successfully pulled into doing, although rather
disappointingly, I lost the poems after writing them), one of the other
patients made his way over to our table. I had seen him once before, but had
not gotten round to sharing names or stories. Clearly he was a very popular
figure amongst the volunteers, as they all immediately got up and started
chatting with him, and asking about other patients. I wasn’t eavesdropping – I
promise I wasn’t – but when one of the volunteers asked him about a certain
patient, he went quiet, and whispered ‘She passed away.’ The group went silent,
as if paying their respects.
It was then, after a long time, that I was reminded of how
serious my situation was. No, this wasn’t just some illness I was living with,
and it definitely wasn’t some illness I should forget about. This was
life-threatening. And no matter how much I try to distract myself, the reality
of the situation is this – I am terminally ill, and there is nothing that can
be done about it.
Lesson of the Day:
- It is easy to lose track of reality, but it will catch up
with you, and when it does, just make sure you’ve prepared yourself.
Sunday, 2 November 2014
The Almost-Fatal Walk.
Every now and then, I’ll come across an article stressing
the importance of exercise for patients with cancer. Apparently, the more
oxygen in the body, the more the cancer cells will starve, preventing growth
and in some cases, even contributing to regression. So I will instantly throw
everything aside, and make big plans of taking long, romantic walks with
Faisal, or more truthfully, anyone who is willing to come with me (the
romanticism still stands, for those of you keen to come with me – I don’t
discriminate). However, not everyone is as free as I am, so I often find that
these plans remain plans, and the only type of walking I get done through the
day, ends up being the walking around the flat (mostly to and from the kitchen,
actually).
So when Faisal was free one day, we enthusiastically made
plans to take a long walk on one of the many scenic trails in Hereford, a city
not far from Northampton. We started off very eager, even going as far as
buying two new jackets just for the walk (in case it rained, of course, nothing to do with looking
for an excuse to shop). We wore our most comfortable trainers in preparation of
miles of walking, stocked up on fluids, and once we had expertly understood the
walking trail map, we set out.
The walk started off well enough, with me stopping now and
again to take photographs, and Faisal stopping to taste dangerously poisonous
looking berries and fruits, like he always insists
on doing whenever we go for walks. But soon enough, we realised we were
hopelessly lost. There were no longer any footpaths or any direction boards,
and within minutes, we found ourselves in the middle of a very, very big corn field. The area was
clearly not meant for the general public, but Faisal was confident we were
going in the right direction, and insisted we walk through the field to reach the other end. And so we did. Big mistake.
We ended up on the other end in
a place which clearly looked like it was part of a horror movie. There were
abandoned sheds, frightening scarecrows and dead rats and mice on every turn. I
was convinced I was going to get murdered, and my thoughts immediately went to
my laptop history, which would betray my addiction of the ridiculous ‘Weird or
What?’ series I had been hooked on recently. No, I thought. NO! The world must
never find out!
After reaching a clear dead end, which saw us come face to face with a huge pad-locked steel gate, covered in rust and terrifying looking insects, we finally turned around and made
our way back to safety, convinced there was a creepy old man eyeing us from the
shed, sharpening his tools and inventing new and torturous ways to murder us if we were to stay there any longer...
Lesson of the Day:
- When you decide to go on a hike, tag along with an experienced old couple (mostly white, because let's face it, who's ever seen an old Indian aunty on a hike). They'll usually have all their gear, including walking poles and heavy duty boots, and are usually more than happy to let you follow them. If they're not, well, there's nothing stopping you from stalking them. It may seem wrong to begin with, but the deeper and deeper you walk on a trail, the more right it will feel.
Lesson of the Day:
- When you decide to go on a hike, tag along with an experienced old couple (mostly white, because let's face it, who's ever seen an old Indian aunty on a hike). They'll usually have all their gear, including walking poles and heavy duty boots, and are usually more than happy to let you follow them. If they're not, well, there's nothing stopping you from stalking them. It may seem wrong to begin with, but the deeper and deeper you walk on a trail, the more right it will feel.
Sunday, 19 October 2014
The Consultation.
The consultation began rather confusingly. The consultant,
clearly a very busy man with no time for small talk or getting acquainted,
jumped straight into the diagnosis. ‘Alveolar Soft Part Sarcoma,’ he informed
us, to which Faisal straight away asked, ‘So it’s not an Ewing’s sarcoma?’ Ewing's Sarcoma, for those who are not aware, is a much more aggressive and more common type of sarcoma.
