Happy Cancerversary

On this day one year ago, life as I knew it changed forever.

I had been told after a short spell of illness that there was metastatic cancer in my body.

Just like that, boom everything changed colour, taste, feeling, my world as I knew it over in a 20 minute doctors meeting.

ARE YOU FUCKING SURE

sprang to mind

I DON’T WANT THIS

THIS ISN’T PART OF THE PLAN

Also I had dealt with enough medical shenanigans having had a traumatic miscarriage three months previous.

I was shell shocked, that this young brown girl had been picked to have cancer.

How did it manifest inside me in such a short amount of time?

I have barely lived! 

I felt disgusted because I did not know anyone going through it, because everyone I knew that had cancer was DEAD.

Cancer = Death no wonder I spiralled into panic.

Thanks to modern medicine and my stubborn persistence to live i’m still here give or take some intense nerve pain and a restricted arm.

I’m at the end of my natural prognosis (6-12 months without treatment) so everything from here on out is ‘extra time’ baby.

Women remember everything, it’s so annoying that I remember my diagnosis date along with lots of other useless information like my first date with Gareth.

Women use these dates as annoying markers for goodness knows what, just to add extra admin to our busy little brains.

As I write this the tree in my back garden is full of cherry blossom once again, I feel emotional as I compare the two springs, one where I was sick and full of uncertainty and one where i’m diagnosed as sick and still full of uncertainty.

With my G – June 2018

So much has happened between these two seasons I am no longer the same girl, my fertility and future out of my hands, uncertainty once again casting shadow over my day to day life.

It has been quite the challenge to accept that I cannot plan my future like I can plan menus, yet I feel totally and utterly comfortable living like this now.

A year on after trying a couple of target drugs which have stopped working I am now undergoing a new combination of Chemotherapy, Immunotherapy and Targeted therapy for my particular circumstance.

At Maidstone Hospital having my second round of combination drugs June 2019

I have been non responsive to target drugs yet no new mutations,  the combination is called ‘IMpower 150’, cool name right?

The initial fear, CHEMO, visualising sick people and bald heads made me shudder, but I have cancer through no choice of my own so must look to overcome and conquer my fears and work through this new chapter that I have quite frankly been blessed with.

This combination has proved to show positive results and brand new on our beloved NHS.

I recently had a break from writing and work commitments as chronic pain took hold and robbed me of my attention span and ability to physically write, walk and carry out the simplest of daily tasks.

I am improving and responding to this new treatment everyday and sharing my vulnerability through this whole process has completely……. IMpowered me

Ending on a terrible joke because my sense of humour has also come back.

Ha. xxx

Bristol – May 2019

Full Circle

Round and round we go, life is like a series of circles. 

So here I am one year on from the most extraordinary year where life slapped me alive.

End of January 2018 I was newly engaged to my love and I experienced a devastating miscarriage which led to a spell of ill health and a cancer diagnosis, life as I knew it changed forever.

I have been looking back and so very sad for the previous version of me, as I look to just be stable and live in peace now, innocent dreams now tainted as I carry this new cancer world with me.

Where I am now is very testing as I have experienced true pain as a symptom of the cancer, a tumour causing brachial plexus compression, nerves in my right arm are being obstructed and I have lost some mobility due to this.

Feelings of fear and anger have surfaced of how my body is capable of working against me like this, like a betrayal of sort. 

This experience has been mentally testing as I have had to learn to be patient with daily mundane tasks, let alone cooking and writing. Feelings of shame has been a huge factor to challenge as my mind wonders what people will think as I am a restaurateur and cannot even hold a spoon properly.

On top of this the synthetic drugs that are helping me cope generally numb your brain down and come with a whole host of side effects to counter the good they do to control the pain.

Funny that one year on after quite a good spell of stability and being very independent and busy living that I am having a taste of the cancer patient life again.

I am currently on a cocktail of pain drugs and have just had five sessions of radiotherapy to my neck.