‘No,’ he said, and we all breathed a sigh of relief. ‘It’s a
very rare type of cancer...’ he continued, ‘...so rare in fact, that we don’t
really have much information on it. What we do know, though, is that it is
immune to chemotherapy and radiotherapy.’
‘Immune to
chemotherapy?’ I
didn’t completely understand. This was cancer we were talking about, wasn’t it?
If chemotherapy was ineffective, what was he proposing we do?
‘What does this mean?’ Dad asked.
‘It means we don’t really have any options...’ the
consultant trailed off.
‘Is it operable?’ Faisal asked.
‘I’m afraid it’s a bit more complicated than simply removing
it. Because of the location and size of the tumour, we’d have to carry out a
full hindquarter amputation.’
‘Woaw’ I thought, ‘that sounds painful.’ A hindquarter
amputation would mean the removal of the left side of my pelvis, and my whole
left leg, he explained. I gulped, trying not to cry. ‘Yeah, okay, maybe painful is a little bit of an understatement.'
‘...even then, it won’t be as effective as we would like.
The cancer has spread to the lungs, and there are innumerable lung metastases
which we can do nothing about.’
‘Innumerable lung
mets?!’ I thought panicking, looking around the room. This was the first
time I was hearing of it, although judging by Faisal’s reaction, he clearly knew from beforehand.
I fell back into my seat, silent for the remainder of the
consultation. Dad and Faisal asked a lot of questions, and although the lack of
treatment options was bleak, the consultant informed us this was a very slow
growing cancer, and patients had lived for decades with it. ‘Finally, some good news.’
And so we left the consultant’s room in relatively high spirits.
Despite being told of the lack of treatment options, I had dodged a bullet. A major bullet. The cancer I had was not an aggressive one - there
was that silver lining I had heard an awful lot about. We were all relieved. Dad
was even chatty, something he had not been since hearing of my diagnosis. I had
hardly heard two sentences from him since telling him, his quietness and
withdrawn nature just as painful as the hour long phone calls from mum, during
which she did nothing but cry.
But we had hope now. Little, very little, but still, it was
there. More than anything, I had not been given a specific time period in which
I should expect to die, and to me, that was enough for now...
Lessons of the Day:
-One of my favourite quotes is from the Qur'an, which states; 'Certainly, with every hardship, comes ease', and the more I think about it, the more ease we have been given. Going into the consultation, we were all sure I had an Ewing's sarcoma, and if that were the case, I wouldn't be alive today.
-One of my favourite quotes is from the Qur'an, which states; 'Certainly, with every hardship, comes ease', and the more I think about it, the more ease we have been given. Going into the consultation, we were all sure I had an Ewing's sarcoma, and if that were the case, I wouldn't be alive today.
- There is always a silver lining – even in the bleakest
situations. You just have to look for it, and once you find it, hold onto it
and let that be the thing which guides you and gets you through your time of
difficulty.
Sunday, 12 October 2014
The Brave Girl vs The Bitter Girl
“You’re so brave and free-spirited!” I smiled sadly at my
friend, sipping on some more coffee. How
I wish that were true, I thought to myself.
You see, I seem to have lost all hope. Now, don’t get too
worried about me –I do this often; I will pursue a potential cure for my
illness, get my hopes up high, see them dashed, cry for a day or two, and then
go back to square one. And I will find something else, and I will get my hopes
up again, only to see them crumble once again. It’s a vicious cycle, and more
often than not, one that leads me toward a spout of depression, during which I
will lose all hope, do nothing, feel nothing but sorry for myself and the
situation I find myself in, and perhaps most pronounced of all, I will feel
this overwhelming sense of bitterness toward everything and everyone. I write
this week's post on the back end of one of these episodes, and so I apologise in
advance for the upsetting post.
Bitterness. It’s not a great feeling, and unfortunately for
me, it’s a feeling I feel all too often. I see my friends and family achieve so
much in their lives, both professional and personal, and I will feel so proud
and happy for them, and then within a split second, I will feel bitterness –
not toward them or their achievement, but toward myself and my debilitating
situation which leaves me unable to accomplish what I once hoped to. My friends
have gone on to accomplish so much since completing our degrees – they’ve found
jobs, having completed PGCs and Masters, and what have I done with my degree?
Nothing. Absolutely nothing. My certificate is filed away in a folder, of no
use to anyone. I started a second degree in Islamic Studies, completed one
semester, and then found out I was starting chemotherapy, and so that project
got shelved too. Nothing seems to amount to anything, and it’s a very
depressing situation to be in.