I found this process traumatic, attending hospital for days and days for tests, sessions, scans and appointments, the faint baby blue walls, the crusty faded uninspiring art, the gaunt faces of patients, full of sadness and despair.

Hospitals are places that supposedly heal people yet everyone there looks sick of life and ready to throw in the towel.

The sessions although short and very quick were painful, I would have to lay on a hard table with a custom made face mask to keep my head still during the sessions. The nerve pain shooting through my arm constantly reminding me why I was there in the first place.

Life throwing me those fire bombs, triggering my post traumatic stress disorder as I flash back to previous hospital admissions.  

I recently hit a milestone, I made it to the grand old age of 30, which without medical intervention would not have been possible.

I marked the occasion with loved ones with my favourite food and drinks at home, yet I had this dull pain in my arm at the time reminding my that my life is limited, that the next decade is not guaranteed.

Despite all of this, I am here to move forward, this resilience I do not know where I am finding it but through all of this darkness is hope, that things will change, that everything is temporary.

My life will keep moving and appearing different and my emotions will change, my pain will change, I will see improvements and I will see decline.

I know I have golden moments ahead where I will laugh so hard to the point of tears, I know I will achieve great things, I will travel and continue to be inspired by life.

I thought I would be getting used to this thing called life but every damn day something new blows up in my face and humbles me that I know nothing and have so much to learn. 

Life ever transient running in circles.

Time to Reflect

I have always loved Christmas, yes people, us ‘brown people’ celebrate christmas too as I so often get awkwardly asked.

This time of year is especially important for me as I have watched each season turn for the first time in my entire life.

There is a tree in my back garden which I watched blossom with the most beautiful blush pink colour when I got diagnosed with cancer in spring.

April 2018 with my dear friends Sarah and Sharan shortly after the diagnosis

It flourished in summer when I reached health stability and got married to my love and leaves fell into Autumn when my emotions released and I felt more at ease with my shortened, uncertain future.

Leaves are now rotting in Winter, signalling the end of this turbulent and transformative year heading towards new beginnings, life around the corner.

The seasons we experience here are so very magical, I am truly embracing the winter and these darker days, its sad that it takes disease for me to stop and appreciate how much of a blessing life is and how important I am to myself and others.

Our modern surroundings tell us to show and tell, spend and be excessive with food, drink and gifts which most of the time creates an empty void for many who do not achieve the ‘perfect’ christmas experience.

Achieving the perfect experience is unobtainable, it’s an illusion in our heads, created by grotesque, money grabbing retailers and marketers who I used to work for in another life.

Mine and Gareth’s subtle Christmas tree this year

This year I am full of gratitude for being here to experience this season, I am most excited to reflect upon my experiences no matter how painful and extreme some may have been.

Some miraculous lessons have come from this year and I feel cliché ‘conscious’, for the first time in my life.

I always had wisdom, I told people whats best and what to do which makes me a fantastic restaurateur, but a reflective cancer patient with a message, can it be so?

I am learning everyday, to be vocal and speak up for myself, if I didn’t get a private ultrasound scan on my neck my prognosis could have been much worse if not terminal from the get go.

I have learnt this year that I am totally worthy, my opinions, my thoughts, my being.

I have purpose and things to achieve for myself and others, big or small we are all miracles, teaching each other how to live, how to love, how to hurt and how to be, every single one of us.

Hurting has been a huge lesson for me, the pain has taught me to love harder.

We are all here on the same journey, side by side whether you choose to see this or not.

We are all here together, this disease has changed me, I needed to learn from this experience and its taught me in a short space of time what is important.

I realise how powerful my mind is, how it caused such physical panic attacks within my being from sheer fear of the unknown, it could also be a contribution to my diagnosis.

Ancient medicine considers disease of the lungs to be linked to grief and sadness, I had to explore this as I have mentioned previously I lived a significant life before the diagnosis.

I experienced my fair share of these emotions in my life from such a young age, I felt abandonment and extreme pressure to grow up and react to nightmare scenarios for any young teen.

I have been working on releasing these emotions and become more loving to myself and those around me because a life threatening disease is literally shouting at me to.