And that’s nothing compared to the personal turmoil Faisal
and I find ourselves in. Our lives have screeched to a halt, and where we see
all our friends move on with their lives, get married, have children, we find
ourselves stuck. Anyone who knows me even a little bit, knows the one thing I
wanted most in life – to be a mum. And it’s that one thing which seems like it’s
never going to happen. I see pregnant women in town or pass a shop displaying
children’s clothes and I’m reminded of the greatest loss this diagnosis has brought
me. And on particularly bad days, I sit and do nothing but cry, and even that
doesn’t help. The longing is worse than the bitterness, the fear outweighs
every ounce of bravery and the bleak future overshadows any hope.
And then it’s time to go out into the world again, and I wipe
away the tears and once again put on this facade of the brave, free-spirited
girl who just happens to be fighting cancer.
Lesson of the Day:
- I have no lesson this week – if I did, I would be the
first to implement it and you wouldn’t be reading this rather depressing post.
But this week has just been one of those
weeks – where you just don’t feel like fighting anymore, and rather than pretend like it's been anything else, I thought I'd write honestly. Here's hoping next week is better.
Sunday, 5 October 2014
The Diagnosis.
Perhaps the most frequently asked question I get when I tell
people I have cancer is ‘How did you find out?’, and although the answer makes
for dull reading, I imagine a few of my readers have the same question. But before I get into that, I must warn you: this post will be neither entertaining
nor particularly interesting to some (or most, although I hope not).
Looking back, it’s hard to pinpoint an exact moment when I
started feeling unwell, rather, there are a number of instances which come to
mind, the timeline of each being somewhat muddled up in my mind. The first
instance that comes to mind is before I set out for Race For Life with a group
of friends - ironic isn't it? Me running (and by running, I of course mean walking leisurely,
because let’s face it, I hadn’t run since Secondary School) for raising money and awareness for
cancer, whilst my own one remained undiagnosed. I had been complaining of leg
pains before the race, and was quite hesitant to participate,
although I did manage to finish in the end. That was in the summer of 2012.
Final Year University began in September 2012, and as the
course progressed, I found myself attending less and less. Now, it’s unfair for
me to blame my lack of attendance solely on my leg pains – I had been to two different
universities, and both sets of friends will attest to the fact that I hardly ever attended any lectures and was, as
one so eloquently put it, ‘a lazy butt’. But as final year continued, they
began seeing me only once a fortnight, and in some cases, even less frequently than
that. By the end of first semester, around November 2012, I was in
so much pain I could hardly walk at all, let alone make the walk to and from
the train station and attend lectures on top of that.
It was then that we decided to see a doctor. Now, a lot of
people may ask why I had left it so long – from the first instance of feeling
leg pains to the point of complete immobility around 4-5 months had elapsed,
during which time the pain never really went away. The simple truth of the
matter is this – when you’re 21, the last thing on your mind is cancer, and the
last place you want to be is in a hospital. We put the pain down to sciatic pain
and a generally unhealthy lifestyle – like I said before, I hadn’t run in over
3/4years, ate the most unhealthy of foods, and was generally, to quote my friend, ‘a lazy
butt’.
And so in November 2012, when the pain was at its worst, I
finally went to the GP, and the next thing I knew, I was being scanned left, right and centre. I had ultrasounds, X-Rays, CT scans, MRI scans and a number of
examinations by a number of different doctors, but no one could figure out what
was wrong with me. All I was told was that I had a ‘mass’ in my pelvis. I
distinctly remember walking past an ‘Oncology’ signboard at the hospital and
thinking to myself ‘dear God, please don’t let it be cancer’, although deep
down somewhere, I knew it was. Finally, after a month of tests, I was referred
to The Royal Orthopaedic Hospital for a biopsy, and later, on the 7th
of January 2013, I was told I had Alveolar Soft Part Sarcoma. I was relieved – we all were, but more on that
later...
Sunday, 28 September 2014
The Puzzle.
The folks at UCLH have done a pretty good job at decking out
the ‘Teenage and Young Adults with Cancer’ centre. There are plenty of
activities for patients and their families, which is always what Faisal and I
look forward to when we have appointments.
There’s a pool table, which is pretty cool, and almost
everyone’s first choice of activity. Faisal and I have no clue how to play and
are not very good either. We have no idea what the rules of pool are, so our
game involves trying to sink as many balls as possible with the winner being
the one who sinks the most (except when someone is close by, when we stop and
pretend to examine the play, and make a show of thinking about our next move, when
really we’re just hoping they’ll go away and save us the embarrassment of
seeing how terrible we are).