Now I’m not saying disease is self-inflicted, I’m merely drawing on my own very colourful life experiences and taking ownership.

It’s totally a control thing, I’m not in control of a lot of me physically and medically, what I am in control of is my mind and my thoughts, that’s where the real battle lies.

This will hopefully transcend upon my body and give me a chance to live and love.

Wishing you all a reflective winter season of deep loving thoughts towards yourself and others, light in darkness, hope over fear as we all look towards the new year together xxx

Alicante moonlight

Acceptance

Fear of dying, fear of leaving this world, my physical being will turn to dust and loved ones left behind.

The weird thing is that from the day we are born, we are all dying.

So why are we so afraid of death and talking about the end, as if we are all entitled to an unlimited existence?

In my ancestral home, Punjab, Pakistan my grandfather Chaudhry Fazal Hussain Cheema died last year, his body in a coffin, paraded in the village for locals to say their goodbyes and he was buried and showered with rose petals immediately.

This follows a period of mourning and the grief processed by his doors being constantly open for people to give respects and in most cases share their desperate grief together.  

My grandfather Chaudhry Fazal Hussain Cheema died in 2017

In the UK however we use terminologies such as ‘went to sleep’ or ‘passed away’ we draw curtains on coffins in quite a cold and distant manner, we do not speak about death and find it difficult to express the process.

Our fears are internalised and when a loved one dies, we cannot cope with the thought and will do anything to not address the emotions.

I have recently attempted to come to grips with my mortality and slowly but surely I am beginning to accept my physical being and my whole soul. 

A little inspiration to face life and death from my Punjabi roots in this western world.

Not just the stage 4 lung cancer but all of me, every single part, I am accepting the hardships, trials and tribulations, I am accepting the traumas as tough lessons.

I am acknowledging the strengths, bravery, joy, loves and the great qualities that have come from my life experiences.

My very good friend and spirit queen Amy Charlie calls me an ‘old soul’, as soon as she called me this, it clicked.

I have always felt mature, older than my peers, I had to grow up very quickly in my teens and play the unofficial father role to my beautiful sisters.

So as hard as it is to say, why not have an old people’s disease to match?

Life is essentially a series of experiences you don’t actually think of your physical being, it’s all in the mind, memories, reactions, stories, it’s all in the head.

When you die, people do not remember what clothes you were wearing or how many things you owned or titles you accumulate, people remember your spirit and how you acted.

Your soul and energy never dies and I truly believe this as I recall how I personally grieve for people close to me.

Sharon Inge, my second mother died in 2013 but her lust for life and electric energy is still very much here

In my moments of sleepwalking through my teens and 20s I would dare to tell people the truth. This level of authenticity and honesty is something I have always struggled with as it proved unpopular at times.

Fast forward to now I am willing to channel this, I am being brutally honest with myself and sharing my experiences for others to read because I have started writing for the first time and cannot seem to stop!

This started as cathartic therapy to manage irrational thoughts and desperate emotions that come with a major life shortening diagnosis.

By sharing my words with others I feel less alone, I feel…accepted.

I am accepting my miscarriage, I am accepting my stage 4 lung cancer diagnosis, I am accepting that life isn’t fair and I hope this helps others to not feel so ‘sorry’ when devastation occurs.

Courage is something I have always had but never acknowledged because I was too busy surviving. Now I realise everything I do, every step I take is full of COURAGE to the end days. 

I suppose at the age of 29 I am learning lessons people do not learn in their lifetimes, for this I feel incredibly lucky and sad at the same time.

I actually grieve for the sleepwalking version of Saima, before the diagnosis, you know the one that gets up without a nose bleed which reminds her that she is a cancer patient.

But there is a lesson here somewhere, a lot of reflection this past year on who I was and who I have become.

I heard somewhere that suffering brings wisdom, yes I am me because of my experiences, so why hide, why show the edited version of myself to others?

Some may call this ‘over sharing’ but when you face death like this you become invincible.