There is also a foosball kit, which Faisal and I only play
when there is no one else around because of the amount of shouting that almost always
ensues whilst playing. Both of us are very competitive, and I’m surprised I haven't sprained my ankle yet,
given how much I jump around. Both pool and foosball run the real risk of
Faisal and I getting physically violent with each other, so we tend to limit our
play with those (on a side not, cue sticks make very good weapons).
And then there are the less violent options, like cards,
board games (which may sound childish, but trust me, when there’s a good game
of Scrabble or Battleship, there’s
no such thing as too old), and video
games, movies, musical instruments and books and magazines.
And then I came across a 250 piece Where’s
Wally puzzle, which I immediately picked up and insisted with Faisal we finish.
He was hesitant at first, clearly in the mood to play pool (I imagine I had
done something wrong and he simply wanted the opportunity to covertly attack me
with the cue stick), but I managed to convince him, and we set out on the task
of finishing the puzzle before we left for home.
We had completed the edges of the puzzle when my nurse
called me in for my appointment, and of course Sod’s Law would have it that the
one day my appointment was on time, was the one day I wanted it to be late. Nevertheless,
we hurriedly completed the appointment and came back to the puzzle, and for the
next two hours, I refused to leave its side. Come lunch-time, Faisal tried to
convince me it was safe to leave the puzzle to go get some lunch, but hunching
over and hugging the table, I fervently refused, frantically
searching the room for potential saboteurs (clearly I hadn't learnt from my Lebanese restaurant vomitting fiasco). An exasperated Faisal gave up and set out to finish
the puzzle with me as quickly as possible (I imagine he was worried his wife
was going crazy), and just as my nurse came to tell me my medicines were ready,
Faisal placed the last piece of the puzzle in place. There was one piece
missing, of course there was, but we both sat back and marvelled at our
creation, smiling with satisfaction at what had turned out to be a very
productive day.
Lesson of the Day:
- You're never too old for games or puzzles! So enjoy them!
- Once you start something, don't give up at the first sign of an obstacle. Carry on, especially if it's something you're passionate about. The satisfaction one feels after completing a task, especially a hard task (like completing a puzzle, obviously), is amazing, and well worth it in the end.
Lesson of the Day:
- You're never too old for games or puzzles! So enjoy them!
- Once you start something, don't give up at the first sign of an obstacle. Carry on, especially if it's something you're passionate about. The satisfaction one feels after completing a task, especially a hard task (like completing a puzzle, obviously), is amazing, and well worth it in the end.
Tuesday, 23 September 2014
The Mistake.
The number of side effects listed on the chemotherapy trial
sheet was terrifying. They had everything under the sun – from nausea and
vomiting to hair loss and abnormal hair
growth (what the?!) to kidney lesions and stones. Everything and anything,
although the doctor insisted that was only the researchers covering all their
bases. Whatever she said, we all knew it was the only option we had, despite it
only being a trial, and not curative.
So I started chemotherapy on 27th November 2013,
and up till this date, have been coping pretty well, thank God. I’m
experiencing very little side effects (no abnormal hair growth to report as of
yet), although I have noticed if I don’t eat for more than a couple of
hours, I start feeling extremely nauseas and light headed, which isn’t a very
good feeling at all (not sure how much of that is because of the chemotherapy
or because my body is just so used to
me eating all the time...). Either way, I’ve learnt not to go too long without
eating, and am careful not to push the limit I can go.
And so it was probably my own fault on this particular day,
when I knowingly went three/four hours without eating. We had travelled from
Northampton down to London for the appointment, which meant waking up at 6am
and having a quick bowl of porridge for breakfast. We had made big plans of
going to our favourite Lebanese restaurant afterward (an amazing little place
in Kilburn called Zaytoon), and so against my better judgement, I decided
not to eat until we got there. I was feeling brave. It was extremely foolish.
As soon as we sat down and I had the first sip of water, I
started feeling nauseas and light headed. I thought it was a spell I would get
over, and so ignoring Faisal’s advice of going down to the bathroom, I
stubbornly stayed in my seat. Again, so foolish. As soon as the waitress had
placed the crockery on the table, I proceeded to unload the largest
volume of vomit onto the plate in front of me. It was gross, and frankly, I'm surprised Faisal is still married to me, after that display. I immediately felt
better though, but was then tasked with somehow covering up the vomit (I'll spare you the details of what it looked/smelled like, just know it wasn't my proudest moment). Eventually, I
found some tissues which I strategically and artfully placed to cover up any
evidence – until the waitress came back with our food and Faisal told her what
happened. She was lovely about it though and even gave me free lemonade,
although I find it suspicious how every time we’ve gone back to the restaurant, she's nowhere to be found...
Lessons of the day:
- Know your limits. Don't push your body into doing something it is not capable of - the consequences may be extremely, extremely embarrassing.
Lessons of the day:
- Know your limits. Don't push your body into doing something it is not capable of - the consequences may be extremely, extremely embarrassing.
Sunday, 14 September 2014
The Radiographer and His Daughter
“So, is that your husband sitting in the waiting room?”
“Yep, we’ve been married four and a half years now.”
“Long time. Where is he from?”
“India, originally.”
“So are you Indian too?”
“No, I’m Pakistani.”
“My daughter wants to get married to a Turkish guy. We are
Egyptian. I don’t know what to do. What’s it like being married to someone from
a different country? How do you manage? I don’t know what to do. She’s my
eldest. Everyone marries Egyptians in our family. I don’t know what do!”
The Radiographer poked the needle in me again, exasperated.
I flinched and clenched my teeth as he tried again to find a vein. Not an easy
task in my case; apparently I have very difficult veins to find – either that,
or the staff at UCLH are just not very good at finding them. ‘Calm down, man!’ I thought to myself, ‘I
know you’d rather be poking sharp things in your daughter right now, but spare
me, please!’ I quietly cried inside.
Once again, I found myself in a position I did not want to
be in. Maybe I have one of those faces, but for some reason, most doctors and
nurses I come across seem to think I am the
person to spill their life stories to. Now, don’t peg me for a sucker, I know
pity-talk when I hear it – and no, they don’t talk to me out of pity. Doctors
and nurses come across thousands of patients, and to them, I’m just another
name on a list. So I put it down to my baby face – in particular, the baby
cheeks which refused to go away even after I reached and left puberty.
And so he tried again, whilst I explained to him just how
similar Faisal’s and mine’s family backgrounds were. Clearly he wasn’t too
happy with the explanation I gave, and poked another needle in me – this time,
without the ‘sharp scratch’ warning. This one finally drew blood, and the rest of the CT prep was done in
silence. When he’d finally finished, I gathered my things and scurried off back
to my seat.
‘Darn you and your chubby cheeks, Naaila,’ I thought, not
for the first time.
Lessons of the day:
- When someone is in a position to poke sharp things in you, tell them what they want to hear. Just trust me on this one.
Sunday, 7 September 2014
The Parking Ticket.
Walking toward my car and finding that piece of paper wedged between the windscreen and windscreen wiper was probably one of the worst feelings ever. The paper which I’m
referring to is a parking ticket/fine. It was outright depressing. And annoying. And
angering. And made me want to cry.
Now, imagine those feelings at the end of a particularly long
and tiring day, which involved blood tests, delayed doctor’s appointments,
scans, stale lunch and a badly made coffee. I cried a little on the inside. And
then, like any rational person upon receiving a parking ticket, I went through
the five stages of grief. Denial – ‘No, this couldn’t be happening to us, we
paid for a ticket!’, Anger – ‘Screw London! Don’t these heartless people know I
have cancer?!’ (Not for the first time, I was using my illness to try and get
out of a sticky situation), Bargaining – ‘I’m sure if we phone them up, they’ll
understand!’, Depression – ‘Why oh why God is this happening to me, what did I
ever do wrong?’ and Acceptance – ‘Screw London! And screw UCLH! And screw this
darn parking ticket!!’ (Okay, maybe I was still a little angry...?)
So my nurse suggested I should get a Disabled Badge. For
those of you who are unaware of what that is, it’s a card which gives you certain
perks when driving or parking in certain areas. Of course, you have to be
considered ‘disabled’ to actually own one, and although the thought made me uncomfortable, the rational part of me understood that I should apply for one (a
little background information – the main tumour, which is bigger than the size
of a tennis ball, is located in my left pelvis which means I cannot walk long
distances without hurting).
And so I am now the proud owner of a Disabled Badge. I may not consider myself disabled, but my nurses and doctors sure do. No one would think so, looking at me, and I hide it well,
but much like the dosette box, the card is something I grudgingly have to
accept as part of my life now. And when I’m in a particularly bad mood, I abuse the card and scandalously defraud the government as payback for the
ticket I was given. That always cheers me up.
Lessons of the day:
- Crying upon receiving a parking ticket is perfectly
acceptable. Don’t feel like you need to hold in your emotions at this terrible
time.
- Publically admitting your defraud the government may not be
a good idea. Only time will tell.