From the moments I sat swollen in A&E corridors with my love Gareth, confused as to what was attacking my young body.

To now where I experience health stability and glimmers of looking forward to my immediate future with my loved ones.

I am aware I have wisdom and thoughts to share now and sometimes it takes a cancer diagnosis to unlock your true potential.

So thank you and no thank you cancer for bringing me to the present and teaching me how to LIVE NOW.

As strange as it may seem, slowly, acceptance has arrived.

Food is love

To share food is glorious

To taste food is a gift

Food is love

I realise this now because for the first time in my life I experienced stomatitus, extreme inflammation of the mouth and lips.

I was heartbroken, one of my five senses totally ruined and in bits I cried and felt real anxiety at meal times.

I was desperate to nourish my ill cancer body, my mouth too painful and odd to enjoy the luxury of normal tastes that I would take for granted previously.

Gareth would have to watch me struggle to eat then convince me to abandon my meal as he saw how much pain I was inflicting upon myself.

I am very stubborn and tried my hardest at meal times to consume.

I am Punjabi so why can’t I eat a spicy curry, this is in my DNA. I have eaten my mothers ancestral Pakistani cooking since eating solid food, I mourned for my former self before the cancer diagnosis.

Growing up, my home was aggressively centered around food no matter how rich or poor we were my mother would always feed us and guests, guest is god.

I say aggressively because south Asian women are not to be messed with, especially when it comes to feeding you.

My mother would list all the foods possible under the sun until you admit defeat and she would then come out of the kitchen with an unexpected meal or snack.

Of course you would eat it all, it is almost like being kidnapped, no choice but to eat, a kinda cool situation really, scary at times but no complaints.

Now back to stomatitis, I would sit there my belly hungry, my brain hungry for taste sensations. I am a restaurateur, food is my livelihood.

I felt like a sorry shameful mess, how can I run a Pakistani curry house and not taste  food, let alone curry?

This is some sort of messed up masterplan, the one true joy in my life….

GONE

JUST LIKE THAT

My oncologist had started me on a high dose of Afatanib, the targeted therapy drug to work me down. That is what they want to do, to get you to the most ‘tolerant’ but effective point with the treatment.

At this stage I was truly struggling with the most unsightly skin rash and sore mouth, even my lips would hurt if so much as a tomato went near them.

I lost an extreme amount of weight due to the anxiety, I just love food so much, I eat it 3 times a day and always finished my meals.

I made a career out of it and now I was withering away in a sorry heap at home, starving for taste.

In the next clinic session the oncologist took one look at my skin and made the decision to reduce the dosage.

My mouth took sometime to restore and tadah, I can eat chilli for now, phew!

Yes the Pakistani curry lover can now eat her shaandaar home food!

So please, here I share a recipe close to my heart, Gajar Muttar, it’s so simple.

I keep putting it on the menu at Masala Wala Cafe because I adore it so much.

Its does not sound like much but the delicate sweetness of the carrots against the pungent spices bring me genuine joy and happiness.

I love you food what a privilege to work with you and taste you whilst I can today, I love you I love you.  

If you are going though conditions or treatments that affect your taste buds omit the chilli, garlic and any overwhelming flavours. This can still be a delicious, cheap and unforgettable treat.

Power, nourishment and flavour to you all!

Gajar Muttar – Spiced carrot and peas (serves 3-4 , if i’m there 2 people)

Ingredients

Carrots thinly chopped in rounds 1kg

Green Peas 300 gms

1 Cinnamon Stick

Half bulb of Garlic blended or finely chopped

Ginger 2-3 cm blended or finely chopped

1 white onion blended or finely chopped

1 chopped green chilli

Turmeric 1 tsp

Chilli powder half tsp

Coriander powder 1 tsp

Garam Masala 1 tsp

Mustard seeds 1 tsp

Coriander for garnish

Salt to taste

Method

In a saucepan fry mustard seeds then quickly add onions and lightly fry till golden

Add garlic, ginger and a little water as to make sure it does not burn

Add dry spices and salt until all binded and a splash of water, cook and stir for a few minutes

Add prepped carrots and cook for 10 minutes or until carrots are soft

add peas to the softened carrots and cook for 3-5 minutes

Top with chopped coriander

Serve hot with basmati rice or flat breads

Panic!