- Google NCP car parks before leaving on a journey where you may be stuck with expensive car parking. They are a great alternative to the usually extortionate parking charges in and around London.
Sunday, 31 August 2014
The End, Finally.
“Well done!! Didn’t expect anything less.” “Yeah, I knew you
would, no big deal.” “So, when’s the party?” Just some of the replies I
received after telling my family I had passed my final year exams. Not that it
was a big deal for anyone else, but for myself – well, it was huge.
You see, two weeks before my final year exams, I was
diagnosed with a very rare type of cancer. It was incurable. If someone had
told me then that I would complete my university education, I would have laughed. Actually
no, I probably would have wailed and thrown tear and snot soaked tissues in
their face. I did that a lot, back then (everyone was on guard). A lot of
people deterred me from starting my education again; they told me to
concentrate my time and energy on things that ‘really counted’.
Of course, what ‘really counts’ to someone, may not be that
important to someone else. And so, after a break of about two weeks, with Faisal's support, I started
my Psychology degree again. I didn’t attend university as much as I did before the
diagnosis, or sit and study as much, but I soldiered on. I sat exams at different times from my
friends so finished university a month after they had graduated (which consequently resulted in them being blocked on
whatsapp. It had to be done, them with all their end of exam celebrations and graduation preparations!)
Poor Faisal bore the brunt of the majority of the side
effects associated with the decision – he helped me around the house as best he
could (although I’m pretty sure he purposefully messed things up so I wouldn’t
ask him to do them again). He also helped me cook, and he’s a pretty good cook
- when he’s in the mood (again, pretty
sure when he’s not in the mood he purposefully messes up so I get frustrated
and send him away from the kitchen).
But we got through it. Results day for me wasn’t like
everyone else’s – I wasn’t glued to my computer screen, or whatsapping my
friends as soon as the results were out. I was actually shopping with my older
brother, eating a Gregg’s pastry, when I thought ‘You know what, let me check
if my results are out.’ And they were. And I was ecstatic – I had achieved a
First, and the chaotic few months had paid off.
Lesson of the day:
- It’s one of the biggest clichés in the book – but that
won’t stop me from using it: Hard work pays off. Determination is what got me
through my degree, and although it was the hardest thing I had ever attempted,
it was well worth it in the end.
- If something is important to you, take a stand for it.
Listen patiently to others, but at the end of the day, do what you want. We all live our own lives and
we must make our own decisions when it comes to what we feel is important.
- I’m pretty sure Faisal is an evil genius, with all his
cunning antics around the house. Keep an eye on your men, ladies. They’re not
as innocent as we think.
Sunday, 24 August 2014
The Biopsy.
The biopsy was the first kind of procedure I had ever had,
and I was (understandably?) terrified. The idea of going under anaesthesia and
having someone poke holes in me made me feel very uncomfortable; I was
convinced something was going to go wrong and I would flat line (I blame
watching too many episodes of House, you addictive show, you). A biopsy is
basically a small procedure in which a doctor inserts a long needle into the
locale of the tumour, and extracts a sample (or couple of samples), of the
tumour for examination. I spent days fretting over the small details, reading
and re-reading articles online and talking to people who had had surgery
before, but on the day, I felt as unprepared as ever.
I had the procedure at The Royal Orthopaedic Hospital, and
was luckily the first person on the doctor’s list. The doctor who was going to
do the procedure was Indian, and apparently, upon seeing I had brown skin, made
the assumption I didn’t know a word of English. Clearly, my British accent wasn’t
posh enough for him (thanks for that, Hounslow), and no matter how often I told him I was from London, he
relentlessly carried on speaking in Hindi. He did an especially bad job of attempting
to explain the procedure to me – to the point that I was actually looking forward to being put under anaesthesia.
Was this his evil-genius plan all along? Bombard me with Hindi so I look
forward to the procedure? I may never know, but it sure did work!
Waking up from anaesthesia is one of the strangest feelings
ever. It’s like waking up from an unsatisfying sleep – all groggy and
disorientated – multiplied by about x30, and so naturally, Faisal thought this
was the perfect time to start taking
pictures and recording videos of me. He actually does this quite often – he has
pictures of me hunched over a toilet seat in the middle of a vomit and also at
the hospital with needles stuck in my arms. Very mature for a grown man (!)
I had to get over the
effects of the anaesthesia before I was allowed to go home, and so the rest of
the time in the hospital was spent recovering, during which time I became a bit
of a diva (to hear Faisal tell it). I lay in bed doing nothing myself –I crossed
my arms and refused to walk and so was wheeled around everywhere, Faisal fed
me, and when he refused to tie my shoe laces for me so that I could wake up a little
and get home quicker, my older brother did them (whilst I smiled smugly at Faisal).
When I did arrive home, Mum had made my favourite meal for dinner, my younger
brother topped up my plate and glass whenever I made an attempt to move and my
older brother brought down blankets and pillows for me so I didn’t have to
climb the stairs. Not at all diva-like behaviour if you ask me...
Lessons of the day:
- If the time and manner is appropriate – say what’s on your
mind and ask for what you want. I’m pretty sure if I had clearly told my Indian
friend I would prefer if he explain the procedure to me in English, he wouldn’t
have minded at all. He’s a doctor working in the UK for god’s sake, I’m sure he
knew English just as well as I did.
- When going into a potentially embarrassing situation, confiscate
each and every phone which has a user prone to taking embarrassing pictures of
you. Hide it, and hide it well.
Sunday, 17 August 2014
The Worst thing about Chemo.
So I’ve just come back from the bathroom – I was there for a
good 20 minutes. (And yes, I had my phone with me. Let’s just admit we all do
it). I had gone in prepared for a long visit, for there had only been that kind
for the last six months or so.
You see, there are many things about having cancer that
suck. The pain, the increasing number of tablets, the frequent hospital visits
etc etc. And yet, there is one thing that people don’t talk about – and that’s
the monstrous effect of chemo on your digestive system. Charming topic of
conversation, is it not?
The truth is, that the worst consequence about being on chemo
(in my opinion) is the vicious cycle of constipation – increase in laxatives - diarrhoea
– decrease in laxatives – constipation. It’s never ending, and it’s a pain in
the arse (pun intended).
Anyone who’s experienced either state will know what I’m
talking about when I say it’s one of the worst things EVER. It’s legitimately soul
crushing. No, this isn’t me being dramatic. Spending those long moments alone
in the bathroom, hoping no one important calls you so you don’t have to answer
them whilst sat on the toilet, straining to hear the video you’re watching
because you’ve put the audio so low in the hope that no one outside hears, etc
etc: these are all real world issues.
And now you all know the truth. So beware, the next time I
whatsapp you, I may well be in the middle of a very important battle, the
outcome of which will probably be reflected in the response I give.
Lessons of the day:
- The last six months have resulted in the accumulation of a
lot of material with regards to remedies for constipation, both natural and
medicinal (diarrhoea, on the other hand, stops when I stop taking the
laxatives). The main ones which I have found to work for me are listed below:
Natural:
1. Honey
2. Green Tea
3. Fibre (in the form of brown, seeded bread).
Medicinal:
1. Lactulose (which I am no longer on)
2. Bisacodyl
Monday, 11 August 2014
The Dosette Box.
“I’m not an old woman!” I remember heatedly saying down the
phone. “I do not need a dosette box! I think I can remember my own medicines!”
The excuses came one after the other, until I could think of no more. Faisal
listened patiently, as he always does.
You see, he had ventured into Boots (the local pharmacy), and had come across the
selection of dosette boxes they had in store. What’s a dosette box you ask?
Google it, it’s kind of difficult to explain. I had only ever seen my Nan use them, and the idea of me having to
depend on them was a stark reminder of just how many tablets I had to take, and
how often.
So when he strolled into the house with the box, I grabbed
hold of it and started shouting and waving it in Faisal’s face like a crazy old
woman. After I had exhausted all reasons and accused him of never ever listening to
me, Faisal took the box from my hand, put it away in the cupboard, and
reassured me it was only for emergencies, and that I did not have to use it if
I didn’t want to. “Good!” I humphed, and that was the end of that.
Come night, I began the tedious task of aligning all my
medication. The process usually takes a good 5-6minutes. Faisal was in the
other room studying. Come next morning, I set out to do the task again. And
then that night. And then the morning after that. Chemo hadn’t even started,
and I was already feeling the strain of the boring task.
So one night, I tiptoed my way to other room, made sure
Faisal was busy, crept back into the kitchen and picked out the dosette box
from where it sat. I turned around, opened and closed the slots, studied the
design like I actually had a clue on whether it was a good one or not, and finally
gave in. I filled the whole box in about 15minutes, after which I hid it in a
cupboard I knew Faisal wouldn’t look in, and quietly made my way to bed.