I write this and I feel the cortisol hormones running through my body, PANIC!

When your mortality has been served up to you your brain can do crazy things, mind wanders, I have always had a creative mind full of ideas so when life changing news such as disease had been delivered to me I literally went MAD.

Fight or flight is a natural human instinct, its survival, we are all animals and have amazing complex brains, in my life I have had to exhaust this more so than your average person. 

Yes I lived quite an extraordinary life before my stage 4 diagnosis so these coping mechanisms have been more apparent in my makeup.

Because of the life I led I come across as a ‘toughie’ i’m a fixer, a problem solver, I’m a successful business owner, a natural leader.

But this all stems from fear of cultural judgement, fear of my family falling apart, fear of losing our home and fear of not getting food on the table.

I had to grow up fast from the age of 12 to support my Pakistani mother and three sisters after a very messy divorce, I had to step into an unofficial father role.

We went through devastating poverty and difficulty, life was challenging at times but we had each other and that was my strength and driving force when I felt down and at times alone as I was the oldest of the siblings.

My beautiful sisters Sanam, Ikra and Nafeesa, dear world please look after these girls, I have done what I can now and they are thriving like the most magical flowers you have ever seen, they amaze me everyday with their wisdom, beauty and grace despite what life tries to throw at us.

With all the side effects from steroids and radiotherapy earlier this year I felt like a piece of meat, there were moments I wouldn’t talk and google cancer for hours. I was a cancer patient at the mercy of the doctors, not the powerful, independent Saima that I know.  

Mid April this year, at home, it was 4am and I couldn’t sleep, racing thoughts about my death sentence running around in my head, I went to get up and passed out.

When I came round I said to Gareth

‘I think i’m dying, i’m dying, call an ambulance’.

Of course someone in my condition, he didn’t hesitate and called the emergency services, we both didn’t recognise that I was having my first panic attack.

We went to A&E (a familiar place) and the doctor bowed to my irrational thoughts that what was happening to me could be the cancer and ordered a CT scan and casually sent me home with liquid morphine. 

I have experienced quite a few failings with mental health in the NHS, I rang my oncology nurse one day and mentioned ‘tingling hands and feet’ and she expressed that it simply isn’t a side effect of the targeted therapy drug I was on and left it at that.

The breakthrough was when I went back to my GP, I essentially had to self diagnose post traumatic stress disorder (PTSD), she further added that I was suffering with panic disorder as well. 

She got to work prescribing me Escitalopram a selective serotonin reuptake inhibitor (SSRI) and suggested counselling therapy.

Me, tough old me, Saima, now an anxious ball of panic, how is this so? I never showed signs of anxiety, I always felt strong fixing problems around me, noticing errors and tackling them head first.

I realise now I was dealing with the cards I was dealt, these scenarios and situations I was conditioned to deal with, it didn’t make it right or healthy, we all need peace of mind.

When cancer turned up, my cup was already full and I didn’t have a lot of room to deal with such a heavy diagnosis.

Now my physical and mental health has improved because despite what life throws at me I am conditioned to take it in my stride, this is a true blessing and goes to show how resilient us humans are, and what we are capable of.

In the height of my panic I was experiencing attacks several times a day, especially at night. Through my sheer determination to learn and fix problems, psychological therapy, medication, meditation, exercise and diet I have a much more ‘comfortable’ existence. 

I am currently being put through the ultimate endurance test in all aspects of my life, I know I can’t ‘fight’ this disease, but I am determined to live.

Deptford Dreams…

There is only one Tristan Scutt on the planet, fact!

Back in 2016 at the Timeout Love London Awards, I bumped into him and I knew of his business Little Nan’s Bar. I followed him fondly watching the brand grow from a pop up to permanent fixtures in the south London area.