I managed to keep the facade up for a good few days before
Faisal noticed that I had caved. He walked into the kitchen one day and saw me having my tablets out of the box, smiling merrily to myself at how easy the
task had become. He caught me out like a deer in headlights. Our eyes met across the room - and not in the romantic way. I refused to break
the stare or look embarrassed – I would not give him that satisfaction. So I
carried on looking at him, unblinking, until finally he smiled and walked over
to the sink and pretended to be busy. “Yeah, you better walk away” I thought to
myself as I followed him with narrowed eyes.
Lessons of the day:
- Never be the first to break a stare, no matter how embarrassed you may be. Nothing good can come of it.
- You should probably listen to someone who has experience in a certain field - be it medicine, administration, accounting or whatever...but at the end of the day, make your own decision. Experience is what differentiates wise people from smart people. Being smart is all well and good, but being wise is on a whole other level.
Thursday, 7 August 2014
The Introductions.
My husband sits opposite me, eating his dinner, rolling his eyes at every complaint I make.
"Writing a first blog post is hard." "Can you write my first blog post?" "You're a terrible husband for not helping me through this tough time."
I've typed and deleted about five different beginnings now, so you know what, we'll just have to make do without one. No witty, quirky or funny introduction to break the ice - let's just go straight into who I am and what this blog is about.
My name is Naaila. That's pronounced 'Ny-la' for all those furrowed brow people attempting to decode that. I'm 23, married to a pretty great bloke, and have no kids, although not by choice - you see, this thing called 'cancer' got in the way of that. You may have heard of it; it's this pesky little thing which decides to interfere with life plans.
I was diagnosed in January 2013, and up till a few weeks ago, didn't publicise the news - why bother? People would be sympathetic for a few moments, and then life would happen - and no one would remember. Not that I mind - in fact, in my experience, I've found those moments to be rather uncomfortable for both parties. And the messages and calls. Oh boy, are those awkward.
So why bother publicise the news now? Well, a few reasons actually. You see, I've been through a fair bit since the beginning, and have learnt a lot in this last year and a half. What's that phrase? 'Experience is the best teacher...' or something along those lines. Yes, that applies. So why not share lessons? I've also been extremely bored recently. The diagnosis has meant that I am unable to work, and there is only so much shopping, painting, photographing and whatsapping a girl can do. Also, I've been feeling rather creative lately - I've always loved writing, and the hubby insists I'm pretty good at it, so why not?
My life isn't exactly the most interesting one - it's pretty normal, actually - I tend to stay at home a lot, I visit friends and family when I can, I pursue certain hobbies (which I'm not very good at) and I travel down to London to visit the hospital every three weeks.
So nothing too exciting, but I will attempt to write when I can, share what I can and most importantly, teach what I learn.
And who knows, with a hint of artistic license, writings on cancer and other stuff may even make for some interesting reading...
"Writing a first blog post is hard." "Can you write my first blog post?" "You're a terrible husband for not helping me through this tough time."
I've typed and deleted about five different beginnings now, so you know what, we'll just have to make do without one. No witty, quirky or funny introduction to break the ice - let's just go straight into who I am and what this blog is about.
My name is Naaila. That's pronounced 'Ny-la' for all those furrowed brow people attempting to decode that. I'm 23, married to a pretty great bloke, and have no kids, although not by choice - you see, this thing called 'cancer' got in the way of that. You may have heard of it; it's this pesky little thing which decides to interfere with life plans.
I was diagnosed in January 2013, and up till a few weeks ago, didn't publicise the news - why bother? People would be sympathetic for a few moments, and then life would happen - and no one would remember. Not that I mind - in fact, in my experience, I've found those moments to be rather uncomfortable for both parties. And the messages and calls. Oh boy, are those awkward.
So why bother publicise the news now? Well, a few reasons actually. You see, I've been through a fair bit since the beginning, and have learnt a lot in this last year and a half. What's that phrase? 'Experience is the best teacher...' or something along those lines. Yes, that applies. So why not share lessons? I've also been extremely bored recently. The diagnosis has meant that I am unable to work, and there is only so much shopping, painting, photographing and whatsapping a girl can do. Also, I've been feeling rather creative lately - I've always loved writing, and the hubby insists I'm pretty good at it, so why not?
My life isn't exactly the most interesting one - it's pretty normal, actually - I tend to stay at home a lot, I visit friends and family when I can, I pursue certain hobbies (which I'm not very good at) and I travel down to London to visit the hospital every three weeks.
So nothing too exciting, but I will attempt to write when I can, share what I can and most importantly, teach what I learn.
And who knows, with a hint of artistic license, writings on cancer and other stuff may even make for some interesting reading...
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