We were award winners, me picking up best Brockley restaurant and him, best Deptford bar. Enthusiastic about food, drink and all things hospitality we bounced off each others straight away chatting and dancing the night away.

Now those of you who haven’t heard of Little Nan’s its a kitsch and camp cocktail bar, unpretentious and community led, think leopard print walls and disco, good times to be had.

Tristan’s hearts in Deptford, the high street in particular where you will find him sifting through the gems to be had in deptford market or viet rest slurping on a wonton soup.

I fell in love with his passion for business, his can do attitude, making Deptford dreams into reality.

He has a true passion for community, a one of a kind guy and I had the honour of being his business partner and working with the man for the last 18 months.

We had an idea which transpired from a pop up we collaborated on. A craft beer/cocktail bar with Pakistani street food, why not, it’s London baby, anything is possible!

Deptford Esquire was born, we just needed to find a suitable site, we scouted the SE8 area and stumbled across an ex shoe shop, number 29. I had such a good buzzing feeling I came home and told my partner ‘Gareth we are gonna open a bar!’

Illustration of my late grandfather Ch Fazal Hussain Cheema who passed away August 2017. Deptford Esquire branding.

Seeing as I had already launched a restaurant overnight in 2015, poor Gareth was not surprised that I would be taking this brave and exciting step, its me all over.

After operating as a pop up initially in October 2017 whilst waiting for the local council to grant an alcohol license we were really excited to put plans into reality in the new year with the bar, investing and getting ready for a fruitful 2018.

It wasn’t to be, whilst in a haze after the cancer diagnosis in April the bar traded for a little longer until I came out of the fog and the news of stage 4 lung cancer really started to sink.

The reality we faced, financially as someone who is self employed became apparent, the security net is non existent in this game. This was not part of the business plan, I only started getting good at this recently, having taken the leap from being an employee for retail companies 4 years ago.   

The bar needed investment not just financially, but it needed time to be invested in it and I could not provide either of these things.

Late April this year, facing radiotherapy sessions to zap the primary lung tumour, I had to call Tristan, one of the toughest phone calls I have ever made in my life.

‘Tristan, we are gonna have to shut Deptford Esquire down’

‘What, how?’ He seemed totally shocked but accepting, he always respected my opinion.  

‘Tristan i’m not working at the moment and that’s having a financial impact,I cannot commit to Deptford anymore.’

All our hard work, planning, our beautiful south london dreams, over in one phone call, just like that.

See it’s the whole picture with independent businesses, they are run by real people, individuals trying to make a living and if money comes that’s only a good thing.

My motivations were to give my immigrant Pakistani mother an employment opportunity, that’s the real reason why I started my first restaurant Masala Wala Cafe.

Photoshoot for Munchies by Poonam Duffer, mother Nabeela Muqadiss and me

Tristan, partied so hard running pubs for over 15 years that he now runs his own bars inspired by his amazing late nan to keep him on the straight and narrow. You will now see him at his bars sipping on cups of weak tea, checking emails. Where i’m sure the late night venues he used to run brought on late night activities which can take its toll after some time.

Following the emotional phone call I frantically sent him messages and emails with irrelevant information, any information to do with Deptford Esquire, I was in a state of panic, the belief was that I was going to die…. immediately!

I wasn’t well at the point of diagnosis, he had seen first hand my physical state, well I haven’t died so here I am reflecting on the experience.

There is no right or wrong way to run a business, organisation whatever you are doing because life’s gonna come at you anyway, you either bounce back or surrender.

From this experience although our vision was cut short and our union as business partners over due to my health, I have gained a life long friend who inspires me everyday. Mad as hell, artistic and super talented Tristan Scutt.

Cancer you are a bitch and definitely weren’t part of my business plan but i’m here waiting to see what i can learn from you.

Masala Wala Cafe lives on thanks to my beautiful sisters and family team, still serving up Pakistani home cooking, this is currently my primary income.

Its a scary time for all but we face it together in business and in health.

Yes that’s a working traffic light in Little Nans Bar Deptford